Strangers Assume My Girlfriend Is My Nurse

by Shane Burcaw

  Chapter 17

  Your Complete Guide to Shane’s Sex Life

  Society has a disturbing infatuation with my sex life, and I’m not saying that in a Donald Trump “Everyone is so obsessed with me!” kind of way.

  My blog has always had a feature that allows readers to anonymously ask me anything they want to know, and by far the most common questions are about my bedroom business affairs and the functions of my reproductive system.

  Initially, it tickled me to respond to these questions publicly, because everyone seemed so impressed that “someone like me” could and did engage in sexual activity. I felt special, like a rare breed of the disabled population who had overcome the social stigmas surrounding disability to such an exceptional degree that I was worthy of sex. This, I later realized, was completely inaccurate, immature, and idiotic.

  Sex and intimacy for people with physical disabilities is just as common and diverse as it is for any subpopulation of people. My desire to see myself as special or better than others in that sense was nothing more than a childish effort to bolster my insecurity-ridden ego.

  Nonetheless, the general public’s deep curiosity about my sexual abilities suggests there is an overwhelming lack of understanding regarding this issue. In an effort to clear up some of the confusion, here are a smattering of questions I’ve been asked by real people, as well as responses that I’m refreshing for the purposes of this book. Keep in mind, my experiences, shortcomings, methods, abilities, and inabilities are not meant to be representative of the disability community, the wheelchair-user community, or even the SMA community.

  And now that I’ve belabored the point long enough to guarantee I won’t receive angry reviews for this chapter, I will begin.

  People have asked me:

  “Do you have a penis?”

  Yes, six of them, actually. Every time one of my major muscle groups begins to weaken because of my disease, I grow an additional penis. It’s an interesting—albeit rather useless—perk of spinal muscular atrophy.

  “Can you get a boner?”

  I can! They’ve been coming in heavy and healthy ever since puberty hit, and I guess even earlier than that, but prior to puberty I had no idea what they meant. When I was a little kid, I used to get them while lying facedown during physical therapy because of the way my groin pressed against the floor. That always made for an awkward surprise when the therapist rolled me onto my back for a new stretch. And that’s a detail I’ve never shared with anyone until I wrote this book!

  Zero working legs but half a dozen working dicks.

  From what I understand, even though the penis contains muscles, the act of a boner rising to attention is more about blood rushing to that area of the body than muscle strength. My disease does not affect my blood flow.

  “Do you masturbate?”

  I wish I had kept a count of how many people have asked me this question through my blog. People question me about this so often that it’s baffling. I try to imagine someone reading my blog—stories about breaking my femur, getting pneumonia, fearing death, going to the beach, etc.—and after all that information, the one thing they just need to know about me is if I fondle my own penis. Not that our lives are remotely comparable, but this feels akin to reading a biography on Abraham Lincoln and coming away from the experience wondering only if he became constipated very often throughout his lifetime.

  For all you perverts, I had the ability to masturbate until I was about eighteen years old. The trickier part of the whole process was the cleanup, which involved pretending my nose was running so that someone would give me a bunch of tissues. Throughout my teen years, I was plagued with a constantly running nose, or so it seemed.

  When my arms and hands became too weak to continue this activity, my dignity took a hit. It felt like I was losing part of what made me a valuable man. I took solace in the fact that my penis worked, and that in the grand scheme of things, being able to jizz in a clump of tissues wasn’t the most important ability.

  “Can you/do you have sex?”

  I can and I do, although my physical structure and ability require some adaptation in the process. First, since I know my grandparents are reading this, I’ll explain how my disease complicates standard, basic, run-of-the-mill sex, and then I’ll share why I believe my disability actually improves sex and intimacy for my girlfriend and me.

