Strangers Assume My Girlfriend Is My Nurse

by Shane Burcaw

  As we began to experience life together, starting that first day at brunch, we encountered innumerable moments of humor that arose from my Shane Helper Lessons. We reveled in these moments, embracing whatever occurrence led to our fits of giggling, rather than letting awkwardness create tension in the relationship. This mutual laughter brought us even closer. In fact, one of our main sources of bonding became teaching her how to keep me alive, like how to brush my teeth without choking me, or how to put my shoes on without snapping my ankles, or how to shave my face without slicing my jugular.

  That is why I got confused when strangers assumed that she wasn’t my girlfriend, because to us it always seemed so normal. It was fun and it was silly and it was beautiful, and even though we didn’t last forever, we never thought twice about the fact that our relationship was abnormal in any way.

  We simply made it work.

  Chapter 6

  Buffalo

  It was a Sunday in early January, and like most Sundays in January, I was urinating. My brother was the one doing the honors on that particular Sunday afternoon—lifting me to my bed, removing my pants, asking why I never shower on Sundays, and steering my dick into the red plastic pee jar. (Two out of the three books I’ve written so far now include a vivid description of my brother handling my penis, so that’s weird.)

  But this was not your typical Sunday pee session. For the past few days, a scary and exciting idea had been gnawing at my mind, and now was the moment where I was going to release it to the world, specifically to Andrew.

  We had a football game on in my room, so our attention was mostly tuned to that. In retrospect, this distraction probably lessened the poignancy of the heavy conversation we were about to share.

  I tried to be casual and direct. “Hey, would you want to take some kind of trip together before you go back to school?” Andrew was a junior at Lock Haven University, studying ecology. He drove three hours home every few weekends so we could hang out and watch football.

  Andrew was obviously not expecting this question. “Uh, what? Where?” he asked.

  “I don’t care, anywhere, somewhere we both haven’t been.”

  He shrugged in half agreement, which would’ve been the end of it on a normal day, but I had expected him to be neutral at first. So I continued, “I’m serious, dude. I’ll cover the cost. I want to see new places and do something different than sit here playing FIFA for your whole winter break.”

  I must’ve sounded too forceful, because Andrew said, “Jeez, chill. Why do you want to do this so badly all of a sudden? Are you done peeing?”

  I only had one chance to impress upon him how serious I was, but I also didn’t want to make him uncomfortable with the truth, so in a way that only brothers can do, I skirted around the issue: “Andrew, you know exactly why. We don’t need to talk about it, but we need to go do shit. Not in five years. Now.”

  In better moments, I know that thinking this way is absurd, but I was going through a rough phase in my life where the reality of my disease was at the forefront of my mind and made it difficult to dispel my fears—I was always getting weaker, and this decline would continue to erase my physical abilities year after year until it left me totally dependent on humans and machines just to stay alive. I was beginning to feel trapped, and I was looking for any way to prove to myself (and others) that I wouldn’t let my disease restrict my freedom.

  His face softened and he looked away. “I know. Okay, yeah, fuck it, where should we go?”

  With that, my stream sputtered to a close.

  That night, we booked a two-night stay in Buffalo, New York, for the following weekend. I still can’t remember the logic that led us to Buffalo, being that it was January and both of us hated the cold, but despite the ridiculous destination, I woke up the next morning with a new excitement in my chest that I previously feared I might never feel again. I was doing something different, something unexpected, and the possibilities were endless. I felt free.

  First, we had to get ready. Andrew and I have a few distinct personality differences that complicated our preparation for the trip. I am neurotic and detail-oriented to an obnoxious degree. On the other hand, Andrew can be informed that tomorrow he’ll be taking over as President of the United States, and that Russia is launching a full-scale invasion, and that the Mafia is planning his assassination, and that his pants are on fire, and he’ll still maintain a cool attitude of “it’ll get sorted out somehow.”

