by Shane Burcaw
Several hours into the evening, I needed to pee, and Martha offered to help me. Being friends with an intensive-care nurse definitely has its perks; she knew how to lift and bathroom me without much instruction, which saved us a solid three minutes every time.
After emptying the contents of my pee jar into the toilet, Martha said she was stepping outside for a cigarette, and did I want to be lifted back into my chair before she did that or was I comfortable to stay lying on my bed for the two minutes that she would be outside?
I laughed at her question and said I was fine to stay in bed. Martha probably didn’t know it because we’d only been friends for a few months, but this response was quite out of character for me.
Did you know that one in every four people who use wheelchairs sleeps with their eyes open? That’s a true fact that I made up.
As a child, I had developed an intense fear of being left to die in my bed. Having zero ability to move once lying down, I had trouble coping with the (incredibly unlikely) possibility that I would be abandoned by all those who care about me, and left to starve and rot in my bed until death arrived. (Okay, so maybe my Ron fears were not the first time I’ve been a bit irrational.)
The origin of this fear was one singular night in childhood when my parents sat on the front porch after putting me to sleep. I called for them, and they didn’t hear me. So I panicked and began to scream for them, and when they still didn’t rush in to rescue me, I assumed they’d been murdered and that I was now left for dead.
Considering this childhood fear, coupled with my new difficulties being alone, I still have no idea why I agreed to stay in my bed.
Martha walked outside. I heard the front door close. Minutes passed. I heard the front doorknob making noises, but no Martha. More minutes passed.
That was odd.
Then I heard my back doorknob jiggle, but no Martha.
Shit.
It dawned on me that both the front and back doors had been locked when she stepped out, a consequence of my newfound fear of intruders. Martha, not being used to the doors being set to automatically lock, had probably pulled the door closed behind her to keep out the cold, and locked herself out.
A few minutes passed, during which I imagined Martha checking every window for an unlocked entry point. She’s going to figure this out, I told myself. The wind howled outside. Worst-case scenario: My parents would be home within a few hours and they would either have keys with them or would authorize the breaking of a window to get inside.
I was perfectly safe, perfectly comfortable, and yet my brain began to imagine the most horrifying of outcomes.
What if Martha tripped in the dark and was hurt and my parents received a terribly timed call from my brother, who needed them to immediately drive three hours to help him with something urgent at college? I’d be stuck there all night, and without my feeding tube at 10 p.m., my blood sugar would certainly drop. I’d fall into a coma, and because of my depressed lung function, I would obviously stop breathing. That would be the end.
Or what if I got a coughing jag and needed to puke (it doesn’t matter that this has never happened, it could happen!), and I was unable to roll over onto my side? I’d vomit on my back like a volcano, aspirate, and die. Simple. Fuck, why hadn’t she broken a window yet?
My heart was racing, hands dripping buckets of sweat. Then I heard her voice, faint but clear, coming from outside my bedroom window: “Shane! I’m locked out!”
“We have a spare key!” I yelled, realizing it as I yelled it.
She could hardly hear me. The wind was particularly strong that night. I repeated myself.
“Where is it?” she screamed back. Oh, to be my neighbors observing this interaction from afar.
I attempted to yell directions, but she only partially understood me, which I gathered from the growing panic in her responses. More minutes passed. Nothing. I began to accept that I was not going to survive and started making peace with everything around me. It had been a good life, mostly enjoyable, relatively pain-free, full of love and excitement. I kid now, but in that moment I was nauseous with distress.
The front door clicked open. She came down the hallway in a rush, tears in her eyes, and suddenly everything came to a screaming halt.
Time stopped.
Our laughter filled the bedroom.
She put me back in my chair. I was alive and that was all that mattered. During our celebratory adult beverage, though, I couldn’t help but replay the situation in my head on repeat. Never in a million years would I have forgotten to check the lock like Martha had. It wasn’t her fault; she just doesn’t have a Neurotic Safety Officer in her head like I do.
In fact, no one I know thinks through situations at the same level of detail and caution that I do, because they have no reason to worry about such trivialities. For me, a locked door could mean death. Unlikely, yes, but still something I worry about.
This incident ended with laughter, but it also inspired me to cut back on my Ron-era safety precautions. Living in a military-level safety zone was too difficult when I had to share that space with carefree people. It still scared me, but I knew I was just asking for more mishaps and stress if I continued living my life behind double-locked doors.
Chapter 4
Road Rage and Rag Dolls
After plopping out of his mother’s baby-hole, an infant giraffe lies in a mangled mess of cockeyed legs and neck, squirming about in a pool of afterbirth. He’s weak and has no control over his body. As time passes he must learn how to stand upright, wobbling about on spindly limbs, teetering on the brink of toppling at the slightest gust of wind.
In terms of physical appearance and strength, my body is comparable to that of a newborn giraffe, although most of the time I’m not covered in afterbirth.
Spinal muscular atrophy has worked its deteriorating magic on me for many years, to the point where my weakness is bordering on paralysis in many areas of my body.
