by Shane Burcaw
I’m a firm believer that you can only truly know someone by experiencing adversity with them, and if that’s true, we had plenty of opportunities early on to know each other.
For instance, a few months before we ate together at the diner, on her second visit, we took a day trip to New York City. The night before the trip, my wheelchair of over ten years took its final breath and turned off for the last time. It was a devastating moment. When I was done weeping and cursing the heavens, Hannah and I discussed whether we could still take our big trip. Luckily, I had my backup wheelchair waiting in the garage (which was technically my brand-new chair, but for a variety of stupid reasons, I never made the switch). However, this backup chair had numerous seating and comfort issues, and I wasn’t confident in my ability to traverse the bumpy New York City landscape in a chair that basically didn’t fit me. If that sounds like me being a spoiled diva, imagine you were told you needed to hike through a rocky jungle in eight-inch high heels for ten hours. You would not be enthused.
Over the next few hours—from 9 p.m. to midnight—Hannah and my parents worked together to help me retrofit the chair with supports, straps, and cushions that would allow us to continue with our scheduled plans. As I fell asleep that night, I was filled with conflicting emotions—gratitude for my parents and girlfriend for working so tirelessly to ensure my comfort, and fear that even with all the modifications, my body was too weak to make it through our trip the next day.
Morning arrived quickly. Our bus for the city left at 6 a.m., so when the alarm sounded at 5 a.m., we’d only gotten about four hours of sleep. Hannah got me dressed and out of bed in the soft early light. It was going to be perhaps the hottest day in recorded human history, a sweltering one thousand degrees, with enough humidity to turn my balls into a swampy steam bath before we’d even left my bedroom. Perfect conditions for an already stressful day.
We made it to the bus depot and got on the correct bus with minimal difficulty, despite the bus driver’s apparent surprise at the fact that his bus even had a wheelchair lift. The new chair was annoying—for instance, I was already struggling to keep my arm in the proper driving position—but it was working, and my attitude shifted from nervousness to excitement about our first big adventure together.
Both of us dozed on the bus during the two-hour drive to New York. At some point, a pothole on the highway jostled me awake. Hannah was curled up in her seat next to me. I felt like the luckiest man alive.
We got off the bus at Port Authority, enjoying the stench of human pee for twenty-five minutes while the driver once again acted surprised that there was a person in a wheelchair on his bus. Had it not been for Hannah showing him how to operate the lift, I might’ve been stuck on the bus forever.
Our first objective was finding food. I stupidly hadn’t used my feeding tube the night before, which meant my body was functioning on severely depleted resources. The risk of my blood sugar dropping is much higher after skipping my tube, and that would be a catastrophe to deal with in the middle of New York City.
We walked ten blocks in the suffocating humidity—ninety-six degrees by 9:30 a.m.—and came across a Mexican-looking diner that served only American food. The inside was cramped, making it hard to maneuver my wheelchair to a table, but I smashed my way through and we ordered. As we ate, I noticed that my wheelchair battery was already at 9/10 bars. Slightly disturbing, but my corned beef hash was a more pressing matter at that moment.
A stranger came to our table and told us that Jesus loved us. He left us a $20 bill to pay for our meal.
Our next destination was Central Park, mostly because we wanted to relax in the shade while planning out our day. Unfortunately, on the twenty-block walk, my chair battery dropped to 8/10 and then 7/10 bars. My old chair could go a week on a single charge, so I had not at all been expecting my new chair to have issues with a single day. If there was any solace to be found, it was that I had my chair charger in my book bag. Granted, it takes eight hours to charge my chair, but I had the comfort of knowing I wasn’t completely shit out of luck.
Did I mention that I was sick? That’s probably an appropriate detail to add here. So not only was I using a new wheelchair that didn’t fit me, with a battery that was failing, and an exhausted body from skipping my tube, but I also had a cold that resulted in multiple bouts of mucus hacking as we navigated the frantic streets.
In the park, we rested beneath a tree, both of us soaking with perspiration. I could barely breathe due to a chunk of phlegm lodged in my right lung. My chair battery was at 5/10 bars. All we could do was laugh as we poured water on our heads and figured out how we were going to charge my chair in New York City.
The rest of the day was grueling—and by far one of the best days of my life. Let me take you through some of the highlights, and I even have pictures to go along with them:
We made it to the Museum of Natural History with 2/10 bars of battery. I can count on one hand the number of times my battery has been that low in my life. Something was clearly wrong with this battery. Our plan was to tour the museum for a few hours in order to escape the punishing heat outside, a plan that was apparently shared by all thirty-two million people in New York that day. The museum was overrun with sweaty people. It didn’t matter, though; as soon as we entered, my chair began to die, and I was forced to charge it at the only outlet in the whole damn building, right in between two exhibits.
Charging my wheelchair in a random hallway in the Museum of Natural History, as millions of visitors stream past, giving me concerned looks.
Hannah sat on the floor next to me while my chair charged, joking about how vagrant we must look. It became obvious pretty quickly that today was not going to be what we had imagined. Our discussion shifted from what activities we’d do, to where we could find another outlet. Coffee shops felt promising, so we agreed to find lunch and then a coffee shop for further charging.