  As I’ve already established, my dick itself works phenomenally. The complications, then, are related to my muscle contractures. My body is stuck in a pretty rigid shape. When you don’t use your muscles, they shrink, and eventually they become permanently tight. When I lie on my back, my body remains frozen in the sitting position, like a capital L tipped on its side. To imagine this, lie on your back and pull your heels up until they touch your butt. Perfect, now you’re me!

  The fact of the matter is that having sex requires certain parts of the body to be very close to each other, and when one of the participants is a crumpled mess of atrophied rigidness, that closeness can be tough to achieve. My partner can’t simply hop on top of me, because if she did, my legs would smash into smithereens, and I suspect that would take some of the pleasure out of the experience.

  Making love, then, becomes about finding positions that work. This often involves lots of bending, twisting, and contorting, which is why I only date gymnasts. My girlfriend and I have found some methods that work for us, and while we might look like a pair of grappling spiders, all that matters is that we’re both enjoying the experience.

  Early on it tortured me that I couldn’t be a “better” sexual partner. My head was filled with damaging ideas about the importance of a man being able to perform in bed, and at times in my life, I was convinced that no woman in her right mind would ever want to be intimate with me. But as I became older and more experienced, I began to realize that intimacy in a relationship is so much more about the emotional connection than the physical one. SMA actually strengthens that aspect of my relationship. Having fun together physically requires us to communicate and listen to each other, which in turn makes us both much more aware of the other’s pleasure. We’ve discovered that using our hands and mouths (and toes) is just as much fun as The Sacred Act. Once I abandoned the idea that sex needs to conform to society’s narrow and ignorant guidelines—man dazzles woman by how hard and strong and fast he can gyrate his hips into hers—my sex life became much healthier and more enjoyable.

  “Can you have children? Will they inherit your disease?”

  Spinal muscular atrophy is a genetically transmitted disease, so there is a chance that any Shane Juniors I create will have the disease, but the likelihood of that happening depends on whether or not the mother of my kids is herself a “carrier” of the disease. One in forty people carries the genetic mutation that causes SMA. My parents, although they don’t have the disease, are each carriers, which meant there was a one in four chance their kids would get it. It gets real science-y if you want to know more about it than that.

  My plan is to have enough children with SMA so that our family outings look like some sort of day program for people with disabilities.

  Chapter 18

  Another Bathroom Story

  You can’t truly know that you want to spend forever with someone until you’ve pooped in their arms.

  Hannah and I were spending the weekend at a friend’s house in Connecticut. One night, after a wonderful evening of food and drinks with her friends, we retired to our guest bedroom. It was late and we were exhausted, so when Hannah asked me about showering or using the bathroom, I declined. The memory foam mattress was calling my name.

  Three hours later, I awoke in the confusing, hazy dream-state that accompanies waking up in a strange location. I gathered my bearings and felt a vague discomfort in the pit of my stomach. As always, Hannah had somehow managed to steal all seventeen blankets that we had previously been sharing. Despite being exposed to the elements, I found that I was drenched in a thick layer of sweat. My stomach gurgled.<
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  “Hey, babe? Can you roll me?” I whispered, knowing it would probably take a few tries to rouse her from her slumber.

  She murmured incoherent gibberish, and reached over to adjust my ankle by a few inches.

  “Nope! Almost!” I tried again. “Hannah? Can you wake up to roll me, baby?”

  She snuggled closer to me and whispered, “I’m just looking for the vein.”

  “Hannah, can you please wake up? I think something might be wrong.”

  The panic in my voice snapped her out of the sleep trance. She popped up onto her elbow, immediately awake, and asked what I needed. The discomfort in my stomach was gaining strength, and it felt like every inch of my body was dripping with sweat. I was shivering, and there was an elephant sitting on my chest, making it difficult to breathe.

  I very rarely have stomach issues, and the few times throughout my life when I have had them, they usually evaporated pretty quickly. My muscles don’t work, but I have the intestinal fortitude of an ox.

