by Shane Burcaw
Yes, SMA is a progressive disease, meaning that over time, I get weaker, but again, the articles used this fact to suggest that a worthwhile life requires physical ability, that life with a disability isn’t worth living. Of course she wants to kill herself, the articles implied, because even without the pain, her future wouldn’t be very bright. Wrong.
I know a writer with SMA who uses his voice and a lip-controlled mouse to write and is routinely published in the New York Times, Los Angeles Times, and Chicago Tribune.
I know a painter with SMA who has trouble lifting his arms but will blow your socks off with the art he creates.
I know a mother with SMA who is raising children and working full-time with 24–7 ventilator support.
These are the common stories of SMA: people thriving and making the most of the cards they’ve been dealt. I said it before, and I’ll say it again: There are times when living with SMA truly just blows. It’s one hell of a disease both physically and emotionally, but the beauty in life still far outweighs the negatives for the overwhelming majority of us.
Eventually, advocacy groups got wind of Jerika’s story and attempted to intervene. Their basic argument was one that many of us in the disability community were already thinking: This girl doesn’t need to die—she needs help. As far as was being reported, Jerika was receiving medical advice from the doctors in her immediate area, but hadn’t received other opinions before making such a drastic decision. I’ve found that in treating such a serious condition, more opinions almost always lead to more solutions. What might have happened if the media and the public rallied to fly her to the nation’s top pain-management expert in California or Massachusetts, rather than raising thousands of dollars for her big prom?
If an able-bodied teenager went public with their decision to commit suicide because of mental illness or chronic physical pain, a GoFundMe would be set up to help them receive top-of-the-line treatment and counseling. Comment sections would be flooded with urges to reconsider. But because the prevailing story focused on the fact that Jerika’s disability made her life and future so awful anyway, even without her exceptionally high pain, the movement to get Jerika more help never really gained momentum in the public eye. People were overwhelmingly content to support her decision simply because living a worthwhile life and living with a disability are not compatible ideas for a disturbing portion of the general population.
Jerika entered hospice, had her ventilator turned off, and passed away on September 22, 2016. There were no major news outlets covering her death.
Three months later, on December 23, the FDA approved the first-ever treatment to stop and even reverse the progression of SMA. It was a groundbreaking and momentous event.
Jerika was not with us to celebrate, but at least she had her prom.
Chapter 10
Beaufort
Wheelchairs and sand do not have a great relationship. If they made their relationship Facebook official, their status would be the ominously vague “It’s Complicated.” They’re trying to be mature and work things out, but it’s pretty obvious that they just aren’t meant for each other. It’s not hard to understand why: The electric wheelchair is a highly advanced (and expensive) piece of machinery, with hundreds of nooks and crannies that need to remain free of foreign objects in order to function properly. On the other hand, the only reason sand exists is to squirm its way into every conceivable crevice it comes across. That’s why when you spend a day at the beach, you pay the price by spending the next four years picking sand out of your ears and belly button and that weird hard-to-reach spot under your balls.
Put wheelchairs and sand together and you’ve got a recipe for disaster.
Now, you’re probably thinking: “Right, but electric wheelchairs weren’t made to drive on sand. This should never even be an issue. And for someone as cautious and meticulous as you, it’s even more unlikely that you would ever find yourself in a situation where you need to worry about sand destroying your wheelchair. Right, Shane?”
Here, it’s important to explain that, even with my strong tendency to “play it safe,” I’m still human, and therefore prone to occasional diversions from sensibility and reason. Even with a disability that forces me to consider backup plans A through Z, even while fearing that the smallest of mistakes could leave me stranded or injured, even with my belief that thoroughly planning every aspect of life is the key to success and happiness, there are still moments when all of that caution flies out the window and my careful decision-making gives way to the hedonistic urges that live inside all of us. Putting it bluntly, I can still be an idiot from time to time.
It was during one of these rare careless moments that my wheelchair was formally introduced to sand for the first time. My brother and I were on another trip a few months after our not-so-wild weekend in Buffalo. This time, we went south in search of warmer weather and crab cakes. We ended up in the town of Beaufort, South Carolina, which turned out to be quite a quaint-yet-lively little gem.
After several days of leisurely strolling the two-block “downtown” district, popping into art shops and crab shacks, and exploring the surrounding historic neighborhoods, we were hit with a sudden desire to spend some time on the beach.
Getting me onto the beach is fairly simple, assuming I have a team of eighteen Olympic athletes assisting me. I own a specialized “beach wheelchair” that is constructed with creaky PVC piping, huge inflatable rubber tires, and mesh seating. Assembling and disassembling the wheelchair (which must be done to get it in the van) takes determination, brute strength, and luck. The chair would hold a small rhinoceros, so when you plop tiny, fragile me into it, the result is plenty of room for my frail body to get tossed around. We compensate by filling this extra space with a thousand pillows. Once I’m finally locked in, I could be hit by a dump truck and not feel a thing, which is important, because pushing the damn contraption is even harder than getting it together. Pushing it over lumpy sand is a whole different monster.