Meanwhile, my burden complex was having itself a field day in my head. I was single-handedly ruining our first adventure together because of my wheelchair. This was it. She’d realize how annoying it was to date me, and it would all come crashing down. I must have expressed this as we walked the few blocks to Shake Shack for lunch because I have a vivid memory of Hannah stopping me in the middle of the sidewalk. She sat down on a stoop next to me and took my hand in hers. Our fingers fit together so naturally, and the drips of sweat served as lubrication for an even easier interlocking.
“Shane, stop. There’s nothing in the world I’d rather be doing right now. This is hilarious, and we’re having an adventure!”
Her smile calmed me, and I knew, as we leaned in for a steamy, romantic smooch, that she was being honest. It was true; as frustrating as it was, the day was less than half over and we already had a beautiful memory together.
My chair was dying fast, less than ten minutes after leaving the museum, so I waited on the sidewalk while Hannah ran into Shake Shack for takeout.
We made it to a little coffee shop a few blocks away where we sat for two more hours of charging. To keep ourselves entertained, we played a game where we pretended to be on a blind date gone horribly wrong. As the day progressed into late afternoon, I contemplated our journey back to Port Authority. We had about forty blocks to walk, which seemed doable by the time the last bus left at 10:30 p.m. We’d get dinner, then take our time wandering back. At least, that was the plan.
My wheelchair had other ideas in mind. By the time we arrived at a cozy Irish restaurant an hour later, my battery was almost completely empty again. I was about ready to ditch the stupid chair and ask Hannah to carry me the rest of the way. My body was also growing weary by this point in the day, a result of the heat, my illness, the new wheelchair, and miles of driving across the bumpy terrain of New York City. It was getting dark, and I wanted to leave plenty of time to make it back to the bus station in case we had to charge my chair along the way. Still, in the midst of such frustration and physical distress, all I felt was thankfulness for Han
nah and for the life I was living.
I’m sure you have guessed by now that we didn’t make it back to the bus. We made a valiant effort, hightailing it on Seventh Avenue as the clock (and my battery) ticked down. For the last couple of blocks, Hannah cradled my neck as we walked since I was no longer able to hold my head up. I was utterly spent and nearing hysteria as, on Sixtieth Street, my chair once again began to die—with still twenty blocks to go. We had no choice but to enter a nearby mall, where we begged the cashier in a fancy lotion store to let me charge my chair behind the counter. She allowed it, and the picture we took there may be the best representation of our day. I bought lime-flavored lip balm as a thank-you.
God bless L’Occitane.
Back out into the city streets! I made it a whopping five more blocks before the battery died again. Thankfully, we were near a Starbucks, which we entered like soldiers returning from a merciless war.
We decided (or accepted) that we were not going to make it back to the bus station in time. My parents were currently on a vacation of their own, in Maine, so they wouldn’t be able to come pick us up, and I didn’t think it was appropriate to ask a friend to drive two hours to rescue us in the middle of the night. We searched for nearby hotels and found one that had rooms available. At last, relief was in sight!
I’ll never forget the feeling of getting into bed with Hannah that night, collapsing into each other in pure exhaustion, with slimy skin and matted hair, a pile of our wet clothing growing moldy on the floor below (clothing we would have to put back on in the morning). It was surely a disturbing sight to behold, but we didn’t care. We fell asleep instantly, without blankets, fan on high, and a deep comfort that only could have come from traversing such great adversity together. And we even remembered to plug my wheelchair into its charger.
Zonked.
Chapter 16
Adaptation
It was my dad’s fifty-fifth birthday, and a good chunk of my family was crammed into my newly renovated basement man-cave/writing room/bedroom/sex dungeon. I quieted everyone for a special demonstration.
“Ladies and gentlemen,” I said, “thank you all for coming today. I know you’re ostensibly here for Dad’s birthday, but it’s obvious that the real reason you came was to see my new room.”
Half of them groaned. Andrew told me to shut up. A few of my grandparents didn’t understand what was going on.
“Please allow me to blow your minds.” I cleared my throat. “Alexa, play some salsa music!”
A small cylindrical device lit up neon blue in the corner of the room. This was Alexa, a new product from Amazon designed to completely automate your home—from music to weather to shopping lists to calendars. She changed my life (we’ll get to that), but back then, she was still having some trouble learning my voice.
Alexa spoke in her seductive electronic voice, but unfortunately, she misunderstood my request for music, responding, “You have seven items on your shopping list.”
Oh God. This was bad. Everyone was listening intently, but it was too late to stop her. I wracked my brain, trying to remember what joke items my brother had added last night when we were testing out the new device.
“Milk, extra-small condoms, Vagisil for my vagina, Shane sucks, apples, more Vagisil, butthole butthole butthole.”
Andrew was in hysterics on the couch. My mom looked at me like I had murdered one of her cats. I said, “Alrighty! Welp, that’s enough of that! How about we all head back upstairs and celebrate Dad’s birthday!” I could hear my grandfather muttering something about inappropriate language as they filed out of the room.
