Simon Honours

The Invisible Nation A Journey into Handicapped and Out of Sight Jeremy Schreiber Dedication To my parents … My love and gratitude for all that you are and all you have done go beyond that which words can describe. I could not have asked for better parents than you. To Melissa Simpson … My unicorn of sunshine, you make everything better. To Todd Adest … You are my personal savior. To the Men of MDI … Men. I am Schreiber. This journey would have been painfully different if it were not for each of you. Complete. Contents Something Was Very Wrong What Makes Us Invisible? Staring at Asses and Crotches Surprise, You're a Slob Now Don't Park Like an Asshole Handicapped Accessible Isn't Weed Does a Body Good What Would You Do If Your Partner Became Terminally Ill? Cab Driver as Spiritual Diagnostician Fundamentals of Caring Mentor … Discover … Inspire Be Your Own Healthcare Champion Why Can't I Get an Answer? Building Your Guide to Thrive Always Start at the Top You Are Your Best Advocate Fundraising/Foundations Conclusion ALSisms Resources About the Author Follow Me Bonus Downloads Endnotes –1– Something Was Very Wrong S OMETHING WAS wrong and no one could tell me what it was. Over a nine-month period following my first symptoms in March 2017, I had been tested for everything from allergies to Zika by every type of specialty doctor I could find in New York City (NYC). It took spending a week in Rochester, MN at the Mayo Clinic's Second Opinion Program for me to finally receive the diagnosis of amyotrophic lateral sclerosis (ALS) on January 5th, 2018. The "A" word had been lingering at the back of my mind throughout my search for answers, though it kept getting pushed further back each time a new bit of information surfaced, or I came across some new research. I did all I could to logic away from my greatest fear. Hearing "this is ALS" hit me like a ton of bricks. My parents were with me and my wife was on the phone from NYC. What now? We were in shock. The doctor handed me an envelope full of pamphlets that none of us wanted to read and sent us home with a nightmare we didn't want to face. Over the coming weeks, the gravity of the situation forced me to accept my new reality very quickly: The prognosis wasn't good, and the average survival rate for post-diagnosis is only two to five years. I didn't have time to make my way through whatever stages of grief my therapist told me I was supposed to experience. I needed to throw this life into overdrive and hurry up—but hurry up doing what? Whatever it was going to be had to happen, and fast. Questions flooded in from everyone and everywhere. My own brain was proving to be the greatest and, quite frankly, the least helpful source. I had a choice—climb into bed and pull the covers over my head or say "fuck it" and fight this thing headon. After a few days of deep depression, I took a hard look at the reality of the situation. I stood in my apartment on crutches, staring into the floor-length mirror in my hallway, and told myself I was going to fight this with everything I had. There were mountains of information, yet it all said pretty much the same thing. I had no idea where ALS had come from, as there was no family history of it. With ALS, there's no real way to manage the symptoms, and statistically you have only two to five years to live and to get your affairs in order. Surely not every person with ALS sat around waiting to die. I needed to find out who the pioneers were and what they were doing to beat the statistics, then build on that. All this while holding down a marriage, a job, and managing my own sanity. As the symptoms progressed, my world began to shrink. Traveling around the city became increasingly more difficult, as broken curbs, heavy doors, and inaccessible buildings created new obstacles for me to manage and to break my spirit. The unfriendliness of how the world is built would now add an unwelcome layer of complexity to this uphill battle that I was facing. The Americans with Disabilities Act (ADA) would surely come to the rescue, ensuring I could easily get in and around the places I needed just like everyone else. Fat chance. It soon became clear to me that ADA compliance is a box-checking exercise for builders and landlords alike. Much to everyone's surprise, ADA compliance doesn't actually mean handicapped usable. The list of places I could go unassisted was shrinking by the day. Doors were now more difficult to open, cabs were more challenging to get in and out of, and wide-open spaces lacking something to grab onto were terrifying to traverse. My days were planned around the fewest possible steps, as nothing was handicapped accessible the way I needed it. Come to think of it, how many people do you see around your town with wheelchairs or walkers? Far fewer than you first imagined, I'm sure. I was being kicked to the curb by society and becoming invisible to the world. I was silently being told, "Fuck you. Your kind doesn't belong here." My intention in writing this book isn't to elicit sympathy. Rather, I want to shine a spotlight on how our society treats those of us who have disabilities by categorically ignoring, overlooking, and otherwise making us invisible. ALS was simply my VIP backstage pass into this experience. ALS, also known as Lou Gehrig's disease or motor neuron disease (MND), attacks certain cells in the brain and spinal cord that are needed to keep our muscles moving. Early signs and symptoms of ALS include muscle cramps, muscle twitching, weakness in the hands, legs, feet or ankles, and difficulty speaking or swallowing. As the disease progressed, I lost any real function of my hands, and speaking became a struggle to the point where I was frequently asked to repeat myself. Dressing, feeding myself, or any sort of self-care was out the window. I started off this book using voice-to-text, and now I rely on eye-tracking technology to get my thoughts onto paper, or to speak. As I mentioned, most people with ALS live for between two and five years after diagnosis, though about ten percent survive at least ten years. What does ALS feel like? Think back to the coldest day you can remember being outside. How did your arms and legs feel? Your fingers and toes? Stiff until they warmed up, right? With ALS that stiffness never goes away, it never improves. Scratching your head was once so satisfying, and now you need the help of someone else. If you can get their attention that is. And if they can understand what you're asking for. It's not all doom and gloom, though. Parking is great, I can behave like a lecherous old man and say just about anything to anyone, and fortunately there's no pain. But the reality is that until there's a cure, I'm living in a long-term hospice. —2— What Makes Us Invisible? T HE PEOPLE on this planet, like me, who don't look like everyone else, not in an Aryan race kind of way, but in an upright, bipedal, self-sufficient, and ambulatory kind of way due to illness or injury, are invisible in the eyes of our healthy peers. We become invisible when we can't participate in the conversation and look you in the eye while sitting in our wheelchair; when the restaurant claims it is accessible because the front door is wide enough, but you can't navigate the dining room; when a speech defect causes your audience to ignore you by mistaking your unintelligible speech for stupidity or drunkenness. These are a few examples of how we become invisible. Please understand, kind reader, that I've no intention of claiming that the average ambulatory Homo sapiens will go out of their way to ignore those of us afflicted with something that causes us to look physically different. What I'm stating, based on my recent but limited experience, and after living in NYC for ten years, is that the world would rather not acknowledge the existence of those of us who are disabled. Recognize anyone here? If you're one of those few well-intentioned and generally allround good people that can't possibly judge a book by its cover, let me give you some insight into how this typically goes down. I'm rolling along the sidewalk, no doubt being schlepped by one of the many people kind enough to endure whatever activity I've convinced them is necessary to participate in, and you come walking along toward me. I know you want to sneak a look at me to ascertain just what malady I've been plagued with. By nature, we're all voyeurs and you'll want to look. However, since our mothers taught us from a young age not to stare, your initial reaction is to avert your gaze, which is fine, though please understand that I can feel you looking at me. When you realize that I've caught you staring, you quickly change your gaze to look me in the eye and smile, as if you were saying to yourself, What the hell is wrong with him? Oh shit, I got caught looking. Quick, I'll put on a fake smile, so he doesn't know that I was gawking. Why, you ask, is it that I can see so clearly what you're thinking? Because I was guilty of it myself. Playing handicapped Frogger I devote a section here to addressing certain behaviors and to point out that when you walk down the sidewalk, or anywhere for that matter, you have an obligation as a responsible human being to look where the fuck you're going. At the risk of sounding like an angry old man, there are important though unspoken rules that govern good citizenship on the sidewalk. While I've been watching you diddle your phone for a half block, I know you'll look surprised and partly apologetic when you bump into me. While I was using my crutches or walker, I was already unstable and couldn’t dodge you easily. This was certainly going to be worse for me than you. I've fallen countless times in public and it's never graceful or pretty. But now that my 120 pounds of self are seated in a 450-pound motorized power chair, I've significantly changed the odds in my favor. Now, when I'm not paying attention, you might end up with a crushed toe if you bump into me. In the same category, earning the first-place prize for offenders of the rules of the sidewalk, are those douchey ex-frat boys who walk together in a slop mob, similarly dressed in backto-front baseball caps, T-shirts with some snappy comments, and ill-fitting jeans, shoulder to shoulder, spanning the width of the entire walkway. I appreciate the power walk with your friends in an attempt to exercise off what you're about to do to yourself at the boozy brunch, but you're taking up the whole damn sidewalk. Now that I'm driving a small Sherman tank, I have multiple targets to mess with, which makes my ability to make this encounter awkward for all of us greater than your ability to stop me. Maybe my hand will accidentally slip off the joystick of my power wheelchair, sending me careening into the middle of your douche gaggle. I'm not angry that you're still able to enjoy your lives, while mine has been turned upside down. I'm upset that you're oblivious. What? Is there something on my face? It feels as though the designers of this world developed cities to be built to make sure you can't navigate them and prefer you to stay locked away in your home out of sight. This is just another example of how people using wheelchairs are treated like second-class citizens, or even worse, ignored completely. My first notable experience of being categorized in this way was at Newark Airport, coming home from a trip to Denver. A man and his son were walking through the baggage claim when I noticed the man had dropped his parking ticket. I tried to scream for him to turn around and pick up his ticket, but he and his son looked at me and turned back around to keep walking. I knew they hadn't understood what I had said. When I finally rolled close enough to them, I said: "What I was trying to tell you was that you dropped your parking ticket. I have ALS and it affects my speech, not my intellect." What I also thought was, This is a teachable moment for your son, you inconsiderate prick. To emphasize my point, there was an event in mid-April 2019, when my parents took me to an outstanding concert held in the back room of a beautiful piano shop in northern New Jersey. The majority of the audience was made up of people with some sort of tie to ALS. The pianist himself was going through the early stages of the diagnosis process. His unsteady movements and rapid exhaustion reminded me of my own experiences during the earliest stages of this disease. He performed beautifully for just over an hour, but then he told the audience he didn't have the strength to continue. I understood completely. After the conclusion of the performance, several people from the ALS community gathered around my parents and me to say hello. Most I had met before, though a few were new faces. One woman in particular, who declared that her forty-seven-year-old son had ALS, turned to my mother, and asked, "How old is he?" referring to me. Lady, I'm right here, alive and in front of you, I thought. Smartly, my mother retorted, "Why don't you ask him?" It's possible that the woman assumed I wasn't verbal, like her son. It's possible she thought I was deaf. Or, more probable, she was an inconsiderate cow. Mistake numero uno that people make when meeting me for the first time and seeing me in this chair is that I'm not intelligent or not capable of communicating. You erode my dignity when you talk about me in front of me. You make the feeling infinitely worse when you speak to me using baby talk, such as "good job!" or "there you go" or "c'mon, just one more itty-bitty bite more." Fuck you. Just for that, you're getting a chapter in my book, and then I'm going to ruin your day by soiling myself. Hard. People who have been a part of this category longer than I have will certainly have more input on this subject, though all you need is one day to understand the challenges. In the limited time I've been part of this category, I can tell you for sure that the world tries to ignore us. If my arms worked well, I would give them all that juicy Italian "up yours" salute. —3— Staring at Asses and Crotches "Do I give you the ass or the crotch?" ~Fight Club~ W HEN I was seven years old, my parents took me into the NYC subway. I made an observation at that tender age that since I was so short, all I could see were people's butts. Now, thirty-two years later, I'm back in the same position—this time not due to my age or height. It's not always bad, depending on who the butt belongs to. The real challenge is being out of most people's line of sight. When you're in a wheelchair, you're frequently bumped into, knocked around, tripped over, and spilled on. Unintentionally, of course, all followed by a forced apology, as if to say, "I'm sorry you're in that chair, but you're in my way." Awkward hardly describes it In March 2018, I was sent to a client meeting in Irving, Texas. The facility is the equivalent size of a Walmart with two additional floors. I could still walk with forearm crutches, but I knew I would surely tire out before I reached the conference room. To get around their office, I needed a motorized scooter. I had rented them before without much difficulty, though this would be the first time in a business setting. The process went like this: I called my usual scooter rental place and asked them to deliver the scooter to the hotel where I would be staying. I then had to find an Uber with a big enough trunk for the scooter to fit in, not to mention having a driver who would be willing and able to haul this thing in and out of the trunk. Uber didn’t seem to have any vehicles that accommodated a wheelchair. I would later learn why this was the case. When booking the Uber, I allowed sufficient time for any theatrics or mechanical difficulties, but the driver muscled the scooter into the trunk and we were off to the client site. While the meeting was important, I was more interested to see how a corporate office would accommodate the flame-red scooter and my novice driving skills. As it turned out, the two days I was there weren't difficult physically, but I found being confined to this scooter frustrating from a business interaction perspective. There were nearly thirty people attending this meeting from across the United States, and when my team and I arrived in the lobby, it seemed as though everyone attending had arrived at once. Negotiating the registration desk was the first challenge, as I had to stand to talk to the security guard. This may not seem to be a big deal to someone who isn't in a wheelchair, but from a seated position you have to reach above your head to hand over your ID, and you have to contort awkwardly to be seen by the camera taking your badge picture. You soon realize this world wasn't made for you. The elevator was the next challenge. The doors opened and there were already people in the elevator, and they weren't getting out. Shit. Now what? "Watch your toes, I'm coming in," I warned. In hindsight I should have backed in, making it easier to exit, but who doesn't enjoy breaking a few cultural norms? Try facing the wrong way next time you're in an elevator and watch the looks of discomfort on the passengers' faces. Navigating the hallways and corridors of the sprawling carpeted ocean of cubicles proved to be fairly easy with the scooter. We arrived at the conference room and found that several of the attendees had already taken their seats. Normally this would be the time for me to make my way around to say hello to the people I knew, but a quick survey of the room showed that traversing the chairs, briefcases, and shoulder bags strewn everywhere would make the greeting ritual an impossibility. Thirty people were squeezed into a conference room that was meant to hold twelve. Although having the scooter meant I had my own seat and a nifty basket that held my belongings, the dimensions of the scooter made me overly obtrusive in the room. Self-conscious and distracted, I also realized I was locked into my parking space and would be unable to excuse myself easily. What if I had to use the bathroom? Forget about it. Ask them to turn up the heat and hope I sweat the urge away. The meeting itself went well, while I tried to push the upcoming challenges of the rest of the day out of my mind: Navigating back to the lobby elevator, would the button be difficult to reach? Would there be closed doors in my way with no one around to open them? How exactly would the bathroom work? Will I find the right type of Uber vehicle again? Heightened anxiety naturally comes along with this lovely diagnosis, and this experience made me realize why. As the meeting wrapped up, everyone began to pair off, shake hands, and make plans to move their projects forward. Except me. I was trapped at a seated height while everyone talked above my head. I was sort of already used to this, being 5 feet 7 inches tall and the shortest of my friends, but this was a humbling experience, being overlooked and excluded. Turns out there's a better way Not wanting to ever experience being left out like that again, I was determined to find technology to put me back in the game. I took an aggressive approach to this illness, buying things I thought I would need before they became an emergency. This included, among other things, an extremely sophisticated motorized 450-pound wheelchair with the capability to raise the user to standing eye height. This feature alone makes a world of difference. I no longer miss out on being involved in a conversation, as I can look the other person in the eye when speaking to them. And that's a great thing, as I've subsequently become aware of a subtle nonverbal conversation-ending technique people use, which may be unintentional, but was infuriating to me as the recipient. At normal chair height, your conversation counterpart has to bend their neck down to look you in the eye. Once they decide they're done with the conversation, regardless of whether you are or not, simply by standing up straight and casting their gaze over your head, there’s nothing you can do to keep them engaged with you. I've been the unfortunate recipient of this technique more times than I care to count. While I prefer to give the other person the benefit of the doubt that their insensitive behavior was unintentional, it does make me feel invalidated and invisible. Never again. Now, with the seat elevator function on my new power wheelchair, I'll look you in the eye. The process of obtaining this amazing feat of engineering took no less than six months. This was partly due to the complexity of the wheelchair itself and the high level of customization required, but also due to months of no response from the wheelchair clinic itself. This seemed to be par for the course with all of the departments we have dealt with at Kessler Institute in West Orange, NJ, all of which was later addressed in a conversation with their CEO. Sitting at my eye level, you notice far more than one would at standing height. This is neither a teachable moment nor an experience anyone needs to go through to have a complete understanding of the human experience. However, this is a great way to learn a whole host of nuances about your surroundings, such as the thin layer of feces covering all of NYC that you're destined to traipse through. Or how you're now at eye level with the homeless, certain dogs, and the projectile flush spray from most toilets. Albeit far from the mind and view of my former able-bodied self, the world is filthy at my new level and there will never be enough hand sanitizer to wash the filth away. If I ever forget that I'm invisible, someone or something will inevitably remind me. —4— Surprise, You're a Slob Now I WAS endearingly given the term “metrosexual” during my late twenties and into my thirties. Living in NYC in the prime of my life, I dressed like I had stepped out of GQ magazine. It was entirely possible that I looked like a total douche, but I owned the look, the walk, the attitude, and I carried a line of bullshit that made dating enjoyable. I joined a competitive sailing team out of Oyster Bay, NY. That program eventually grew into the Oak Cliff sailing program led by America's Cup and Volvo Ocean Race captain Dawn Riley. Add a budding running career to my social résumé and I had plenty to brag about. However, this was all about to come to a grinding halt. First things first Being robbed of my fine motor skills first, I started to cut out many of the fun activities and worked on finding answers. While that was occurring, I began looking for shortcuts to simplify my daily routine. Maybe I don't need to shave today. I brushed my teeth this morning, so why do I need to do that again? Tying shoes is overrated. Those shortcuts can turn into habits, and before you know it, you're three days beyond your most recent shower, wearing a Snuggie, and you have a full pee bag strapped to your leg. With ALS, the muscles throughout your entire body stiffen up, making a full range of motion impossible, or at the very least extremely difficult. For me, the things that deteriorated first mostly had to do with my fingers. The daily tasks I had difficulty with were simple, though it was less obvious that they would present a challenge. Dexterity was one issue, reach was another. When it came to the daily grooming ritual, reaching the top of my head to comb my hair was easily overcome by sitting on the toilet and leaning on the sink. This accounted for the front and top, but what about the back? Treat it like a hillbilly trailer park lawn and trim the front, fuck the back. Shaving anything became a dangerous struggle. The angles and techniques critical to ensuring I didn't commit suicide each morning were a real concern for me as they are for every man of beard-growing age. As my fingers began to cramp into the closed-fisted claw-like shape they remain in now, my electric razor wouldn't fit in my hand any longer. So, it was welcome to the 1970s. Fortunately, hipster scruff was stylish, and I could get away with a three-day or four-day growth and still look reasonably presentable. However, postshave, opening that small, expensive tube of skin cream was a nonstarter. Nothing tweezable was tweezed. Brushing my teeth became more difficult, though the electric toothbrush was a godsend—until I couldn't hold that anymore. Although NYC breeds a particular uniform consisting of as much black as possible, I had always needed to differentiate as best as I was able. I had amassed quite a wardrobe, ranging from sharp custom business attire to casual weekend gear that was always a step above the norm. But now when it was time to get dressed, my focus changed from what looked best for the occasion to whatever was easiest to get on my body. Button- down shirts were difficult, not only to get on over my shoulders because of my limited range of motion, but the buttons themselves proved impossible. Being the clever and innovative man that I am, I used a combination of a long shoe horn, the back of a chair, and a brilliant device called a button hooker to get my dress shirts on. This was quite a spectacle. Pants were slightly easier until I began losing grip strength, which also made putting on socks all that more difficult. It doesn't sound particularly difficult until you consider how snug your socks are, how high they come up your leg, and how quickly you want to rocket them out of the window when the heel doesn't sit right where it's supposed to. Sockless became my new fashion statement for as long as my ankles could tolerate the cold. Tying laces became far too cumbersome for me, eventually necessitating alternative footwear. Mind you, I'll never, under pain of swollen feet, ganglion cysts, pussing edema, and longer than appropriate toenails, ever purchase or wear Crocs. Mario Batali and six-year-olds—I'll leave these for you. Ready to walk out of the door? It's in your best interest to plan every step you're about to take. Where will you put your keys so that you can easily get them out when you get home? Is that jacket pocket where you put your cell phone too tight to dig it out when it rings? Which earphones will you use to answer the call if you can reach your phone? Screw the phone, that's why there's voicemail. Don't forget your wallet. Where are you going to place it so your barely usable hands can access it later? How will you get your wallet out of your pants? This one is fun when you need to ask your friends, or better yet, a stranger, for help. Thirty minutes later you're possibly ready to leave the house. Since driving is out of the question, what are your options? Phoning a friend works once, maybe twice. The New Jersey Transit system has short buses for its Access Link; however, the local county-run Access Link or Access-a-Ride doesn't leave the county, so it's on you, my poor invalid friend, to coordinate the transfer. Far be it from them to give a shit when they dump you in a supermarket parking lot to wait for the next county's van to show up. And I hope that you're not obviously handicapped, otherwise chances are you'll be passed by in favor of a more able-bodied passenger. Uber is no better, given its track record of discrimination against handicapped passengers. But even if you do manage to get a cab to stop for you, what type of vehicle is it? An SUV? There's no chance you're getting into it on your own. This generates all sorts of questions: Which side of the taxi do you get into? Do you get out on the same side that you got in? How are you going to switch sides inside the cab on your own? With vehicles lower to the ground, how will you stand up on your own? I should add here that through the goodness of the hearts of some cabbies, they will do anything possible to help you into and out of their cab. It's exhausting being me All this planning and awkward shuffling takes a toll on my energy level throughout the day. What gives way in favor of important appointments is self-care. As much as I tried to stay neatly groomed and looking sharp, I was finding less and less time each day to pay attention to things that weren't absolutely critical. As my appearance took a hit, my self-confidence began to circle the drain. The feeling of helplessness was overwhelming, with the daily routine needing careful choreography for even the most basic tasks. Every step of the day needed to be planned carefully, but not too far in advance, since overthinking the day might kick off a bout of anxiety. And not too late, causing me to rush, getting hurt, and then ultimately being late anyway. I continually found myself operating in a world that couldn't and wouldn't accommodate my needs. What no one tells you about the journey into becoming handicapped are all the small things you must figure out for yourself. Sure there are books and blogs and social workers to guide you, but your journey is an individual one and it's a clusterfuck of unwanted surprises. For example, who would have known that getting stuck inside a T-shirt being pulled over your head could set off a panic attack? Or that you'll no longer be able to scratch an itch on your own? Or worst of all, could you imagine not being able to hug a loved one back? It's painful watching your friends and family awkwardly figure out the right way to approach you, to not say the wrong thing, and not hurt you. Just hug me, touch me, I won't break. I need physical contact more than ever. ALS patients are often referred to as being "locked in" for the reason that the disease robs you of the ability to communicate. There are stacks of technology helping me overcome many of the initial challenges, such as the Tobii Dynavox PCEye Mini eye tracker that I'm using to write this book. Twenty words per minute are as fast as this technology will allow me to "type" with my eyes. Considering the average person can type around 50 words per minute and can speak at a rate of over 120 words per minute, I'm seriously struggling to keep up with written and spoken forms of communication. However, the pace at which symptoms change makes these bits of technology obsolete as fast as we can find and acquire them. It's all downhill from here As the disease worsened, the independence and strength that had made me the man I was, started to wither away. I was finding excuses to not leave the house and to not break from my routine that gave me what little comfort and normalcy that was possible. My walking speed slowed, my balance faltered, and crossing the street unassisted now became insurmountable. I frequently questioned my own ability to make it through the day. Am I stable enough today? Is the wind too strong and going to knock me off balance? Are the sidewalks busy and will I get bumped into? Can I wait for someone to open the door before me? This was only a portion of the mental checklist I went through each time I took a step. Without crutches or a wheelchair in the early stages, there were no obvious signs I had a handicap or needed help until I asked. When I did ask for help, I was scowled at or blatantly ignored, presumably because I looked healthy. Shaking an angry fist at Mother Nature One of the last business meetings I attended in person was at the office of my number-one client in Jersey City, NJ. The office building is beautifully situated on the western bank of the Hudson River, but it's windy as fuck and causes walking problems for even the most sure-footed person. I struggled my way out of the Uber and began to traverse the hundred or so feet toward the large glass double doors into the lobby, where my colleagues were waiting for me. The wind was howling, and the shape of the building's entrance only magnified the frequent gusts. Laptop bag on my shoulder, I was being spun around every which way. I needed something to grab a hold of to steady myself. The wall at the iceskating rink during my first few times of learning to skate sprung to mind. I flattened myself against the wall of the building and decided I would wait for the next lull in the wind, then inch toward the doors. I pressed my hands flat against the brick wall behind me, grasping the texture, looking for any place to grip that would steady me. I contemplated calling one of my colleagues to come peel me off the wall and drag me to the safety of the lobby, but my phone was unreachable. I could just see my watch poking out of my sleeve, alerting me to the fact that I was about to make the team late. I was trapped. Pinned against the wall for what felt like an eternity, cautiously inching my way toward the doors, I was making poor progress. Only one or two of the passers-by noticed I was standing there, but to them it must have looked like I was one of the smokers who usually huddled in that filthy corner of the entrance where the leaves and garbage swirl around. Finally, I managed to shuffle close enough to the door and someone offered to open it for me. Only the two co-workers I was meeting knew what I was struggling with. I had kept it under pretty tight wraps from the company I worked for and my clients, not because I was afraid of anyone knowing what I was going through, but because I wanted only to focus on my job and to not let this become a distraction. That day dealt a crushing blow to my spirit, ego, and any sense that I was going to overcome this easily. Hobbling down "Detritus Alley" Food is an important part of my life. I refuse to use the nouveauhipster schmuck chic word "foodie" to identify myself because, frankly, it has no actual meaning anymore. It's been diluted by every Instagram and Twitter influencer wannabe to the point where the word means nothing more than someone who is discerning of the food they eat. What's important is my personal food experience, such as the smell and flavor you get from an overstuffed medium-rare mushroom swiss burger with brioche bun, which is pure ecstasy. Wash it down with an extra-dirty chilled Hendrick's martini and it won't matter if the world comes down around you. Unfortunately, as the strength and dexterity in my hands continued to diminish, picking up that burger, the martini, or utensils in general, became difficult to handle. Soup was a catastrophe. Food was dropping out of my hands, my lap was generally full of detritus, my face was covered in dried bits of evidence of whatever I had eaten, and I was embarrassed. More than that, I was ashamed, not of the disease I would later be diagnosed with, but of the mess I appeared publicly as, and even more so I was mourning the slow loss of the dignified and proud man I had grown into. Eventually, I stopped being so concerned by the quality and types of food I was eating and focused on finding food items that were easy to open and easier for me to eat. The less preparation required, the easier it would be to feed myself. But even that little bit of independence began to slip as the weakness began to make its way up my arms. That juicy hamburger now needed to be cut into pieces for me so I could spoon-feed myself. This, as anyone in the burger-loving world knows, is a sacrilegious way to eat a burger. Drinks also became difficult to manage. When you ask your waiter for a straw to accompany your martini, watch the panic flash across their face as they try to evaluate how rapidly the night is about to turn into a shit show as you guzzle what's essentially a full glass of gin like a frat guy showing off. One of my favorite restaurants is Avenue in Long Branch, NJ. Not that the food is particularly exceptional, but because it's right on the beach, is wheelchair accessible, is a stylish room with soaring ceilings and stunning décor, and it has a well-curated Eastern European waiting staff as vapid as they are pretty. When it was my turn to order, I requested the burger to be cut in half and their signature cucumber gin gimlet to be served in a rocks glass rather than a martini glass. The waitress scurried off and came back with a concerned look on her face. "Sir, I'm sorry, but the bartender said he won't put that drink in a rocks glass," she said, in an overly apologetic way. I knew this wasn't her fault. I tried my hand at helping her understand the severity of the bartender's statement, replying, "If you wouldn't mind, and I tooootally know this isn't your fault, please impress upon the bartender that your customer is in a wheelchair and can't hold a martini glass. If you feel you can't, then I will, and it will involve the manager, the town, and it will be a very different kind of conversation." I had my drink the way I needed it a few minutes later. Once a source of great pleasure, food has now become a frustrating daily annoyance. I no longer look forward to eating, since every food type comes with its own set of challenges. Being fed by someone else is not