  I suggested that I should try to pee—my 3 a.m. logic telling me that urinating might somehow solve the problem. Hannah began to climb out of bed to find my pee jar, but her movement sent a wave of nausea tearing through my body. I swallowed several times to avoid puking on our friend’s mattress.

  “Oh God, hold on. I need you to stop moving,” I said. My tone must have been urgent, because Hannah froze mid-movement. Minutes passed with agonizing slowness, as I focused all of my mental and physical energy on not throwing up.

  When the contents of my stomach realized that the northern passageway had been sealed off, they made an about-face and set off toward the southern exit with gusto. Their journey was not a quiet one. The army trudged along, beating their drums, thrusting their torches into every inner crevice, stabbing my organs with their pitchforks, and bellowing their haunting war cries.

  The outward manifestation of this violent internal siege laid upon my bowels was just a soft, repeated moan escaping from my lips. It probably seemed like I was being actively possessed by a demon.

  “I think I’m going to have diarrhea,” I whimpered.

  Hannah sprang into action, snatching my specialized toilet seat from our suitcase and moving toward the bathroom to set it up in the dark.

  Sensing that the army was approaching its target, I called to her, “I’m going to need you to hurry.” This sent me into another series of convulsions. Someone had their fists wrapped around my stomach and was squeezing tighter and tighter.

  I closed my eyes and slipped back into the fever dream.

  Seconds later, I awoke again and found myself cradled in Hannah’s arms, being carried toward the bathroom. The ten-foot walk seemed to take hours, as I concentrated every ounce of my determination on avoiding eruption in the hallway. I remember looking up at Hannah’s face and feeling the comfort of her sleepy smile wash over me like warm water. I was dating an actual goddess.

  Here I was in the midst of a full-on catastrophe, ravaged by what was about to be an atomic finale. I was cold and sweating and scared and naked and vulnerable, and yet, I felt no semblance of the embarrassment that you might expect. In fact, as she lowered me onto the toilet, and the guttural splashes filled the room with sounds and smells, she began to laugh and rub my back while keeping me steady atop the toilet.

  Love is a difficult feeling to describe, but I can assure you it feels something like that moment, when the whole crazy mess of it reduced me to shaking laughter in her arms.

  Chapter 19

  Coughing

  Each time, it begins with the slightest tickle in the throat, a tiny scratching that should easily be washed away with a sip of water, or at least that’s how it seems.

  When water doesn’t do the trick, I know that a coughing fit is on the way, because it’s not just a simple scratchy throat, but an irritation in my airway, a small but dangerous nugget of phlegm starting to form in my windpipe. I hunker down and prepare for the impending storm.

  It’s important that I don’t cough too early. There will be plenty of time for that. Right now, energy consumption is key. I place my fork on the table, stop eating, and focus my attention on taking slow, deep breaths. My eyes begin to water as I resist the cough that’s building in my chest. The length of my resistance is dependent on the environment I’m in. If I’m in public, I fight off the urge to cough as long as possible—what’s about to ensue will be noisy and embarrassing—but if I’m alone, I don’t wait as long to begin.

  The first few coughs always escape unintentionally, literally forcing their way out of my lungs. They’re usually weak and pathetic, quick hiccups of air, like a sputtering engine coming to life. Once they’re out, there’s no holding back.

  I have no choice but to embrace it. There’s no phlegm yet, but I promise you it’ll be here soon. For now, my dry coughs simply amplify the scratching in my throat. The coughing increases, and this is the part where people around me typically notice that something is going on.

  “You okay?”

  “Need a sip of water?”

  I’m grateful that my friends and family are so attentive to my breathing. I shake my head yes for okay and no for the water. If I could get words out between the rapid jags, I’d say that while it may look like I’m drowning, I’m in perfect control. Stressed, yes. Scared, yes. But still in control. I’ve learned the progression of my coughing fits, and I know the time and focus it takes to get through them.