Adaptive technology—devices and technology that help people accomplish activities made challenging by their disabilities—is not always perfect, but if you set aside tiny mishaps like this, it has truly revolutionized my life and given me incredible independence. The fact is unavoidable: The environment and our society are not constructed with disability in mind, which is why we, meaning people with disabilities, have become experts in adaptation. In nature, species adapt to the environmental challenges that they face in order to thrive. When lizards realized—holy shit!—there’s way more food underground, they adapted by making their legs fall off and becoming snakes that could slither into tiny holes in the Earth. Can you tell I’m not a scientist?
Evolutionary changes such as these obviously take place over millions of years, but it still shows how organisms will do whatever it takes to survive in their environment.
A few years ago, as my disease began dealing heavier blows to the strength in my wrists and fingers, I learned how crucial adaptation was in my life. One of my favorite activities was playing the soccer video game FIFA. Sports have always been a huge part of my life, and while I was able to sort of half-play them in my wheelchair, nothing got me closer to the action than sports-simulation video games. With a game like FIFA, I was right there on the pitch, controlling every aspect of my players’ movements. When I had friends over to play FIFA, you could hear us screaming at the TV from a block away.
Unfortunately, a game like FIFA required a high level of finger dexterity. In order to make your player sprint and turn and pass and defend and shoot, many buttons and levers needed to be pushed and pulled all at once. As my disease progressed, I began losing the ability to play my favorite game. I started to lose every match I played. It really blew. For a while, my friends enjoyed their newfound success, but eventually it became apparent that their wins were not a result of their skills but of my hands going to shit.
One afternoon, my best friend Pat and I were lazing around the house. He asked if I wanted to play FIFA, and I uncharacteristically declined.
“Oh, that’s right, you suck now,” he said. We started talking about the new issues I was having with my hands and how it appeared that our FIFA days were coming to an end. But then Pat had an idea: “Could we build some kind of contraption to help you push the buttons?” It sounded like one of those ideas that seems plausible in theory, but requires too much effort and skill to ever come to fruition. Pat, however, was already standing and making his way to the basement.
He returned with a hot glue gun and an assortment of random supplies: pencils, paper clips, wood, an eraser. We began tinkering and toying with different solutions. There was really only one button on the controller (R2) that I had fully lost the strength to press. We decided we might be able to fashion an attachment that would allow me to use a different finger to access this button.
We chopped up pencils. We bent paperclips, knifed rubber, melted plastic, and more. After almost two hours of work, just as we used up the last of my mother’s hot glue (sorry Mom), our masterpiece was complete! It wasn’t pretty, in fact it was an abomination, but it worked! With the slightest flick of my thumb, I could now press the required button again. We went in my room to test it and I kicked Pat’s ass harder than I had in months (I don’t actually remember if I won, but it’s my book, so if I say it, it’s true. You suck, Pat).
With a progressive disease like spinal muscular atrophy, it can often feel like life is a giant downward slope, like you’re constantly moving backward on the ability scale. For every achievement or success, there always seems to be two more steps backward. I’m painting with broad strokes here, but you get the idea. This is why adaptation is so vitally important to me. Whether I’m using actual adaptive equipment, like the specialized seat I need to sit on the toilet, or hackjobs like my modified video game controller, I am able to reverse the downward trend of my disease, maintaining function that I would lose otherwise.
I often speak about the need to “make it work.” It’s such a simple idea, but I find it to be incredibly profound. Like the reptiles that abandoned their legs in search of food, I’ve developed a variety of adaptations that help me live happily and comfortably.
At night, once I’m arranged in my sleeping position, I can’t move unless I call someone to roll me. In my teens, I began getting sores on my ears because they were smushed against the pillow
all night. So, we took a memory foam pillow and cut a hole in it. Boom. Ear pillow. Comfort.
Also, before I go to sleep at night, I—like everyone else my age—enjoy being on my phone to text or play games or read. I can’t hold my phone while lying in bed, so in high school, I purchased a twenty-dollar extendable arm that clips to the side of my bed and holds my phone in a reachable position. Boom. Phone holder. Function.
I can’t itch my face, so I keep a straw nearby to scratch it. Boom.
I’ve lost the ability to chew food, so I use a feeding tube at night. Boom. How annoying are these booms?
Sometimes my head falls over in the car, so we turned a neck brace into a head-holder-upper. BOOOM.
Most recently, I wanted a way to control the music and lights and heat in my remodeled basement, and the Amazon Alexa device provided a perfect (most of the time) solution. When it’s not making my grandparents think I’m a psychopath, the device gives me the independence to control my environment. As I continue to lose more strength, I will need to adapt further. But that’s the most beautiful part about “making it work.” Despite the fear and uncertainty of my condition getting worse in my future, I can live with relaxed confidence, knowing there will always be a way to overcome the next hurdle that life throws at me. I can’t reverse the disease, but adaptation makes the downward slope less steep.
Horribly ill-advised cup holder. BOOM.