only a degrading and infantilizing experience but becomes a mess. This shouldn't require a dissertation in applied geometry, though the basics seem lost on many folks. When it's time to feed another person, some basic rules apply. Think about the game where you feed a baby and you pretend the spoon is an airplane delivering a precious cargo of food. Approach the runway, line up centered with the mouth, level out, and insert spoon into the mouth. Watch out for the teeth on your way into the hangar, and don't, by any measure, graze the cheeks, plastering food cargo outside the drop zone. During this process, food inevitably gets everywhere. I beg of you, please refrain from picking droppings off me/the table/the napkin and inserting it back into my mouth with anything other than the appropriate utensil. Jamming multiple fingers into my mouth only makes this already degrading experience that much worse. Besides, you have been pushing me around all day, and I know you haven't washed your hands. By the time I'm done, I look like a product of those fed-up parents on a plane that gave up caring somewhere over Racine, WI and let their terrorist children destroy a galley kitchen full of snacks, leaving the clean-up job for someone else. Taking pills was simple enough at the beginning. I would open the pill bottle, dump everything into my hand, and gobble them down like a reverse Pez dispenser. Over time, the number of pills I had to take increased, and the shapes and sizes changed so much that the apartment began to look like a Vitamin Shoppe store. When I came across an article touting the benefits of some new plant or bizarre vitamin, I ordered it and added it to the daily regimen. Then the color of my piss began to change with whatever new supplements I took, which isn't a big deal typically, since I’m fairly used to lighter or darker shades of yellow. However, when you look down and green comes out, you tend to panic, as I did. Had I caught something from that one-night stand with the creature from The Shape of Water? I thought we were being safe. It didn't matter what effect the supplements had—I was determined to try everything all at once. Eventually, the pills weren't going down as easily anymore, and it was taking longer to finish them. My father came up with a brilliant idea of purchasing "00" capsules online and jamming as many pills as possible into a single capsule. This drastically reduced the quantity I had to take each day, but even this became difficult, necessitating that we crush everything up in apple sauce. Maybe the feeding tube isn't such a bad idea. ALS presents its own unique challenges to eating and not just the food-handling issue. Once a properly sized morsel of food is placed in my mouth, I now begin the challenge of chewing and swallowing. My tongue is losing strength and control, my cheeks get in the way, and I salivate uncontrollably. When I manage to chew the bit of food sufficiently and decide to swallow, it's a crapshoot whether I'm able to get it down or it gets stuck on the roof of my mouth or on the very back of my tongue. Both options cause a panic response and I end up gagging violently. This triggers my eyes to water, my limbs and torso to cramp, my nose to run, and excess saliva to come out. Not to mention some unpleasant noises, which I have no control over. This happens with every meal. For the unfortunate folks outside my immediate family that get to witness this spectacle, I watch them through my watering eyes as they avert their gaze, hoping the scene I'm making quickly comes to an end. I know you feel helpless in that situation, and you wish there was a way you could help, but be patient, as most of the time I just need to ride it out. What does help is covering my mouth, not in a smothering-me-with-a-pillow kind of way, but just enough to prevent any projectiles from crossing the room. It's more of a dignity play than anything else. Plus it ensures you and your clothing are protected. This chain reaction has subsequently caused me to be selective about where and when I eat. Being at home is safe but being out in public or with my family and friends is highly concerning. Knowing the probability of this problem occurring, I frequently find myself declining the rest of the meal in fear that continuing will disrupt the occasion. When I feel my throat begin to tighten, or my tongue gets tired, I know it's time to sit back and take a break from eating, or it will turn into "The Jeremy Show." Despite my reservations about eating out, on Mother's Day 2019 we took my mother to Catch 19 in Red Bank, NJ as part of a weekend of pampering, appreciation, and great eating. This restaurant was quite the Jersey scene, with highly styled decor, incredible food, and overly loud music. It's the exact style of place I would have dragged my buddies to when things were good. While the volume of music coming from the live band six feet away from our table made it impossible to hear each other, my mother pointed out that it also drowned out the gagging and choking noises I was about to make. Garbage in and garbage out The alternative to this wretched experience of eating is to have a feeding tube placed in my stomach. Many of the PALS (People with ALS) I've spoken with felt the feeding tube significantly improved their quality of life, effectively ending the struggle to eat and take medicines. While they can still eat normally, this gives them an option when they are tired or sick. Clearly my selfimage is important to me, and I've been quite satisfied with the one frontal protrusion I have already. However, having lost over 30 pounds since this all started, I was by now a sickly 100 pounds. I needed the tube. I toughed it out long enough, thinking I could eat enough calories by mouth to keep me full while putting on the much- needed weight. However, I was choking more frequently, the excess saliva was uncontrollable, and I was finding myself hungrier more frequently. There's no award for having struggled the most while eating, so I needed to make this tube happen as soon as possible, especially with medical journals saying that mortality rates are 3.37 times higher for patients that are underweight.1 I knew I was walking on thin ice. After reaching out to several gastrointestinal doctors, I found I couldn't get a simple consultation inside of a month. Who knew July was the high season for feeding tube installations? I began to panic. With the mortality rate and statistics being what they were, I calculated I wouldn't survive past the end of the year. Being handed a diagnosis with a short expiration date forces you to face your own mortality on almost a daily basis. Every decision becomes about either making yourself more comfortable or getting your affairs in order, so your loved ones aren't saddled with the burden of whatever you leave behind. Refusing to become a statistic, I wanted every fighting chance I could. Having friends in medicine can be useful in situations like this. Unfortunately, they are all in the wrong specialties: podiatry, anesthesia, dermatology, and even one who works in a fancy vagina spa. That concept blew my mind. Was this akin to sending your dainty Q-tip-shaped Mr. Fluffikins to the doggy spa to get his nails trimmed and his anal glands squeezed out? Is there a pick-up and drop-off service for lazy vaginas that don't wish to take a walk into town? If you receive a gift certificate to this spa, what message should you gather from the gift giver? If an app hasn't been invented for this industry, a disservice has been done to the entire vagina-owning community. However, clearly that expertise wasn't going to serve me in this situation. Randee Rosenberg has been a close friend for over fifteen years and has been working in the operating room for almost as long, so I hoped she would offer an easy solution. I texted her asking what I should do to accelerate this process, or in case I took a turn for the worse. Without hesitating, she insisted I go to the emergency room. No way was I handing my already slim chance of survival to some bleary-eyed medical school resident at the end of a thirty-six-hour shift. After some creative maneuvering around the local physician pool and learning a few key phrases that made a few gatekeeping office managers snap to attention, such as "failure to thrive," I had myself an appointment two days later in one of the area's premier gastrointestinal medical practices. The following week, I was wheeled into an operating room at Morristown Medical Center. One hour later I woke up with a second body part I was capable of using to do the helicopter. Men, you know what I'm talking about. If you have forgotten, ask your son. I can easily say this was a good decision. The weight I've gained is helping me sleep better, I'm more comfortable since I'm not all boney, I'm less depressed, and I'm regaining strength. It's not all fun and games, though. While nothing prevents me from "eating for pleasure" as it's called, I must get the majority of my calories through the tube, which is a rigamarole in itself. This requirement sucks the fun right out of food. The culinary journey began with four "feedings" spread throughout the day. Each feeding consisted of a 250 mL container of a beige slurry of essential nutrients and amino acids made by our friends at the Nestlé Corporation. Mornings and nights, the regimen of medications are pulverized, diluted, and funneled into my gut. I didn't miss the pill process. Once we began adding 5 mg of liquid THC to my formula each morning, meal time just became a lot more fun. The feeding fun ended abruptly when I started getting nauseous immediately after each feeding. There are several theories on why this occurs, though at first glance it seemed obvious, as the formula was all chemicals. That and I may have been fed too quickly. It's as if your entire meal, including the drink, suddenly lands in your stomach. My stomach had become a laboratory for food tolerance. After trying two different formulas, also from Nestlé, and failing to eliminate nausea and diarrhea, we took the advice of some others with tube feeding experience and began blending my food. Although this allowed us to control everything I ate, it was a fucking mess, not to mention a huge waste of food with all the experimentation. Unfortunately, it's not as simple as making your usual dinner and then scraping your plate into the blender. No amount of high-powered blending in your turbocharged Vitamix will help get that steak through my feeding tube, let alone out the other end. You must consider each attribute of the food, such as solubility in water, viscosity, calorie density, nutritional value, propensity to bind or loosen (yes, that's what I'm referring to), and of course paying attention to allergies and sensitivities. The best part is that if your caregivers can't cook for shit and habitually burn water, it won't matter, since you won't taste it! Blending my food proved unsustainable, not only due to the amount of effort needed to produce each meal, but also the inability to travel with the ingredients and equipment. So, after all the trial and error with my poor tummy, we finally landed on a feeding-tube-friendly formulation of real food. Real, actual food. In fact, it's called Real Foods Blend. It came in a hermetically sealed bag and was covered by insurance. Why does my formula look suspiciously like my dog's food? Up, up, and away! There's one aspect of my hygiene regimen that thankfully doesn't require human intervention—going to the bathroom. Nothing is more comforting than the familiarity of your own toilet in your own house. The height, the shape, the privacy, and most importantly the predictable quality of the toilet paper. There's nothing worse than encountering the single-ply shiny and nonabsorptive quality of Scott's found at most workplaces. You may as well use a page from the New York Post. I know what you're thinking—if his hands don't work, how does he wipe his ass? Great question. This was one of my greatest concerns as my dexterity diminished. There's a brilliant invention that European asses have been enjoying for centuries: the bidet. Simple, hygienic, environmentally friendly, and gives your morning constitutional a "how do you do!" Before moving back into my parents' house, I ordered bidets for every toilet in the house. The controls were on a panel firmly mounted at the back-right side, requiring a contorted twist of my torso to reach. What I didn't account for was the stiffening of my shoulders and arms making it increasingly more difficult to reach the controls. But, hell, I'm determined to struggle because the end result is refreshingly satisfying. Knowing I had some upcoming travel, the "toileting" process as it's called in the healthcare world, was a concern while I was on the road. As a grown man I wanted nothing to do with someone else wiping my ass. I considered a few options to avoid this degrading scenario. I could save it until I was home from the trip, eat only things that were constipating, such as steak and hard cheeses, or I could meditate away the need to go. None of these options being ideal, I found an exciting alternative to a probable trip to the hospital. The Japanese toilet manufacturer Toto has created a handheld, battery-operated portable and oh so delightful little bidet that works wonders when traveling. Nobel Prize material, definitely. —5— Don't Park Like an Asshole S UPPLYING A sufficient number of handicapped-accessible parking spaces is a requirement for all publicly accessible buildings. The number of these that each building's parking lot is required to supply is calculated by the peak number of handicapped vehicles likely visit the building at any given time, subtracted by a convenience factor of the average number of rainy days in that zip code, resulting in at least 35 percent of handicapped visitors being forced to park somewhere far less accessible. Just about anyone with a doctor's note can obtain a handicapped placard. Whether you have googled yourself into having fibromyalgia, your therapy peacock can't walk long distances, or you feel generally entitled, you can ask your doctor to write you a prescription and get yourself premium parking complete with bragging rights. Congratulations, you scammed the system. Now you have signed yourself up for a new set of rules to live by. You may be temporarily disabled and are considering asking for a handicapped hang tag from your doctor. You'll be assigned a blood-red placard to hang from your rearview mirror, so everyone knows you needed elective bunion surgery from years of sausaging your edema-ridden feet into a too-small pair of high heels. It's not you, it's what I think of you No handicapped placard or license plate? Then stay out of my spot. And, for that matter, stay out of my bathroom stall. Your feet probably don't reach the ground anyway. What probably isn't obvious to the average person is the exhausting amount of preparation and labor that led up to our being able to leave the house and arrive at this spot you have been eyeing. Those of us in legitimate need of this privileged spot suffer enough as it is. Of course, if you need a gentle reminder of why you shouldn't park in my precious spot, the local meter maid will gladly issue you a ticket. If you have hit the jackpot, you may get to visit your car in the local impound lot. Helping a meter maid find those parking offenders is my contribution to making parking great again. I understand you’re being lazy or wanting to park as close as possible because it's raining heavily, or that you'll "just be a minute," but I can promise that you'll think twice about parking in my much-needed space after liberating your car from the police impound lot. Understand there's a special place in hell for your lazy ass right alongside Hitler, robocallers, and whoever invented that impossible-to-open plastic packaging. I've often considered creating a sticker as a badge of honor for the offending parkers—something to help other drivers understand the type of person you really are. Something along the lines of "I abuse the crippled." Yes, using those words exactly. The sticker would be printed on that impossible to remove, easily frayed material, ensuring a certain degree of permanence. As an alternative, my sadistic and very close friends Laura Hickey and Pat McCartney suggested keeping it simple and to key a big dick on the side of the offender's car. For legitimate handicapped drivers, there are lessons here for you too. As much as you hate the non-handicapped parking in our spot illegally, it doesn't entitle you to park terribly either. Simply park between the two blue lines, otherwise I have to figure out how to maneuver around your terribly parked land yacht with enough space to extend my van's ramp and roll myself into the lot without scraping the paint off your doors. It's difficult enough being us, living this life filled with pain and suffering, so let's make a pact to make our lives easier for one another, shall we? Short bus fun With all the handicapped-accessible transit options out there, my least favorite is the county cripple coach or short bus. These stripped-down, rusted-out, and repurposed bread trucks of yesteryear are a sad excuse for safe, reliable, and dignified transportation. No one involved enjoys the experience, van drivers included. Your job sucks, I get it. You get $12 per hour to haul my unhelpful body to and from my various appointments, hoping for some semblance of normal conversation from your passengers, which will never come. It's a lonely existence for each of us, I assure you. However, don't forget, I'm a human being and expect to be treated with dignity. If you don't, I'll be sure to use my endless amount of free time figuring out ways to make your job worse. Did I forget to fully close my pee bag before I got into your van? Maybe I messed up the appointment dates and you have to drive me home, but not before unloading me once or twice. As a driver responsible for the well-being of the disabled and elderly, be conscientious about where and how you park your massive van. Your argument that you'll only be in front of the entrance for a minute is a gross misjudgment of time (namely mine), and space (namely yours). Handicapped vans in other countries leave much to be desired. The idea of passenger safety isn't high on anyone's list of priorities to be solved. Broken shocks, flimsy tie-down straps, doors secured with an old leather belt, and entrance ramps at unusually steep angles all make for an ass-puckering, real-life roller coaster. When I used to ride the bus in NYC, there was occasionally someone in a wheelchair looking to board. It amazed me that the city had accommodation for disabled passengers on public transit. I would later come to learn how limited this offering was. The process of getting the wheelchaired person on and off the bus was nothing short of impressive. The driver had to get out, lower the bus, flip out the ramp, get the person into the bus, tell people to move from the handicapped seats in the front, flip-up their seats, and then go through the painful process of securing the person to the bus. A well-trained bus driver and an accommodating herd of passengers could whip through this process before the next traffic light change. While my fellow able-bodied passengers and I watched this charade with wonderment, the underlying annoyance of this time-sucking inconvenience was written on our faces. The only feeling that was left was selfishness that I'm complaining about being late while this guy is stuck in a wheelchair. Looks like I learned a hard lesson. —6— Handicapped Accessible Isn't "The person who designs a house should be forced to live in it." ~Fred Schreiber~ S OME PRODUCTS are built with intentional design omissions, such as the Microsoft Surface tablet, which had only one USB slot. Useless. Others are designed in a vacuum with no input from the user community, such as my personal cannabis vaporizer, the Pax 3. It's beautiful to look at but manipulating it with my hand is another story. It's also useless. One thing is for sure, careful consideration for a wide range of users isn't commonplace among the things we use or places we go every day. Minor nuances you encounter each day as an able-bodied person become insurmountable obstacles for the disabled community. A heavy door to an office building without a push-button door opener, for example. Who was this built for? Much of the design I've encountered recently is unusable for me, and I would imagine also for the majority of disabled people. What would be the incentive to thoughtfully design products and environments that allowed all people to use them? The answer is none. Zero. Zip. Zilch. Nada. Why would there be? There's no positive return on investment to add another grab handle or install a push-button door opener. Forget about the disabled. How many could there possibly be anyway? Turns out there are enough of us to make ourselves heard and get laws like the Americans with Disabilities Act (ADA) modernized and made more inclusive. According to the US Census of 2010, 18.7 percent or just north of sixty million people in the United States are disabled. Until we collectively make our voices heard, we will continue to be an afterthought and forced to put up with your inconsiderate and thoughtless designs. The worst case in point is the house I grew up in and where my parents and I still live today, which is a strong front runner for Shortsighted Design of the Year Award—The Split-Level House. For those of you unfamiliar with this masterpiece in clusterfuckery, rooms are grouped three per level, a staircase of six stairs joins each level, and in my house, six separate levels make up a four-bedroom house. And this isn't including the six steps to reach the front door from the walkway. All this means that if you're reading the paper in the living room and need to take a piss, you have your choice of going upstairs or downstairs. Not a big deal for that one task, but when you consider your entire day and how many times you move from room to room, it's a lot of ups and downs. This isn't designed for you if you have weak knees and/or shortness of breath, are elderly or disabled, or God forbid you get a little too high in the den and need to figure out where the refrigerator is located. When it was time for me to move out of my apartment and back home, my parents and I panicked, figuring out how to accommodate my changing needs. Which floor was best for me to live on? What were the modifications that should be made first? Forget all that, how the fuck do I even get into the house? Many difficult decisions had to be made quickly. Stair glides were the first order of business. Typically made for hauling grandma up the stairs, they became lifesavers until a more permanent solution could be devised. A serious family conversation needed to occur to decide whether we moved into a newer and more accessible house or modified the house we were in to meet my needs? Either decision was going to have a major impact on our lives. Blowing up the house Ultimately we decided to stay put and modify the house. Little did we know what an undertaking this would be. Fortunately, through the efforts of the GoFundMe campaign, which is to be found at https://www.gofundme.com/HelpJeremyFightALS/, I reconnected with an old friend from college who happened to work for Steve Cohen of Steven S. Cohen Architects out of Princeton, NJ, who specializes in handicap design. Steve and his team partnered with Joe Briganti of JB Builders in Randolph, NJ, to create a masterpiece of functionality and design that will accommodate my needs. Hopefully, I've designed the space thoughtfully enough that my parents will use it once I no longer need it, allowing them to age in place the way they deserve. Making the family home accessible. March 2019. We couldn't have done it without the generosity of our friends and family. We’re eternally grateful. There's a huge difference between being ADA compliant and being handicapped-usable. The 1990 ADA is federal legislation that prohibits discrimination against people with disabilities. The Act established standards for accessible design for public accommodation that includes creating automatic doorways, ramps, and elevators to accommodate wheelchairs. These standards were updated in 2010, expanding the guidelines. A complete set of guidelines can be found on the ADA.gov website.2 While the rules are extensive, as I've come to learn, they aren't widely adhered to or enforced. Is anyone listening? After moving to my parents' home in New Jersey, I needed to transfer my care providers to the same area as well. We were told that Kessler's outpatient program in West Orange was top in the area for neurology-focused rehabilitation. After all, it's where Christopher Reeve went after his accident. If it's good enough for Superman, it's good enough for me. What I came to find at Kessler was an altogether different, and frankly disappointing experience. The bathrooms in the main lobby of the outpatient center were not only disgusting, but they were nowhere close to being either ADA compliant or handicapped accessible. Most notable were those in the main lobby, which lacked push-button door openers, sufficient grab handles, toilet paper dispensers within reach, a sink I could roll up to and reach the faucets, and a myriad of other design flaws that made the bathroom unusable. Add to that a senior office administrator who explained she was much too busy to answer your phone call or to call you back after you had left a message or didn't acknowledge you when you were standing there in front of her. The condition of this facility was unacceptable, and for my own health and safety, something needed to be done to address these things. Aside from the quality of the facility itself, I was facing tremendous difficulty with the different lines of service, such as physical and occupational therapy, the wheelchair clinic, and administration. The main issues surrounded generally poor responsiveness and quality of care. The way patients flowed through the outpatient rehabilitation center made it clear that Kessler’s priority was collecting my insurance rather than providing great patient care. So, in December 2018 I employed my own top-down method to escalate these issues to someone high enough up at the Kessler organization to hopefully get them addressed. Fifteen minutes after making my first attempt to reach someone in the administration, I received a call from Bonnie Evans, CEO of Kessler. By the way, she's not handicapped, and nor is anyone on her staff. Not that having a disability is a prerequisite for working in a hospital's administration, but it would lend some helpful perspective. I was thrilled at how quickly she acted to understand my concerns and look into resolving the issues. She went so far as to send me a letter committing to address the issues and elaborating on how important patient satisfaction is to her and Kessler as a whole. She also introduced me to her Market Director of Plant Operations (not handicapped), and Physical and Occupational Therapy leaders (also not handicapped). However, having received no further updates from the CEO or anyone on her staff, I visited the facility to see what improvements had actually been made. Surprisingly, the only modification they had made was a fresh coat of paint in one bathroom. Surely that tiny change to aesthetics would be easily justifiable in court when the judge asked the CEO what had been done to ensure ADA compliance. Disappointed, I went home to follow up with the CEO, and I received this stunning reply: From: Evans, Bonnie Date: Tue, Mar 12, 2019, at 8:13 PM Subject: RE: a response from Kessler Institute West Orange To: Jeremy Schreiber Jeremy, Thank you Jeremy for reaching out. We did in fact evaluate your suggestions as promised, with our Market Director of Plant Operations, Out Patient Therapy leaders, and other individuals in wheelchairs who access the facilities. While we do appreciate your suggestions and offers to help, our decision at this time is not to make any changes to the current set up. While you are visiting our facility, should you need assistance, our staff would be happy to help. I hope your wheelchair adjustments have been productive, and the team communication consistent. Thank you again for your thoughts. Bonnie A. Evans, PT, MHA CEO Kessler Institute for Rehabilitation West Orange Campus 1199 Pleasant Valley Way West Orange, NJ 07052 Surprised and disappointed with her response, I wasn't going to accept being told I wasn't worth the effort. Which staff member exactly would be assigned to assist me in taking a shit? Maybe I'll roll over to her office after I finish a pot of coffee and a shrimp and mayo sandwich that has spent too much time out of the refrigerator. Speaking of dropping bombs, my father has a great shirt that shows a B-52 airplane dropping bombs, with the caption "When diplomacy fails …" This isn't over, I thought. Time to ask Governor Phil Murphy (D-NJ) for his help. The Star Ledger newspaper would enjoy a story about a nationally recognized healthcare institute discriminating against the very people it commits to serve. In his February 8th, 2019 article, "Where Luxury Meets Accessibility," NY Times author C. J. Hughes wrote about the scale of discrimination that occurs in the real estate market in NYC. Turns out this issue is systemic across the largest real estate development companies, such as Related Companies, the Durst Organization, and Equity Residential. While new apartment buildings are being built at a record pace, little is being done to include important accessibility accommodation. "Compliance is more the exception than the rule," said Fred Freiberg, the executive director of the Fair Housing Justice Center, a nonprofit that leads building investigations by using testers. "We still have a long way to go." This is systematic discrimination against a large segment of the population. CBS News reporter Steve Dorsey investigated the subject on June 28th, 2019, due to the overwhelming number of complaints lodged with the Justice Department's Disability Rights Department. Once it reaches this level of visibility, we can no longer assume that avoidance of compliance is unintentional. Disability rights attorney and author, Lainey Feingold, confirmed that this isn't just a private sector issue, stating, "Sadly, compliance with federal and state laws and regulations often doesn't happen. There isn't the attention to detail around accessibility as there is to other issues like security and privacy when really it is all the same." The term used to describe buildings exempt from ADA compliance is "grandfathering," a fancy term for “let it slide." To put it in relatable terms: "That's just Ginny, she's been working that corner since we were in middle school. She doesn't harm anybody. There's no point in arresting her." A classic example is the NYC office of Dr. David A. Mayer, Medical Director of the National Stem Cell Centers. Constructed in 1913, his 903 Park Ave., NYC office was a glaring example of a building exempt from the ADA guidelines. A further example is the lack of an accessible bathroom. And by accessible I mean that you can't sit down there without hitting your knees on the sink across from you. Let alone maneuver a wheelchair in there. However, there's nothing preventing the individual tenant of a space in one of these exempt buildings from making the appropriate modifications for the benefit of their customers, or in this case, patients. With the way shady stem cell clinics in the United States have been investigated for claiming to cure every ailment imaginable, I'm sure he took my money and every other patient's and bought his wife another facelift. If for some reason you forget you're disabled, book yourself a flight and you'll be quickly reminded. Most airports have figured out handicapped access really well, but it's the airlines that appear to have written the non-able-bodied out of the design of their aircraft. As a good example of this, my parents and I decided to take one of those once-in-a-lifetime trips together to visit friends and family in Israel. We did tons of prep work to ensure all aspects of the trip would be accessible; everything from the hotel rooms to the tours to the airplane itself. After the United States passed the ADA in 1990, many other countries followed by enacting similar acts and laws. In 1998 the Israeli Knesset passed the Equal Rights for Persons with Disabilities law.3 Only three of the ten total sections of the law were passed, leaving seven additional sections for future legislation. Now, more than twenty years later, there are still significant gaps between what the law intended to accomplish versus what's currently implemented and is useful. Still, in the brief time we were there, it felt as though the tiny Middle Eastern country had figured out accessibility pretty well. Their flagship airline, El Al, however, was an altogether different story. On the ground at Newark airport, we were well looked after by the personnel, though managing to maneuver inside the plane itself was a complete shit show. I opted for business class, figuring the eleven-hour flight would suck that much less with more room in and around the seats to help me do whatever I needed. The brand-new 787-900 Dreamliner was stunning. At first glance, this magnificent bird was impeccably designed with every amenity and detail carefully thought out. Until I got there. Having already flown as a "passenger with special needs" a few times on shorter trips, I was almost used to the rigamarole with the aisle chair. Flag down airport staff. Explain that you're not walking anywhere, no how, no way, not even a little. Ignore looks of disgust. Roll to the gate and board first in that dreadful category: "Anyone needing a little extra time to board." Roll to the end of the jet bridge to the dreaded aisle chair. This child-sized chair is loaded with straps, buckles, and harnesses to ensure you don't escape. It looks and feels like a medieval torture device. The chair is also accompanied by plenty of stares from onlookers. The more ambitious airport staff will pick you up from one chair and place you in the other. Those not interested in the impending slipped disc will let you figure out the transfer for yourself. Once in the chair, you're snaked down the aisle toward your row. In most planes, you're rolled next to your seat and more or less transferred the same way into your seat. El Al's business class is a different story. The rows are arranged in a one-twoone seat configuration where each seat is a full bedroom, kitchen, and entertainment center. The only thing missing was a built-in toilet and bidet. To maximize revenue, there was a paltry 18 inches of space between rows. There was barely enough room to shuffle sideways, let alone maneuver a handicapped person into a seat. Jeremy and his mother Ronnye on the way to Israel, January 2019 After unshackling me from the torture chamber chair, two surly flight attendants, with direction and help from my father, placed me into the seat. Bring the booze, stat! During the planning for this trip, the topic of going to the bathroom had inevitably popped up. I had attempted to work out the maximum amount I could drink mathematically based on the volume of the human bladder divided by the duration of the flight time. It was mind over bladder, and I was determined to win. The alternative was one of those piss bags strapped to my leg for the duration of the flight. Wanting to steer clear of that option, we decided to go bag free and figure it out mid-flight. We carried my walker onboard and planned to use it to assist me down the aisle to the bathroom and back. About six hours into the trip, the inevitable happened. There was no amount of squirming, repositioning, or attempting to sleep that was going to make the urge to urinate go away. My father and I spent several minutes working out the logistics of navigating to the bathroom. It was no more than 15 feet away, but this was going to be difficult. What we hadn't accounted for were the ultra-narrow aisles, the unreasonably small bathroom doorway, and the lack of assistive items that I depend on being in place to help me. As nice as the plane decor was, it was handicapped-unusable. Added to the urgency of the situation was the complex navigation out of my seat, which required shuffling awkwardly past the seat on my left and toward the bathroom. My father turned on his commander mode to ensure the