by Kelly Jensen
It wasn’t until I was on the operating table, my eyelids slowly getting heavy, that I felt this raw, overwhelming panic. It was the moment of realization I hadn’t had up until that point. A realization that I might not wake up in ten hours. Or that I might wake up paralyzed, and all I’d done was send off some last-minute YOLO, tough-kid status update like this wasn’t a big deal—more importantly, like the people I cared about weren’t a big deal.
I remember lying there and feeling two parts of myself, one screaming at my arms and my legs to move. To get up and run before it was too late. And then another telling me everything was going to be OK. That this surgery was a good thing.
Thankfully, the second part won out, blanketing the anxiety in a deep, steady calm as everything around me slowed down and faded to black.
I woke up in a hospital room over ten hours later, the surgery taking longer due to the fact that my three-sport, varsity-athlete bone density was, according to my surgeon, that of a twenty-one-year-old male athlete. I loudly declared to my mom that my back hurt (duh) and that my pain was a solid “7.869” out of 10. I don’t remember any of this, but I do remember lying in my hospital bed, being rotated like a chicken every few hours by a lovely staff of nurses I am forever indebted to, the pain so constant I began to see how long I could actually go without pressing the button for the morphine drip.
It was never very long.
I would often get woken up by the sound of my pulse oximeter, which measured the amount of oxygen in my blood, beeping loudly, my mom jolting awake in her reclining chair, her brow furrowed as a nurse jogged into the room to turn it off. I remember having to concentrate really hard on breathing so that the numbers would return to normal, the sound finally stopping as I drifted off to sleep, only to start blaring again a few minutes later. My lungs were getting used to my new spine.
Lung function is one of a few big things to test after spinal-fusion surgery. The shift in the spine is so dramatic that it can affect the lungs. Every hour I had to blow as hard as I could into a spirometer, desperately trying to fill my lungs up with enough air to get that thing to move to where it should be.
The second big thing to test for is paralysis. For the duration of the surgery, there was a neuropathologist measuring my brain waves, making sure that every move my surgeon made with his drill didn’t cause any damage. The more I woke up and improved in the days immediately following the surgery, the more tests there were, checking to see if my body still worked the way it used to.
The coolest part was standing. I say this because when I went into surgery, I was an inch and change shorter than my mom. When I slowly stood for the first time post-surgery, we were surprised to find I was now a whole two inches taller than she was. There’s a commemorative picture where I’m droopily grinning at the camera, my eyelids heavier than an elephant, my mom beaming with excitement as I clutch her arm for support.
So, truth be told, there is a surgery that makes you taller! You just need to have a loopy spine that needs to get ironed out.
And ironed out it had been. After I learned how to walk and go up steps, I was whisked away to get an X-ray, the results of which absolutely blew my mind. For the first time, my spine was completely straight. Like . . . completely. Twenty-one pedicle screws attached to two parallel titanium rods had shifted everything back into a straight line, the likes of which I had certainly never seen before in an X-ray of my spine.
The most incredible thing, though, was not the shift in my spine. It was the change in my perspective.
I became proud of my eighteen-inch scar. I became proud of my lumpy shoulder.
I think because of how hard I fought to get better after my surgery, I finally embraced the beauty of my back. There were moments of shock when I showed people my back and my scar, a small part of my journey traced onto my skin. Something I had once kept hidden under tie-dyed sweatshirts and squeezed mercilessly with a back brace was now something I was proud to show off as I strutted onto the deck of the pool at swim meets.
My right shoulder blade will always jut out way farther than my left. Whenever I’m at Target trying clothes on and I catch a glimpse of my back in the every-angle-of-yourself-you-never-knew-existed mirrors, I always pause to look at the scar, surprised even after all these years that it’s there.
But I feel differently about all of that now.
In a poem my best friend wrote in high school, she called the discolored line down my back the point where an “angel’s wings threaten to burst through.” I think about that a lot. How the things we so easily label as blemishes or shame inducing or worthy of hiding turn into something beautiful when looked at through the lens of the people who love us.
The most important thing I’ve learned from this entire experience is that all those things we sometimes don’t like about ourselves truly can be seen as beautiful or unique or strong or wonderful if we love ourselves enough when we look at them.
There was beauty in my back brace. The S of my spine could have been just as capable of inspiring poetry as the eventual scar that replaced it. The fact that I had a slouch when I played the flute made me the most casual-looking musician on any stage.
The parts of us that are different are the parts of us that truly make us special. Oftentimes, they’re the parts of us that tell our story.
Love yourself enough to make it a beautiful one.
The Body That Betrayed Me
by Eugene Grant
He shouldn’t have bent down. Until then, he’d been leaning back against the sweat-soaked ropes of the ring. His feet were planted. His gloved hands covered his face. His head was out of reach of my short arms. His elbows shielded his ribs. Then, perhaps without realizing he was doing it, he threw away the big advantage he had: his height. He bent down. Just a bit. Just enough.