  I wanted (no, needed) to make an extensive packing list and shop for supplies well ahead of our Thursday departure. Andrew wanted to wake up Thursday morning, toss some shirts into a bag, and go.

  My penchant for planning won out and we made a packing list, but as a symbol of his opposition, Andrew filled the list with items we didn’t need: our cats, tampons, nails, etc.

  The morning of the trip arrived. I ran through a mental checklist several times while Andrew scooped some clothing off his floor and stuffed it in my already-packed suitcase. It was a balmy thirty-eight degrees in Bethlehem, with much colder temperatures expected in Buffalo that weekend. Several times that morning, we questioned what we were going to do for three days in frozen upstate New York, but the “plan” never got much further than “eat wings, swim in the hotel pool, and … uh, figure the rest out along the way?”

  The first time Andrew sat still for more than a few seconds was well after his fifteenth birthday.

  Our lack of a schedule went against the very nature of my cautious mind, but I decided that this trip would be a perfect opportunity to learn how to let go a little bit. To be fair, at the heart of my need for control and organization is fear. What happens if we arrive to our hotel six hundred miles from home and discover stairs leading to the front entrance? What happens if the parking lot is four blocks away and it’s snowing? What happens if the hotel bathroom is too small for Andrew to lift me onto the toilet? My disease creates innumerable considerations that need to be properly met for me to be safe and comfortable. One unexpected narrow doorway can completely ruin an entire trip.

  But there are very few people on this Earth whom I trust as much as my brother, so I decided to take the opportunity to be spontaneous—to relax and enjoy the trip as it unfolded—and accepted that the two of us could navigate any unexpected misfortunes that might arise.

  Thirty minutes into the six-hour drive, we realized we forgot our bathing suits. Andrew was unfazed. “We can swim in our boxers.”

  That scene would thrill hotel management, but it was too late to go back, so I laughed, exhaled, and enjoyed the drive through hundreds of miles of gray, snowy landscapes.

  We got to the hotel—located in city-center Buffalo between Pearl and Main Streets just minutes before nightfall. Entering the city, we had almost died as Andrew attempted to take pictures of the skyscrapers against a cream-colored sunset while steering the van with his knees.

  It was blisteringly cold as we got out of the van to unload our suitcases. The valet attendant was disturbingly jovial for being outside in such dismal conditions.

  “What brings you boys to Buffalo?” he asked with a smile.

  “Just visiting for the hell of it!” I said.

  “Any exciting plans?” he asked with a hint of sarcasm.

  “We might check out Niagara Falls,” I said.

  He laughed. “Perfect time of year for that!”

  When we got to our room, the sun was still settling down over the west end of the city in a stunning orange-pink combination. We opened a bottle of champagne that we brought from home and toasted the weekend in the cold, empty city of Buffalo, the cheerful valet attendant, and the pursuit of signature Buffalo hot wings.

  It turned out that there was an iconic wing spot directly across the street from our hotel, so after we’d warmed ourselves on blueberry champagne (cool, I know), we made our way out into the frozen abyss in search of wings. We arrived at the restaurant only to discover that there were two large steps to the entrance of the building, and I didn�
�t have a coat on. Even though I was just wearing a flimsy sweater, I told Andrew I’d be fine to wait outside while he ran in to grab us food. Holy unbelievable coldness, was I wrong. Buffalo at night in January turned out to be colder than I expected, and so while I shivered my way through a torturous fifteen minutes outside, all I could think about was how incredibly in need of assistance I must’ve looked to every passerby. I’m surprised people didn’t stop to give me money or ask where my parents were.

  Andrew came out with several containers of food, and we hightailed it back to the hotel room, arriving in a mess of sniffling, snotting, teeth-chattering hysterics. Andrew cranked the heat. We opened another bottle of blueberry champagne (I see you judging my drink preferences, please stop). My lukewarm Tater Tots dish was the warmest happiness I’d ever felt. The wings were cold and subpar.