three flight attendants he enlisted to help support this endeavor were in sync. This was going to be more complex than the choreography of a Cirque du Soleil show. My father held me up on the left, with two muscular flight attendants on my right, and we were on the move. Once I was liberated from the beautiful cocoon-like seat pods, a walker was placed in front of me, necessary for stability. One awkward step at a time we traversed our way toward the front of the cabin. Once we arrived at the bathroom, the next set of logistics were enacted: How to turn left, enter the coat closet-sized bathroom stall, and position myself over the toilet. We opted for brute force. Awkward, but effective. We got the job done without spilling a drop. Being in that echelon of travel, there are certain luxuries provided that you may otherwise not experience when mucking around amongst the common folk. The amenities, the luxurious travel gift set, the fluffy socks, the endless supply of food and booze, and the finely curated and aesthetically pleasing flight attendants. Oh, the flight attendants. Attractive goes without saying (check Instagram if you don't believe me). They are also, of course, Israeli, so you know they have an attitude and have been in the army so they can probably kill you. When it came time to eat, my mother situated herself in the cavernous pod and adjusted my plates to begin cutting my food and feeding me. The configuration of the seats isn't conducive to this particular activity, or a few others that come to mind, but we were managing. Noticing we were slow to make our way through dinner, the flight attendant knelt down and asked whether she could help feed me so my mother could eat her own meal. What? I never get this level of service in top-tier restaurants, let alone any class cabin on an airplane where the waitress also happens to be a highly trained flight attendant responsible for hundreds of lives. *** Denver has always been one of my favorite cities for many reasons, the crisp clean air, the big outdoors culture, and the laid-back feeling to name a few. The ever-present and very legal marijuana scene doesn't hurt either. Each trip I take, whether locally for a haircut or to another country, needs to be well planned for accessibility and ease of getting around. Denver is a fairly accessible city and, with the widespread use of ridesharing apps like Uber, I was excited about this trip. What I didn't anticipate was the prevalence of SUVs being used as taxis. This created considerable difficulties. When the Uber driver pulled up, a barrage of questions flooded my mind: How high is the seat? Is the door handle in the right spot? Will my hands loosen up enough to hold onto something that can support me? If the seats aren't leather, will I be able to slide myself into place? I frankly don't give a shiny rat's ass if anyone is watching this struggle. In fact, if someone comes up with a brilliant solution because they saw me struggling, even better! About a year before, Uber ousted its CEO, Travis Kalanick, after a wave of sexual harassment allegations and installed a more compassionate and customer-centric CEO, Dara Khosrowshahi. TV ads were being run about the safety and comfort of passengers being the company's new top priority. I figured now would be a good time to reach out and see how they could help me find more appropriate vehicles that better suited my needs. After all, I can choose the luxury level and size of the vehicle I want to be picked up in, so why not the handicapped accessibility? Nowhere in the Uber app was I able to indicate my special needs. I emailed customer service hoping they would offer a solution that I hadn't explored. Instead, two days later, I got a cheery, yet dismissive email. Hi Jeremy, Thank you for letting us know about this. While we cannot guarantee a sedan, you are most likely to be matched with a sedan by using our UberX option. In the case that you are paired with a larger vehicle, you can contact the driver through the 'Contact Driver' function in the app or cancel the ride and try again. Note that all drivers are expected to accommodate wheelchairs and assistive devices to the maximum extent possible. We're constantly working on initiatives to ensure that your Uber experience is as smooth, comfortable, and efficient as possible. These efforts include leveraging new technologies and monitoring feedback on trip quality. Please let us know if we can help you with anything else. Sent by Joy on Monday, October 1, 2018 at 6:52:06 PM What I needed from Uber was a way to ensure that a sedan picked me up instead of an SUV. That shouldn't be a difficult request. In fact, it should be an option to save in the preferences of the app. The airline industry has allowed its passengers to do this for years—where you want to sit, the type of food you want, and, of course, whether or not you need "special assistance." Uber tracks millions of data points to provide a highly customized experience for riders and drivers, all of which rolls up in your rider profile, as well as your driver profile. Pay attention kids. Ever wondered why it takes so long for you to get paired with a ride? It's because you were flagged as a shitty passenger. Chances are your shitty behavior shows up in other areas of your life. This shouldn't be a surprise, since you're also disparaging to waiters, you have a habit of using your phone during dinner, and when you look at me, I make you uncomfortable, so you pretend I don't exist. Drivers carry their fair share of responsibility in behaving like human beings. Star rating isn't the only metric they are judged by. The number of complaints filed against them, the frequency they turn down rides in undesirable areas, and possibly, though I can't be sure, how rapey they are. This type of profiling is completely acceptable. Turns out I wasn't the only one getting one-star service. On June 11th, 2019, the Disability Rights Advocacy (DRA) organization and its co-council Carlson Lynch filed a classaction lawsuit against Uber. The suit states that: "Uber fails to provide any wheelchair accessible vehicles through its ondemand ridesharing service in Pittsburgh."4 Since the suit was filed, the DRA has filed additional suits in New York and California against Uber for similar reasons. —7— Weed Does a Body Good "I want a goddamn strong statement on marijuana … I mean one on marijuana that just tears the ass out of them … By God we are going to hit the marijuana thing, and I want to hit it right square in the puss … I want to hit it, against legalizing and all that sort of thing." ~Richard Nixon, 37th President of the United States~ I HAVE a love-hate relationship with the idea of marijuana in general. I grew up during Ronald Reagan's "War on Drugs." This was the time of those commercials where the camera is trained over a sizzling frying pan and the narrator states, "This is your brain." Then a big wet egg yolk is dumped onto the scalding hot surface and the narrator declares, "This is your brain on drugs. Any questions?" Yes, actually. Can I get that sunny side up with a side of hash browns? And my all-time favorite, where the father walks into the living room holding a small cigar box and asks his son, who is watching TV with a friend, "Where did you learn to do this?" and the son fires back, with a shit-eating grin, "I learned it by watching you Dad." Where exactly was this kid's father getting high that was in plain sight of his kid? More importantly, the dad should have been pleased his kid had his own stash and kept his hands off daddy's OG Kush. The war on drugs also created the D.A.R.E. Program (Drug Abuse Resistance Education). The powers that be decided it would be smart to introduce this program to the school kids through local law enforcement. That way, the kids would think the cops were their buddies and wouldn't have a problem narking on their friends who just wanted to get high behind the bleachers. I was never opposed to recreational marijuana use; it just had no place in my life. Everyone in college did it. In NYC it was a way of life. What was probably closer to the truth was that I was simply oblivious. My first real experience with marijuana was with an edible while visiting my buddy Ido Meros and his girlfriend Jennifer Mims in Miami. The plan was to have a nice dinner, return to Ido's house where I was staying, watch a movie, and call it a night. Before we walked out of the house, Jennifer brought out an edible gummy that promised to "not be a big deal." She offered a quarter of the gummy to Ido and me, skipped herself, since she was driving, and wrapped up the remaining pieces. Before I popped the miniscule squishy red candy cube into my mouth, I took a survey of the situation at hand. I was in good company, we were going to a restaurant that had stellar reviews, and if I shit myself, it wasn't my car to worry about. What could possibly go wrong? All was going well during dinner and I had all but forgotten about the tiny red gem I started my night off with earlier. Red wine, house-made burrata, and shrimp cargot accompanied by warm crusty bread. That's when things went sideways. Feeling a tiny bit nauseous, I announced to the table it would be in everyone's best interest to point me in the direction of the bathroom so I could curl up and die next to the bowl. Jennifer convinced me I was fine, and it was probably the four pounds of cheese I had consumed. With me wavering between nausea and extreme hysterics, we finished the meal and needed to leave. Maybe we were asked to leave. I don't recall. What I still see clearly is the football field distance between our table and the exit. Standing up, I felt the full effect of the gummy. My body felt like a marshmallow and I was feeling good. There was just one issue—letting go of the table, as I would surely fall off the planet. Hanging on to Ido's shoulder to guide me out of the restaurant, we somehow made it back to the car and the house. When we got home, time seemed to stand still. Every movement took forever to accomplish. Ido took his dog out for a walk. How long was he gone? Where did he go? If he felt anything like I did, how was he getting home? The world was one giant mystery to me. I attempted to logic my way out of this situation using my now mushy brain to calculate how much longer I would be in this predicament. If you take the weight of weed in the gummy, factor how much food I had eaten and over what period of time, subtract my bodyweight, and divide it by an even number— because dividing by an odd number was too difficult—I would come up with … bupkis. I had no idea how much longer this was going to last. Fuck it. May as well enjoy it if I can and try not to shit myself, I thought. Fortunately, I was successful at both and came out of the other side unscathed. The experience was enjoyable, though not worth turning into a habit, especially if I wanted to be a functional human being. If you enjoy getting high, be honest with yourself and everyone else and just admit it. No need to hide behind the health benefits as the reason you sneak a joint between meetings. No one will fault you for taking down half a gummy to make your snotty kids a little more tolerable. Same rationale for gun owners. No one will call you or your hillbilly neighbors to form a militia, your home isn't being invaded, and no one is coming to take your precious guns away. You'll save yourself a lot of time and effort in what will most likely be factually inaccurate arguments if you scrape the Confederate flag off your back window and just admit: "I like guns." Since the beginning of this journey, I've been on a mission to find something, anything that was going to alleviate my symptoms. While waiting for my medical marijuana card to arrive, I needed immediate relief, so what better place to visit than the mile-high city of Denver, CO? The air is clean, the scenery is stunning, and the weed is plentiful. I had been to Denver before, though not in a wheelchair and not to buy weed. The mission was simple. Visit a bunch of dispensaries, buy a fistful of edibles, and try them all to see what could work to alleviate my symptoms. But where does one go to find such places? Some stoners had at least one brilliant idea between bong rips and created Leafly, a website that lists all medical and recreational marijuana dispensaries across the country. And for your smoking pleasure, there's a convenient app to enable you to find the dispensary nearest to you. Within a few blocks of where I was staying, there were four dispensaries, so I set out to find them and learn as much as I could about what would help me overcome these horrible symptoms. For an industry that's all about "compassionate care" I was surprised by a few things consistent across the various stores. To start with, a large number of locations aren't handicapped accessible. There are no handicapped-height counters where someone in a wheelchair can easily interact with the person behind the counter. Then the majority of the devices designed to consume weed require a considerable amount of dexterity to operate. There are edibles, tinctures, and even suppositories, but if you want the old-school bud and your hands don't work, you're shit out of luck. Those nuisances aside, I got quite an education. This is some scientific shit, man. No longer do you need to rely on your dealer to bring you whatever weed he might have received from the mule that supplied him. You can walk into a dispensary, look over an extensive menu of options, and decide what kind of experience you want. I was under the impression that weed is weed. Quite the contrary. With the exception of a small handful of dispensary employees I met, most were willing to spend as much time as I wanted educating me on the considerable range of products available at their store. At a high level, there are really only two things to consider: Indica vs sativa and THC vs CBD (tetrahydrocannabinol vs cannabidiol). All the available choices are simply different combinations of those four components. For example, if you want something to help you sleep, go heavier with an indica with more THC. Want something to help you make it through another insufferable meeting where you know you'll be called on? Stick to a sativa that's heavier on the CBD. If you're one of those people prone to googling every pimple, cough, or muscle ache until you have convinced yourself you have a rare form of necrotizing fasciitis, you'll want to stay away from the Alice-sized rabbit hole weed and all that its varieties offer. I know I'm going to get slammed by weed aficionados for oversimplifying this, but for the purposes of venturing into the wide world of weed, it isn't that hard. "But Jeremy, aren't you a coffee lover? Isn't the coffee universe just as complex? How could you simplify the complexities of that special plant and all it offers?" Sure, there are all sorts of coffees from all over the world, and an equally dizzying array of methods of preparing the sweet brown goodness. However, for most just venturing into their first few cups, there are two types: good coffee and the shit served in hotel lobbies. No need to write a dissertation on the subject. Keep it simple. Primarily looking for the healing benefits of CBD, heading into the dispensary for the first time, I was armed with what I thought was a strong idea of what I wanted. Little did I know these people behind the counter must have gone to weed college. Holy shit. It was like I had accidentally walked into graduate-level honors advanced biology class, in Greek. Questions about the type of experience and blend ratios and session expectations were hurled at me. Hang on a minute. Cheech. I have muscle spasms, anxiety, and a healthy dose of depression. Gimme something to take that all away. And I want to be calm, not comatose. Think you can help me with that? The "budtenders" as they referred to themselves, had an impressive knowledge of all things cannabis. With a few exceptions, I was pointed in the right direction toward CBDheavy strains and edibles. Concerned that I was going to end up a blithering idiot barely able to hang on to the world, again I asked for some operating guidelines for the edibles. Rules for responsible consumption of marijuana edibles ● Do take a small amount at first. ● Don't take another until an hour has passed and you can judge the effects. ● ● ● ● ● Do make sure you're in good company. Don't assume you'll be a functional human being. Do expect the effects to last for a few hours. Don't wait until you're high to order food. Do have some of your favorite snacks within easy reach. ● Finally: Don't panic, it's just weed. No one has ever died from it. The last few rules about food I added as a cautionary reminder to myself after watching one of my friends in NYC get high, order an astonishing amount of Chinese food, and promptly pass out, leaving it all with the doormen. Funny the first time, but highly concerning after the third. A message to our local budtenders: Don't take yourself too seriously. You're just selling weed. And take off that silly lab coat. You're not fooling anyone. Today I use a variety of types of marijuana every day depending on what my body is complaining about at that moment. According to the weed experts, there are all sorts of different positive medical benefits that weed can provide for you. My unscientific evaluation (Please note: there were no cute or fuzzy bunnies harmed during this evaluation) done over an extremely short period of time, concludes that weed causes relaxation. Regardless of what body part or symptom, it will become relaxed. If you have never tried cannabis, please apply a willful suspension of disbelief. This marvelous little plant helps me with all sorts of nasty symptoms, such as muscle cramping, fasciculations (those twitches you can see on my skin), clonus of my feet and jaw (repetitive shaking like your jaw does when it's cold), excessive saliva, and insomnia. As a happy, though seemingly obvious secondary benefit, weed has alleviated my anxiety and depression. That makes perfect sense, right? If you don't feel like shit, you're not going to be depressed. Lastly, it removes "the fucks," as in who gives a … Surprisingly, no matter how many fucks you have or believe you're supposed to have, the weed eliminates all traces of them. Even if your rabbi, childhood hero, or even your boss demands you have a healthy quantity of fucks on hand to give, the quiet little plant with all of its complexities, will ensure you're fuck free. After all I endured, I finally found a way to give zero fucks. Where are we today? "The U.S. government would be spearheading an international movement to wipe the cannabis plant off the face of the earth."5 That's because marijuana was classified as a Schedule I drug under the Controlled Substances Act in 1970.6 It was deemed to have a high potential for abuse and no accepted medical use. This classification has remained ever since. Other drugs in the Schedule I category include heroin, LSD, and peyote. The 1970 Act was the heaviest blow to the proliferation of cannabis in the modern day—fifty years ago. Prior to that, increased restrictions and labeling of cannabis as a poison began in many states from 1906 onward, moving to outright prohibitions in the 1920s. By the mid-1930s cannabis was regulated as an illicit drug in every state. Fast forward to present-day 2020, and there are eleven states with legalized medical and recreational marijuana, and thirtythree states where only medical marijuana is legal. This is progress, but there's still a long way to go. Medical research involving marijuana has been restricted for many years in the United States due to the classification. Finally, in 2001, the Food and Drug Administration (FDA), announced approval of Epidiolex, the first-ever cannabidiol-based drug for treating two rare forms of epilepsy.7 This paved the way for approval of three synthetic cannabisrelated drug products: Marinol and Syndros (both also known as Dronabinol), and Cesamet (Nabilone). However, the FDA, in its infinite wisdom, didn't approve applications to market these drugs. This means your doctor needs to be aware of these on their own. Chances are your doctor isn't read-up on this class of drugs. And if they are familiar, they are probably too scared to prescribe or recommend them. Every biotech company wants to get in on the action, hoping they will find the next cannabis-derived blockbuster drug. This is evidenced by a quick search on ClinicalTrials.gov for cannabisrelated clinical trials. There were a whopping 350 trials at various stages in the United States at the time this book was written. Of these, 207 have been completed (only 87 with results), 120 are active, and 23 aren't active (classified as Suspended, Terminated, Withdrawn, or are in Unknown Status). Although there's a high number of marijuana-focused clinical trials, the United States has been struggling to get high-quality plants for research in sufficient quantities, causing the trials to languish. This serious deficit in quality study materials available for clinical trials was brought to light by Dr. Sue Sisley, who heads the Scottsdale Research Institute in Arizona. Today, the federal government has licensed only one facility to grow and supply marijuana for research purposes. She believes the cannabis from the monopoly held by the University of Mississippi to other researchers is low-quality, which could detrimentally impact their research. When she examined the study materials she was given, it appeared to be full of leaves and twigs. Nothing close to the quality found in dispensaries around the country. It's no wonder the results from the trials that do make it past the excruciating application process rarely yield halfway decent results. Dr. Sisley sued the FDA and won, at least partially according to her. "While the attorneys got the relief that they were seeking from the DEA, they interpret the 'rule making' process as the Federal agencies' codeword for 'delay strategy,'" she said. "This is definitely not a full victory until we see real world cannabis flower finally being used in FDA-controlled clinical trials."8 Puff, puff, pass Since having to move back to my childhood home for my parents to take care of me, I've introduced many new things into their lives. New restaurants, music, technology (at severe heartache to each of us), and of course marijuana. Whatever the ailment, I suggested a little dab of CBD ointment, or a few tiny puffs on the pen. Eventually they began to witness how my symptoms improved when I used the different forms. My parents have endured a tremendous strain on their lives in what was supposed to be their golden years by taking care of me. Feeling a bit like an enabler, I wanted my parents to feel better, to relax, and maybe laugh their heads off over nothing and everything at the same time. Far be it from me to coerce anyone into doing something they don't want to do. Without making my parents nonfunctional, I made sure I was a good steward of the holy plant and guided them into their first experience. Take a few puffs, don't suck it down too hard and breathe out. The first question from my father was: "Am I high yet?" Spoken like the true scientist that he is, he wanted to analyze everything that was happening and predict what would come next. How the fuck would I know? It's weed. Sit down and try to enjoy yourself. It turned out that while they felt no immediate effects, both my parents slept better than they have in years. Better yet, there was no arthritis pain when they woke up. I'm hoping that weed becomes a gateway drug for them, but not in a huddled-next-to-a-dumpster-behind-the-7/11-poppingout-each-other's-gold-fillings-to-buy-another-hit-of-crack kind of way, of course. Let's call it a positive gateway to being open to more life experiences. Consider your own parents and how much more relaxed they might be with a little weed. Hell, it was their generation that wrote "Puff the Magic Dragon" and sang about "Momma's Little Helper." Maybe if the stars align, I'll hotbox the van on our next family trip and get my father high enough to convince him to purchase a non-flip phone. The moral of the story here is that you're never too old for peer pressure. In this house, a pinch of Sour Diesel can help them conquer all the new challenges we're faced with on a daily basis, such as the Apple TV remote, which looks the same whether it's upside down or right side up. Or one of my lesser vape pens, which requires multiple clicks to turn on, heat, and draw from. Or my iPhone X, which sucks to use irrespective of your dexterity and technology savviness. Imagine my frustratingly limited ability to teach them how to operate these devices with my inability to speak, curled fingers that point to nowhere helpful, and general patience for these types of efforts. Weed does my body good. —8— What Would You Do If Your Partner Became Terminally Ill? Would you: ● A. Run for the hills? ● B. Stand by their side? I HOPE you're never faced with that decision, though it's a very real possibility. You may tell yourself while reading this, Of course I would do anything for my hunny bunny, which is a logical and emotionally sane thought, considering your marriage vows committed you to for better or worse, in sickness and in health. You're also probably thinking, That will never happen to me. Close your eyes for a moment and envision the life you dreamed of; the life you have worked this hard to achieve. Do you see the big house in the burbs with lots of kids running around? Or a massive loft apartment in the middle of downtown? Are your closest friends gathered in the kitchen sharing wine and laughing at stories? Are you entertaining other families, showing off your perfect life? Surrounding yourself with the finer things life has to offer? Maybe exploring the world is more your speed. Now, add in one part mystery symptoms, two parts fear, and a dash of anxiety, then bring to boil for six to twelve months and you have yourself the makings of a dream-killing, relationshipstraining disaster soup. As the soup simmers, the rising scent of something more serious fills the air. Could it be MS (multiple sclerosis), ALS, or any number of other diseases that need an acronym? Going down the WebMD rabbit hole, where every itch and cough immediately leads to flesh-eating zombie cancer, will reprioritize your beautiful fairytale dreams to a life filled with doctors appointments, therapies of all sorts, nurses and aides in and out of the house, enough medical equipment to fill a small hospital, not to mention the bills. Anyone faced with something of this magnitude will have their mental and physical strength pushed to their limits. The strength of the bond between you and your significant other is also tested as both of you receive the diagnosis, even though only one of you is sick. Ask yourself: What are you prepared to do? Better answer this question for yourself before you get married. By the time I started this journey, we had been married for a year and a half, living in NYC together along with her two-pound teacup Yorkie in a 500 square-feet apartment in midtown east near the United Nations. Cramped barely begins to describe how it felt to live in a well-appointed, though excessively furnished, junior one-bedroom. Adding to that, we both worked from home full time. Frequently, I managed to give us a break from ourselves as I would visit clients for work. Not wanting to be away from home more than necessary, I pushed to come home every night regardless of how far I travelled. Day trips from New York to Dallas and Jacksonville weren't uncommon. Needless to say it was a stressful way to live and work for both of us. Having a gym located in the basement of our building provided the added benefit of an extra toilet and shower when needed. To illustrate just how small our place was, my colleague at the time, and good friend now, Jason Flick, won an award and was given a bottle of wine as a prize. As he needed to fly home, he asked me to take the wine home and keep it until he could drive into the city and pick it up. I was only too willing to help him; however, I simply didn't have the space in my apartment. Yes, seriously. Living in NYC you learn to use every last square inch available to you. The changes that I was experiencing were frequent and unfamiliar, so much so that managing them wasn't as simple as going to the pharmacy and taking something from the shelf. It was nearly impossible to determine what equipment or medicine I needed to help me at that moment before a new symptom reared its ugly head and I needed something else to help me in a different way. This terrifying medical mystery began to impact our lives. In addition to the never-ending doctors appointments and the expanding collection of medicines and vitamins, basic daily life like getting on and off the couch, opening bottles, and dressing myself became more difficult. Being independent by nature and not wanting to burden my wife, I was reluctant to ask for help, asserting these symptoms were of no real consequence and I would manage on my own. That quickly changed as I needed assistance with more and more previously simple tasks each day. However, her proactive help, which I so desperately needed, never came. Working full time, attempting to identify an unknown disease, managing the symptoms, and doing my best to keep a happy household was a tremendous amount for any one person to bear. As the symptoms worsened, the emotional distance between us grew and communication broke down. As I was frantically searching for answers, she was pulling away from me and anything having to do with the topic of my illness. I can only assume the crushing weight of what she was watching her husband go through was preventing her from openly sharing her feelings with me, or the people closest to her in her life. The weeks and months flew by and I felt more alone than I ever had at any point in my life. The silence in the apartment became deafening. As she continued to retreat into coloring books, marijuana, and endless hours of Candy Crush, family and friends from all corners of my life came out of the woodwork offering ideas, suggestions, and support. The walls of our apartment began to close in on us. Our tiny dog was nearing thirteen years old and needing more help getting around, while our beautifully decorated apartment became a maze of sharp corners, reminding me each time I had fallen. There was nowhere to store the growing number of medical supplies, and the apartment my wife once considered her safe space was being overrun by a nightmare neither of us could escape. We needed a larger place to live and more help with every aspect of our lives if we were going to make it through together unscathed. So, I started looking for all sorts of alternative living arrangements in and around the NYC area. The apartment rental industry is scummy. It's filled with bait and switch scams, unscrupulous and uncaring agents, and a plethora of overpriced concrete filth boxes that you wouldn't subject your worst enemy to. I combed through all the typical rental listing aggregation sites for key terms that would accommodate our needs, such as ADA compliant, handicapped accessibility, roll-in showers, grab handles, and elevators. The search results were limited. Reaching out to the buildings directly proved useless as well. Many places claimed to be ADA compliant, though upon further investigation they weren't handicapped-usable. Not a single person I spoke with had knowledge of or access to an apartment that could accommodate my needs. I was silently being told: "Fuck you, we don't want your kind here." The urgency and anxiety increased with every day that went by. Hit the panic button. Where do we go? Will my symptoms stay stable long enough for us to find another place to live? Not wanting to alarm my company, I kept the news of what was happening to myself as long as I could. Deep down I believe my wife shared in my fear and panic, though I was never certain. She continued to take refuge from the crumbling reality around her through marijuana, endless hours of video games, and silence. Hours of each night passed without a twitch of movement from the couch where she was perched. I wished with all my heart that I could feel the warmth of her embrace to calm my trembling hands and frequent fits of tear-filled grief. That wish would never be fulfilled. I began to handle the experience differently, though not necessarily better. I became short-tempered and developed heightened anxiety and mounting depression. Where there were questions, I frantically sought answers, sharing the results of every search. Exasperated and needing a partner to brainstorm with, I frequently felt dismissed in favor of more video games and another joint. I so desperately wanted to break down her barriers and tell her how things would be all right as long as we had each other. However, my panic and her avoidance didn't mesh well. This was a recipe for a shitstorm disaster. I was fighting an uphill battle, looking for answers and solutions to make our lives even slightly better. Maybe she was looking for solutions in her own way, or maybe she was looking for a way out. Either way, she made it clear she couldn't, and wouldn't, become my primary caregiver. The kick in the gut came when she announced I should move in with my parents once I felt I needed more care. What I would come to learn was that this wasn't simply a suggestion, it was her objective. Through months of couples counselling, it emerged that she ultimately wanted a divorce. The woman I wanted to spend the rest of my life with was running away at the most difficult time in our lives. I was devastated. So, in June 2018 I had no choice but to move back to my parents' house, into a supportive and loving environment where I could focus on my health. The divorce process was grueling. She leveraged my failing health as an opportunity to extort as much out of me as she could. Through her sociopathic lack of empathy and baseless sense of entitlement, she made every effort to cause crippling stress. What she extolled as a simple prenup created a nonsensical mess that multiple lawyers would curse. If she wanted to wash her hands of me, why did she drag out the divorce for fifteen months? No moral compass? Her family, especially her father, would be ashamed if they knew how she had treated me. She had surprised us all by figuring out a way to profit from someone else's ALS. There were no visits to check up on me, no get-well cards, no offers to come cheer me up, only the occasional communication from her lawyer adding to the growing list of demands that she would drag on for more than a year. Message received: I was only worthwhile in health and in wealth. ‫יִמַּ ח ְׁשמֹו וְׁזִ כְׁ רו‬ (Yimakh shemo ve zikhro. Let their name and their memory be erased.) Get on board folks There's an important distinction between getting married and being married. At the risk of sounding like a misogynistic asshole and utterly insensitive to the fairer sex, my experiences have taught me that women, more so than men, fall victim to idealizing the getting married half of the equation without taking a sufficiently critical look inward to determine whether they are prepared for a relationship lasting the rest of their lives. When all the wedding festivities are over, you're back from the fairytale honeymoon, and no one stops to congratulate you, it's time to shift gears to being married. This is when shit gets real. The shifts post nuptials aren't always obvious, but they need close attention paid to them. Communication changes. It's no longer sufficient to sit passively and expect your spouse to make all the decisions after reading your mind for what you want to eat for dinner, what you want to watch, and whatever you're supposed to collectively do this weekend. It's an infuriating game that was cute during courtship but shouldn’t last long into the honeymoon years. Sex changes. Chances are you have already used up the two Cirque du Soleil moves you knew when you first started dating. Now it's a race to each other's magic pleasure buttons so you can get the act over with and get back to the Shitty Housewives of Some Town marathon you interrupted for the mandatory Missionary Wednesday's obligation. Slow down, take your time, and appreciate each other. Roles and responsibilities harden. Taking out the garbage isn't worth arguing about. And your subpar free-throw skills will never earn you a nomination into the Hamper Hall of Fame. I promise you, once she