Unfortunately, we had left my bulky beach wheelchair at home, a thousand miles away. This should have been the end of that idea, but the appeal of relaxing on the beach in the southern sun clouded our judgment.
We Googled the nearby beaches, and selected a state park called Hunting Island. On the way there, we were forced to think about how this beach trip was actually going to work with my wheelchair.
“So, what will I do? I can’t drive on sand. If there are even tiny dunes I won’t be able to see the ocean,” I said.
“Maybe we can find a spot where the road gets close to the water so you can stay in your chair, or I’ll just carry you and lay you in the sand,” Andrew said, unworried. I imagined being shit on by seagulls and eaten alive by crabs while Andrew frolicked in the water.
It also floats, but I’ve never experimented with that feature because sharks.
The drive to Hunting Island took us through a progressively more unsettling terrain of swampy wetlands that stretched our minds about the ways that real human beings live. Right in the midst of the marshes, we saw dozens of dilapidated homes set on junk-filled lawns. Children running naked, chasing each other with sticks. Old, broken cars up on their axels, dead for years. But in front of each home, near the road, painted on fresh wood in lavish reds and whites, stood a sign: SHRIMP $8/LB. I was in love.
When we got to Hunting Island State Park, there was no beach in sight, and as we drove down the single-lane gravel road, a dense forest of trees enshrouded us. It was impossible not to wonder if we were being led into a trap. The parking lot was little more than a small clearing in the middle of a jungle. As far as we could see (and hear) in every direction, there was nothing but trees and vines and wildlife and swamps.
I began to say that there would obviously not be accessible trails in a place like this, when Andrew called to me from twenty feet away, “Hey! A sidewalk!”
At this point—discovering a fully accessible trail in the most wildernessy place I’d ever been—it felt lik
e the Universe was just handing me favors.
We followed the path into the deep, dark forest.
Pretty soon, we began to hear the familiar rumble of waves crashing. We ran along the path, trees thinning around us, and suddenly, the sidewalk ended and there was sand! Up ahead, maybe thirty yards away, was a large sand dune, and after that, we assumed, the ocean, but to get there was only a narrow path of sand that led through the last stretch of trees.
Damnit. We had come so close.
“You run up and see it, I’ll hang here,” I said, trying to be upbeat. My disease has a nasty way of sneaking up on me. In moments like these—traveling, exploring unencumbered, having fun—I forget about my wheelchair and my inabilities, and then I’m facing a patch of sand and it’s like a switch is thrown in my head. It was all I could do not to scream. Instead, I gritted my teeth, bit the inside of my lip, and encouraged my brother to check out the ocean.
He looked around, as if a ramp might be hidden in the underbrush. “I’m not going up there unless you come,” he said. (Have I mentioned that I love my brother?)
“Think I can drive on it?” I asked. To this day I don’t understand why I said these words.
He laughed, and stepped into the sand to test the firmness. His shoes sunk a solid two inches as he shuffled around. “Ehh … Maybe if I pull you?” he said with all the confidence of a third grader being asked to perform open-heart surgery.
When you read what I did next, please remember that my need to travel comes from a deep desire to experience excitement and fear and wonder, so that when my last day on Earth arrives, whenever that ends up being, I’m not left with regret that I wasted my time here.
But you’ll probably also remember that I’m just an idiot sometimes.
I inched my wheelchair off the lip of the sidewalk into the sand, with my brother holding the frame to ease the drop. I thunked down and knew right away this was never going to work. My front wheels were already a few inches deep—so deep that my back wheels (still on the sidewalk) were unable to propel me forward.
Andrew rolled up his jeans and grabbed the base of my chair, instructing me to gas it every time he gave a tug.
He pulled and my back wheels plopped down into the sand.
I tried to accelerate, but my back wheels just spun, unable to get any traction in the sand, rotating themselves into a rut. I wondered if there were dangerous animals in these woods.
Andrew yanked my chair with all of his strength, giving me just enough momentum to climb out of my wheel ruts.
“Don’t stop!” he screamed.
So I didn’t. With Andrew basically crawling on the ground in front of me, pulling my three-hundred-pound chair with considerable difficulty, I kept the accelerator gently pressed. We fell into a rhythm: a couple feet forward, more wheel ruts, another heroic burst of strength by Andrew, a couple feet forward, etc.
It had to look like he was dragging me to the ocean against my will.
I was sweating profusely after a few minutes, so you can imagine what Andrew looked like. We inched our way to the dune, which, thank the sweet heavens, wasn’t much of a dune, but rather a cliff that looked down to the beach below. The effort took over a half hour, and included several hang-ups where we honestly contemplated calling the police to come save us, but at last we made it to the edge, and the Atlantic Ocean came into view.
“Get a pic of how fucked I am!”
Andrew laid on his back in the sand, gasping, but besides that we were quiet for a few minutes, watching the waves break onto the beach below us.
After a long while, Andrew spoke. “I’m not pulling you back, so you’re gonna have to just stay here.”
Chapter 11
Rant
If you use a wheelchair and you’re in the mood to be reminded just how little society thinks of you, pack your things and head to the nearest restaurant. If my experiences are any indication of the norm, your meal will include at least one insulting interaction with a stranger. If it’s a particularly good night, there will also be a thick layer of awkwardness drizzled on top of your evening.