For instance, I’m losing the ability to hold my head upright, which requires neck muscles to balance the weight of my head. This new loss of ability creates issues in places like the car for fairly obvious reasons. Put that baby giraffe in a moving vehicle and slam the brakes. What happens?
Once I lose balance of my head, I don’t have the strength to lift it upright again, meaning I must wait in an awkward, uncomfortable sideways position until someone can assist me. These are the lovely quirks you get to deal with when you live with my disease.
In recent years, driving in my van has become an adventurous task. The slightest acceleration sends my head flying backward. A gentle push of the brake pedal flings it forward. I’m a helpless human rag doll.
I’ve suggested countless times that we just duct-tape me to the roof of the van in the fetal position, but so far, none of my friends or family have been brave enough to attempt that plan. Instead, I ask my drivers to accelerate, brake, and turn with careful caution. Once we get moving, I have no trouble staying balanced; it’s just those initial changes in speed. When I’m feeling particularly tired, I wear a foam neck brace that stabilizes my head. For the most part, cautious driving and my neck brace have made it possible for me to safely ride in my van.
Driving cautiously, though, angers other drivers like you wouldn’t believe.
One afternoon, as my cousin Sarah carefully accelerated from a green light, the driver behind us laid on his horn until we were up to the speed limit. Keep in mind, I don’t ask my friends to drive unsafely. Sarah simply didn’t gun the throttle to the floor. We rolled our eyes while the psychotic driver behind us flipped the bird and shouted obscenities inside his car.
A basic rule of driving is do not merge while taking selfies.
That is just one example, but it happens constantly. More and more often, people honk, gesture wildly, and tailgate inches behind us. My favorite move is when an angered driver flies past us on non-passing roads, usually while simultaneously laying on the horn to make us extra aware of his bunched
panties.
I asked my girlfriend to take it easy turning a corner in a residential neighborhood last summer, and a man behind us screamed out his truck window at her: “Let’s fucking go!” Literally screamed with a fury so hateful it was as if he was fleeing from an oncoming tidal wave and we had blocked his path by having a picnic in the middle of the road. He was enraged because we made the turn five miles per hour slower than he expected. Livid. We had completely ruined his day with our slightly slower turn. The interactions I face on the road are so abundant and ridiculous that I can’t truthfully write it off as coincidence or even bad luck.
I began to wonder, why are people in such a hurry all the time? Surely, they can’t all be late for an important meeting. They can’t all have pregnant wives going into labor in the back seat.
I’m hesitant to attribute this anger to any misunderstanding of disability. Drivers behind me don’t know there’s a baby giraffe boy in the car. In fact, if I put a giant sticker on the back of my van that reads: WHEELCHAIR USER WITH NO NECK MUSCLES ONBOARD, I’m sure drivers would be more understanding.
More to that point, when people are aware of my disability, they’re typically more sympathetic to my slowness. My girlfriend and I often visit New York City, a breeding ground for angry people with a vicious need to move quickly at all times. You’d think that when I take my time to slowly drive my wheelchair off the bumpy curb cut at the end of each block, the classic Impatient New Yorker would scoff and moan at having to step around me. Actually, the exact opposite is true. Complete strangers routinely slow down as I cross the street to ask if they can be of any assistance.
A more satisfying explanation came to me while eating lunch at Panera recently (and I’m just going to continue to mention Panera Bread in every book I write until they decide to hook me up with some kind of sponsorship—I’m also a huge fan of Apple products and Wendy’s chicken nuggets).
I was sitting near the front door, and I watched as a woman entered, saw the line of three people at the cash register, and let out such an audible sigh of annoyance that I’m surprised she didn’t melt into a puddle of disgust right there on the floor. Clearly, waiting for three people to order before her was an insulting inconvenience. I pointed this out to the friend I was eating with, and we watched with glee when the cashier informed her that they no longer carried the drink she wanted, another obvious slap in the face from a universe conspiring against her. She was cranky, and it felt so good to watch her be so cranky. I enjoyed that they didn’t have her drink. Serves her right, I thought.
As the woman walked past us on her way out, I heard her say into her cell phone, “I’m on my way. Does he still have a fever?”
Oh.
Suddenly I imagined a backstory for this stranger. Sick kid. Forced to leave work to pick him up. Looming project deadlines that won’t be met. Maybe no father around to help? I began to appreciate how a tiny inconvenience could lead to such outward frustration. All I had seen was a microscopic fraction of her life, but when I began to consider all the billions of details that might be at play in this woman’s story, I felt ashamed of delighting in her misery. I thought the line and lack of drink served her right for being in a bad mood, but really she deserved my sympathy and understanding.
Perhaps this is the type of awareness that people are lacking when they get angry about the way my friends drive my van. Failing to realize that each and every person is living their own unique and highly complex story leads us to make assumptions that suit our own desires. People assume a slow-moving vehicle is just because of an idiotic driver, rather than considering the complicated and vast number of reasons any given car might move slowly at any moment on any given day.