thought that was cute, but she's now dreaming of ways to murder you in your sleep with that crusty pair of briefs. The responsibilities in your life aren't going away. In fact, they will compound over time and become more complex, having greater impact. Talk to each other about what you're comfortable doing and what you're not. If you can't figure out the adult Tetris necessary to load the dishwasher to maximize space, I might offer to take that responsibility. Similarly, if you don't like the new colors I've made your favorite white blouse in the wash, feel free to declare yourself Master of the Laundry. Decisions become permanent and impact more than you alone. During bachelorhood, it was perfectly acceptable to stay out all night, blow half the rent on a bottle at the club, and eat take-out every night. But once you're married, or at least cohabitating seriously, it's time to start looking out for one another. I presented this question to one of my closest female friends and her answer surprised me. It wasn't the difficult care that bothered her, nor was it the death of the dreams of the perfect life. She said we both had needs and a "conversation would need to happen," referring to sex, and that she would need to get her needs met outside the relationship. I was hurt and saddened by this. Was it possible that I expected too much from my partner in a relationship? More probable was the case that the sick spouse was no longer a viable provider, either financially or sexually, and a new and more capable partner must be found. In my declining condition, I had become invisible. —9— Cab Driver as Spiritual Diagnostician C OMING OUT of a doctor’s appointment on a cold Thursday evening in Manhattan's east side, I stepped into the street to hail a cab. Using forearm crutches to stabilize me, I raised one crutch in the air toward a cab whose roof light was on, signaling it was available. It was one of the newest model taxi vans the city had just deployed, advertised for exceptional handicapped accessibility. Challenge #1: Heavy fucking sliding door more fitting for securing a bank vault than a handicapped accessible taxi. Challenge #2: Oddly high entry step. If you're someone with mobility, or for that matter height challenges, this isn't a taxi for you. Each time I see one of these vans I envision a modern-day Norman Rockwell painting of a little old lady in her house dress, unevenly rolled knee-high stockings, and purpley-bluish cotton puffs of white hair struggling to get into this monster vehicle with two of her grandchildren pushing her from behind. However, I muscled my way into the cab, gave the address, and fired up my phone, intent on finding any distraction from this life that I could. The cab driver looked at me in the rearview and with a thick Guyanese accent said. "It looks like you have a problem with your leg." No shit Sherlock. What gave that away? All I wanted to do was play the little game on my phone in silence on the way to see my friends at Black Tap restaurant, where they are known for their obscenely large and diabetes-inducing milkshakes. There's an unspoken rule governing the interaction between the cab driver and the passenger: Don't speak to each other and the ride will be much more pleasant for both of you. But he continued on to say that what I was experiencing wasn't an issue with my leg, rather it was neurological. Okay, you got my attention. I asked him how he knew this, to which he replied, "I felt it through my whole body when you got into the cab." That's incredible. I've been to so many doctors and had all of these tests. Why didn't I save myself a ton of time and energy and just get into this guy's cab? He followed up with, "Did you hurt someone in your past?" I'm a pretty stand-up guy. I don't go out looking for a fight. I call my parents once a week. I vote. I pay my taxes. And I have a respectable job. The cab driver then clarified: "Not physically. Emotionally or spiritually." Now that may be a very different story. Thinking this guy was about to have all of the answers, I asked the next logical question: "What should I do now?" He replied, "I don't know, but the answer lies in the spiritual side." I really didn't know what to make of this and decided on a twopronged approach. I would begin by reaching out to my friends and family who are involved with spirituality of some sort. One friend is deep into Kabbalah, another friend swears by inspirational YouTube videos, and my father's side of the family is Jewish orthodox. Surely someone had to know what this guy was talking about and how I could tap into it. I didn't pay much attention after I left the cab other than turning the experience into a good story to tell my friends. In parallel, I kicked off the 2018 Jeremy Apology Tour and it was coming to a city near you. I thought back long and hard about all the people I may have hurt in one way or another. Friends, ex-girlfriends, relatives, old coworkers. I came up with a curated list and wrote emails or Facebook Messenger messages to each. I don't know whether this is what that cab driver had in mind, but it felt good, addressed a lot of deep-down feelings, and got rid of a lot of pent-up anxiety. A little over a month later, coming out of the same doctor's office around the same time, I got into a cab and heard from the front: "Do you remember me? You didn't do what I told you to do." I leaned over so I could look through the partition and see the face attached to the familiar voice. I recognized him from the month before. What are the odds? Pretty good, apparently. "What do I do now?" I asked. He told me to pray. Whatever religion I was, whatever God I believed in, I should open that book and pray. That was something I didn't understand, and I had never done before. This guy had showed up in my life for a reason and I decided I should probably sit up and listen. After all, I wasn't getting any better and spirituality wasn't something I had any real familiarity with. After telling this story to a few friends, I was introduced to a gentleman named Robert Salvit, who was presented to me as a "master healer." I had no idea what that meant. I figured he was going to wave some crystals at me, take my money, and tell me I should try twice more. If I didn't like the experience, or didn't get anything out of it, at least I would have tried. Like all the other alternative medicine practitioners I've met, once they meet me and hear the challenges I'm trying to address, they tend to lay down a slew of disclaimers about their vast experience, with caveats about everyone's experience being different. Unlike the majority of the Western medicine practitioners I've been seen by, the alternative medicine practitioners don't accept health insurance, which means they don't have to run their practice like a factory churning through another patient every twelve minutes. They can spend considerable time listening to understand the ailments completely, so ideally they can choose the appropriate crystals, locations to place the acupuncture needles, or elixirs and tree bark to compound. What's more likely to happen while they are listening to you detail every last ache and pain is that they are compiling the best sales pitch possible that leaves the patient hopeful and protects them in case their treatment fails. I was desperate to put a halt to whatever was happening to me and I saw no harm in trying anything new. I made an appointment with Robert and, with an open mind, met him at his midtown Manhattan office. Expecting to see someone dressed in gypsy clothes, like the women with a folding table and tarot cards sitting on the sidewalk, I was surprised. He was a slightly disheveled, 5 feet 7 inch, sixty-something, grey-haired man wearing ill-fitting jeans, what looked like a filthy sweater, and twisted gym socks. He came shuffling down the carpeted hallway and motioned for me to follow him to his office. With space in Manhattan at such a premium, I expected Robert's office to be small, though I didn't expect to encounter a nine by six room crammed with a desk, examination table, and two chairs. He asked me if we could embrace to say hello, which was a first for me in a setting like this. However, I had gone in with an open mind, so if he told me riding an ostrich wearing nothing but my boots down Fifth Avenue was going to help, I would have said "‘Yes." After about forty minutes talking about the practice of healing, my goals, and what to expect, it was time to begin. With difficulty and much assistance, I laid on his examination table ready for whatever was about to happen next. The fifteen-minute session consisted of incense, chanting, and some light, but appropriate touching. The only odd experiences I had during the session were a feeling of lightness, which could have been from the incense, and a vision of very specific memories from throughout my life streaming across my field of view from the lower left, up, and to the right, flowing like a river, with each memory playing independently as it rushed across my mind's eye. When he rang his bell, he sat me up, I thanked him, and decided to schedule another two sessions. I didn't know what any of it meant, though I did know I wanted to explore this experience more deeply. Although I slept better that night than I had in quite a while, after the subsequent sessions I never experienced any further effects, either positive or negative. Given that ALS is a neurologic condition and all the symptoms I experience are controlled by the brain, why shouldn't I be able to impart some level of control over my own squishy lump of grey matter if I tried hard enough? I was intent on finding out. I always had a strong draw to the practice of meditation insomuch that I had logged almost a thousand hours on my Headspace app. I practiced with the intent that I could apply the skills should I ever need them. As the disease was crippling my life and I was being abandoned in my own home, it became critical that I use those lessons learned to create a mental safe space and put as much distance as possible between the man I knew I was and the things that were happening to me. What started out as unnoticeable and superficial muscle twitches, developed into severe nightly cramps in both calves, eventually spreading across my entire body, making sleep and many other activities impossible. I would, and still do, wake up several times each night to my body protesting against whatever position I started out in, begging to change positions, and knowing how difficult the process of rolling over on my own will be. When I had a difficult day, I counted down the hours until I could lay down in my warm, soft bed. It became even more of a sanctuary and safe space as I found myself needing to escape from the reality of what was happening. That safe space began to crack apart once sleep would no longer allow me to hide from my symptoms. Running to the bathroom in the middle of the night became a terrifying ordeal. Use your weakening arms and weak grip-less hands to liberate yourself from the covers. Get the arm crutches, carefully stand up without falling, and shuffle around the bed, cautious not to plant a foot or crutch on the comforter. Now beeline to the bathroom. No matter how urgently you need to piss, your body knows when you're in a rush and stiffens up and spasms accordingly. If I rushed, my ankles would cramp until I was forced to stand on my toes. If Lady Luck was on my side, the clonus would kick up. It's the uncontrollable or rhythmic shaking in the feet that makes standing still a monumental task. All of this slows the journey to the bathroom, elevating the anxiety. When I finally arrive, the choice is either stand up to pee and risk falling over or sit down and risk not being able to get up. Either way, the constantly changing medications were making this a twicenightly struggle. Meditation was to become an in-the-moment life raft to save me from drowning in the tsunami of whatever chemicals my brain was pumping out. With each unnatural contortion of my body, I made a conscientious effort to hear the soothing British accent of Andy Puddicombe, the voice and founder of meditation app Headspace, tell my body to soften, relax, and reset. "Breathe in through the nose, out through the mouth. Again. Focus on the rise and fall of your stomach as you continue to breathe rhythmically." Hang on Jer. You're strong enough to make it through this, I would tell myself. Each terror-filled second ticked by at a snail's pace. I tried to allow the idea of calm to wash over me and convince my body to relax so I could go on with whatever task I was struggling with at that moment. Around the same time I began falling regularly, the anxiety started to take hold and introduced her equally as sinister friend, agoraphobia. It happened in my apartment, in the doctor's office, in front of a fire station when the fire truck was coming out, and probably the most embarrassing was on a crowded corner of 42nd Street and Third Avenue. Or in the middle of the night when the sheets wrapped around me were too lightweight to grasp and pull off, and they conformed around my body, constricting my movements, like being strapped to a gurney. Panic ensues … pulse accelerates … breathing shallows and quickens … body heat soars … sweat flows … limbs stiffen and shake. This had become a nightly ritual. It wasn't until I moved to my parents' house that I regained control. Since the panic and underlying fears were fabricated by my mind and manifesting these physical symptoms, why couldn't I outsmart that lump of gray matter and teach it who was boss? Turns out you can, to a point. I taught myself a few techniques to prevent the anxiety from escalating, as well as showing my parents how to help at those moments. Aside from meditation, Xanax, and cannabis, how would I take control of my mind? Maybe the cabbie was right. My afflictions were cast onto me by some deity I pissed off during a reincarnation in the Han Dynasty. Searching for God this late in the game felt a bit like feigning enthusiasm for taking your cousin as your third-place prom date choice. Everyone knows what's really going on here. Desperation makes for odd bedfellows. I ventured into spirituality having decided my religious cousins on my father's side were the best place to start. They each went to twelve years of religious day school, so among them they should be able to give me a CliffsNotes version of whatever it was I should say or do to beat this monster. They shared websites for learning religious text with a partner, daily text messages of inspiration, and versions of ancient texts dumbed down so I could understand the morals. However, this wasn't what I was after. I needed something I could hold onto in a way that let me find the sunny sky amidst the storm clouds. I expanded my search, asking whomever I came across on a daily basis what spirituality meant to them and where I should begin. The answers weren't helping. Most people can't articulate what spirituality means to them, or how they access it in their lives. However, one home health aide recommended I look into the ancient art of Vodou practiced in her native Haiti. As much as my parents love me, I wasn't sure I could ask them to sacrifice a goat in the den. In my generation, there was this casual relationship with religion, which is meant to say, almost nonexistent. At least in the circles I floated in, people my age were categorically unlikely to join any organization with any real seriousness. Unlike my friend’s grandparents, who enjoyed Sunday night spaghetti dinners at the VFW hall or met up with friends at the Masonic Lodge, we did none of that. Not because we believed there's no use for these types of organizations in our lives, but because we found community and support in other venues—like Facebook, or at the local bar where everyone knows our name. When it came to asking my Jewish friends about how a higher power fits into their lives, the line I heard more often than not was "I'm more spiritual than religious," which is code for "I'll go to the high holidays if my parents buy my tickets, but that's it." No one was giving me easy answers. Whatever it was that I was looking for was going to be found by happenstance. It's sort of like wandering around a suit store knowing only what you don't want. You may as well start on one side of the store and start trying everything on. Several of my friends are deep into religion in one form or another, and they seem to be doing fine. Was I going to find the answers I was looking for in a new age cult where they sacrifice pygmies to please the yogurt gods? Erika Zappia, a close friend and coincidentally a spiritually enlightened yoga instructor, offered some valuable wisdom when I approached her with my questions. If it were possible for a person to glow, not in the recently pregnant way, she would illuminate the room wherever she went. Overflowing with kindness and compassion, she recommended that I read the Eckhardt Tolle book A New World: Awakening to Your Life's Purpose. In 2008, the New York Times called Tolle "the most popular spiritual author in the United States."9 Erika went into detail about how Tolle's writing inspired her and how it put her own life's questions into perspective. I was eager to read the short book, hoping I would have an enlightening experience, or at least it might open my eyes to an alternative way of contemplating how I could handle this rapidly deteriorating existence. I didn't find a useful answer to the meaning of life, which is 42 apparently, but I did find a new perspective. Simply put, the life I've now been indoctrinated into is mine to make what it will become. As was my opportunity to reinvent myself when I moved to the Big Apple, so would be the same chance to not be defined by the ALS diagnosis. Instead of self-pity, fear, and isolation, I choose the following … ● I choose not to lie in bed waiting for my time to come. ● I choose to spend my days with those who love me. ● I choose to invest in myself. ● I choose to defend my terms. ● I choose how to spend my time. ● I choose to eliminate negativity. ● I choose to love unconditionally. ● I choose to wear funny T-shirts. ● I choose music over silence. ● I choose to pay for high-quality health care. ● I choose to take risks. ● I choose to tear down my barriers. ● I choose to speak definitively. ● I choose the hard path because it's the right path. ● I choose to say yes. What is this, God? While all this contemplation of religion vs spirituality was going on, I started thinking about the existence of God. And if God does exist, is God good or evil? During Passover 2019, we went to the house of our long-time family friends, Maurice Rosenstraus and Paula Selkow. By way of tradition, Maurice, the head of the household and leader of the Seder, posed a question to those of us around the table: "Is God good or evil? And how do we know?" Being a lifelong agnostic, I never questioned the existence of a higher power, though not in the traditional Judeo-Christian sense of God. This venture into an unforgiving disease has given me plenty of time to consider alternatives to my own belief system. I have more questions than answers, though I'm not at a loss for people offering their frequently unsolicited and, according to them, fact-based opinions. Times like these should make these folks appreciate my inability to speak. Then again, would they bother to listen even if they heard my opinion? Methinks not. When deciding whether to blame a higher power for my current condition, I need to consider four categories of argument. Then I can decide which VW bus-sized rabbit hole to venture down. Option 1: My own personal God Adopting this line of thinking won't surprise you after I scored the game-winning touchdown. And why shouldn't I? After all, scoring that touchdown had nothing to do with the thousands of hours of practice, or the deflated ball I've been using the entire season. The personal God idea is selfish and unrealistic, especially since these are the same people who are first to point fingers when something doesn't go their way. Option 2: Intelligent design A designer created the world and everything in it. In order to evolve, there has to be a change/adaptation. This includes a balance of bad and good. This argument places me on the cutting room floor of whatever the master plan may be. Perhaps the original intent of ALS was an attempt to create a new efficiency in the body by identifying misfolded proteins and disposing of them, thereby preparing the human body for the next mutation in the evolutionary process. Option 3: God is good or evil There is a God, and He has a vested interest in the success or failure of the universe and everything in it. This is an extremely complex argument that will be argued for centuries by Godfearing men. They will point to examples of abundant and bountiful harvests and times of prosperity, and contradictory examples of war, famine, plagues, and orange-colored presidents. I can't fathom why any deity would care enough to get involved in squabbles and tweaking of mankind, when we have only been on this planet for a split second of its existence. Option 4: There is no God Stated brilliantly by Linda Hamilton's character, Sarah Connor, in the 1991 science fiction thriller Terminator 2: Judgement Day, "The future's not set. There's no fate but what we make for ourselves." I'm far more inclined to believe in my own manifest destiny, over any argument supporting an unquantifiable deity having a hard-on for creating pain and suffering. And the winner is … All that was to say this: On the off-chance that someone or something has an interest in taking action on my wishes, I've created a prayer that I say silently during any medical treatment. It goes something like this: Please let this procedure heal me so I can take care of my parents and Melissa the way they have taken care of me. As the anesthesia washes over me like the tide blankets a beach, I repeat this little prayer over and over. When that familiar tingle envelops my tongue and bad electronic music fills my ears, my concentration is stolen away from the prayer and any attempt to meditate, I drift to sleep hoping to wake up again. —10— Fundamentals of Caring "I am the guest of honor at my own living funeral." ~Lou Gehrig during his farewell speech at Yankees Stadium, July 4th, 1939~ A S EACH day passed, living by the caring hands of my parents, the routine became more refined and perfected to accommodate my symptoms at that moment. I watched, wishing I could be a helpful participant, as they re-engineered every step of the day to make it safe for me and easier for them. They were exhausted and growing older before my eyes. My father was about to retire at the end of 2018 and handled the caregiving duties in the evenings. Meanwhile, my mother chose to run her company from home to care for me during the day. Caring for an adult son isn't the retirement they deserve. With all the advancements in medicine and technology, the reality is that there's no cure for ALS at the time I'm writing this book. Whether I survive only long enough to fall within the statistical probability of mortality window of two to five years post-diagnosis, or I fight my way into becoming an outlier and living into my eighties, an existence with ALS is exhausting for patients and caregivers alike. The rapid and frequent changes in my condition leave everyone scrambling to figure out how to modify the routine to make me comfortable. This existence is nothing more than longterm palliative care in a home hospice. It's a life of symptom management and a continual search to make yourself as comfortable as possible. When I was in my late 20s and early 30s I had seen enough sickness and suffering to know I wanted to live life to the fullest. When it got to the bad shit-yourself-while-drooling years at the end, I wanted to pull the ripcord and call it quits. Arriving at "invalid station" far earlier than expected, I'm not ready to give up. I can handle pain. Blood, whether my own or someone else's, doesn't bother me. But the inability to communicate is a soulcrushing and spirit-breaking punishment. Not only do I suffer not being able to have my needs met, and my caregivers become frustrated at not being able to help, but this is how I slip into the background and am forgotten in a crowded room. I become no more important than a fixture on the wall or a massive piece of furniture. Public spaces and noisy environments represent the greatest challenge. If I don't have one of my speech-generating devices cranked up to full volume, any attempt to speak is lost within the din of the surrounding environment. The problem is amplified when I'm communicating with someone who is unaccustomed to interpreting my degraded speech. When asked to repeat myself I have to expend a considerable amount more effort to be heard and understood. Losing control over the muscles in my face has left me almost expressionless, adding an unintended negative tone to my response. Often I must resort to spelling a word letter by letter, those with similar sounds (b/c/d/e/g/v/z, a/j, m/n, q/u, v/z) causing the most confusion. We needed a way for me to be understood while in bed. Or at least when the eye tracker isn't working. Fortunately, a clever no-tech solution was developed by Gary Becker, father of the lead guitarist of David Lee Roth’s band, Jason Becker. Jason developed ALS in 1996, abruptly ending his stage career. From then, his condition progressed rapidly, and he was only able to move his eyes. Jason was locked into his body and mind without the ability to communicate. This system, requiring two minutes of training, divides the alphabet into six identically-sized boxes on a single sheet of paper. One side faces the patient, the other, the caregiver. Using only two movements of either the head or the eyes, the first movement indicates the box and the second movement selects the letter, so communication is possible anywhere and at any time. This tool simplified what once was a painstaking effort into a process usable by anyone anytime. We use this system so frequently that we created laminated wallet-sized versions and hand them out to everyone we know. A copy of the Becker Vocal Eyes Communication Board can be found at the end of this book and on my website under Resources: https://neversayinvisible.com/resources/ A day in the life That's the cruel mistress of ALS; you're fully aware of your environment with all of your senses intact, but no ability to call for help when something bothers you. This is where you get to play along at home on the new game show "A Day in the Life." Wherever you're reading this book, get yourself comfortable, put your phone down, take the last sip of your triple-shot, 278degrees, extra-dry, double-pump, upside-down, skinny latte, and settle in. We're going to be here for a few minutes. Paying particular attention to your environment and how your body feels in the space you're sitting, mentally scan down— starting with the top of your head and working your way down to your toes. What are the areas of discomfort? Is your shirt not folded quite right against your back? Could your elbow be better positioned on the armrest of the chair? How about the itch that suddenly appeared on your cheek? Don't move. Don't reposition yourself. Don't scratch that itch. Surely by now your phone has alerted you a few times. Don't answer it, no matter how important you think the message is. Nose running? Pray you're sniffing power can overcome the rate of flow. After all that coffee your bladder is probably begging for your attention. Don't get up. Remember, you can't. The pterodactyl-sized fly that's been buzzing around all morning decides to perch itself on the ticklish part of your bare foot. May as well welcome it to the family since there's no way of shooing it away. Besides, who is going to hear you call out with your unintelligible inaudible voice when last night's Mexican dinner makes an appearance in your caregiver's day, leaving you alone for an excruciating twenty minutes? Welcome to life with ALS. Communication is imperative for survival, and alternatives have been developed for nearly every limitation. If you're blind, read braille. If you’re deaf or unable to speak, use written words and sign language. Unable to speak and can't use your hands? You're pretty fucked. I challenge you to get through your day unable to speak, write or gesture without going batshit crazy. The eye tracking solutions, which have been adapted from the user experience design and gaming industries, still have a long way to go before becoming universally accepted as sufficient alternatives to standard communication methods. "I'd explain it to you, but I'm fresh out of sock puppets and crayons." ~Ryan Johansen~ Ever since I moved home, we have been on a continual hunt for a home health aide (HHA) to help with the exhausting task of caring for me. There are as many agencies supplying these caregivers as there are patients in need. Where the challenge comes in is finding the right match between the patient and caregiver. My grandmother has had her "girl" living with her for years without so much as a hiccup in coverage. Why is my house a revolving door? I have a few unpleasant theories that are proving to be a reality. If you have been fortunate enough not to have experienced an HHA, then allow me to familiarize you. This is a highly commoditized, high turnover industry, with a low barrier to entry, not unlike housekeeping, but with two years of school. With baby boomers getting older, needing more care, and refusing to suffer the same fate as their parents in a nursing home, the desire to age at home is growing along with the demand for HHAs. The Bureau of Labor and Statistics (BLS) predicts the number of jobs for HHAs to increase by 36 percent through 2028.10 First and foremost, it's imperative to determine what type of help you need. If all grandma needs is someone to take her to the store, collect the mail, and cook on occasion, then "companion care" is probably all that's necessary. In the same report by the BLS, they note that no additional education beyond a high school diploma and the skills you learned at home are required to become an HHA. This is more than likely the reason for the poor experience we had with transient aides. Then there's this huge chasm in health needs that's the responsibility of HHAs. This is where I fall. The National Association for Home Care and Hospice governs the next tier of home health—everything from tasks as simple as applying lotion to changing bandages to helping with prescribed exercises. To earn their credentials, applicants must complete seventy-five hours of training, demonstrate their skills, and pass a written examination, though this is the minimum and requirements may be higher in certain states. Anything beyond that requires skilled nursing care, such as a Registered Nurse. Having gone through as many aides as we have, I can safely say that schooling has zero correlation to the aide's ability to provide care. I get it, the pay is abysmal—$24,200 is the median across the United States, and the aides must tolerate me and the craziness in my house.10 Why bother getting too invested for $12 per hour? But ferfuckssake, some of what you're being asked to do is really fucking basic. In fact, you probably did most of this stuff to yourself this morning. As a patient and recipient of HHA services, I'm not willing to be treated any other way than with dignity, respect, and to be provided with their full attention. The poor translation of your own care and feeding techniques to that for someone else is absolutely baffling. HHAs aren't the only caregivers requiring a re-education on this subject. My dear family and friends wishing to lend a generous hand feeding me are just as guilty. For example, think about wiping your mouth. Do you wipe from the middle to the outside corners or up and down? Or one big swipe from one side to another? No. Chances are you wipe from one corner to the middle and then the opposite corner to the middle, collecting whatever detritus remains neatly in the middle for removal by either napkin or tongue. The same goes for cleaning someone's eyes. Always from the inside corner to the outside corner. Never up and down. Don't understand the problem? Try it for yourself. Once you untuck your top eyelashes from your lower lid I promise you'll get it. The process of finding help is exhausting, repetitive, and never ending. You call an agency in your area and explain your needs. The Head Nurse In Charge (HNIC) comes to your house, and you explain your needs again, fill out a ream of paperwork, document your needs, then wait a week or two for the agency to find someone. You then schedule the first visit for the new aide and the HNIC to come to your house, then explain your needs again, and begin training the new aide. When this aide quits or gets themself fired, you have to endure this process all over again. I've lost count of how many aides we have been through. I'm not your average stroke or Parkinson's patient and I need to be cared for in a particular way. Nothing crazy or complex, though seemingly outside the mental capacity of most of these people calling themselves HHAs. No matter which website or agency we source these aides from, the problems we encounter are pervasive across the industry. In an attempt to circumvent the warm yellowish water of the kiddie pool of potential aides, I decided on some nontraditional routes to find help. My friend Howard has been wheelchair-bound with MS for the better part of a decade. He suggested I try the sugar daddy site SeekingArrangements. Unless I was looking for a banged-up ghetto version of Britney Spears during the meltdown years, that site wasn't proving useful. After about a year living in my parents' home with help from an aide during the morning and my parents taking over the duties from the afternoon through to the next day, my parents were burning out. They were walking around like zombies having gotten no sleep the previous night. I explored the idea of medicating myself with Ambien to help me sleep through the entire night and give them a rest, though apparently sleep aids and classic ALS respiratory issues mix like a long-tailed cat in a room full of rocking chairs. It was time to get more help during the night, so we went back to Caring Senior Services in Essex County, where we'd had success getting matched with our daytime aide, Kemberly. The night shift shouldn't be as demanding as what goes on during the day. No feeding, no pills, and if we set up the last feeding properly, I wouldn't have to get up and pee in the middle of the night. Danielle was described to us as responsible, dedicated, and caring. These are the traits of the person you want to take care of your loved ones. Punctual and accompanied by a close personal friend of mine and the owner of the agency, Seth Weisleder, she was ready to start. As described, she presented as intelligent, experienced, and gentle in her approach. The thick Haitian accent didn't bother us—after all, it was she who had the difficult task of understanding me. My parents went through the training process, explaining in detail our routine, preferences, and locations of items she would need throughout the night to help me. She nodded at all the appropriate times, indicating that what we were asking her was nothing out of the ordinary. The smile and nod proved to be misleading. Not until we were in the middle of the night and she didn't understand why I was protesting her technique for sitting me up, did we realize that the experience she claimed to have was nothing more than hearing about the term ALS. After churning through a few more of these pinnacles of modern care, we decided to handle this shift on our own. Sleep for me has become a luxury, with no rhyme or reason as to when I might be graced with its presence. With every passing hour in bed desperately trying to sleep, my body fights any attempt to find a comfortable position and relax. Whether the spasticity contorts my wrists into impossible positions, or I simply want to roll on my side, I need help with urgency. Some poor soul is going to suffer alongside me into the wee hours of the night, fixing my body's protests to my burning desire to sleep. These episodes happen every ten to fifteen minutes for the first few hours of the night, until I pass out fraught with exhaustion from struggling to alleviate whatever discomfort my nerves are inflicting on me at the moment. I sympathize with anyone stuck with the