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Personal Essay | Invisible Disability

By Jessica Grey

When I was ten years old, I went to a series of specialists because I was experiencing a sudden onset of almost debilitating pain in my legs, which terrified my mother. Luckily, it turned out that the pain was thanks to shin splints, which I’d developed because of the stress put on my legs by my very messed-up feet. In the process of finding this out, though, my mom and I found ourselves in the office of an orthopedic surgeon for a consultation. During the consultation, he seemed to dismiss the actual problem of the innumerable stress fractures in my feet resulting from my extremely flat arches, and instead offered an answer to a question that no one asked: in order to correct the fact that my feet splayed outward to a greater degree than is usual, he wanted to break both of my legs at the shin and turn them so they would heal in a way that would look “more normal.” We never went back to that doctor, because screw that guy. It wasn’t the first time I had been clued in to the fact that my body is not “normal,” but it was the first time I felt that something about my body was wrong.

Like the vast majority of the women in my life, I have never had an easy relationship with my body. At an early age, I was made fun of because of how much I sweat, because of my frequent nose bleeds, because of the clumsiness of my gangly, angular body, because I inherited my dad’s thick, dark body hair. I was the weird, gross kid, with bizarrely large feet, who always fell down and was often sick. But, because we also live in the topsy-turvy world of kyriarchy, I was also told that my weird, sweaty, hairy, misshapen body was a source of terrible temptation and it had to be covered so as to not attract male attention; so as to not tempt boys to sin. These mixed messages are thrown at women constantly: our bodies are disgusting and we have to spend outrageous amount of money fixing them — or, at least, have the decency to be properly ashamed of them — but those same bodies are also so appealing as to be sources of temptation and sin, and that we should have the decency to be properly ashamed of them.

woman-pain

Under those circumstances alone, it is damn near impossible to stumble into a healthy relationship with your body. That doesn’t even begin to touch on the additional complications women of color, trans women, poor women, and disabled women face in trying to establish healthy relationships with their bodies. It doesn’t touch the derision that comes with our fatphobic culture. It doesn’t consider the ways in which all of the above intersect with a culture that commodifies sexiness and conflates thinness with health, success, and worth. And it doesn’t bring into play the ways in which it also turns haywire when you’re experiencing an invisible disability. That last one is what I want to talk about right now, but those other stories are every bit as important and I encourage you to seek them out — this is an excellent place to start, but the internet is a remarkable resource and there are many stories out there.

Despite inhabiting a body that was supposedly so unseemly and unladylike, I loved what my body could do. I could run and jump and do cartwheels in the front yard and play some of the meanest kickball you ever did see. I loved basketball. Later, I fell head-over-heels for fast pitch softball. I played hard; I practiced hard; I pushed myself through miserable workouts and fought to increase my speed, my capacity, my skill. I won’t lie to you — I wasn’t very good. At a certain point, my body — whether for lack of coordination or for having simply hit my upper limit — couldn’t get any better at the tasks I was trying to make it perform. But I still loved it. I loved the feel of it. I didn’t care what I looked like while I was on the field, in the gym, or running bleachers. All that mattered in those moments was how gloriously powerful I felt inside my own skin. I loved that moment when I broke through the burning in all of my muscles and kept going. I marveled at the complexity of the physics that my body and mind automatically performed when I threw the ball and hit my target. Sweaty, hairy, angular, gangly, awkward, and uncoordinated as my body was — in those moments, I found it to be a flesh and blood miracle and I loved it.

Depression and crippling anxiety were the first blows. When you’re in a position that you have only felt comfortable in your own skin when you’re being active and then you lose motivation and gain apathy as well as an exhausting fear of life and people, your ability to appreciate anything — let alone your body — circles the drain. As it turns out, my depression and anxiety can be managed, but are not things that, for the foreseeable future, will ever be cured. Still, in between severe bouts, I’d go for runs or go to the gym. These activities weren’t quite as satisfying as they were when I was younger, but it was still such a welcome relief to feel my muscles pumping; my body regaining strength.

Then came the fibromyalgia. I was working full-time as the lead and supervising cook at a medium-ish café, and I did not have the time or the energy to go running or hit the gym. That was totally okay though, because — let me tell you — working that job was an endurance, cardio, and weight training challenge all rolled into one. My bosses were terrible. Some of our customers were huge jerks. But I loved the job itself. I felt strong. I was cooking food that people liked. I’d singlehandedly handle thousand-dollar days in the kitchen. I was proud of my body. I was proud of what my body was enabling me to do. I guess it was a gradual thing. It felt like certain symptoms crept up on me out of nowhere: going into the walk-in to retrieve ingredients made my entire body ache; chopping potatoes made my fingers cramp so badly that they’d lock up on me; walking home at the end of my shift felt like trying to steady myself on lumps of ground beef for feet.

That was almost four years ago. It has taken me a long time to make peace with the new reality of my body and its capabilities. I say that as though I’ve completed the process. I certainly have not. It is tenuous, at best. It is especially hard to maintain that peace when I look in the mirror and I don’t see a discernible reason why I feel diminished. And if I can’t see it, then neither can anyone else. This ends up meaning that I spend a lot of time and energy from my already depleted reserves explaining that my reserves are depleted. It has meant friends thinking that I’m just being flaky or inconsiderate when I can’t follow through with plans. It has meant looking at a physical activity that I want to participate in through a lens of dreadful anticipation: just what kind of penalty — in terms of pain level and duration — might I have to pay to do this thing I want to do? And because my energy and pain levels fluctuate so much day to day and hour to hour, I can only guesstimate what kind of toll any given thing will take on my body.

I’ve spent a good deal of time in the last four years convinced that my body is my enemy; that it is willfully and wantonly barring me from finding comfort in my own skin, as though my body were somehow separate from me. It wasn’t until the last several months that I’ve started to make my way toward a certain level of acceptance. I’m learning to lean into the moments I can: hula-hooping in my living room, playing with the dogs, walking around the neighborhood, doing yardwork, going to concerts. I’m also learning that the flip side of those moments I can lean into are the moments when I have to take care of my body in much the same way you’d care for a child: rather than berate it because it is in pain (even if I can’t see the cause of the pain), I have to comfort it, nurture it. I have to trust it. I have to trust that there is a reason for the pain and the exhaustion and act accordingly.

So, here I am, in my uneasy truce with my body. I am at a point where I think I can say that I love my body, but there are more than a few times when I don’t like it very much. And I think that is okay. I don’t have to like everything about my body all of the time in order to appreciate it. I don’t have to like that sometimes I lose feeling in my fingers to acknowledge and be grateful for the fact that it is only because of my body that I can feel my husband’s snuggles. I don’t have to like that I have to stretch for a half hour before I get out of bed to appreciate that it is by way of my body that I receive puppy kisses from the dogs while I’m doing my stretches. I don’t have to like my body all the time to appreciate it all the time. And, for now, I think that is a pretty healthy place to be.

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