I slammed a left hook into the side of his skull, which was crammed into a blue headguard. The punch didn’t knock him out. I doubt it even hurt a lot. But it achieved what I wanted. It sent a signal to him and to those watching us. It sent a signal to anyone who saw someone like me climb onto the canvas and reacted with doubt and amusement. It sent a signal to my opponent: “the dwarf” is no joke. My power was now on record. Don’t let me catch you slipping.
As a young man, I didn’t consider myself disabled. I had achondroplasia, the most common form of dwarfism, but I wasn’t disabled. You couldn’t be disabled and tough, disabled and manly, disabled and not to be messed with. I, like many other young men, anxiously wanted to be these things. Maybe society disabled me—through others’ ignorance and, sometimes, nastiness, and environments that were built without considering dwarf bodies. But I wasn’t disabled disabled. Not by my body—my silent partner. Together, we disproved the beliefs of people who thought my value was less than theirs simply because I was small. As a young dwarf man, I benefited from all the privileges of being white, straight, cisgender, and middle class. I still do. But back then I had to work twice as hard as most of my average-height peers to exceed people’s expectations.
These expectations were everywhere. They were in our older brothers’ magazines, which were filled with rules on what “perfect” male or female bodies should look like. Chiseled. Curvy. Mostly white. Average height. Airbrushed. Nondisabled. They were in our TV shows, on our bedroom posters, in the ads in our newspapers. Galleries of portraits showing individuals with no scars, no folds, no fat, no stretch marks, no wheelchairs, no canes, no dwarfism.
These expectations seeped into our world. We made them our own. They filtered into our classroom conversations, our behavior on the court, our late-night chats when staying over with friends. Testosterone-addled clichés. Take a punch. Down a pint. Excel at sports. Watch the match. Like these films. Don’t cry. Don’t be a pussy. Don’t care. Don’t back down. How many girls have you been with? This is what a man looks like. We tried so hard to follow these confusing commandments. We tried to stand out�
��while perfectly fitting in. We tried to be ourselves—while being like everyone else.
These expectations are poisonous to young people, especially those so visibly different from their classmates. When I was a young man, this code of average-height, nondisabled masculinity made me feel like my dwarf body marked me as less of a man. My membership to the club of men was never assumed. And so I spent years trying to show everyone I belonged. I felt I had to be twice as physical to be considered just as manly. I’d hurtle toward the finish line or advance upon an opponent twice my size. It didn’t matter if I wasn’t the strongest or the fastest. All that mattered was that I was not the weakest or the slowest. It didn’t matter if I got battered in a boxing bout. All that mattered was that I gave my opponent, and all who watched, something to think about. And I did it because I felt that the “dwarf” could never come in last, that the crowd wouldn’t consider my power to be self-evident, that it needed to be proved.
I loved nothing more than seeing people’s eyes widen and disbelief vanish from their faces as they saw what I—a person with dwarfism—could do. I lived off whispered wows and the fist bumps of respect from those who now accepted me because I had defied their doubts. At one point, I could run five kilometers in thirty-five minutes—fast, if you remember my legs are half the length of the average person’s. My boxing coach told me that pound for pound, I had the hardest punch of anyone he’d trained. I glowed inside.
Through all of this, my dwarf body was my friend. We were literally inseparable. I was as close as I could be to the men in the magazines, the men in the angry crowd on the Fight Club poster that once hung above my bed. I was definitely not disabled, I told myself. Even when my stiff dwarf back hurt and my short dwarf legs ached and I needed to sit down because my lower body felt numb and I was tired, so tired in my bones, I was not disabled.
I loved my body. But what I realize now is that I didn’t love it on its own terms. Not totally. And if you don’t love something on its own terms, maybe that means you never really loved it at all. I thought I loved being a dwarf person. Or maybe I just loved defying people’s assumptions about dwarfism without really questioning these assumptions in the first place. I measured my body against the standards our media, pop culture, and social norms drip-fed us. They are high for any young person but nearly impossible for dwarf and disabled adolescents. I can only imagine these benchmarks are even higher and harder to reach for nonwhite, LGBTQ dwarf and disabled teenagers. And while I knew that bodies in magazines and on TV didn’t really look like that, the result of accepting these standards was that I began to feel they should look like that. I’d quietly measure myself against others who were average height and nondisabled. Sure, I’d think, I’m smaller than you, but am I fitter? Faster? Would I have a chance in a fight? In doing so, I reinforced the same toxic standards against which I was being constantly judged, standards I believed I was fighting.
We live in a capitalist system built on consumption. In this system, bodies—and especially women’s bodies—either are used to sell products or are turned into products themselves. Open any men’s magazine and you’ll see this. They’re glossy textbooks prescribing what male and female bodies should look like (and the accessories that the owners of these bodies are supposed to buy). Male bodies are mostly presented as manly standards for men to reach. Women’s bodies are mostly presented as sexual objects for men to want. Both are presented as opposites—binary—with no room to maneuver in between. The steps to perfection are also products—the diets, the exercise regimes, the clothes. Altogether, we are sold an entire lifestyle. We are sold a dream.
In this capitalist system, young people are a target market—a group of potential consumers. For consumers to buy a product, they must first believe they need it. And if those products are bodies, consumers must first be made to feel that their own bodies are not enough. Someone who shuns these standards and is confident in their own body is a rebel. Rebels don’t fit easily into a system of consumption. That is, unless they can be turned into a commodity, too.