night shift looking after me. How quickly they learn that I'm a colossal pain in the ass. Then again, they did sign up for this gig. Who wouldn't want a night shift advertised as nothing more than helping me pee once a night? The rest of the time you can keep knitting your shark-shaped onesie or catch up on the last two seasons of 16 and Pregnant. The reality went more like this Lay me down around 10:30 p.m. Position the pillows, raise the head of the bed, and stuff my armpits with towels to stop the intense pressure against my sides from my arms that will contract involuntarily. Add hand splints, and we're ready for step two—chemicals. A few puffs on the weed pen to help me off to la-la land and dry the excess saliva. Overnight therapeutic (fancy Vaseline) drops in my eyes, since they are too weak to stay closed throughout the night, and Chapstick, since I'm apparently a mouth breather now. Step three: Set the TV to either of my two favorite genres—reality prison and surgery shows or documentaries. After that I'm all right on my own while I'm awake watching TV. Once I fall asleep, my body protests with severe ALSing, which goes something like this. I'm uncomfortable, eyes pop open. What's bothering me? My left hand has tightened and is pressing into the mattress. Try to move my hand but can't—too weak. Keep trying. Stress levels skyrocket. Remember your meditation. Pulse quickens, hands sweat profusely. Screw meditation. I'm not able to fix this on my own. Gotta call for help. I don't hear anyone coming. Body temperature skyrockets, legs stiffen into unbendable tree trunks, arms become vice grips against my ribs, hands clench into white knuckle fists. Where are they? Call out again. Breathing shallows and panic ensues. Panic! PANIC!! My parents come running down the stairs, flipping on the lights and attempting to decipher what's causing the stress. Most of the time the panic attacks stem from a feeling of being trapped. Trapped in the bed, trapped in the sheets, even trapped in my own body. They try desperately to figure out what I need to quell the panic. In the midst of adjusting limbs, towels, and sheets, the shaking begins. Legs shake violently, breathing requires energy and effort I physically can't expend. Sit me up! Can't breathe! Sit me up! My father wraps one arm under my neck, the other under my knees, and in one swift backwrenching move, sits me up. The panic attack stops almost instantly … for a moment. Pop the Xanax and have a few hits of the pen, dry the sweat, and try lying down again. Maybe this time I'll sleep. This happens at least eight to ten more times in the next three hours. I'm exhausted and my parents are distraught. No one sleeps and everyone is dragging their asses the next day. The bedroom became a source of anxiety, knowing what lay ahead of me in the night to come. We needed help overnight and resumed the search for an aide. The process of finding an aide willing to work overnight was similar to finding an aide for the daytime, only with a drastically smaller pool of candidates. It was a trial by fire. A day of training was typically sufficient, maybe two, if a problem arose. Let's go to sleep and see what happens. Wake up, need to call the aide for help. Shit … what's their name? Fuck it, they don't know mine so I'll make any noise I can squeak out and hope they aren't sleeping. No response. Didn't they hear me? Grunt again. My throat hurts now. Where are they? Come on! Panic sets in, pulse quickens. I can't hear over the deafening noise of my own heartbeat. Finally the aide enters the room. As if this was a casual Saturday stroll, they saunter in, flip the light on, and hover over me, waiting for a detailed explanation of why I interrupted their nap. The clever aides that we used would point to body parts, hoping they would eventually guess the correct one. Some got there, others kept going over the same parts, hoping I would change my mind on what was ailing me. After overcoming the communication hurdles, the necessary adjustments would be made, and I attempted to sleep once again. Not unlike the challenges of finding daytime help, the aides we met had their own challenges and excuses. Leonard quit because there were too many details, which was fine with me since he didn't shower. Rockell quit because she thought she had hurt her back (no lifting was required by the way), which was code for "I don't want to work this hard." Danielle was fired because she couldn't catch on, and Margaret because she couldn't stay awake. Please HHAs, don't assume I'm the same as your previous cases. Having heard the abbreviation ALS doesn't qualify as experience. You'll be found out soon enough. We're willing to work with any aides, but they must listen to the specifics of how I need to be cared for. Ask questions. And ferfuckssake, I'm right here in front of you. When you have a question about me, ask me. The economics of being a nighttime aide is surprising. The agency charges the same rate of $25 per hour as the daytime aide but offers a significantly lower work output. Figuring the eight-hour shift is 11:00 p.m. to 7:00 a.m. and I need their help ten times throughout any given night for ten minutes each, the agency earns $200 for one hundred minutes of real, actual work that the aide can't manage to handle. That's $200 per night for five nights each week; $1,000 per week, and $4,000 per month is exorbitant for the actual amount of work being performed. The daytime aide costs us the same but is working constantly. We also explored having a full-time live-in aide but decided against it because that person, tending to me 24/7, would burn out just the same as my parents in no time. If you're playing along at home, that's $52,000 per year spent on HHAs each year, but the help is worth the expense to give my parents the rest they desperately need. —11— Mentor … Discover … Inspire T HE DAY I came home from the Mayo Clinic back in January 2018, I was in a daze. People in my life were reaching out but I was in no mood to text more than a few words, let alone see anyone. Todd Adest, the husband of one of my then wife's friends, was persistent in reaching out to me, acknowledging how overwhelmed I must be, and all he wanted me to do was listen to what he had to say. Once I was able to pull myself together long enough to have a conversation without falling apart mid-sentence, I called Todd and told him I was ready to listen. He began by sharing his observation that I had mostly women in my life but no strong male support. That was true. I had a few guy friends but no one I felt close enough to confide in regularly. Frankly, I didn't understand the difference, and didn't have the capacity to process what he was talking about. He went on to tell me about the emotional and physical challenges I would come to experience and how I would need the type of support only men could give. I still didn't have a clue what this guy was talking about. I was way too deep in my own misery to question whatever he was telling me. During the call I was still in a place where I couldn't spend time in silence. I needed constant distraction to keep me from breaking down wherever I was at that moment. To have someone talk to me about the importance of the support I would receive from this organization and how my life was going to change beyond what I was able to imagine, left me unable to get out more than utterances of agreement between fits of sobbing. The mute button came in handy. He preempted my "what's in it for me?" by sharing a deeply personal story about the support the men in this organization gave him in his time of need. It was enough to make me sit up and listen. He described this organization as having been created for men to help each other become better men. He asked me to trust him, told me he had prepared the men for whenever I decided my first meeting would be, and they would provide the support he felt I needed. I already had guy friends, so why did I need to join this organization, which was most likely a front for an Eyes Wide Shut-themed, definitely homoerotic, pseudo cult, held in a corporate office after hours, when everyone else had gone home for the day and no one could hear you scream? Because my friends, and most likely yours, will never call you on your bullshit and certainly won't hold you accountable for the things you know you need to do to become the best man you're capable of becoming. There's no backing out now It took me a month before I dragged myself to the first meeting. I was given the address of a corporate office building near Grand Central I had passed a hundred times before and told to be there at 7:30 p.m. sharp. When I arrived, the men were not only expecting me, but one of them had been assigned to help me find my way to the meeting spot, help me with my crutches, and make sure I had everything I needed. If this was a foray into the cult, the welcome wagon they rolled out was certainly convincing. I can already hear what you're thinking: At the lowest point in Jeremy's life, Todd shows up and sucks him into a cult. What do you need this group for? Men are supposed to be manly. Take off your skirt and don't be a pansy. Go rub one out and you'll be fine. I didn't care. I was willing to try anything that might help. Just as promised, right when the clock hit 7:30 p.m., a man I would later find out was the captain of this team, gruffly announced the time and instructed everyone to form a circle. Rolls were called using only the last names of each man. It was a structure in an organization unlike anything I was familiar with. The meeting began with different members of the team reciting various parts of their standards, or code of ethics. The rationale for the recitation was to create an environment where each man could feel secure in sharing his deeply personal thoughts, and confident that what he shared would remain confidential and never leave the circle. As the only guest at the meeting that evening, the captain turned to me and very directly asked, "Schreiber, you're a guest here. Before we proceed, do we have your commitment that you will keep everything you hear confidential and you'll never repeat what another man shares outside of this circle?" I gave my agreement and commitment. At that moment, I knew I was in a safe environment with men I could trust. I had been to therapy in the past and was in therapy when I decided to attend this meeting. What I received from the experience that night benefited me in ways no therapist has come close to achieving. Each man was given an opportunity to "check in" at a number from one to ten, indicating how they were feeling at the time. I was feeling like shit and checked in at six. Once each man had given their response, those checking in at a six or below were called out to explain. Fuck. This is one of those situations where it would have been helpful to have known what was going to happen ahead of time. Too late. "Schreiber, you said you were a six. What's going on that you're not a ten?" They asked me how they could support me to get me to a ten. Not knowing what my choices were, one man suggested three options. I could simply vent and not receive any feedback, I could ask the men for input and guidance, or I could ask for something specific. I decided the second option made the most sense. Eleven complete strangers stood in a circle around me listening to my story and the reason why I had decided to attend this meeting. What I hadn't expected was how intensely the men listened. They weren't simply waiting for the fuckin' new guy to shut up and sit down. I summarized the battle with my health, my fears about what my future would look like, and angst about the emotional and physical divide at home. Once I had finished, the men thanked me for having the courage to share my feelings with openness and honesty. They asked whether I wanted their input and I did very much so, though there was no way in hell any of these guys could possibly know what I was experiencing, or for that matter have anything to say that would be useful in any way. After all, I had plenty of friends, albeit predominantly females, so what's the difference between talking with them and what I was doing with these men? But what came next was unexpected. The perspective of these men surprised me. This wasn't simply shooting the shit with your buddies; these men treated what I shared with the gravity it deserved. They took turns diving into different parts of my story, asking deeply thoughtful questions. It was obvious these men had experienced hardships and triumphs in their lives, and with that they were able to offer profound insight and support. Real men making a real impact For the remainder of the meeting, I sat quietly processing what had just occurred. These men had seen me and acknowledged what I was going through with a genuineness that no other person in my life could. The meeting marched on for three hours, following the agenda and time constraints established in the beginning. At the end, the men formed a tight huddle, arms around each other's shoulders. The captain turned the focus to me, since I was the guest, and asked me to summarize what I had learned from the experience that night. I confidently said, "What I learned by being part of this team tonight is that I'm not alone." Isolation, even when you're surrounded by friends and family, enhances the feeling of invisibility, and is often unavoidable, especially with a rare disease. Having attended countless walks, conferences, and fundraisers, I'm one of a small handful of people in attendance at these events who is living with the disease. Everyone else is a caregiver, widow, friend of, or a supporter. It was a sobering experience. I sat silently staring at my virtual keyboard, frantically writing a comment that was relevant to the conversation five minutes ago. The chatter of the able-bodied crowd around me marched on politely, directing only simple yes or no questions at me, hoping I felt included. I needed this support more than I realized. This team, which I later became a member of, affectionately named themselves Massive Dump. When I interact with any of the men in a team setting or one on one, I'm treated no differently to any other man. Although they wait a little longer for my response or question to be spelled out, I'm held to the same standards as the other men in every aspect. The men frequently ask one another how we can support a man in need. I'm never shy to tell the men, when I'm asked, that human connection is what I need most to survive. If they don't hear from me, they will reach out—to me and my parents—to make us know deep down that I and we're not alone. Who holds you accountable? As I've come to learn, the MDI (Mentor, Discover, Inspire) experience has a place in every man's life. Think about that difficult decision you have been dragging your ass on pulling the trigger. When was the last time one of your friends called you on your bullshit and asked you to make a commitment to make that decision by a certain date, then made you choose your own consequences if you lapsed on that commitment? Nowhere did that exist in my life except my job. Accountability to things outside my job didn't exist for my personal desires or goals. Sure, I was accountable to my then wife and other nonwork obligations, but no one was going to inspect me to ensure I made commitments to things I knew would help me grow as a man. The men on my team aren’t there to tell me what to do. They are there to support me in the process of becoming the man I always wanted to be. That happens by helping me dig deep to find the root cause of whatever is holding me back from becoming that man, identifying the one or two things I need to do to change my circumstances, and holding me accountable to make sure that I follow through on those things by the date and time I committed. If the foundation of MDI was built on anything other than trust and confidentiality, it wouldn't have been as successful as it has for as long as it has been around. Still not catching on? Well, let's use everyone's favorite New Year's resolution as an example—going to the gym. You brag to your buddies that you're going to sweat off the fourth-quarter beer gut and join a gym. Chances are that you're like most of us and have been donating to your gym since last New Year's and haven't stepped foot in there since. Now what's happening? January 1st rolls around, and you vow never to do that again, after waking up covered in a thin film of sweat, stale champagne, and shame when you remember your resolution: Go to the gym. But when you arrive, the place is packed. You can smell the booze sweating out of everyone's pores. Everyone else seems to have made the same wellintentioned and utterly meaningless resolution. Let's be honest, you're not going back anytime soon. When your gym shoes have gone unworn and you have forgotten the combination to your locker, all the well-intentioned momentum you have for taking care of your health flies out the window. Face it, this is no one's fault but your own. Don't get me wrong, I can also come up with anything else to do besides exercise, but when you feel like shit and your belly button looks like someone pressed their thumb into the middle of a fresh ball of dough rather than a chip out of a slab of marble, you have no one to blame besides yourself. You haven't done much to get yourself to the gym more than a handful of times. And why would you? It's January and it's fucking cold. Your friends laugh at you because they heard you make these empty promises last year, and the hot receptionist that convinced you to join in the first place has lost interest in your shitty flaccid dad bod. This is where your men's team will be of service. I say "team" and not "group" simply because teams work together toward a common goal. Whether that goal is a service to the community, such as helping rebuild part of a man's house destroyed in a flood, or finding a creative way to help another man meet a health goal, the themes are teamwork, accountability, and helping men become the man they have always wanted to be. Every one of us who has ever had a job has been held accountable. Whether it was accountability to a middle-level manager, shareholders and investors, or to oneself as the owner of one's own company, we have each been accountable at work. Why then are we incapable of maintaining that accountability for ourselves when we get home? Why do we allow ourselves to fall short in our personal lives? Perhaps if I thought I would be hotbranded with the word "failure" across the forehead if I missed the gym even once, I might be motivated to stick to my routine. Sterling Institute of Relationship and the Sterling Men’s Weekend As part of the learning process a man goes through with the MDI organization, there's a weekend-long event hosted by the founder Justin Sterling. Not knowing anything about what the weekend consisted of, or the value I was supposed to gain, I was reluctant to take part. However, what I did know was the overwhelmingly positive feedback shared with me by other men who had completed the weekend. I allowed the apprehension I felt about the logistics of the weekend to create a mental roadblock that discouraged me from going. I barely had a routine down at home, dressing and feeding myself was becoming more difficult, and, frankly, who wants to spend a weekend with a bunch of dudes? It was going to smell like the toe webbing of an Ethiopian marathon runner. I trusted the men I was getting to know on my team in NYC. They had previously completed this weekend and collectively supported me and encouraged me to go. After much debate, and in the supportive circle of one of the weekly team meetings, I said, "Fuck it," and I committed to going without any more understanding of what I was about to get myself into. Here's what I knew about "The Weekend" The Purpose of the Sterling Institute of Relationship: To transform the quality of people's relationships by defining the differences between men and women so that they know themselves, become closer to each other, and have the natural and loving relationship that will produce the partnership and the context necessary for the transition to a true global community. The Purpose of the Sterling Men's Weekend: To engage in the process of locating the source of your power and discovering and dissolving the barriers between you and manifesting that power so that you experience total freedom as only a man can and with that freedom be the man you always wanted to be.11 With the date of The Weekend rapidly approaching, I was in fullblown procrastination mode about registering, figuring I could ignore it and not succumb to the influence of the men on my team. This was going to be a three-day event, and if I was going I needed to pack and get a ride sorted out. It was getting late in the day when I got a call from Max Rosen, one of the more senior men on the team, asking whether he could come over to talk. I knew where this was going, though I respected this man tremendously and owed him and myself the time to talk through my hesitation. We sat outside the Dunkin' Donuts on the ground floor of my apartment building for a long time dissecting each and every objection I had. All of my objections were met with the same two responses: Trust the men; that's exactly why you need the weekend. The men? Who were these men and why should I trust them? They don't know my needs. They don't know the complexities of caring for me. And frankly, why should I ask anyone to be my babysitter? I was dealing with my own mortality and didn't want to waste three days at a conference that wasn't going to benefit my health and well-being in any obvious way. Ultimately I decided to go. Better not to ask A man from my team drove me and two other yet-to-be indoctrinated men. There was tons of excitement in the car as we made our way to what was going to become our home for the next two and a half days. I'm a fairly seasoned traveler and I've stayed in every type and level of accommodation out there but believe me when I tell you that past guests were being generous when they gave this murder factory the 1.5 stars on TripAdvisor. Maybe the rooms won't be as bad as the exterior, lobby, hallways, or parking lot. My optimism was getting the better of me again. Two men helped me into my room, and when the door was flung open, I was greeted by an interior decorated by Jeffrey Dahmer and Hannibal Lecter. Maybe it was the carpet being deeply stained with what I hoped was coffee. Or maybe the dark red comforter ready to soak up the day's next kill. Or possibly it was the flickering, incandescent rape light in the bathroom. When the fear subsided and I was finally able to unclench my asshole, I dropped my bags on the one surface that looked as if it was heavily Lysoled and went to the lobby to get this weekend started. Everyone was milling around the lobby and I needed to test out the facilities. At this point I was still using forearm crutches, and aside from these medieval walking sticks being fairly uncomfortable and making me look like Bambi on ice, I was able to walk at a fairly normal pace. The restrooms were about 75 feet away from the lobby and approaching the men's room door like any non-handicapped accessible door, I leaned a shoulder into the door, made a gap, and jammed the foot of the crutch underneath the door. This is the time when the kindness of strangers comes in handy, but since I was the only person around, I repeated this shoulderlean-crutch-plant dance twice more until the opening was wide enough for me to simultaneously slip my body through. I yanked the crutch out from its position as a makeshift door stop before replanting both crutches firmly in front of me, allowing me to take the next step, as was the process for every door I encountered. The urinals were close to the entrance of the bathroom. I only needed to turn ninety degrees to my right to be facing the urinal. Still a few feet away, I started my approach. These crutches and my general difficulty with walking always caused me to spend the majority of the time looking at the ground in front of my feet. As long as the ground appeared clear of debris and stable, it was safe to take the next step. As I was about a yard from the target, I felt my right crutch begin to slide. No big deal, my legs are stable, and my left crutch is firmly planted, I'm certain of it. With my head down looking for obstacles, I realized I was off balance. ALS causes the muscles to stiffen, making most movements difficult. Imagine spending all day outside on a frigid winter's day, being inadequately dressed, and coming back inside. How difficult is it to bend your knees? Your arms? Your wrists? Your fingers? This is a glimpse into how my body feels every day. Attempting any quick movements is an exercise in futility. You learn quickly not to bother going after the pen rolling off the table or attempting to hold a closing elevator door. This stiffness, or spasticity as the experts call it, prevented me from recovering my stability as I began to fall. I knew at this point I was going down and there was nothing I could do to save myself. All I could think to myself while I was falling was, Please don't land on the piss mat. Please don't land on the piss mat. Ladies, if you can't envision what I'm talking about, take a quick peek in the men's room one day. This weekend hadn't officially begun and already I regretted being there. Lying on the cold and slippery floor, I needed help. I felt the warmth of the blood running down the right side of my face, off my chin and into a small puddle on the floor. I would later come to find out I had whacked my head squarely on the front edge of the urinal. I was forever unclean. I called out for help five or six times with only the echo of my own voice answering my pleas. With no one responding, I reached for the phone in my pocket, digging with all the strength I had, only to be defeated by my weakened fingers when they loosely folded around the denim that was keeping my phone hostage. Needing an alternate route to liberate my phone, I slid the rectangular brick to the opening of my pocket from the outside of my pants. Unorthodox, but it worked. Who would I call? The man who drove me that morning had already said goodbye, and the men attending the weekend were all new to MDI, or at least new to me. The only man I could think of to come to the rescue was the man who had brought me into the organization. On the off chance he was in the vicinity, he was my best chance to get help. I squeezed the sides of my phone to activate Siri, though when I responded, the familiar voice asked me to repeat my command. I knew I was beginning to suffer the speech ailments that are all too familiar with ALS. Finally, after repeating the command to place a call, the phone began to dial. "Help! Are you here? I fell in the bathroom." Was I really about to use this cliché phrase? You better believe I was. "And I can't get up." At what seemed like lightning speed, four men burst through the bathroom door, picked me up, and slid a chair under me. Conveniently, one of the men was a paramedic, or a doctor, or a random guy who happened to have a roll of gauze on him. They ran through all the standard concussion evaluation questions, but I already knew I was all right. I was more shaken than hurt. The men lifted the chair bar mitzvah style and carried me out of the bathroom. Standing in front of us, three other men were rapidly assembling a brand-new push wheelchair for me. Later I found out that these men had been assigned to look after me all weekend and, in support, took it upon themselves to rush over to the local Walmart and set this up for me. Three complete strangers. This is only a small piece of the type of positivity and service that MDI instills in men. According to "Chateau Dahmer" their solution to the problem was a "Wet Floor" sign in the offending area. There were no complimentary night stays, no vouchers for the local IHOP, which I'm positive there must have been many of in this area, and no manager in an ill-fitting hand-me-down suit and greasy combover groveling for a promise not to sue. Jeremy’s slip and fall at the Sterling Men’s Weekend, May 2018 However, the feeling of filth, shame, and disgust wore off quickly once the weekend got started. What came next was an indescribable experience, primarily because of the range of mental, physical, and emotional exercises we endured. In reality, unfortunately, the confidentiality agreement makes the experience indescribable. This isn't one of those Tom Cruise jumping on Oprah's couch to convince you he's straight kind of moments, though after completing The Weekend in May 2018, I can confidently say that it was the best decision I ever made. The only word sufficiently powerful and encompassing to accurately summarize those two and a half days is: transformative. Ask me now what I've gotten out of this organization and how it made me into the man I always wanted to be, and I would respond like this: Men. I'm Schreiber. For the last two and a half years I've been battling ALS. You men met me one month after I was diagnosed. My life and my parents' lives have been turned upside down. Physically, I've been imprisoned, and my ability to speak has been robbed. However, without this experience, and the support of my men, I may never have become the man I wanted to be. I've broken down barriers once preventing me from owning my truths, from being emotionally open, from strengthening important relationships, and from establishing and upholding my terms. I became determined to begin living with ALS rather than dying from it. Most important, what I learned as a member of Team Massive Dump is that I'm not alone. —12— Be Your Own Healthcare Champion "You need to be the captain of your healing. You must be vigilant and responsible for your health on every level." ~Dr. Craig Oster~ T HOUGH MY tenure as a member of MDI has been relatively short compared to some who clock in at thirty years or more, I've met many men for whom I have profound respect. One of those men is Howard Spierer, whom I met at a regional event where teams gathered from all over the tri-state region. He was seated in a motorized wheelchair on the covered front porch of the dining hall of the afternoon's rented campground, avoiding the midday sun. Without a wheelchair of my own, four men carried me in a chair up to the porch to join Howard and three other men who were skipping the latest round of activities. I noticed him first, since he was the only man at this event with a glaringly obvious handicap, though my attention quickly shifted to what he was saying, and the handicap faded away. Considered one of the founders of MDI, Howard spoke with purpose and didn't mince words. Any sentiment of a handicap was imperceptible, and he wasn't going to be made invisible by anyone who encountered him. Although we have significant differences between our diseases, he became a role model and earned my respect right then and there. That's why I asked him to contribute to a section illustrating his experience as a longterm survivor of a chronic and terminal illness. The View From Down Here Contributed by Howard Spierer I've been at cocktail parties and had to deal with looking at people's backsides. And I've dealt with the frustration of being told that a place is handicapped accessible only to find out that it just has a couple of steps. But generally I don't feel invisible in my chair, in part because I would tend to be somewhat of an in-your-face kind of guy. I prefer to make it hard for people to ignore me. That being said, if I have a gripe it would be about how people tend not to know how to relate to me. I have multiple sclerosis. I've had it for thirty years but have only been without mobility for the last five. Everyone seems to feel that I'm fragile. I certainly don't feel fragile. My version of the disease was a very slow deterioration. For the first twenty years I was in denial. I'm still jumping out of planes, whitewater rafting, basically putting myself at risk. I think like many people born with disabilities I worked with what I had, and it didn't feel like I was at a disadvantage. I don't need or want sympathy. I suspect it's different for someone who suddenly finds themselves in a new situation. I know when I started to lose my mobility I was very conscious of not letting other people perceive that something was wrong. I've come to realize that's more about me than them. These days what I want is an opportunity to participate in whatever way possible. It doesn't mean I need to be a part of everything. Sometimes I get equal pleasure just observing others doing something full out. Luckily, before my illness I had a fairly full life. I have a pretty full memory bank that allows me to enjoy things vicariously because I'm able to remember what it felt like when I did it. I hate that people stand around and look uncomfortable as they try to figure out how to make me feel included. Any act of participation by me doesn't warrant a massive celebration. Sometimes I try and fail. That's okay. So if you're reading this wondering how you can help, my answer would be just be yourself and don't worry about my feelings. Thank you Howard. We each have our own journey. Howard's attitude toward the deck he's been dealt is one of strength, leadership, and perseverance that each of us facing adversity should incorporate. After a decade and a half in a sales career, I've learned that there's more than one way to get the information you need. This has proven valuable in the search for no-bullshit answers about my condition, new therapies, and finding out that your doctor is in over their head. Running straight to the doctor Foot drop was first. Not long after the Brooklyn Half Marathon in May 2016, I was experiencing shin splints in both legs. I got a prescription for physical therapy, confident that a few weeks of what amounts to supervised exercises and I would go back to running. Weeks turned into months and the pain had subsided only about 50 percent. This was due to two factors. One, there was still something wrong. Two, the doctor in charge of the practice was scamming his patients' insurance companies. Before I could get a prescription for physical therapy, I wanted to see a specialist. I could have gone to my primary care doctor, but he would have referred me to a specialist anyway. I'm my own health champion, remember? Finding an orthopedic doctor isn't as easy as finding a doctor in any other specialty. At least this is the case in New York, where orthopedic doctors specialize in certain sections of the body. I could have sworn the foot bone was connected to the leg bone, and it was that simple. What was the purpose of dividing up the skeleton and only allowing certain surgeons to practice on certain parts? "It is what it is," was the common response. I'm willing to bet that this one word is the reason: insurance. Fine, I'll play along. All I wanted was a script for physical therapy. So, I made an appointment with Dr. Graham Whyte, an orthopedic surgeon. When I arrived at the practice, I was ushered into an office to the right of the front desk. Huge windows, a glass desk, and nice chairs. With the exception of the tacky animal skin rug, it was well appointed. Dr. Bruce Paswall, a spitting image of Bruce Springsteen, complete with a soul patch, reviewed the reason for my visit, and slid an electronic tablet across the desk, asking me to enter my info. Before I continue, I would first like to address certain commonalities (for that read: poor customer service) plaguing outpatient medical offices. These commonalities are learned behaviors by the new office staff from the tenured office staff. Sure, the practice owner could put a stop to the lack of professionalism and compassion, if they weren't seeing ten patients each hour. An open letter to medical office practice managers Dear Practice Managers, We, as recipients of the care of your practitioners and staff, would like to make you aware of the experience we are subject to in your offices. We acknowledge that you may not recognize these behaviors in your particular practice, though this is most likely due to your tenure in the practice, which is why we urge you to pay special attention to the recommendations below. When you focus first on the satisfaction of the patient, every person involved in the office will benefit. Before the visit: ● Patient Portal. Oftentimes, this is the first impression of your practice. It is convenient for patients and the practice alike. For us, it