Body Image And Disability: Living with a body that’s trying to self-Destruct

There’s this feeling of grieving after each seizure I have. Slipping back in to consciousness, and in to the reception of a funeral for the body I could have had. Looking down from above in to a casket holding a figure I don’t recognize, until realizing it’s my own.

I can’t describe how scary it is to wake up in a puddle of your own blood and not know where you are, even more so to look in the mirror and not recognize the swollen and bruised mass that’s staring you back. In a world where I feel so at odds with beauty standards already, it feels like my body has made the strategic move of trading to the other team, my literal being trying to overthrow the very shell that keeps me oppressed. There is nothing to ground myself in, not even the vessel that carries these feelings of displacement.

You would think these experiences would lead me to treat my body with tenderness, appreciate the monumental tasks that are waking up every morning, bathing myself, and preparing my own meals. Instead they’ve often caused a backlash of turmoil, deepening my self revolt. My first thoughts after an episode are often not to rest, apply ice, or seek medical attention. I’ve regained consciousness and jumped straight in to a cardio circuit. I’ve slit open my scalp and been more afraid of getting a bald spot than brain damage. I could blame this on women’s beauty standards, but perhaps it’s simply a statement on my own petty little ego.

The way I saw it your health is the most important gift you have, above all else, until it effects the way that you look. An ailing beautiful woman is tragic. An ailing ugly person is just sad.

My self-hate exists in precarious balance with my expectation for nothing less than perfection. I may not be where I want, look how I want, be living the life I dreamt of, but I’ve always had the belief that I could get there if I worked hard enough and I wasn’t about to let some medical diagnosis get in the way of that. The number of days I’ve had stolen from me, opportunities, events; to give in to this little helpless charade is just what my body wants.

I want no responsibility for its actions. We don’t work together, merely alongside each other--some harder than others. Two colleagues avoiding eye contact at the water cooler.

I’ve been getting caught up in obsessive habits and routines, attempting to control a body I have so little control over. Truth is it doesn’t matter how many face masks I do, how much money I spend to get my hair highlighted, or weight I lose, in an instant I just become a bruised, battered, incomprehensible mess. My wounds a physicalization of the helplessness I feel.

I’m aware talking about this may make some people uncomfortable. I understand because it makes me uncomfortable as well. This wasn’t the image I had of myself either. Seeing myself after a seizure often sends me in to a fit of rage and combust in to tears. Maybe this is a bad idea, I don’t want anyone’s pity, but these words flow so easily out of me because they constantly lay just below the surface threatening to break through. As I invite people in to a head space that has felt so unseen, at the very least I thank myself for putting out the content I wish I had access to.

It often feels like my dirty little secret. Like if someone were to see me after a bad fall it would permanently tarnish their view or attraction to me. A bereavement I must carry alone. Let’s reschedule, I would never want to burden you with the task of looking at me like this, please forgive me.

I imagined one of the supermodels I see on social media coming out with something like this. I imagined how others may commend them for their brutal honesty, and empathize with their struggle. It didn’t feel like these sentiments would apply to me because I didn’t have that baseline of beauty to fall back on. Presenting gory and unattractive photos of myself would not be interpreted as temporary knowing that my usual state was not show stoppingly gorgeous but a “cute on a good day, if I’ve been keeping up a constant workout routine, donning makeup in dim lighting” vibe. There were too many factors that led to my desirability and my seizures were constantly abolishing them.

Who am I to be wanted, loved, lusted after? I spent the majority of my life struggling with the way that I looked and my body’s repayment for my humility is to exaggerate the grotesque I assumed I’d grow out of. The excess folds of skin, bumps, and discolouration, those things don’t go away just because your body is trying to self-destruct. There’s no room for intersectionality. I cannot be disabled, and fat, and have bad skin, and body hair. It feels like I’m playing lonely loser bingo and am about to score big.

And you know what’s really scary? The idea that the dazzling personality that’s always been my crutch, isn’t enough. Having to face the possible fact that some of the things in my life may have been attained through some connection to the way that I looked. I worry as my looks become increasingly jeopardized so will the way I’m treated by others, adding to the stress of an incrementally declining self-image.

My epilepsy is just the cherry on top of a lifetime of dissatisfaction with my body. Not that I even normally use the term “epilepsy” to refer to my health condition, makes it seem too concrete. I don’t believe in labels, me and seizures are just seeing each other casually. I know they’re not good for me, and I could do so much better, some days I’ll just wake up in bed with them not knowing how I got there, and stumble home crying to a friend saying that was the last time, even though we both know it won’t be.

I probably sound like an idiot. Worrying about how hot others may or may not find me when 6 months ago my neurologist told me we should possibly consider surgically removing a piece of my brain. There are certain medications I hesitate to try when possible side effects include weight gain or excess sebum production. Others can’t feel the pain of my battered temples from being repeatedly slammed on to the tiled floor of my bathroom, the scrapes on my back from the glass that shattered around me, the sting of my tongue that was almost bit in two from the clenching of a jaw so tight--

But they can see my swollen lips. My blackened eyes. My bloodied nose.

“Don’t live for others!” I hear them crying from the bleachers. “It’s your life, do what’s best for you!”

What’s best for me? The same me who poses a threat to myself every moment of everyday, as I hope--pray my body will remain on it’s best behaviour. I rely on other people, need other people to be there, to save me from myself. When I call loved ones to tell them “I just had another one”, the first follow-up question always posed is “Were you alone?” Waiting with bated breath on the other end of the receiver, fingers crossed hoping the answer is no. For what could be worse than my sole company?

How can you forgive a body that’s betrayed you? That’s working actively against you?

I could live with the self-hate until it became physical. I could put up with the verbal abuse until the first punches were thrown. This isn’t love, they’d say. Get out, have an escape plan ready. But the call is coming from inside of the house, the doors are locked, and my hands are tied.

I need other people.

It doesn’t feel like to be viewed as beautiful, sexually desirable, would come from a place of radical self-acceptance but a partner who was overwhelming accepting themselves. It doesn’t feel like my self interpretation could be altered by a shift in mindset, but through validation from others.

And when I find somebody who still thinks I’m pretty despite my body’s routine little temper tantrums, despite how I may look in the recovery period, I must cherish them.

To put up with all of this! “Not every guy could do that you know...” The beauty to my beast, the saviour complex to my charity case.

I’m twenty-two, I’ve got my whole life ahead of me, and I already wonder how my body will carry me through it. Can I go to concerts with friends where there may be strobe lights? Could I live in an apartment alone? Drive a car someday? Carry a baby without the constant fear of falling or passing along this bullshit to my offspring? I don’t know. I guess it’s kind of a miracle that despite my regular trips to hell and back, the major physical trauma my body faces on an ongoing basis, it’s still here. Still holding me up strong enough to pen these words to paper, as I berate it publicly for all the harm it’s done me, the only one to point fingers at, yet it’s still the most reliably in my corner.