First of all, you’re going to be given a kids’ menu. That’s pretty much a given. Regardless of your age, you use a wheelchair to get around rather than walking, so you certainly do not have the desire or capacity to eat adult foods like prime rib or oysters. Can I interest you in some apple slices or maybe a Big Boy Personal Pan Pizza with a toy? On countless occasions in my adult life, I’ve had to call the server back after discovering my menu had a maze and tic-tac-toe boards on it.
Now that you have the proper menu, the waitstaff has realized that you’ve probably been granted special permission by your caretakers to dine from the adult menu for one night and one night only. Their behavior toward you can go in one of two directions from here: either they’ll embrace the charade and act like you’re a competent human being, or they’ll continue to anticipate your inability at every turn.
Many times, when the server arrives at my table, they’ll ask whoever I’m with what I’d like to eat, instead of me. As in, I sit there looking in the waiter’s eyes waiting to order while he turns to my friend and says, “What would he like?” I am not asked because it is assumed I cannot answer this question with any sort of accuracy. Waiters must fear that if they let me order, I very well might ask to sample the chandelier I saw twinkling in the lobby on my way in.
If you’re interested in having an adult beverage, go ahead and forget it unless you’re a masochist craving a little extra humiliation. For example, while dining with my parents one evening, I ordered a beer. The waiter chuckled, nudged my dad’s shoulder, and said, “We’ve got a wild man!” I had to repeat my order for him to realize I actually wanted a beer. He looked to my parents with such grave concern it was like I requested that he urinate in my face. On a separate occasion, I was brought the nonalcoholic version of the vodka and club that I had ordered, and I would’ve thought it was a simple mistake had he not given a sly wink to my brother before he said to me, “We made it extra special for you, bud.”
On the slim chance that the restaurant staff doesn’t insult you, there’s still plenty of opportunity to be degraded by the other patrons dining in your proximity.
Once, in my preteen years, I was watching a football game at a pizza shop with my brother. We were chanting, carrying on, and yelling at the television like obnoxious idiots. A man approached with his wife and kids. He sat down at our table wearing an expression like he just had to euthanize our grandmother and he was here to tell us the sad news.
With a voice that matched his solemn face, he said, “Do you boys like hockey?”
We nodded at the possible murderer.
“You brought me great joy tonight, seeing your smiling faces.” He pulled four box-seat Flyers tickets out of his fucking pocket and put them on the table, touched my shoulder the way one does when bidding farewell to a lover, smiled, and walked away with his family.
Receiving gifts from strangers has always been a theme in my life, and while it may appear wholesome and like a pretty great wheelchair perk on the surface, it actually feels pretty messed up to me. Strangers have handed me actual cash more times than I can count, with no explanation other than a smile and some kind words about what a blessing I am. Their reasoning is clearly implied, though: “Your life must be sad and unfortunate. I can’t take away your disability, but hopefully this gift will make that hardship easier for you.”
Being given a gift by a stranger once or twice in a lifetime would be sweet, a neat event to write home about, but when it happens a few times a year, it forces me to confront the fact that people see my life as having such little value that they’ll happily give me free stuff in an effort to “help.”
My favorite interactions are the ones that mix insulting and truly bizarre behavior. One time I was out to dinner with my girlfriend, Hannah, at one of our favorite seafood restaurants, a cozy, quiet place where conversations are had over candlelight. We were talking and laughin
g when a woman in her thirties approached the table. She leaned toward us, placed both her hands on her heart, and said, somewhat theatrically, “You two are going to make me cry. This is beautiful.” I don’t need to explain why this one was inappropriate, right? We blinked at her until she went away.
A few weeks later I was having lunch at a diner when a woman came up to my table, put her hand on my neck, bowed her head, closed her eyes, and began to pray: “Lord, I ask that you heal this child of his suffering and provide him with a happy life.”
Again, I was sitting with Hannah. We’d spent the morning walking along a river and visiting an antique bookstore.
“I actually live a pretty awesome life. Thank you, ma’am,” I said.
Her eyes grew wide with the shock that I could speak, and she backed away muttering apologies for making assumptions. This was a relatively good outcome. I’ve been involuntarily prayed upon many times, but it’s not too often that one of my healers realizes they’ve made a mistake like this.
On the one hand, these social interactions are infuriating. The constant toddler treatment makes it difficult to see myself with any sort of value in the context of society. I know in my head that I’m a funny, charismatic, intelligent, well-adjusted dude, with friends and responsibilities and goals and skills—a human—and yet, that self-knowledge doesn’t hold much weight when strangers are consistently reminding me that they see me in a much different light. It would be one thing if these interactions were rare, but they happen so often that it’s remarkable if I eat out and don’t experience some form of this mistreatment. And I’ve only shared interactions from eating at restaurants, but this kind of treatment extends to almost every aspect of my life. The combined effect is overwhelming, an unavoidable message that I am worth nothing more than pity, and I find it extremely disheartening.