is an easy way to communicate with the office, schedule appointments, and request refills. In your practice, the benefits are measured in hundreds of thousands of dollars in saved man hours. While we understand that the portal is an investment, we will not be responsible for helping you recover from overpaying. Please do not charge us to use the portal. ● Paperwork. Request this from the patient BEFORE the date of the appointment. We do not want to spend a minute longer in your office than we have to. Send us an email with a link to the forms to fill out. ● Medications. We will tolerate listing our medications only once. Best practice is to include this request in the paperwork requested before our visit. Once the list is provided, each care provider we interact with during our visit should review this list rather than asking us to list the medications we are taking again. Redundancy for safety is acceptable. Redundancy because you are not paying attention is infuriating. This is a good way to teach your team about communication. In the waiting room: ● Curate your reading material. Ensuring the magazines are current is a baseline responsibility. Have content relevant to your patients. Ferfuckssake, there is not a person on this planet who reads Family Circle. ● Health Insurance Portability and Accountability Act. Comply with it, or do not, but choose one. We do not mind coming around the desk to sign in to protect our privacy, as long as you do not then bark out our full name and ailment into the cavernous waiting room for all to hear. ● Scheduling Challenges, Part 1. We are willing to wait up to ten minutes after the start time of our appointment. Any longer and we ask that you proactively notify us with the approximate waiting time. And do not bullshit us. We saw the hot drug rep in the doctor's office waiting to shtup him in exchange for writing more of whatever big dick drug she's peddling. During the visit: ● Scheduling Challenges, Part 2. We understand that as commercially insured patients, your practice cannot buy a single toner cartridge with what our insurance plan reimburses for our visit. However, making up for that injustice by cramming in ten patients an hour is inhumane. Do not fight the trend, let the hospital purchase your practice. Everyone will be better off. ● Ancillary Services and Products. We recognize that practicing medicine is no longer a lucrative profession and offering cash-paying services like laser hair removal and your own brand of skin care products may be appealing. However, we, and probably every medical accreditation organization, suggest you stick with the skills of your specialty. A weekend course on root canals does not turn a dentist into an endodontist. ● Eye Contact. Our goal in visiting your office is to see the doctor, not to watch them enter notes into your electronic medical records. Your outcomes will improve when you enable the doctor to focus on us, the patient. ● Pro Tip. Improve your outcomes to improve your revenue. Before the doctor enters the room, these two things will improve the workflow: Brief them on the reason for our visit and enter our pertinent information in the electronic medical records. After the visit: ● Follow Up. The majority of your patients have no medical training, which is why we are in your office. Ninety percent of what we were told was forgotten by the time we got to the parking lot. This means we have to call you to get the same answers we received while we were in your office, creating more work for both of us. At the conclusion of the visit, use that expensive patient portal to send the doctor's notes from the visit. You paid for the feature, so you may as well use it. We, the patients under the care of your office, acknowledge the complexity of running a medical office. We ask for your consideration in addressing these matters in a timely fashion. This will improve the patients' experience and the workflow of your office. While we can only call your attention to these issues and ask for your help, please be aware that our ability to wreck your reputation online is far greater than your ability to stop us. We look forward to continuing our relationship in new and improved ways. Sincerely, Committee of Resentful Angry Patients (C.R.A.P.) If it walks like a duck … Dr. Paswall's electronic tablet asked for all sorts of things unrelated to the reason for my visit. Fine, I'll fill out your silly form. I wanted to see the doctor and get these shin splints addressed. He was a smooth talker, proudly highlighting the other services offered in the practice, so much so that I didn't have a clue what I was there for anymore. Fine! I just want to see the doctor I made an appointment with and go home. A few minutes later, I was called in to see Dr. Whyte. Nice guy. Professional and caring. He sent me for the requisite cover your ass by ordering excess tests X-ray. As compassionate as Dr. Whyte was, there was an underlying motive. Not because he in particular was doing something shady—that was the owner of his practice with his hand in the cookie jar—but because there isn't an orthopedic doctor out there that prefers to send their patients to physical therapy over the lucrative operating room. Dr. Whyte's admin called, the X-ray was unremarkable, as I expected, and I was informed the doctor wanted me to begin physical therapy (PT). Coincidentally, there was a PT practice in that very office. After the first few sessions, Dr. Paswall approached me, inquiring about my experience at the practice so far. In the same breath, he recommended I allow him to evaluate me for potential misalignment of my spine and hips. I was clear when I told him my insurance didn't cover chiropractic, but he waved his hand dismissively and said, "If your insurance doesn't cover it, don't worry about it." Not sure what that meant, but I was certain I would remember his offer if the time ever came. This was a high-volume practice, with one physical therapist working on multiple patients simultaneously. The gold standard is one-on-one care. In the same room where the four PT tables sat was a regularly scheduled Pilates class run by Florence, the angriest French woman I had ever met. Maybe she wasn't angry—perhaps she was simply reviewing her grocery list. I couldn't tell one way or the other. C'est la vie?! In addition to the PT tables and the Pilates classes in the room, also sat some rather large exercise equipment. Space is understandably at a premium in Manhattan, but this was excessive. I just wanted my shins to feel better and I would be on my way. Paswall frequently stopped by this room during my PT sessions, asking how I was feeling, and ushering me to the chiropractic table after my sessions. Great customer service! Or so I thought. A pattern began to develop in his seemingly altruistic drop-by. Only when Florence was teaching her Pilates classes would Paswall appear. Aha! You're a dirty old man Bruce. That doesn't make you a criminal, just lecherous. A few months went by as I diligently attended the twiceweekly PT sessions. I began noticing that my right leg felt slower than my left. John McGrannich, physical therapist extraordinaire and friend, focused the sessions on rebuilding the strength in that leg. Somewhere around that time I was reviewing my insurance explanation of benefits (EOB) and saw a few errant charge (CPT) codes from this office. I called the office asking to speak with the person handling Dr. Paswall's billing. "She's at lunch," or "She's not available," or "She's on vacation," were typical replies. Maybe it was time for her weekly Klan rally, or perhaps this was the week she was test piloting a new military fighter jet. Someone didn't want me asking questions. I took the EOBs with me to the next PT session. After exchanging pleasantries, I showed the receptionist the extra CPT codes on the EOBs and played dumb. "I get these forms all the time, but I hardly ever look at them. Can you tell me what these numbers mean?" This wasn't my first EOB rodeo, and I knew something wasn't right. The receptionist attempted to reconcile the EOBs against my chart on her computer. Walking down the list, she told me which dates I had been treated by Paswall or another practitioner in the office. No. Nope. Wasn't here. Don't know who that is. She quickly became flustered and asked me to speak with Paswall in his office. The doctor invited me in and asked me what he could help me with. Get rid of that tacky animal skin rug, for starters, ran through my mind. Instead, I motioned to the extra charges on my EOBs and stated that neither the receptionist nor I could make heads nor tails of them or of the three additional CPT codes tacked onto each date of service. "We add the extra codes automatically for all our patients. You can just ignore them," offered Paswall. "Can you tell me what they are for? I know one of the CPT codes is for PT, but what about the others?" I pressed on. "My insurance was charged on all of these dates with the extra codes. Was it an error? If it was, no problem, I'll give my insurance company a call and let them know there have been some mistakes." "How much?" he asked. "How much what?" I wanted to see how far down the rabbit hole I could take this. Paswall cut right to chase and said, "Tally up the amount you were overcharged, and I'll cut you a check." Considering it was the insurance company he was attempting to defraud it wouldn't make sense to cut me a check. However, if I wasn't so deathly afraid of karma, I would have taken cash, and then called the insurance company. But knowing I was about to finish the PT sessions in another week, I didn't want to entangle myself any further, so I told the doctor I would let him know what I decided to do. Fuck that noise! I told John what happened, and I was outta there. Once I got back to my apartment, I did a little digging through my EOBs generated by Dr. Paswall's office and found this to have been going on since my first visit to his office. I decided to call the fraud department of my insurance company and recommend they do some digging of their own. I get it; medicine doesn't pay what it once did, and you need to find creative ways to improve your revenue. But dude! C'mon. If you're gonna scam insurance companies, be discrete. A little bit here, a little bit there, and chances are no one will notice. The old saying goes: "Pigs get fat, hogs get slaughtered." A few weeks later I decided to google the good doctor just for shits and giggles. Turns out he was more than a dirty old man scamming insurance companies. Looks like he was a bit of a woman hater. When Paswall interviewed potential new female employees, he enquired about their reproductive plans. If the candidate hinted at being even the slightest bit interested in getting pregnant, Paswall would immediately dissuade them from pursuing the job. And what if you were caught being preggers on the job? Adios! Paswall would unceremoniously show you the door, just as he did with the three women who brought the 2015 lawsuit against him.12 It's important to know there are specific laws protecting against pregnancy discrimination. Wait. What am I talking about? There shouldn't have to be laws around this because people shouldn't be that bad at being human. Apparently, these laws exist for people like Dr. Bruce Paswall. So, $6.181 million dollars in damages later, it's no longer a mystery why Paswall decided to start scamming insurance. —13— Why Can't I Get an Answer? M Y RIGHT leg wasn't getting any better, and I was beginning to trip frequently. Running was out of the question for the time being. My daily run before work had been such a source of joy for me that I was determined to kick the ass of whatever this was and get back into my usual loop. Starting at 40th Street and 2nd Avenue, I would traverse over to 3rd Avenue, up to 59th Street, past the Apple Store and the Plaza Hotel, and into the south-east corner of Central Park. From there I would make my way north along the street until I reached the reservoir, where I would cut in. On days when I had more time, I would skip the reservoir, keep traveling north and wrap around the very top of Central Park (110th Street) and back down the west side of the park. There's nothing like a brisk twelve miles to start your day. It was exhilarating, but for the time being, running would have to wait. All alone in a crowded room The exhaustive efforts I've laid out below, trying to find out what was wrong with me, are unfortunately not uncommon. On average, it takes one year for a person to get a definitive diagnosis of ALS. There are several reasons why it takes this long: ● There are roughly 16,000 people in the United States living with ALS. ● Some 90 percent of the cases are considered sporadic, meaning there's no known cause. If you served in the military, you're twice as likely to get ALS, no matter what branch you served in or where you were deployed. The remaining 10 percent of cases are familial. If your father or mother passed away from ALS, unless it was sporadic, there's a 50 percent chance you're next. ● Figuring around 16,000 neurologists in the United States, each practice may only see a small handful of ALS patients come through their doors over the life of the practice.13 ● At the time of writing this book, no single test exists to diagnose sporadic ALS cases. ● Many diseases exist that can mimic ALS. Lyme disease, heavy metal intoxication, and myasthenia gravis to name a few. ● ALS is not one singular disease. As we have come to use the word "cancer" as a layperson's catchall phrase, we know there are dozens of types of cancer that exist, and even more ways to get cancer. We also understand there's no singular treatment for all cancers. It wasn't all that long ago that HIV and breast cancer were death sentences. It's only a matter of time before the types, origins, and treatments of ALS are identified. Given those odds, it was going to be a challenge to get a proper diagnosis. May 2017, Neurologist #1 Realizing the weakness in my leg wasn't structural, I found a neurologist near my apartment, just to rule out anything serious. Andreas Neophytides, MD, New York University Hospital, did what I would later learn was a typical neurological examination. To assist him in making a diagnosis, I was sent to get an MRI (magnetic resonance imaging) scan of my brain and entire spine. Called the cervical, thoracic, and lumbar (CTL) regions, the report would tell him whether any lesions were present, indicating the possibility of multiple sclerosis (MS). I returned to his office for the results. Fortunately, the scan was unremarkable. Dr. Neophytides told me, "This is one of three things. A pinched nerve, multifocal motor neuropathy (MMN) or motor neuron disease (MND). Unfortunately, this is out of my expertise." Without a diagnosis and still having tons of questions, he referred me to Hiroshi Mitsumoto, MD at Columbia Presbyterian Hospital. Dr. Mitsumoto was well published and working on leading edge research in neurology, and more specifically MNDs. June 2017, Neurologist #2 In the four weeks I waited to see him, I went to a spinal surgeon to rule out the pinched nerve issue. Armed with a folder of my records growing in heft, I shared the report and DVD of the head and CTL scan. Again, unremarkable. I left the office with more questions and the knowledge that I didn't have a pinched nerve or slipped disc. Going to Dr. Mitsumoto's office on 168th Street and Fort Washington Avenue was a hike. Fortunately, the solid hour on the subway landed me right in front of his office. A man of few words, he ordered more tests, including blood work and what would become the first of many electromyography (EMG) tests. This test measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities. During the test, small electrodes (looked like needles to me) are inserted into the muscle. Every muscle. Repeatedly. And then wiggled around. Repeatedly. Another two weeks and I was back in Dr. Mitsumoto’s office to discuss the results. He told me, in a thick Japanese accent, that whatever was happening to me was due to my nerves demyelinating, or the destruction of my nerve tissue. He quickly sketched the problem on a scrap of paper and talked us through what was happening. His presumptions coincided with Dr. Neophytides saying that whatever I had was either MMN or MND. We would learn which after receiving intravenous immunoglobulin (IVIg), which is an aggressive and expensive therapy to be administered over the course of six hours, twice a week, for the next three months. We attempted to ask a slew of questions, mostly aimed at trying to get Dr. Mitsumoto to admit this wasn't a big deal, and to just take two of these and call him in the morning. However, it was to no avail, as the doctor had a different agenda, and it wasn't me. His bedside manner left much to be desired, but I didn't care. He could have thrown his coffee at me as long as he could help me. Still working at this time, I was able to set up the infusions at home rather than the typical infusion center. Sitting in a hospital version of a living room recliner twelve hours a week, with six to eight other people each getting their own infusions wasn't my idea of a good time. Week after week, the nurse came to our tiny apartment and administered bag after bag of what would amount to a threemonth test. I did my best to stay off Google, not wanting to go down the obvious rabbit hole and scare myself worse than I already was. I kept myself occupied by pouring all my energy into my day job, doing as much as I could from my apartment and avoiding face to face customer meetings whenever possible. Little did I know it would be my most successful year ever. Not wanting to return to the upper, upper, upper west side to be hurried along by Dr. Mitsumoto, I started a search for a highly regarded neurologist with a deep interest in research. Basically I wanted an equivalent to Dr. Mitsumoto, but closer to my apartment, and with a modicum of bedside manner. August 2017, Neurologist #3 All my research brought me to Dale Lange, MD. This guy was a rock star. Chairman of Neurology and Neurologist-in-Chief at the Hospital for Special Surgery and a Professor of Neurology at Weill Medical College of Cornell University. He's an Attending Physician at both the Hospital for Special Surgery and New York Presbyterian Hospital's Weill Cornell campus. He's also the current President of the New York State Neurological Society. Whatever all that meant, I knew this was the guy. I had to get on his calendar. However, I would quickly find out he wasn't taking any new patients. Fuck. Fortunately, a career in sales had taught me that "no" is relatively meaningless. I built a packet of all things relevant to my case, and along with a handwritten letter (yes, seriously), I went to his office and waited. Not wanting to hand my survival over to a disgruntled desk jockey in his waiting room, I asked for the highest level clinical and research manager on his staff. Mona Shabazi greeted me in the lobby. I explained my purpose for coming in person and that I understood the practice wasn't accepting new patients. I asked if she would personally hand the packet to Dr. Lange, and she agreed. Not wanting to leave anything to chance, I found Dr. Lange's personal email address and wrote the same letter I had handwritten. If that didn't work, I wasn't above figuring out how to make my way into his kitchen and waiting there. I'm kidding … sorta. Only a few days later, Dr. Lange's office called and said he would take me on as a patient. He was able to schedule an appointment for me quickly. How was that? Remember, I hand delivered all the pertinent information about my case to him. That way, I eliminated any precursor tests, potentially delaying an initial visit. First things first. A new doctor meant new tests. I get it, the EMG, blood work, and MRI I received last week on the west side of town couldn't possibly match up to the EMG, blood work, and MRI on the east side of town. I was beginning to feel like a human pin cushion. Dr. Lange ordered different tests from the other doctors, including full genetic sequencing, a diffusion tensor image of my brain (done in an MRI to look for iron deposits), and a magnetic stimulation test (approved for treating depression and migraines, off label for nerve conduction studies). Dr. Lange had a kinder approach and was willing to take as much time answering questions as I needed. He approached my case differently to my experience with any other practitioners I had encountered in my personal or professional experiences. He was attempting to build a case for a nondestructive disease. The flu isn't destructive. Hell, most cancers and even HIV had become walks in the park. Whatever I had was doing some awful things to me. While I was being poked and prodded from all angles, I had plenty of time to think. Aside from the immediate concern of this fuckin' nurse gets one more chance to find my vein, the thought that kept bouncing off the front of my brain was, If this is what I'm left with, I can handle this. Dr. Lange kept me on the IVIg for a few more months, eventually making the diagnosis of stiff person syndrome. Feel free to snicker like a fifth-grade delinquent in wintertime, who poured water on the stairs and is waiting for his math teacher to eat shit down the icy concrete flight. But this disease was far rarer. Like one in a million rare. Go big or go home? After a few weeks of adjusting to the idea of that diagnosis, I still had questions. I was already on the one treatment for this rare disease, but I wasn't satisfied. It didn't sit right with me for a multitude of reasons. There were symptoms that didn't fit in with any of the four types of this disease. Back to square one. My own personal quarterback As I started to go to more and more doctors, a common theme arose. Physicians were hyper-specialized in their training and didn't even have a precursory understanding of different and possibly beneficial alternative therapies available in their own field of study. Add this to all the research I was doing on my own about alternative and experimental therapies, and I realized I needed a quarterback to help straighten this all out. My employer at the time, Perfecto (now called Perforce), approached me asking how they could help. I wasn't actually sure what to ask for. We tossed around a few ideas, mostly focused on the company paying for one or two large expenses. Unfortunately, I wasn't at the stage where I knew what needed to happen to get better. Keith Butler, Chief Revenue Officer, called to tell me his wife Kitty had an idea that he thought I would like. Kitty told me about this woman named Barbara Abruzzo, who was a nurse by training, turned Healthcare Advocate. I had never heard of this, but the concept made perfect sense. She could be the quarterback I was looking for. Throughout my professional working career, I've always worked for massive global companies: Sanofi Aventis, GE Healthcare, and Oracle. These are companies so large that being considered a cog in the machine would have been a promotion. If I were to get sick while working for one of those behemoths, I'm sure the line item I represented would have been replaced by an equally insignificant line item—at half the cost. I was fortunate to have worked for Perfecto. Eran Yaniv, CEO, Yoram Mizrahi, CTO, Keith Butler, CRO, my two bosses Chris Healey and Jason Flick, and the rest of the Perfecto team built a family first culture that I was proud to call myself a part of. After speaking to her only once on the phone, quarterback Barbara asked me to meet with her at her apartment. She was sixty-something, eclectic, with pops of purple in her jet-black hair and living in one of the last rent-stabilized, non-handicapped accessible apartments in NYC. We talked for almost two hours, reviewing what had occurred during the past few months to get me to this point. She committed to building a plan for me that would incorporate a multitude of therapies she was certain would be worth trying. Fine with me. My symptoms were gradually worsening, and I was willing to try anything. The plan Barbara assembled coordinated a team of holistic medical doctors, each with a different approach to medicine than I was familiar with. Against my better judgment, my father's continual protesting, and lack of real clinical evidence to support the majority of the holistic and homeopathic techniques, I was willing to try anything. The team included Dr. Felix Dietrich-Bethge (Hannover, Germany), Evan Rubin, DO (New York City, NY), and Kevin Weiss, DO (New York City, NY). I was about to endure an onslaught of treatments from every corner of the planet simultaneously. Dr. Felix assembled an orangey color concoction of different orthomolecular powders that I had to get down my throat twice a day. Dr. Rubin I saw once a week for reiki or some sort of healing. Dr. Weiss administered a regimen of "upbuilding and neuroprotective" infusions. This was in addition to the twice weekly infusions of IVIg, my day job, and continuing to look for more answers. Nearly four months of getting bombarded by this regimen failed to yield any changes, positive or negative. When I asked Barbara to bring the team together for a review of my case, the golden trifecta of rationale was exercised: 1. The treatment works, which is why your disease has stabilized. 2. The treatment works, but you're not a responder to the treatment, and your disease is stable regardless of the treatment. 3. The treatment didn't work, and your disease is stable for some other reason. Rarely does a patient hear the third reason. That would be an admission that the doctor was punching above their weight. In other words, they didn't have a fuckin' clue how to help me. Neither my time nor money was wasted by this process. When dealing with an unknown medical issue with this length of a runway to get an accurate diagnosis, it's important to be open to all types of options. Look at it as a fact-finding mission and apply a process to stay organized. January 2018, Neurologists #4 and #5 Searching for expertise became my full-time job. Anyone with an internet connection can put up a "Top Ten Best Doctors" list and waste an ungodly amount of your time with legitimatelooking articles that turn out to be well-crafted click bait for Russian brides and hair restoration clinics. I went a different route, searching instead for volume of clinical publications, endowments, and any general online activity in neurological disorders. This weeded out the chaff. High activity equals big budgets. The Mayo Clinic was a consistent front runner. With four campuses to choose from, it made sense to visit their headquarters in Rochester, MN, where the most neurological work was done. Coincidentally, that campus offered a Second Opinion Program, where over the course of five days, a team of specialists would run you through a battery of tests and give you a definitive diagnosis. This was exactly what I was looking for. I reached out to the program coordinator to get all the details. After I had sent all my records and they had taken two weeks to review them, they would let me know whether I had been approved for the program. If I was, I would receive a few dates on which I could be seen. Fortunately, I was accepted, and I chose the first available date—January 1st, 2018. That meant taking a trip to Rochester, MN … in January … in the winter … when it's fifteen degrees below and snowing. In case the picture I painted isn't clear, it was fuckin' cold. None of that mattered. If I was going to get an answer, I would travel through blizzards while fighting polar bears. All I had to do was book the flights for my parents and myself, since Mayo would take care of scheduling everything else, including all the tests, the hotel, and transportation to and from the airport. Having just finished my most successful year at work, earning my spot on the prestigious President's Club trip, the first week of January was the perfect time to take off work for a week and get this taken care of. I was still reluctant to tell my company the seriousness of what was going on. I think it was mostly because I was in denial myself. Won't I deflate if you take too much blood? While preparing for the trip, it dawned on us to triple check the flights. Fukitty fuck! Who knew there was more than one Rochester? The Delta agent was super sympathetic and changed our tickets to the correct Rochester. Whoops. The weather didn't disappoint us. It was just as brutal as expected. Fortunately, the community there had prepared for the obnoxious weather by building a network of underground tunnels linking the hospital to many of the surrounding buildings. Having received a packet of instructions before we arrived made for a smooth process when we got there. The Mayo Clinic app we downloaded would provide the latest schedule, test results, and a way to communicate with my clinical team. This is the way every healthcare facility should operate. Our quarterback this week was Andrew McKeon, MD. He walked us through the week's agenda, answering many of our questions before we had a chance to ask. Starting that same afternoon, the tests were nearly identical to those I had done over the last few months. MRI, EMG, spinal tap (lumbar puncture or LP for short), and over forty vials of blood. The phlebotomists were dead on with the cannula every time, making the repeated jabs slightly more tolerable. Only one didn't get my joke when I asked when the blood would be returned to me. Admittedly a poor attempt at cracking a joke, but humor was the only way we were going to make it through the week without breaking down each time we thought about the worst-case scenario. I've become a pro at LPs subsequently, having received my eleventh in early 2020. However, this was only my second and the headache was like nothing I had experienced previously. There's a fifty-fifty chance an LP will cause a headache. The typical measure to prevent this is lying flat for an hour and guzzling caffeine. Neither had any effect. We told Dr. McKeon, and under an hour later I was face down on an operating table receiving a "blood patch." The mechanics of the LP headache are straight forward. Your brain floats in this sticky fluid called cerebrospinal fluid. The LP removes some of that fluid causing your brain to sit lower in your noggin. Our bodies don't like changes and use pain to signal that something is wrong. At this point my brain was screaming at me. The blood patch is a clever technique to physically lift the brain in the skull. Half an hour later, the pain was gone! The test results came trickling in one by one, as we were attempting to interpret the results and make our own case for why all this had a simple explanation that could be solved by taking one little pill. The days flew by, packed with test after test. Dr. McKeon, as part of the program, asked us to have his colleague Elie Naddaf, MD examine me. Both were neurologists, but Dr. Naddaf's focus was on autoimmune-related neurological disorders. He wasn't convinced that I had run-of-the mill MMN or MND. Instead, he thought it was something autoimmune-related. This of course made sense, as he was looking through autoimmune-colored glasses. Finally, it was time to meet with our quarterback, Dr. McKeon, for the final verdict. Over the next thirty minutes, he explained his methodology for reaching the diagnosis and what it meant for me, for us. Hearing that I had ALS was crushing. My mind was blank, not really sure what to do next. We sat in the lobby for hours, but the only thing left to do was to head home and reinvent our lives. August 2018, Neurologists #6 and #7, Brainstorm After returning home, I continued to see Dr. Lange as my primary neurologist. With the diagnosis from the Mayo Clinic, he stopped the IVIg infusions and switched over to the two ALS medications—Riluzole® and Nuedexta®. The burden-to-efficacy ratio made it so that the little effect the drugs had made taking them worthwhile, since they weren't a big deal to swallow. Even though the diagnosis was the worst possible scenario, it gave me a starting point to begin researching potential therapies and clinical trials. News about Brainstorm Cell Therapeutics' Phase 3 trial of their product NurOwn® was everywhere. Getting admitted to this trial would become my primary focus. With 20,000 applicants around the world, and only 300 spots, I needed to make a strong case or be professionally persistent (for this read: a huge pain in the ass). It was a combination of both that eventually got me a golden ticket. Beginning in August 2018, and for the next eleven months, we would make the 225-mile trip from New Jersey to the University of Massachusetts in Worcester, MA fourteen times. Nearly half of the trips were thirty-minute "progress evaluations" where the team would take my vitals, run through the standard Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised to measure my rate of decline. Oh yeah, and to collect a urine sample. I so badly wanted to bring some from one of my pregnant friends, just to make the trip more exciting. The team was spearheaded by lead site investigator Robert Brown, MD, famous for his discovery of the SOD-1 gene mutation associated with causing the familial type of ALS. There was also Margaret Owegi, DO, responsible for managing the clinical aspects of the trial, along with Diane McKenna-Yasek, RN, Neurology Research Nurse, and Catherine Douthwright, PhD, Research Project Director, who ran the day to day of the trial. This was an all-star cast working on this trial. Having this kind of access to world-renowned researchers wasn't lost on us. We took any opportunities we could to ask a wide range of questions having to do with every aspect of ALS. Due to the double-blinded nature of this trial, the team was only able to answer certain questions. I was still only at the beginning of this journey, though I was getting closer to finding credible and reliable resources that would make a difference in the quality and longevity of my life. Unfortunately, I would eventually come to find out that I received the placebo during the trial. Was it worth the year of effort? Yes. I had a 50 percent chance of receiving the real drug, which is infinitely greater than if I hadn't participated. And the ALS research community learned something. At the time of writing, NurOwn® appears to be the greatest hope to finally end ALS. September 2018, Neurologist #8 Having moved back to New Jersey, it wasn't practical to keep humping back and forth to the upper east side of NYC each quarter. I needed an ALS clinic—somewhere that had the coordinated support of the specialties that caring for ALS requires. Out of the three ALS clinics in the state, Robert Wood Johnson University Hospital at Rutgers University in New Brunswick, NJ was the logical choice due to the distance. It didn't hurt that Evelyn's, our favorite Lebanese restaurant, is there. Who gets to be my Doctor o' the Week this time, Johnny? (Drum roll please …) Megan Leitch, MD takes center stage in this arena. ALS clinic days are marathons of getting poked and prodded. Four to five hours long, you're shuffled from the neurologist to the social worker to get weighed (not an easy task), to the nutritionist, to the speech pathologist, to the respiratory therapist, to the occupational therapist, and finally to the physical therapist. Oh yeah, and they want the requisite sample. A great group of clinicians. Compassionate, encouraging, and resourceful. We go for the team checkup every three months. Given the gravity of this disease, I have an extreme sense of urgency to get answers. Dr. Leitch is more conservative in her practice than I needed. News about novel treatments and clinical trials arrived in my inbox daily. I needed feedback from someone on the bleeding edge of all things ALS. Fortunately, I have Melissa as my first stop. She's been instrumental in finding the right treatments no matter where in the world they may be. Melissa Simpson and Jeremy on the way to see Steve Cohen's Chamber Magic Show in NYC, January 2020 March 2020, Neurologist #9 Belief in Western, so-called modern medicine leaves me with lots of unanswered questions. Without getting wrapped around the axle on how the FDA chokes innovation, or how clinical studies in the ALS disease state are poorly designed, making them largely inaccessible to most patients, the treatment options available here in the United States are limited. While the ALS community waits for treatment breakthroughs to hit the market, people suffering from the disease are forced to look at alternative and off-label therapies (AOT). Richard Bedlack, MD, an ALS researcher at Duke University, created ALSUntangled, a database of AOTs derived from patient demand. The AOTs with the greatest number of votes are evaluated by Dr. Bedlack and an internationally dispersed team of researchers. The results are given a grade across five categories: Mechanism, Preclinical, Cases, Trials, and Risks. This database has been one of our go-to resources whenever a potential therapy hits our radar. At the ALS Advocacy Day in Washington, DC the prior year, we had the opportunity to meet Richard Bedlack, MD and hear him speak. Reminiscent of the famed Patch Adams, MD, Dr. Bedlack dressed in the most bizarre outfits, which he explained as a way to bring joy to his office and the patients he cares for. Brilliant as he was fascinating, he spoke about his approach to finding a cure for ALS and his philosophy when treating patients. To say this doctor was an out-of-the-box thinker didn't do him justice. For Dr. Bedlack, there was no box. Over the next few months, I emailed Dr. Bedlack with the occasional question. Even though I wasn't his patient, he would always reply within a few hours. It was evident that I needed to be seen by him and his team sooner rather than later, but the wait for an appointment would be two months. And with his clinic located at Duke University in Raleigh, NC, this would be another fun-filled family outing in the goober mobile. As if ALS isn't difficult enough, as I'm writing, the coronavirus has the world's population by the short and curlies and is rapidly tightening. Since it would be two days of travel in each direction, we needed assurances that we would be seen if we made the trip. Calling Bedlack's office every few hours, the restrictions on social distancing and self-isolation were becoming ever more restrictive. Fortunately, I would still be seen, though the number of people allowed to accompany a patient had been reduced from two to one. This meant someone was sitting in the car for the duration of the visit. Congrats Dad, you have been voluntold. As I did with all the clinicians I engaged with, I emailed details of my current medications and list of questions in advance, and these sat on top of Dr. Bedlack's stack of paper when he walked into the examination room. After a more thorough neurological examination than I'd had in the past, he answered each of our questions one by one. What made all the effort to see him worthwhile was threefold: 1. Dr. Bedlack, having personally verified over forty ALS reversals (meaning the patient had a confirmed case of ALS before returning to a pre-ALS baseline), said he wasn't going to assume that I had ALS until he had validated it himself with additional tests that I hadn't previously had elsewhere. 