Disabled bodies are not totally excluded from this. Our bodies can be products—just in a different way. This happens in what’s called “inspiration porn.” Inspiration porn is when people use the bodies and stories of disabled people to present them as “inspiring”—often just for being alive. It happens when disabled people’s bodies are depicted in ways that make average-height and nondisabled people feel better about their own. It happens when slogans such as “ability, not disability” or “the only disability is a bad attitude” make it difficult for disabled people to positively identify as being disabled—because we’re told disability is a bad thing. And if you’re told that the practical barriers you face are “only in your mind,” it makes it harder to remove them in real life.
I didn’t realize this when I was younger. So I continued to try to achieve standards that were almost impossible. I was “a dwarf but . . . ,” as the media so often describe us—a phrase in which the words that follow the but nearly always present a dwarf person’s ability in something as compensation for their having dwarfism in the first place (for example, saying “they’re a dwarf but really strong” posits dwarfism as something naturally weak). I did just what society asked of me: I tried to show the world my ability and denied myself my disability. The closer I got to these standards, the more I loved my body.
Until one day, my body betrayed me.
It wasn’t long after that bout in the boxing ring, when my opponent bent down that little bit too low, that it happened. It began with what felt like a pulled muscle in my back. The pain made me cry out as I dressed in the mornings. My body was fine, I told myself. Rest and a massage would fix it. Only they didn’t. This continued for a few months. The pain shifted from muscular aches—like pulling on a rubber band already stretched to its breaking point—to small electric shocks that buzzed through my lower body. The pain made me grimace. My buttocks and hamstrings felt raw—sunburnt. Almost overnight the cold showers I took (I’d read that James Bond finished his showers running only the cold tap) went from refreshing to unbearable. This continued for a few months. My body was fine, I told myself. Don’t be a wimp. Many dwarf people experience nerve pain. Rest and a break from carrying heavy backpacks would fix it. Only they didn’t.
I was with a friend when I wet myself, when I realized I wasn’t fine, when I felt like I no longer knew my body at all. Later, at the hospital, a series of scans showed the bones in my spine had collapsed and they were cutting off my spinal cord. It looked like black stripes across a smoky white tube. This explained the pain, the rawness, the sensitivity. It explained wetting myself: it was harder for the signals to get from my brain to my muscles when they had to move through my spinal cord. It explained everything, only it didn’t. The scans, the surgeon, they all explained what had happened, but nothing could explain why it had happened. Had I exercised too much? Had I gone too far? They couldn’t say—not even a “probably” or “probably not.” They didn’t know.
Leaving the hospital that day, I walked with a stranger. That stranger was my body. Before then, we’d always shared the same footsteps. But now I knew our paths had separated some time ago. At first, it was only by a fraction, but now there was a chasm between me and the body of which I had demanded so much. I’d built the man I so desperately wanted to be on foundations that were now cracked and splintered. Rubble. I was no longer the dwarf who boxed, the dwarf who ran, the manly dwarf, the dwarf whose value came from disproving others’ doubts—there were always doubts, so many doubts—the dwarf who was disabled by society but not by his body. And just then, I no longer recognized myself, for I no longer recognized my body.
My body is still distant from me now. A long scar snakes up my back. It traces the metal that holds my spine together. A short scar creeps up my stomach. It shows where doctors inserted two supports for the metalwork in my back. I can’t really bend or twist. This affects everything—from getting
out of bed, to dressing, to going to the toilet, to sitting down, to the shoes I wear because I can no longer reach my own shoelaces. I am only truly comfortable when I’m asleep or in the shower. Sometimes my back aches and I can click my rib with a disgusting yet satisfying snap. Weird. I can’t enjoy a bath anymore, because my back won’t bend to the shape of the tub—instead it stays straight, like a knife dropped into a bowl. Sitting down or leaning a little in any direction causes a dull ache. Some days my hamstrings and buttocks still feel burnt.
Boxing is out of the question—much to my mum’s relief. So are the martial arts that I’ve studied since I was a child and that have helped protect me from the violence that being disabled attracts like a magnet. Perhaps I was so desperate to protect my body from those who would break it that I ended up breaking it myself. I don’t know. But I know there are no more whispers in the boxing gym about the dwarf with the left hook. There are no more five- kilometer Parkrun certificates. For the first time, I feel disabled by my body. I am no longer able to impress average-height and nondisabled people with what I can do in order to prove my power, in order to “be a man.” For many months after surgery I felt an empty space inside me.
But something has begun to fill this space: a sense of liberation. It’s only now that I can no longer meet the standards I’ve tried so hard to reach, that I have the space to question them. Where did they come from? What do the words real man even mean? Who determined this? How did they get the power to do so? Who gave these people the right to judge my dwarf body as being anything other than perfect and flawed and mine and not theirs? Why, in all my years of answering back and questioning, had I never stopped to query this? And if they had affected me in this way, who else had they affected? Had my body really betrayed me? Or, by accepting the standards expected of me and by pushing my body so hard to surpass them, had I betrayed my body?