  I fell asleep that night thoroughly satisfied with my life. One of my most potent fears in life is the future. As my muscles deteriorate over time, I often worry that it will become harder and harder to live the active life I have enjoyed. I’ve seen people with my disease become hermits, always stuck inside, in the same place, with the same daily routine—wake, nothing, eat, nothing, TV, nothing, sleep.

  The possibility of that future terrifies me, and so our trip to Buffalo was the beginning of my resistance, like a promise to myself that no matter how tough things get, no matter how worn and wasted my body becomes, I will continue exploring all this world has to offer with the people I love. Having a brother like Andrew makes a promise like that possible.

  Buffalo in January was about as conducive to outdoor activities as you might imagine, but we (stupidly) didn’t let that stop us. The next morning, we attempted to walk down to a central area of the city for coffee, only to give up halfway when the painful bite of subzero wind chills became too much to handle. We trudged back to our hotel room and angrily ordered twelve-dollar cups of coffee from room service before hopping in the van and driving north to Niagara Falls, where—surprise!—it was too overwhelmingly cold to be outside for more than thirty seconds. With trembling blue lips and dripping noses, we made our way up to an accessible lookout as fast as we could.

  Despite the rapidly approaching hypothermia, the view was crisp and magnificent, and for a short moment I saw our trip to Buffalo for what it really was. What we were doing was idiotic. It was a waste of money. It was dangerous and at several times highly irresponsible. It was poorly planned and poorly executed (e.g., that night, we would end up driving to a Buffalo Sabres hockey game “for the hell of it!” only to discover that we’d confused the dates and the Sabres didn’t actually have a game that night). It was mostly pointless. And yet, it could not have been more perfect if I made it up. I was living spontaneously.

  Trying to enjoy the frostbite.

  As we stood there on the balcony that stretched out over the icy blue water hundreds of feet below, the mist of the falls burning our already-numbed faces, my brother turned to me and said, “Wherever we go on our next trip needs to be way fucking warmer.”

  Chapter 7

  Reddit

  The snap judgment that causes people to look at me and instantly feel pity is one that has been turning my cheeks red with embarrassment for most of my life.

  As a young kid, before I knew better, I agreed to be a special guest on the annual MDA Labor Day Telethon, which, for those of you born after the internet was invented, was a yearly fundraising event held by the Muscular Dystrophy Association that brought in millions of dollars to fund muscular dystrophy research. It was basically a twenty-four-hour concert/comedy performance, with breaks between every act to ask the audience for donations. Until his passing, comedian Jerry Lewis was the figurehead of this nationally televised event.

  Tiny little Shane wheeled out into the spotlight when it was his turn, feeling all kinds of nervous after a woman backstage insisted they put makeup on my face to “reduce the oil.” I had a suit on, which felt uncomfortable and made me even more self-conscious. To top it off, I didn’t really understand why I was there. I knew I was going to be on TV in front of millions of people, and that my job was to say thank you to all the people who gave money to help kids like me. I felt confident enough in my ability to say the words “Thank you!” and being on live TV had the shiny allure of something only famous people do, so I had agreed to do it and hadn’t thought much more about it.

  Rows of television cameras watched me drive out from a hundred different angles. An old man in a tuxedo was holding a microphone in the center of the stage. His voice reminded me of the hosts on the game shows my parents liked to watch.

  “Next up we have another one of Jerry’s very special kids, Shane Burcaw from Pennsylvania. Shane is eight years old and likes to play baseball,” and to my surprise, a large audience hiding behind the spotlights let out an emphatic “Awww!”

  What was so adorable about me playing baseball? Nobody aww’d when they learned that my little brother played baseball. Sadly, this was only the beginning of five extremely humiliating minutes.

  The host gave me an exaggerated hug when I reached him, taking subtle, but careful precaution not to touch me. I noticed hair spewing from his ears.