2. With a deep understanding of the standards of care treatments and AOTs, he made multiple changes to my self-directed protocol of pills and potions. In some cases, he was forthright: "We studied that, and it didn't work. Here's the paper we wrote on it." 3. Although my breathing had been measured at other clinics, recently showing a steady decline, Dr. Bedlack was the only one to shoot straight that I needed to decide whether I wanted to get a tracheostomy or not. I needed to make a decision in the next three to four months. Six hours later, we emerged from the building housing Dr. Bedlack's clinic and headed back to the hotel. This was the right place to get the answers I was looking for. I would continue to see Dr. Leitch at her clinic, with input from Dr. Bedlack via telemedicine. Fortunately for us, I was the last patient to be seen before the hospital decided to close its doors due to the coronavirus outbreak. Finding the answers to complex and complicated questions isn't easy. It takes a positive mental attitude, an insatiable appetite for chasing leads, and a team that supports you unconditionally. I'm fortunate to have them all and couldn't imagine where I would be without them. Jeremy and Dr. Richard Bedlack at the Duke University ALS Clinic, April 2020 —14— Building Your Guide to Thrive (A Self Care Plan) "In life, winning and losing will both happen. What is never acceptable is quitting." ~Earvin "Magic" Johnson~ A NYTIME SOMEONE is hit with a life-altering health condition or injury, it can become an overwhelmingly difficult and energy-sapping cross to bear. Give yourself sufficient time to grieve but put a time limit on the process. It doesn't serve anyone by spending your days under the covers dripping in a week of stench. Get up, get clean, and go outside. Whether or not you want to, it's time to face the music. Your life won't get any better by avoiding the situation. Now that you're over that, it's time to make a plan for how you're going to master your new life. Your "Guide to Thrive" will be a living manual for you and your caregivers to live by. It will include everything necessary to take care of you day to day. Whether you can take care of yourself or you need some assistance, it's important to get organized, especially if you plan on beating the dealer at his own game. What keeps me going is knowing I'm in control and that I would rather live with ALS than die from it. Crafting your guide You can use any tool you're comfortable with to keep your protocol organized. I'm a fan of Evernote, but Microsoft Word or Google Docs works just as well. You can use a notebook, though with the frequent changes, an electronic document will make your life easier. Keeping this online also allows you to share with anyone else who might be interested. Whatever tool you choose to use to maintain your Guide to Thrive, make sure it's somewhere easily accessible. The last thing you want to do is make it difficult to use or find, and it ends up going the way of that treadmill sitting in your den. By now you have probably thumbed through this chapter and said, "Fuck it," when you saw all the things I'm suggesting you include in your protocol. I don't blame you. However, please know that mine was created piece by piece over several months and continues to evolve. Here's what to include Contact list Of course you have each number you need neatly stored in your phone, but the one time you're not near your phone in an emergency, who would think to look for your cardiologist under S for "Smokin' hot doc?" If you're tech savvy enough, use a tool like Asana or Trello. You can keep all important contacts in there and share it with your family. This way they can simply search for cardiologist. This list should include not only your doctor's details, but anyone that treats you—the home health agency, acupuncturist, shaman, pharmacy, witch doctor, and others. You could even include the name of your "guy," in the event you run out of your favorite illicit drug. Not that I'm recommending it, of course. What is your diagnosis or disability? Obvious to you, but you would be surprised how many people, caregiver wannabes, well-intentioned friends, and HHAs don't have a clue what's wrong with you, let alone how to work with your new limitations. Add a brief description of your condition in layman's terms, along with anything important about the way it affects you. For example, my right arm doesn't bend easily, or bright lights cause me pain, or my mother-in-law slows the healing process. Drugs, supplements, and vitamins You'll be asked this question more times than you realize, so you may as well keep them organized. When I go to any appointments, I print this out and hand it to the receptionist along with my insurance card. Often overlooked, but just as important as regular prescribed medications, are any vitamins or supplements you're taking. It might seem pointless, since you don't need a prescription to buy them, but that's the exact reason why you should tell your caregivers and doctors everything you take. "… combining dietary supplements and medications could have dangerous and even life-threatening effects. For example, drugs for HIV/AIDS, heart disease, depression, treatments for organ transplants, and birth control pills are less effective when taken with St. John's Wort, an herbal supplement. Depending on the medication involved, the results can be serious. In addition, warfarin (a prescription blood thinner), ginkgo biloba (an herbal supplement), aspirin, and vitamin E (a supplement) can each thin the blood. Taking any of these products together may increase the potential for internal bleeding or stroke."14 I hope you agree this is important and you'll include all your supplements in your Guide. I recommend including these details Medication name Dose Frequency you take it Date you started Any notes Lipitor 20 mg Once daily 3/18/2019 Drink extra water Alternative treatments This section is useful for all the non-Western medicine and treatments you're trying. Things like acupuncture, yoga, sensory deprivation or float tanks, cupping, bloodletting, exorcism, home trepanning, electroshock therapy, or anything else your doctor doesn't have a clue about and is probably unwilling to discuss. Recently, marijuana has come back into question as playing a role in patients requiring higher doses of anesthesia during surgery.14 Don't worry about disclosing your pot habit. I assure you that no one cares. Physical and occupational therapies Typically, physical and occupational therapies are provided for a limited amount of time by your insurance company. This is your opportunity to learn (for this read: soak) everything you possibly can. Bring someone with you to take notes, or better yet take a video. The objective is to continue the exercises at home when you're not with your therapists. Ask the therapist how best to group the exercises. You can include pictures or drawings, but make sure to include descriptions of each exercise in your own words. Participation in clinical trials While exploring treatment options, you'll surely come across clinical trials for your condition. The decision to participate is entirely yours. You'll have to weigh the risks against the benefits, and factors such as the phase of the trial, travel requirements, out-of-pocket expenses, etc. I'm in favor of participating in the right trial at the appropriate time. Simply put, you already know how your condition affects you without treatment, or with the treatments you're already on. When properly selected, the right clinical trial could make a huge improvement in your life. There are risks, of course. All of these should be discussed with your doctor. Working together with your doctor, sharing these pertinent details of the trial will help you decide if the trial is right for you. ● ● ● ● ● ● ● Name of the trial Phase 1, 2, or 3? Lead investigator URL to the ClinicalTrials.gov entry Location of the study center nearest to you Frequency of visits to the study center Potential out-of-pocket costs (gas, hotels, meals, etc.) This is a good time to write down questions for your doctor. Here are a few suggestions: ● What do you know about this trial? ● Do you know the lead investigators? If yes, and I decide to enroll, will you reach out to them and ask that I'm enrolled right away? ● Do you have any patients participating in it? What was their feedback? Can I speak with them about their experience? ● Do I meet the inclusion criteria? If not, what can we do to help me meet them? ● What makes me a good or bad candidate? ● If I were to enroll in this trial, what would your concerns be? ● What risks should I be aware of? ● What other trials should I consider? ● What haven't I asked that I should? ● Any other questions? Participating in a clinical trial isn't an easy decision, especially if you're not well versed in the nuances of how a trial works. This is why you should talk with your doctor before enrolling. Unapproved treatments or treatments for ongoing trials The beauty of the interweb is the ability to connect with people in similar situations around the world. I frequently use a website called PatientsLikeMe.com. There I met a community of others with ALS, and I was introduced to treatments I otherwise may not have heard about. For example, after hearing about CuATSM, Ibudilast, Leap2BeFit®, and stem cell therapies, I did a tremendous amount of research into the claims I heard, the science behind the treatment, and how to get my hands on them. Though probably not the best idea, Melissa tries everything first. That's fine for the ceiling hoist and breathing machines, but trying the homogeneous-colored, gruel-mix medicine and blended food might be taking it a bit far. Oh, the things you'll do for love. Jeremy’s father Fred and United Airlines ground crew in Costa Rica wrestling a stubborn wheelchair, October 2019 Jeremy, Dr. Leslie Mesen, and his team at the Stem Cell Transplant Institute, San Jose, Costa Rica, October 2019 Food and food preferences Hopefully, your condition won't affect your ability to eat the foods you love in the way you always have. However, in many cases, ALS included, eating normally becomes a distant memory. If you're lucky, your doctor will slap your hand and tell you to cut out salt. If your condition is more serious, keep reading. If you're like me, food has an emotional connection to family and friends, events, and memories, and is an important way to share experiences. To maintain that connection, we try not to deviate from the foods we love as best as possible. This is the right time to get a nutritionist involved. They can develop a meal plan that preserves your current eating habits and preferences and make any necessary adjustments. Before meeting with your nutritionist, pull the following information together and then email it to them. This way they will have constructive suggestions on the day you meet. Preferences What do you enjoy eating? I love a greasy mushroom and Swiss burger medium rare, with Sriracha and a side of crispy fries. Don't forget the extra dirty Hendrick's martini in a rocks glass, obviously. You should be that specific. Tolerability What things do you have trouble tolerating? For example, red sauce gives me heartburn, or I can only tolerate one particular type of feeding tube formula, or anything my mother-in-law serves makes me sick. Allergies Important! List any food allergies and what happens when you encounter that item. For example, I'm allergic to peanuts and I go into anaphylaxis when I touch anything with peanuts. Or, I'm afraid my mother-in-law is trying to poison me by hiding shellfish in my soup. The more you share with your nutritionist, the easier it will be to craft a meal plan that works for you. I know what you're thinking: I'm not going on a diet. This isn't a diet in the traditional sense of the word. When your life is changed involuntarily, the way you used to do things will also change. The moral of the story Make good use of your care team. If you want them to prioritize you in their busy practice, engage them in the process of completing the sections above. This way you come up with an actionable plan for everyone to follow. —15— Always Start at the Top "If I am not for myself, who will be for me? If I am only for myself, what am I? And if not now, when?" ~Rabbi Hillel~ A S A member of the ALS Association, we were presented with the opportunity to go to Washington, DC to meet with senators and congressmen to influence their vote on issues pertaining to ALS. I didn't have any clue how the government really worked and frankly didn't care. I knew it was my duty to vote, and I did so faithfully. With the electoral college in place, and living in a traditionally blue state, my individual vote doesn't have much impact. When the 2016 election rolled around between Hillary Clinton and that burning dumpster fire Donald J. Trump, I watched as this slowmoving train wreck careened off the tracks, sliding straight up America's ass. It cemented my disgust at the entire political process. This opportunity was profoundly different. Not only was this a way to guarantee I wouldn't be invisible, but I would have an opportunity to make my voice heard directly by the people that could ultimately have an impact, my senators from New Jersey and the representative from my district. All piled into the goober mobile In June 2019, my parents and I joined the National ALS Association of 700 ALS patients, caregivers, and advocates in Washington, DC for the annual ALS Advocacy Day. The plan was for two days of preparation followed by a day of back-toback meetings with these members of Congress and the Senate. This was going to be intense. Anytime I travel now it seems like a monumental effort for all involved. So much so, in fact, that we created an "ING" list, as in traveling, shopping, etc. to ensure nothing gets left behind. There are so many simple items that are easy to forget if you don't use them every day, such as sunscreen, passport, or electrical power converters. All hell would break loose if the portable bidet or my pills were left behind—and for that matter, any weed paraphernalia. My parents have taken it to such granularity that "suitcase" is listed. Looking more closely at the list, I'm sure I would find my name on there as well. Countdown to liftoff Washington, DC is about 225 miles from our home, with two reasonable options to get there: car or train. I had flashbacks of every family drive the Schreibers had ever taken. It would go something like this: ● T minus 2 days: My father's nerves kick into overdrive. The "ING" list is discussed, printed, revised, and then printed again. The weather forecast is announced and repeated every hour. ● T minus 1 day: The van is filled with gas. The "ING" list is reviewed and amended by hand. The weather is also reviewed, reinterpreted, and disagreed with ● ● ● ● ● based on the intensity of my father's headache. I introduce the idea of taking a few puffs of the vape to address the stress levels. T minus 6 hours: Someone is about to be declared an asshole. Not one of the three of us, but someone who may or may not be involved in this excursion. This is inevitable. This is a moment when the "duck and cover" safety technique must be deployed. T minus 4 hours: We're now no longer in control. Fiber has stepped in and grabbed the reins due to my parents' obsession with healthy colon activity. Surely the pot of high-test caffeinated coffee had nothing to contribute to this craptastic cacophony synchronized with the 'William Tell Overture.' T minus 2 hours: An item requiring easy access during the trip fails to make itself obvious and easily accessible. My mother begins to clean. My father locks and loads the fanny pack, once said item is placed within reach, into the van. T minus 1 hour: Something without relevance to the trip becomes front and center priority numero uno. The lower our ability to exert influence over whatever has just arisen, the greater the attention it will require at this very moment. T minus 45 minutes: Jeremy steps onto the stage, the spotlight focuses on him, and the crowd goes quiet. Whatever hasn't been done to me yet to get me out of the door is about to happen with the fervor of a mother bear rushing her cubs out of harm's way. Shoes? Check. Teeth brushed? Check. Now is the opportunity to take a piss or risk waiting until we find whatever roadside rest stop that doesn't bear obvious signs of entrails from underaged Eastern European sex trafficking or coke-fueled highway trucker excrement. We aren't taking a trip into the third world, just down I-95. ● T minus 15 minutes: Shuffle everyone and everything into the van. Four bags, three people. Then it's two more trips to the bathroom, and one super-heavy motorized wheelchair. ● Houston, we have a problem: Something isn't right. Quick, go check the oven, I think I left it on. No. Fuck. Wait. It's off. I hear something running in the house. Aha! The goddamn toilet is flushing on its own. Why? Why wouldn't it? Strap the wheelchair down, adjust all mirrors, ensure a sufficient supply of tissues are at the ready, windows wide open, and "Is everyone buckled in?" ● T minus zero … liftoff!: Finally backing out of the driveway. At this point, everyone is swearing like Clark Griswold in National Lampoon's Christmas Vacation. Rather than enduring five hours each way of tense driving in the Scooby van, I had pushed my parents into accepting the convenience and speed of the train. What makes driving so tense, besides the length of time, is the setup of the van itself. This is a heavily modified 2016 Dodge Grand Caravan with 18,000 miles on it. The van screams uncomfortable goober mobile. The modifications include raising the height of the van, lowering the floor, and installing a ramp through the side door. The middle row of seats and front passenger seat have been taken out to enable me to drive my wheelchair in, do a K-turn, and lock the chair into a lock installed on the floor. All these added complexities to the van have made it heavier, less aerodynamic, increases road noise, and makes for a rougher ride. Riding in the van adds to the stress of the day by orders of magnitude. Riding shotgun is accompanied by considerable responsibility. As the front passenger, you must be alert for the entire trip, make the driver aware of all traffic dangers and faster lane opportunities, manage all GPS mapping software and upcoming directional changes, identify gas price options while selecting the least expensive, and probably the most important of all, be the DJ. For any able-bodied passenger, this requires intense concentration, good dexterity, and a steady supply of caffeine. In my current state, I'm now officially the worst candidate to elect for your copilot on any excursion. Initially, when I used to sit down in the wheelchair, I made all the final adjustments, and I was ready to go. Similar to lying down to sleep, once you have tucked your ass in the perfect spot in bed, you don't want to move. Comfort in a wheelchair is similarly important. However, this beast of a disease causes incredible stiffness of all of my muscles, making quick and responsive movements impossible. To illustrate the problem this creates, when I drive the wheelchair over a bump, my limbs stiffen up, my feet begin to shake, and my hand pops off the joystick. This happens with every bump. Add the rest of my symptoms into the mix, watering eyes, incessant and intolerable yawning, and inability to speak, it's difficult if not impossible to be of any use as a copilot. I neglected to mention that my father is deaf in one ear and my mother is losing her hearing on both sides. Not that it would be easy for anyone in the third row of seats where my mother is seated to hear the driver and passenger speaking. Adding music to the journey should calm the nerves, except it does the opposite. Since the four-year-old stock radio seems overly complex, I plugged in my phone and set up Spotify for music and Waze for directions to play through the van's radio. If you're familiar with either of these apps, you'll agree there are certain known knowns. Spotify, for example, plays a list of songs and then the playlist and stops, or starts over. Waze is never to be challenged. Choose an alternate route at your own peril. Each and every time we drive somewhere together, I set up these two apps, though without fail both my parents react as though they've never seen them before. The same could be said about the temperature controls in the van, the Apple TV remote, and anything having to do with answering or hanging up a phone call on a cell phone. Jeremy's Big Pimpin' in the family goober mobile, January 2019 Advocacy 101 Being that the ALS Association set up this conference, they were keen to choose hotels with ADA compliant rooms. Though it was no surprise to find that this hotel room at the Washington Marriott Metro Center, much like most other so-called "ADA compliant" environments, was unusable. Standard height toilet, normal bathtub, which I was unable to access, a bathroom sink with no room for my knees, and the most bizarre of all were the 36-inch-high beds, which were comically difficult to get into. Mr. Marriott, you have missed the mark in a bad way. Fuck it, we're not here to lounge around, are we? No! We're here to change the world! The agenda wasn't for the faint of heart. All 700 of us rolled, walked, and shuffled into the JW Marriott's massive ballroom, sitting with each of our respective regions. The Greater New York region was almost thirty-strong. There were many people there with whom I had formed relationships online in ALS support groups and was now able to meet in person. If you grew up in the years made popular by AOL Instant Messenger, IRC, Prodigy and Compuserve, meeting someone in real life was always preceded by the critical question: A/S/L (age, sex, and location). Although reminiscent of that era, there was no ulterior motive. Chris Hanson of Dateline NBC's To Catch a Predator isn't showing up and I hadn't been a fan of the chat rooms. It was nice to make new friends that understood what I was going through and that saw me. Really saw me. With all society's efforts to ignore the disabled, this was an opportunity to be seen and heard. This empowering exercise in freedom of speech was thrilling. Even though the three-day agenda was grueling for someone like me with a disease that saps every ounce of energy just by being awake, it was worth every effort. I was asked to tell my story to the people with whom we would meet. I should keep it concise, talk about how ALS is affecting my life and my parents, and be specific about what I'm asking for from the lawmakers. It wasn't difficult to pull together in the short time I was given, though it was a challenge to keep concise. Every meeting we had on Capitol Hill, whether it was with the congresspeople themselves, such as Representatives Donald Payne, Jr. (D-NJ), Bob Menendez (D-NJ), Mikie Sherrill (D-NJ), or one of their young and highly energetic aides, I shared my story by pressing play on the Tobii Dynavox speech generator computer mounted to my chair. Jeremy, his parents, and the ALS Association with Rep. Donald Payne, Jr. (D-NJ) – ALS Advocacy Day, Washington DC, June 2019 Jeremy, his parents, and the ALS Association with Rep. Bob Menendez (D-NJ) - ALS Advocacy Day, Washington DC, June 2019 Here's what we fought for on the Hill that day: Public Policy Priorities of the ALS Association I've included this lengthy section to give context to the legislative challenges we, the people suffering from ALS, patients and caregivers alike, are facing.15 Mission statement The ALS Association is focused on educating, advocating, and mobilizing all members of Congress in a bipartisan fashion to achieve the mission of the ALS Association: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. Lead Initiatives 1. Waive the Five-Month Waiting Period for Social Security The ALS Disability Insurance Access Act, to be introduced in the 116th Congress, will eliminate the five-month waiting period for Social Security Disability Insurance (SSDI). Under current law, people with ALS who qualify for SSDI must wait five months before receiving SSDI and access to Medicare. The legislation would eliminate the five-month waiting period for people with ALS. 2. Preserve and Increase Federal Resources for ALS Research a. Department of Defense Provide at least a $20 million appropriation to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD). Research has repeatedly demonstrated that military veterans, regardless of branch or era of service, are approximately twice as likely to die from ALS than civilians. The ALSRP, funded as part of the Congressional Directed Medical Research Program at DOD, provides competitive grants that are an essential component of efforts to identify treatments and a cure for ALS. b. National ALS Registry Provide a $10 million appropriation to continue with the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention. The Registry collects and analyzes data and directs a Biorepository. It works in close collaboration with the Centers for Medicare and Medicaid Services, the Veterans Administration, the DOD's ALS research program, and the National Institutes of Health (NIH). It is a critical driver of the search to find treatments and a cure because it connects researchers conducting clinical trials with people living with ALS and funds their own important research. c. National Institutes of Health Continue ALS Research at the National Institute for Neurological Disorders and Stroke (NINDS) and other institutes at the NIH. In FY19, the NIH spent approximately $83 million on ALS research, with the NINDS making the largest investment and four other NIH institutes contributing to the balance. The ALS Association will work in collaboration with other national organizations to advocate for $41.6 billion in funding for the NIH in 2019 (a $2.5 billion increase over 2018) so that the NIH can maintain and increase this level of commitment to ALS research. 3. Access to Home Health Services Achievable policy solutions are needed to improve access to home health services for people living with ALS. The federal government's concerns about waste, fraud, and abuse of Medicare home health benefits for all seniors and misunderstandings about the scope of the benefit have significantly limited access for people living with ALS. In 2019, the ALS Association will continue to educate and advocate with the administration and Congress on the home health needs of people with ALS, as well as identify achievable ways to remove barriers through regulatory and legislative action. 4. Represent People Living with ALS on Access to Health Care and Medications It is anticipated that both legislative and administrative proposals will be introduced that will impact access to health care and medications. The ALS Association will closely monitor and work with other patient advocacy groups to examine emerging proposals to determine their impact on people with ALS and their families. The exhaustion was energizing Speaking with representatives from New Jersey was relatively simple since this is a blue state and the congresspeople we met with were already in support of these initiatives. These initiatives seem like no-brainers to support, especially if you have any shred of human dignity. Not everyone seems to have the same inherent compassion instilled in them from birth. Such was the case with Senator Mike Lee (R-UT). When he was asked why he wouldn't support these initiatives, he responded, "You are all on the dole." What this man needs is to catch a quick case of whatever he's against. He has a lot to work with considering Senator Lee opposes disaster relief, funding of education, environmental protection, gun control, public health, LGBTQ rights, foreign and humanitarian aid, humane immigration policy, internet freedom, and least surprisingly of all, he opposes racial equality. Show me a man with an affliction and I'll show you a champion for a cause. Such was the case with Senator Rob Portman (R-OH), who suddenly made an about-face on his stance on gay marriage when his son came out of the closet. Funny how that works. Now, if only the children of lawmakers were the first to be drafted into war, I'm fairly confident war would look much different. To the folks whom we have elected and entrusted to vote on our behalf, spend your time becoming familiar with whatever causes you oppose. That goes for you too, little snot-nosed bastard Johnny in fifth grade opposing healthy food choices in the cafeteria. You might be able to make it around the bases without stopping for a breather if you put down your third DingDong. Dear Senator Mike Lee: I welcome you to spend one day in my chair and then cast your vote. Being part of an advocacy effort like we were, not only gives me an appreciation of how poorly the government functions but also how laws are made. We're fortunate here in the United States that the average citizen has direct access to our representatives in the government. We can share our concerns and our wishes with them so they understand how our lives can improve if certain changes are made to the laws. This is well within your reach as an average citizen. Having had this experience, it's no longer acceptable to bitch and moan about the benefits or services you're not receiving from the government, or how you're being treated by a company. Use your voice. Write a letter, send an email or tweet, or volunteer with an advocacy organization. However you decide to get involved, choose not to be invisible. Jeremy and Katrina Hawking, daughter-in-law to the late Stephen Hawking – ALS Advocacy Day, Washington DC, June 2019 —16— You Are Your Best Advocate K RISTEN COCOMAN, President and CEO of the ALS Association of Greater New York and Greater Philadelphia Chapters, reached out to ask if I would give my testimony to the NJ State Senate Budget Commission to help secure funding for the ALS Association for the 2020/21 budget year. Without asking what was involved, I immediately said yes. She asked on a Thursday, and the meeting was the following Tuesday. We had a brief call where Kristen gave a rundown of what she wanted to accomplish at the meeting, who I would present to, and what my testimony should include. Kristen's Communication Director, Tiffany Card, sent me a copy of the previous year's testimony as a guide to help me structure mine. When I found out that every nonprofit in New Jersey would be at this hearing asking for money, I immediately tossed it in the circular filing bin under my desk. If I was tasked with making the "Big Ask" in the allotted time of three minutes, I needed to tell a compelling story. The draft I received read like the bylaws of a company with no compelling call to action, and no emotion. The version I presented had a monster (ALS) that terrorized the town (people with ALS), what we needed to defend against the monster ($1 million for the Greater New York and Greater Philadelphia Chapters), and a hero (the New Jersey State Budget Commission) to save us from the monster. Having spent the majority of my working career in sales, this $1 million wasn't an uncommon amount to ask for the products I sold. (Think: MRI machines and X-ray equipment to hospitals, and software to global banks). However, this was the most important sale of my life. Each person and caregiver affected by ALS in New Jersey and Philadelphia depended on me, as did the ALS Association Greater New York and Greater Philadelphia Chapters. My fifteen (okay, more like five) minutes of fame When we arrived at the New Jersey Institute of Technology, we signed in and took our seats, waiting to be called up to the podium. The auditorium was practically empty, not surprisingly, as the country was about to go into lockdown due to the coronavirus. The nonprofits that did show up rightly assumed there would be less competition so they would stand out from the crowd. When I was called up to the microphone, my father set up my computer. Debbie Schlossberg, social worker extraordinaire, sat on my left, ready to field questions from the panel of senators. A convenient little perk of this disease is the ability to record anything I want to say on my little speech device and play it back later. I get to zip right past the stage fright, sweaty palms, and get straight to the point. Barring any unintentional and potentially offensive mispronunciations, my only job is to sit there and look pretty. Once I was all set up, I hit play. Over the next 4 minutes 32 seconds, I watched the bar mitzvah-sized dais of senators perk up and lean forward, hanging on every synthesized word. Since I was sitting there with nothing to do, I swiveled my head, scanning the room to gauge the impact of my testimony. My full testimony to the New Jersey Senate Budget Commission Dear Members of the New Jersey Senate Budget Committee: Thank you for the opportunity to be here today. My name is Jeremy Schreiber. I live in Livingston, NJ, represented by Senator Richard Codey. I am forty years old. When I was thirty-eight, I was diagnosed with ALS. When I got my diagnosis, it was a shock to us because we have no family history of ALS. In fact, 90 percent of the people diagnosed do not either. Just like cancer, it can happen to anyone. And if you are a military veteran, you are twice as likely to get ALS, regardless of what branch you served in or where you were deployed. In the aftermath of my diagnosis, we held each other and cried. We did this because we knew it was a death sentence. Because there is no cure. ALS is a progressive disease, killing the nerves throughout our bodies. Like Lou Gehrig and Stephen Hawking before me, this disease affects our ability to walk, to use our