I offer this idea simply because if I get honked at one more time for how we drive, I’m getting out of the van and smashing my wheelchair full-speed into the side of your precious car.
Chapter 5
Strangers Assume My Girlfriend Is My Nurse
I know it’s probably tough for you to fathom, but I have had a few serious romantic relationships in my lifetime. Even more surprising may be that the women who decided to date me have done so willingly, under sound mind, body, and spirit. I didn’t trick them. I didn’t pay them. Our relationships were not accidents. We just fell in love.
I’m expecting your doubts about this truth because, in my experience, people generally do not naturally associate disability with romance. In my travels as a writer and motivational speaker, I’ve interacted with hundreds of thousands of people, and more often than not, they react with awkward shock and obvious confusion when they learn that the beautiful lady standing next to me is, in fact, my girlfriend. Let me give you an example.
A few years ago, I was dating a girl named Aruba (that’s not her real name, but how sexy would that have been?). Aruba and I were out on a dinner date when a stranger approached us to have a friendly conversation. He said that he was a huge fan of my writing, and then turned to my girlfriend and asked, “Are you his sister?”
Now, there is nothing inherently wrong with his question, but if I saw two young people out having a nice meal together, I would probably assume that they were dating, or at least friends, and if I wasn’t sure, I certainly wouldn’t venture to blindly guess.
This, however, does not seem to be the assumption people make when you throw my wheelchair into the picture.
On many occasions my girlfriend was questioned about the nature of our relationship. People asked if she was my mom. People asked if she was my nurse. Once, a person blankly asked if she was “the one who takes care of him.” Over time we got used to this bizarre, recurring question, and often found ways to poke fun at their ignorance.
“He’s my dad,” Aruba answered with deadpan perfection.
“My parents pay her to be my friend,” I once said.
The mind-set that causes a stranger to automatically assume that any female in my presence is a nurse or family is one that ignores the reality that people with disabilities can and do have “normal” romantic relationships. I place normal in quotations because I’m not sure if there is such a thing as normal when it comes to love.
For a good chunk of my young life, I didn’t think I was worthy of that type of affection. I was convinced that my physical limitations would not only prevent girls from wanting to date me but also keep me from being a good boyfriend.
Here’s how my teenage logic worked: I will not be able to pick her up in my car, I can’t give her hugs or hold her hand very well, and we will be restricted in the activities we can do for dates. On top of that, she’s almost definitely going to be a major contributor to my daily care. There’s no way all these factors won’t eventually become a burden for her. It all seemed rather hopeless in the heart-wrenching, hormone-fueled days of middle and high school.
I worried even more that a girl would date me out of pity, silently putting up with the annoyances of my disease because she felt bad for me. This sounds ridiculous now that I’m older, but society had thoroughly convinced me that people pitied me to such extreme degrees that a woman might fancy herself in love with me even though she felt mostly sympathy.
Then college came and I met some spectacular people who helped me shake the notion that love was only for the physically abled. It was as if my brain opened up and I began to unlearn all the things I had believed about how my disability works in the world.
Sure, I couldn’t hold Aruba’s hand in the traditional sense, but we made it work. (To be fair, our fingers looked like a catastrophic train wreck once they were intertwined in the precise position that I could manage, but we were holding hands!) I couldn’t pick her up in my car, but so what? She enjoyed driving, and so we made it work. I couldn’t go mountain climbing with her, but I made her laugh, so we found other activities, and we made it work. And no, I couldn’t jump on top of her in bed, but she could jump on top of me, and so we … actually, that one just worked by itself.
Once I realized that there were girls out there w
ho were more than happy to “make it work,” the fear of being unloved for all eternity drifted away like a funny joke of the past.
Today, I live with the firm belief that an able/disabled relationship can be even more satisfying than your average romance. I know I’m still young and stupid, so I don’t want to pretend I have this all figured out, but I believe romantic fulfillment comes from true intimacy and that deep closeness in an able/disabled relationship blossoms from the process of teaching one partner to “care” for the other. If I were able-bodied, I might be conditioned to believe a real man doesn’t show vulnerability to a woman, and it might take a while for me to open up to a girlfriend, but because of my disability I’m forced to show vulnerability right away, and our relationship is that much more intimate from the get-go.
For example, the first day that Aruba and I ever spent together, we went out for brunch at a local diner. This outing required Aruba to learn many new Shane Helper Lessons in a very brief amount of time—things like putting on my jacket, driving my van, picking up my head when I lost my balance, cutting my food, and helping me take sips of my drink.
The good news for people helping me take sips is that the slightest mistake can cause me to choke and die.
At this point in our relationship, I hardly knew Aruba, and I was afraid that I might overwhelm her with all of this Helping Stuff. I must have expressed this in some fashion, because I vividly remember a conversation where she promised that she was excited by the prospect of learning how to help me.
There is something profoundly intimate about a promise like that. On my end, I felt a deep sense of serenity from trusting her with my care. On her side, and I’ve checked with her, there was an important emotional connection that began to develop when she chose to be with me despite the extra requirements of needing to help cut my meatloaf.