  The phlegm begins to build—tiny crackles felt deep in the cavernous pockets of my lower right lung. Long ago, I was told by a doctor that I would probably always have phlegm in this area, a result of the twisted shape of my rib cage. Most of the time it lies dormant, but each coughing fit brings the phlegm roaring back to life, gurgling its way up, searching for an exit. Each successive cough makes the rumbling grow louder, and it now feels like there’s a pocket of bubbling liquid in my chest. The coughing is no longer involuntary. The itch in my throat is gone, but I now must work to clear the phlegm that’s stirred up. I cough with as much force as I can muster, taking deep breaths between each burst to give myself the best chance of expelling some phlegm. My chest is extremely weakened by my disease, so after a few good coughs, I need to rest. During the rest, my breathing is labored. It’s harder to get enough oxygen when you’ve got a lungful of nastiness working itself into a frenzy.

  These fits can take anywhere from ten minutes to several hours. When the phlegm gets too serious, I have several machines that I can use to assist me with coughing. I’m never really in danger, but it’s a fatiguing process, and one that reminds me of my always-decreasing lung function.

  As I get older, these obnoxious coughing fits happen more frequently, and it seems to take less to initiate them. For instance, last week I made the dire mistake of laughing too aggressively with a mouthful of rice. One of the kernels (is a piece of rice called a kernel?) shot into my airway for a split second before I coughed it out, but a lengthy phlegm festival was triggered in the process. My own spit seems to seep into my airway and set off a cough-a-thon at least several times a week. Like all aspects of this disease, the changes are slow and tough to measure unless viewed from the perspective of five or ten years, but coughing has become a part of my daily routine, and that makes me worry about what my lung function will be like in the future.

  Why am I sharing this with you? Well, for starters, yesterday I had the most delicious spaghetti experience interrupted by one of these obnoxious coughing fits. But more so because as I write this, winter is coming, and for someone living with spinal muscular atrophy, that means the looming threat of illness. Each year I wonder how my lungs will hold up if I happen to catch a cold. This is the cheerful thought I contemplate while I sip my pumpkin spice latte and watch the leaves fall from the trees.

  But my thoughts aren’t all bleak. I see the coughing as a little reminder to live harder and with more passion than I did the day before. Life is precious and beautiful, and no amount of coughing is going to change tha
t.

  Chapter 20

  If I Could Walk

  In early 2016, I gave a talk at Clearview Elementary School to a classroom full of fifth graders. I was there with my dad, who is the author of an awesome children’s book called The Sidecar Kings. We were visiting the class to discuss the book and share my real-life story of disability with the young readers. Speaking to kids is always an interesting experience because they usually speak their true minds regarding my disability. When talking to these young audiences, I always have to put on metaphorical armor to guard my emotions against their uncensored questions.

  And trust me, I’ve gotten some crazy ones.

  Why can’t you pee on your own? What’s wrong with you? Do you sleep in your wheelchair? Do you sleep? Why do you talk like that? Can you walk? Can you read? What if your house has steps?

  These questions make me chuckle, because there’s nothing offensive about them. They come from an honest lack of knowledge. That’s why I do these speeches: to help kids fill in the gaps in their knowledge about disability in their developing brains and to show them that I’m just like everybody else.

  At my most recent talk, a little girl asked me a question that I’ve been asked a million times: “What is the first thing you would do if you could walk?”

  Every time I get this question I give a quick, lame answer like, “I’d love to be able to skateboard.” Kids love that response, because it’s something they can identify with, something they can imagine. I watch their eyes light up with wonder as they picture me climbing out of my chair and hopping on a skateboard. Plus, it’s an honest answer. I have yearned for the ability to skateboard many times throughout my life.

  But after this talk, when I was lying in bed trying to fall asleep, I found myself giving careful thought to the question. Is skateboarding truly the first thing I would do if I were suddenly cured of my disease? Is it even possible to know a real answer to this extremely hypothetical question? My brain loves to dig up huge philosophical issues whenever I’m trying to sleep. Thank you, brain.