hands, to eat, to talk, and eventually to breathe. This computer speaks for me while I sit in this wheelchair because my body is failing me. I am not unique. This is the course everyone with ALS will suffer. Unfortunately, the parts of our bodies that are spared are our eyes and our minds. I say unfortunately, because those of us with ALS are fully aware of what is happening to us, while we are forced to watch the pain this disease causes our family and friends. And there is nothing we can do. I am here to be the voice of the thousands of other New Jersey residents with ALS who are confined to their homes, dependent on ventilators and feeding tubes, and for many of whom travel is impossible. I am also here to thank you on behalf of the ALS Association Greater New York and Greater Philadelphia Chapters for approving $250,000 last year in the New Jersey State Budget. That funding was split between the two chapters in the state. Because of New Jersey's commitment to supporting people like me and families like mine, the ALS Association is able to help manage the overwhelming medical and financial needs that arise from this disease. Specifically from past budget support, the Greater New York Chapter was able to hire a new full-time Care Services Coordinator in New Jersey, who has been essential to the organization's growth. The Coordinator has increased the Chapter's reach into previously underserved areas, the number of people with ALS served, and the number of services provided regionally, including home visits, transportation, and equipment loaned, which are provided at no cost to the patient or family. Because there is no cure, my family and I, as well as others around New Jersey struggling with ALS, depend on the services the ALS Association provides. Many of us who are diagnosed are sent home with a stack of pamphlets, a time limit of two to five years to live, and instructions to get our affairs in order. Your decision to continue funding the requests of the ALS Association has allowed us to rewrite that story by providing expert resources and support I can count on, equipment I can borrow to ease the financial burden, and a community I can lean on. Given the increased needs of the ALS population and urgency of care, the ALS Association is respectfully asking for $1 million in the fiscal year 2021 budget. With increased funding, the Greater New York Chapter plans to: ● Hire an additional full-time Care Services Coordinator to provide additional home visits and supportive services to PALS in New Jersey, focusing on underserved regions. ● Grow a transportation program to provide PALS with transport to support groups and Chapter events, like research symposia and the Walk to Defeat ALS. ● Expand the equipment loan program to add highcost durable medical equipment and augmentative communication devices that are regularly requested by patients but are too expensive at this time. ● Add specialty support groups throughout the region. ● Provide additional grants to PALS and their families for home and respite care. The funding we are hopeful this panel will provide the ALS Association this year means those of us suffering from ALS in New Jersey can start living with the disease and stop dying from it. I am truly grateful for the opportunity to speak to you today and thank you for your consideration. Gratefully, Jeremy Schreiber On behalf of the ALS Association Not a dry eye in the house. I finished my testimony, we packed up, and headed home. We will find out if the ALS Association will receive the million bucks on or around July 1st, 2020. This was an incredible experience, and one I would absolutely do again given the chance. What little I could hear from the organization that presented after me was amusing. They were asking to drop the luxury tax on yachts purchased in New Jersey. I'm all for advocacy for your cause, though they might have considered presenting before me, so their message isn't compared with mine. If something bothers you, make your voice heard by telling the decision-makers exactly what you need them to do. Jeremy and his parents testifying at the New Jersey Senate Budget and Appropriations Committee hearing on behalf of the ALS Association, March 2020 If you feel like you're getting screwed, you probably are Nothing makes you feel more subhuman than dealing with customer service. Frankly, nothing makes you want to commit homicide more than that. Handicapped or not, anytime you interact with someone in customer service or who works with customers/patients/clients/guests (I hate the term guests), on a daily basis, they have one job: Fix the customer's problem as quickly as possible and move on to the next schmuck waiting in line. The same is especially true in healthcare. When was the last time you visited your doctor and he or she had plenty of time to hang around and chat with you? I spent a decade on the sales side of the healthcare industry working with healthcare providers at all sorts of levels. What I can tell you for sure is that these poor people don't have time to take a shit let alone spend quality time with their patients. Why are they so busy? Without going too deep into history, it's fairly straight forward. Way back when doctors were considered one step below God, they began to charge higher and higher fees, surely to cover their loans, medical malpractice insurance, and of course turn a profit. Enter stage right, the large insurance companies, like the one your employer might provide. We will call them Big Bad Wolf (BBW). Through your paycheck, you pay a little to BBW, your employer pays a little more to BBW, and BBW pays the doctor. As insurance companies gain more control and medicine becomes more of a commodity, the amount BBW pays Dr. Fixit goes down. However, you and I still expect the doctor to cure cancer for the $90 they receive for our visit. There's more to the plight of the physician, but the story doesn't get better. Add in the complexity and expense of the electronic medical record system, a grumpy staff, and of course the drug rep. I should know, I was the well-dressed guy in a suit, carrying a bag of goodies for the staff and samples for the doctor. My goal was to get the doctor to see me, the rep, before you the patient. After all, if you have a doctor's appointment in the middle of the work day, chances are you have nowhere else to be, right? Whatever it was I had to tell the doctor was certainly worth three minutes of their time. Besides, if whatever I was peddling works better than whatever you were taking, doesn't it make the interruption more worthwhile? So how, as an individual with complex needs, are you supposed to get the attention you so badly need? Think about all the stories that you have heard about celebrities throwing Hiroshima-sized temper tantrums because Fluffy, their rat dog, was served store-bought dog food instead of fresh roasted chicken. What happens? That gets everyone's attention, doesn't it? Be careful, this is a one-time use technique. There are many more diplomatic ways of getting what you want without appearing like a Kardashian. Here are some tips ● Use LinkedIn or Google to find the highest-level person you can that sounds relevant, such as Head of Customer Service, Chief Patient Experience Officer, Chief Medical Officer. ● Go to the homepage of the facility and look for the names of corporate officers. ● Find the email format used by the organization. ● Email everyone using the template below. ● Remember: Always be respectful. Example email template Subject: Patient in need of help Dear ________________, My name is __________________. I was diagnosed with _________ and have been a patient in your __________ facility. I am reaching out to ask for your help. I have been working with the _____________ department on _______________. For some reason, the progress in getting me the _________________ I need has come to a grinding halt. I have been unable to reach the practitioners in these groups after multiple attempts over the last month. Unfortunately, my condition is progressing rapidly, and I desperately need these things sooner rather than later. Unrelated to the other issues that have come up with the center in general, I would really appreciate your help in clearing the roadblocks I am encountering. ––––––––––, thank you in advance for your help and attention to this. I am happy to answer any questions you might have. Gratefully, ___________________ When you're handed a diagnosis with a countdown timer, suddenly everything becomes urgent, and this needs to be impressed upon everyone you meet that's in a position of service to you. Even when your lousy customer service experience has nothing to do with improving your health, just sometimes going to the top is the only way to get things done. I purchased a new trackball mouse directly from Logitech for my computer, thinking my rapidly deforming hands could use this style more easily. Unfortunately, I couldn't maneuver my clenching fingers and stiffening wrist well enough to use the mouse. I needed to return it. Should be easy enough. Just look in the box for the return label. Okay, no label. No problem, I'll print it from the Logitech.com site. Funny, there's no "returns" area on the site, just a link to the live chat agent. After a forty-five minute wait I was still ninth in the queue. This was becoming absurd. After pressing every combination of options, the 800 number yielded no live person. That's when I turned to the support forums. Apparently I wasn't alone in my frustration. Page after page of complaints had been written about how difficult the return process was and how soon-to-be ex-customers were begging for help. That's when I deployed the steps I outlined above. Wouldn't you know it? Twelve hours later, I received an email from customer service apologizing for the difficulties and sending a postage paid return label. At the bottom of that email, I saw my original email to the top brass at Logitech with directions for this customer service agent to help me. Mission accomplished. What about all of my frustrated friends on the forums that needed to return their products and were struggling like I was? Not wanting anyone else to endure more pain inflicted by this soul-crushing corporate giant, I posted my methodology, along with the contact information of those customer experience executives that were so helpful in resolving my return difficulties. The moral of the story is that when you're forced to become invisible, make your voice heard by going straight to the top. —17— Fundraising/Foundations B EING SICK can shrink your world. If social distancing and self-isolation during the coronavirus pandemic of 2020 made you stir crazy, you just caught a glimpse of life with a chronic illness or disability. Fortunately, organizations supporting people suffering from illness and disability understand the need to create communities that foster inclusion. Even though getting involved with these organizations means you'll hear about the struggle that others with your condition are facing, it helped me find purpose and a reason to get out of bed. As I got more involved, I noticed my mood improve, I was less depressed, and I began to feel better. Being part of a community has given me ideas on how to help my parents, and tremendous satisfaction in helping others. Remember, just because you're sick, doesn't mean you have to feel sick. A positive attitude will carry you a long way. Creative fundraising I had no idea how many people were in my life and cared about me. It was amazing when so many people came forward offering to help in any way they could. The creativity was outstanding and beyond my expectations. Support came in many forms beyond money. The men of MDI, realizing how difficult it is for me to travel to the weekly meeting, committed to hosting one meeting each month at my house. Each time they came over, they made a point of finding something my parents needed help with around the house and did it for them. They organized the garage, built a closet, and fixed a broken Wi-Fi router to name a few. There were, of course, traditional fundraisers that were successful in their own way. Patrick McCartney and Laura Hickey launched an incredible GoFundMe campaign that helped get the equipment I needed to make our lives easier. The handicap van, an overhead ceiling hoist to transfer me out of bed and into the bathroom, and some experimental medicine from overseas. The campaign is still running today and continues to help my parents and me battle this disease. The campaign can be found at: https://www.gofundme.com/f/HelpJeremyFightALS Darren and Molly Manning of the Tim Sheehey Softball Classic made some important introductions to people and resources that I'm grateful for. Meanwhile, Project Main Street invited me as their guest of honor at their annual benefit concert in Brooklyn. Melissa Simpson pulled together an outstanding cabaret at Don't Tell Momma in NYC. She packed the house with talented professional performers and friends I missed so much. Melissa also enlisted the help of her friend Camille Torres to create an inspirational cuff-style bracelet with the engraved quote: "You are stronger than you seem, and you are braver than you believe". We sold them at the second annual MDI Ugly Schweater Benefit Concert at the Rockwood Music Hall in NYC. Jeremy and his parents at the Don’t Tell Momma Cabaret, August 2018 Annual Ugly Schweater Benefit Concert hosted by the Men of MDI at Rockwood Music Hall, NYC, December 2018 None of these events were difficult to arrange. All it took was a few motivated friends and some creativity. If you're interested in passively contributing to a nonprofit that's important to you, Amazon has created Amazon Smile. Shop as you normally would, and a portion of the price of the item you purchase is donated to the nonprofit of your choice. I chose the ALS Therapy Development Institute. Go to https://smile.amazon.com, log in with your regular Amazon username and password, and you'll be prompted to select a nonprofit organization you want to support. Ask your friends and family to do the same. Thank you Team Gleason Celebrity status comes with certain responsibilities, and each person achieving that status, whether by choice or chance, must respect all that comes with the title. Snooki and Mike "The Situation" are celebrities, though so is President Bill Clinton. Both can reach the entire TV-watching U.S. of A. Only one has used the podium for the greater good. Former NFL quarterback for the New Orleans Saints, Steve Gleason, is an example of the latter. Diagnosed with ALS in 2011, Steve made it his mission to show that people can not only live with this disease but thrive after this diagnosis. In doing so, he intends to inspire others to do the same. With that in mind, Steve and his wife, Michel, formed "Team Gleason" to help him accomplish those goals and more. Steve has helped pass two laws and to create new technologies for people with ALS and other disabilities. For his extraordinary efforts, he was awarded the Congressional Gold Medal. Part of Team Gleason's commitment to helping people with ALS is to send us on a once-in-a-lifetime trip anywhere we want to go. I took Melissa, Todd, and Sandy to Grand Cayman for a week. It was an incredible experience that I'm thankful to have had. Sandy and Todd Adest, Melissa Simpson, Jeremy, Cap'n Ron, and Ron's sidekick with sting rays in Sting Ray City. We made the right decision to tell my parents that we did this AFTER we got back to dry land. Jeremy, Melissa Simpson, Todd and Sandy Adest in Grand Cayman, Team Gleason Adventure Trip, October 2019 Jeremy’s fuckin’ “Friends” think they're SO funny. You know who you are Adest and Simpson. Recipe for a successful crowdfunding campaign After the meteoric success of the GoFundMe campaign that Patrick McCartney and his wife Laura Hickey ran, I received a flood of questions from people who wanted to set up their own campaign. So, I asked Patrick and Laura to share the secrets that made their campaign a success. Patrick McCartney, Jeremy, and Laura Hickey, October 2019 In their own words We started a GoFundMe campaign for Jeremy when we realized his diagnosis. Based on our experience, here are some tips for anyone considering a crowdfunding campaign: 1. Let go of your reservations It's very easy to feel helpless when you or a loved one falls ill or faces unexpected hardship. It's hard to admit and ask when we need help from others. Whether starting a campaign for yourself or on someone else's behalf, when you have decided to ask for help, own it. There are many people in your life and the world that care about you and humanity at large. Dig deep and be prepared as an advocate, cheerleader, and solicitor. It can get overwhelming, and if you approach it with the right mindset from the beginning, parts of the process are a little easier to tackle. 2. Research your options Before we decided to set up the GoFundMe, we kicked around several ideas about how to raise money for Jeremy. There was a keen interest from coworkers to help, but no one was sure of the best course of action. Ultimately we decided on crowdfunding for several reasons: Ease of use, the option to donate using a credit card, the possibility of sharing across multiple social media platforms, and the immediate availability of funds. GoFundMe is by no means the only option, so research, read the fine print, and choose depending on your goals and reasons for starting a campaign. GoFundMe is a well-known and trusted platform, user friendly, and relatively low cost for medical campaigns, so we felt it was the best fit to get something off the ground quickly. When you decide, make sure to download the platform's app, if available. 3. Set a reasonable initial goal Talk about needs with family and others involved, the minimum amount you're comfortable with, and what you think is realistically achievable. Be as specific as possible in your request about what the money is going toward. GoFundMe campaigns don't expire, and you can change the goal as needed. I promise that reaching the initial goal and increasing it is better for your psyche than starting out with a high amount that's never obtained. 4. Write like your life depends on it (because it probably does) Initially, your campaign will be focused on your immediate network, so you may feel as if your story is partially understood. Write it for those who don't know you at all and make it as personal and compelling as possible. Include details of your life before and after whatever prompted your campaign, and how donations will change your situation. If you're starting a campaign for someone else, collaborate to get the important information they want to include. Take your time, make sure it is well written, and proofread. Keep in mind that those sharing your campaign are just as important as those donating, and any stranger you can get to do either is a bonus. Trending campaigns being shared across multiple social media platforms are seen by many people you have never met, and you want them to want to help. 5. Hit the pavement It would be wonderful if I could say that once you go live with your campaign your work is done, and your goal will be met easily. The truth is that many campaigns struggle to be fully funded. When you launch, be ready to share across all of your social media accounts, utilize community Facebook groups, and direct message people to personally ask them to share. Work your network, however big or small. If your campaign is for someone else, include them and their family in the effort if you can. If at all possible, try to launch your campaign around a public event (a party, benefit, service, etc.) and be ready to talk about it. I hurried to get our campaign ready before my husband went to several days of company-wide meetings. While I was working on things behind the scenes, he was talking about the campaign to everyone at those meetings, over and over. Old-school face time is important, and the more people you can ask to talk about your situation the better. Take your campaign with you to work, church, school, clubs, and social gatherings. I always asked people to share the campaign, even if I didn't bring up donating directly. 6. Update often Once people start donating and sharing, they will receive notifications of anything you post. Any additional information, changes in the situation, expressions of gratitude, or updates on your goal are important to those who are invested in your well-being. They want to hear from you, and it helps encourage more sharing and additional donations. If appropriate to the situation, you can add others as administrators so they can post updates as well. At first, we knew that Jeremy and his family were understandably overwhelmed, so we posted the initial updates but also added him so he could post when he could. As time progressed he was able to take the reins on updating and let everyone know about benefits and other events via the campaign. 7. Write a personal thank you note GoFundMe sends a thank you form any time someone donates, but you have the option to send a personalized one. Take the opportunity for a heartfelt thank you in your own words and change it accordingly. For example, when we updated the goal to help pay for a van for Jeremy or a specific treatment, I included it in my thank you to anyone donating after that update. I changed my thank you around the holidays to wish donors well during the season. The app makes it easy to keep track of who has donated, and who you have thanked, and you can set a template to do so with one click. When you're getting a lot of donations this can be time consuming, but it's worth it. I've made personal connections with people who have set up recurring donations and have had people reach out to me with various ideas and desires to help. 8. A note of caution I encountered scammers who would reach out through Facebook and Instagram claiming they could increase traffic to the campaign for money. No matter how desperate your situation is, do not fall victim to this. Also, and especially if your campaign is trending, you may see comments on your campaign from bots promoting questionable medical advice, people trying to direct you to their own campaigns, etc. Use care and discretion to cull these from your comments if you wish. Ultimately, I decided that if a comment wasn't positivity directed to Jeremy and his family, I wasn't keeping it. Starting the campaign for Jeremy was one of our greatest honors. It's overwhelming to see support from so many people and restores some faith in the world. As hard as it is to face tragedy or illness, I encourage you to turn outward and ask for help (monetary, social, spiritual) when you need it. A bright spot in an otherwise hopeless feeling situation can make all the difference. Conclusion M Y INTENTION in writing this book wasn't simply to tell my story and gain your sympathy for how I've had to fight for a diagnosis, recognition, visibility, etc. Yes, it's been a huge struggle as you have read, but how many others have been through a similar, perhaps even worse struggle? And what worries me even more is how many more will have to suffer tomorrow and the next day because the organizations with power and money choose to do what's popular instead of what's right. It's also not just a book about ALS written for fellow ALS sufferers. This is a book for everyone, for people with any type of disability, but also for able-bodied people and those in positions of power within local, state, and federal government organizations. While those of us with disabilities have a large role to play in improving society so that we're no longer invisible, it's the whole of society that needs to get involved, as we know we can't do this alone. The Americans with Disabilities Act (ADA) should be the answer to our needs, but let's face it, it sucks! What the ADA designates as accessible, is rarely usable in practice. If anyone designing a building decides to take any real notice of the ADA, how often do they actually involve anyone with a disability in the design stage? I would suggest hardly ever, if at all, from my experience. And the ADA is outdated. It makes a weak attempt to address website and mobile app usability, let alone enforce it. It's all part of what contributes to our invisibility, despite us having a wealth of knowledge that could help to ensure that any space that can be accessed by the general public, digital properties included, are designed for every person regardless of ability. Until the government acts to make it so and rewrites the Act to ensure that it has to involve full consultation with people with disabilities, the status quo will continue. But, of course, it's not just about buildings, websites, etc. It's about people. We need people to change things that are so obviously wrong. That means you, no matter whether you have a disability or not. Those of us that do have a disability, it's our duty to make ourselves heard, otherwise nothing will change. As I said earlier, we need the whole of society to get involved to reverse these norms, including the decision-makers. You'll also have read about how people with disabilities are made to feel by able-bodied people. This isn't just me; I've spoken to so many people with disabilities who are made to feel the same way. Yes, I know as an able-bodied person you may feel some "embarrassment" and you find it difficult to know how to react sometimes, though understand that the awkwardness you feel is a learned behavior. So is racism, homophobia, and xenophobia. And we as a society have managed to (mostly) eliminate those horrible warts from our lives. This means the responsibility to eliminate the exclusion of people who are different to you falls square on your shoulders. Teach your children the Golden Rule, remind them of its importance when they enter the workforce, and then again when they have children of their own. How simple it is to look us in the eye and talk to us as if we're adults. Just how difficult can it be? I can assure you it would make a hell of a difference to how I feel, and how you're perceived by your children. I take the burden of speaking on behalf of the vast majority of people with disabilities when I say that. I did, however, want my story to inspire you to be the best version of yourself, and strive to be better. Those of you in similar situations to me, I challenge you to take control of your lives. Use the tools in this book to become your own advocate for your health. And if you're fortunate enough to be an outsider to life-changing illnesses and disabilities, I challenge you to acknowledge a behavior that you have seen from another person, or that you might be guilty of yourself, and make a concerted effort to change that behavior—to be better. It's been a tough book to write, but hopefully you can see what can be done if you fight for the right to be counted, to be heard, and not pushed to the shadows of the very society we help to build. Choose to be visible. There are over sixty million people with disabilities of one kind or another in the United States and I know we can't live our lives as we would ideally like, but it's up to us to make our lives as fulfilling as we can. I hope I've inspired you to do the same. Don't just accept what is—think about what you need, what you can do for yourself, but also what you need others to do for you. If we all do this together, we can make a change. ALSisms You know ALS is a silly disease when … ● You can have a frozen Margarita, but water is off limits. ● A sock in your hand at night provides comfort. ● You have repurposed every device in your house as a positioning aid. ● Your power chair selects your caregivers by behaving erratically around the bad aides. ● Towels become a hot commodity in your house. ● Your wife folds laundry on top of you because it's easier than getting you out of bed. ● My girlfriend knows all my favorite positions ... of my limbs. ● You always get stuck as the rock when playing rock, paper, scissors. ● You're exempt from chores because your (insert body part) doesn't work. ● You don't worry about hoarding toilet paper during COVID-19 because of bidets. ● Prepositions are removed from your vocabulary. ● ALS as a verb is easier for your friends to understand than explaining what's actually happening. ● Your formula is more appetizing than your caregiver's coronavirus back-of-the-freezer concoction. ● You get demoted to Indoor Slow when you trash the bathroom door on Indoor Moderate. ● Your caregivers stop guessing what you said and start alphabetically listing body parts you want wiped. ● You suffer through the tenth iteration of that same damn story because it takes too long to type: "We heard that one already Dad!" ● When the same parent who grounded you in high school for this transgression is helping you vape marijuana daily. ~Debbie Schlossberg~ ● Your first power chair with monster wheels and a truck horn is used daily to chase the dogs in the yard. An ALS sport. ~Terri Handler~ ● You forget it's not normal to turn off light switches with your forehead. ~Erin Hines~ ● When you entertain the whole room burping your tube. ~Jeffrey Jones~ ● When your power chair goes rogue and attacks your caregiver. ~Robert Abernathy~ ● Your wife can change your grandson's diarrhea-filled diaper with no problems, but dry heaves when helping to clean you after a bowel movement. ~Jeff Hottle~ ● You intentionally make your legs start shaking when your dog hops on your lap blocking the eye tracker. ● Your caregivers don't open the tube clamp just to see how far across the room they can rocket the food. ● You learn how to endure an itch until the feeling goes away. ~Tee Fischer and Kenice Freeman~ Resources Here are the resources found throughout the book in a nice little list. You can download and print this from my website: https://neversayinvisible.com/resources/ ● ALS Association: http://www.alsa.org/ ● ALSTDI: https://www.als.net/ ● ALSUntangled: http://www.alsuntangled.com/index.html ● Amazon Smile: https://smile.amazon.com ● Camille Torres Designs: https://www.camilletorresdesigns.com/ ● Jason Becker Vocal Eyes: http://jasonbeckerarchive.com/eye_communication.html ● Mentor. Discover. Inspire.: https://www.mentordiscoverinspire.org/ ● My GoFundMe campaign: https://www.gofundme.com/f/HelpJeremyFightALS ● PatientsLikeMe: https://www.patientslikeme.com/ ● Search for clinical trials: https://clinicaltrials.gov/ ● Team Gleason: https://teamgleason.org/ ● The Invisible Nation blog: https://neversayinvisible.com/ About the Author Jeremy Schreiber is an entrepreneur, a writer, and an ALS warrior. He first started to write and speak openly about his own experiences after being diagnosed with ALS in January 2018. From his personal story, he offers his unique perspective into a world where injustice is frequent and unapologetically out in the open. Through his work, Jeremy aims to help and motivate people with disabilities to improve their lives and to overcome the challenges they face. He also gives a voice to people that society has turned invisible, covering such topics as travel, new treatments, medical marijuana, and technology. Follow Me ● Website: https://neversayinvisible.com/ ● Pinterest: https://www.pinterest.com/TheInvisibleNation/ ● Twitter: https://twitter.com/JeremySchreiber ● Facebook: https://www.facebook.com/InvisibleNationBook/ Bonus Downloads All of the following are available on my website: https://neversayinvisible.com/resources/ ● ● ● ● ● Guide to Thrive Checklist and chapter Resources chapter with links Be your own advocate email template How to develop a self-care plan you'll actually use How to set up a successful GoFundMe campaign Instructions The Becker System is designed for the beginner to quickly become familiar with the layout of this simple eye-movement spelling system and begin communicating immediately! Only two eye-movements are necessary to reach any given letter in the system. Complete eyemovement is required to use the system successfully. The patient first indicates which block the letter he wishes to spell is located in by moving his eyes in that direction: Upper Left Upper Middle Upper Right Lower Left Lower Middle Lower Right Remember the caregiver or “reader” will have these directions in reverse, i.e. when the patient’s eyes go to the upper left, it will appear as the caregivers upper right. See the chart for reference. The second eye movement is for the letter. This time only 4 directions are necessary, except for Y & Z. Up Down Left Right Y & Z use lower left and lower right eye movements. You will want to devise a system between the patient and caregiver or “reader” to indicate “yes” and “no”. This will help facilitate the speed of the communication process. Twitches, smiles, blinks, winks or any form of movement other than the eye itself can be used to set up the confirmation process. If only one such capability is evident, you should use this as an indication of “no” and no indication is “yes” and continue. The reader says aloud which box the patient has indicated with his/her eye movement. The patient indicates “yes” or “no”. The reader then says aloud the letter the patient indicates, again the patient gives a confirmation or rejection. You will find that both patient and caregiver will pick up on this system very quickly, and within 3 or 4 letters, will be able to judge the patients anticipated word. For example, the patient begun spelling T-H-E-R, once the letter R is reached, the caregiver should say the word “There” and allow the patient to confirm or reject the word. Although the board is marked patient-side and care-giver side, your personal situation should determine which side is appropriate. If the patient will be seeing a good number of irregular visitors or has a steady change of staff, it may be better for him/her to become familiar with the care-giver side instead, since the patient-side layout is in an order most similar to how we read, and therefore easier to memorize. For further assistance or information write Becker System, c/o Gary Becker, P.O. Box 70512, Pt. Richmond, CA 94807 or email- Endnotes Clinicaltrials.gov. "Nutritional Prognostic Factors in ALS (PEG-ALS)." https://clinicaltrials.gov/ct2/show/NCT- ADA.gov. "2010 ADA Standards for Accessible Design." https://www.ada.gov/2010ADAstandards_index.htm 2 Health.gov.il. "Accessibility and Equal Rights for Persons with Disabilities." https://www.health.gov.il/English/Topics/Rights_disabilities/regulation/Page s/default.aspx 3 Disability Rights Advocates. "O'Hanlon v. Uber Technologies, Inc." 2020, https://dralegal.org/case/ohanlon-v-uber-technologies-inc/ 4 Hylton, W. "Willie Nelson's Crusade." Intelligencer, 2 November 2015, https://nymag.com/intelligencer/2015/10/willie-nelson-crusade-stop-bigpot.html. 5 U.S. Department of Justice. "Title 21 United States Code (USC) Controlled Substances Act." https://www.deadiversion.usdoj.gov/21cfr/21usc/801.htm. 6 U.S. Food & Drug Administration. "FDA Approves First Drug Comprised of an Active Ingredient Derived from Marijuana to Treat Rare, Severe Forms of Epilepsy." 25 June 2018, https://www.fda.gov/news-events/press-announcements/fda-approves-firstdrug-comprised-active-ingredient-derived-marijuana-treat-rare-severeforms. 7 Somerset, S. B. "DEA Responds to Medical Marijuana Research Expansion Lawsuit." Forbes, 2 September 2009, https://www.forbes.com/sites/sarabrittanysomerset/2019/09/02/dearesponds-to-medical-marijuana-research-expansionlawsuit/#4ba1fd- McKinley, J. "The Wisdom of the Ages, for Now Anyway." The New York Times, 23 March 2008, https://www.nytimes.com/2008/03/23/fashion/23tolle.html. 9 U.S. Bureau of Labor Statistics. "Home Health Aides and Personal Care Aides." 4 September 2019, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-careaides.htm. 10 Sterling Institute of Relationship, http://www.sterling-institute.com/ 11 ALM Intelligence. "Workers Claimed Pregnancies Led to Termination." VerdictSearch, 15 September 2015, https://verdictsearch.com/verdict/workers-claimed-pregnancies-led-totermination/ 12 Dall, T. M. et. al. "Supply and Demand Analysis of the Current and Future US Neurology Workforce." Neurology, 30 July 2013, https://n.neurology.org/content/81/5/470 13 U.S. Food & Drug Administration. "Mixing Medications and Dietary Supplements Can Endanger Your Health." 27 October 2014, https://www.fda.gov/consumers/consumer-updates/mixing-medicationsand-dietary-supplements-can-endanger-your-health. 14 ALS Association. "2020 Public Policy Priorities." http://www.alsa.org/advocacy/Public-Policy-Priorities.html. 15