  He turned to face the camera and his voice became deeply somber, like a grief-stricken family member preparing to give a eulogy. “Why do we do these telethons every year? You’re looking at our beautiful, smiling reason right here.” He placed a hand on my shoulder and continued. “We raise money for kids like Shane, who live every day dreaming of a cure, who wish for nothing more than an end to their suffering, an end to their pain, who dream of running on the playground with their friends, and being free from the wheelchairs that hold them back from so much.”

  I stared into the bright lights and felt my face growing hot with shame. He was making it seem like I lived some awful, terrible life. I didn’t spend every day wishing I could walk. I spent every day playing outside with my friends, doing homework, and being a regular kid. In fact, not being able to walk rarely crossed my mind! I did everything pretty normally, just in my wheelchair, and as far as I could tell, I was one of the happiest kids I ever knew. This old man was talking like I spent all day crying alone in my bedroom.

  This was my first taste of how the world sees disability—how people assume I must live a wholly depressing, hopelessly sad existence just because I can’t walk. Even worse, the man was encouraging that type of pity to get more donations! I smiled into those television cameras and said my big “Thank you!” But I didn’t feel happy or thankful. Instead, I was confused and embarrassed.

  As I got older, I began to better understand the tendency of society to portray disability in a negative light. It was like anything else: People didn’t understand it, so therefore it must be bad. In time I developed a thick skin to this kind of misunderstanding, so that when elderly folk approached my mother in the supermarket to extend their warmest condolences to her, the sad mother of the sad child in a wheelchair—“He’s a blessing in disguise,” someone said to her once—I was able to laugh off these idiotic gestures and maintain my dignity. Society had it wrong, but their wrongness was so deeply ingrained from centuries of outcasting the disabled that it didn’t help to get angry. Once again, it was easier just to laugh.

  (Sidenote here: Forcing myself to dig through my memories in search of meaning is a truly surreal experience. I’m finding, in the writing of these chapters, that my current attitude toward the world is, indeed, traceable to concrete moments that speckled my childhood. In other words, the geriatric doofs in the supermarkets of my youth are directly responsible for turning me into the sarcastic, distrusting asshole I am today.)

  In November of 2015, when I was twenty-three years old, I experienced a stark reminder that the world hadn’t changed a whole lot in the fifteen years since my humiliation at the MDA Telethon.

  I used to frequent a website called Reddit that described itself as “the front page of the internet.” If you’re unfamiliar with it, Reddit is a plac
e where anyone can post anything—photos, personal stories, questions, news, etc.—and then anyone on Earth can view and comment and “like” the material. The “liking” feature (called “upvoting” on Reddit) acts as a ranking method for the millions of posts to the site that occur each day—an important way of sorting through the junk, since Reddit averages over a billion (with a b) visits every month. Posts that receive more upvotes from the online community have a better chance of being seen by the multitudes of daily visitors. Reddit also categorizes posts under thousands of different “subreddits,” so, for instance, there is a subreddit called “Politics” that contains only posts about … you guessed it! Politics. Each subreddit has its own set of rules (e.g., in the “Horror Movies” subreddit, you are not allowed to post a silly picture of your niece picking a flower, unless, of course, she is also being stung in the eyeball by a hornet), and these rules are policed by moderators who are like the gatekeepers of the website. It is all very democratic and seamless.

  Half of you reading are rolling your eyes right now, wondering why the hell I’m devoting three-quarters of my entire book to describing the Reddit interface. I promise, there’s a reason! Reddit was about to take a massive shit on my self-esteem.

  You can get famous if one of your posts gets popular on Reddit. One day, while looking through photos on my computer, I found a photo of myself with two unbearably cute kittens perched on my lap. It was from a photo shoot I had done a few years earlier, but when I saw the photo, it hit me: This picture could go viral on Reddit!

  I logged into my account and contemplated which subreddit this photo would perform best under. The most obvious choice, for a photo of precious baby kittens, was the “Aww” subreddit, which defines itself as “Things that make you go AWW!—like puppies, bunnies, babies, and so on…”