Am I Disabled?

Telephone lines crackle, fuses heat and blow. It’s the tremendous rise of energy right before the dark.

Seize is the perfect word; to take hold of suddenly and forcibly.

There’s lightning storms in my head and they show no sign of clearing.

- Lightning Storms, 2020

I’m seven years old, alone in a completely white room, laying on a bed shirtless, still flat chested, but for the first time in my life I become very conscious of this fact. My body is covered in adhesive bandages that pull painfully at my skin when I try to pick them off. I realize the room is an ambulance and I have no idea how I got here.

I’m nine years old, in a guest bedroom that overlooks the back garden at my parents friends’ house and I don’t know how I got here.

I’m eighteen, flat on my back on my kitchen floor with two of my roommates bent over above me.

“Chloe? You just had a seizure.”

I’ve always done everything “right”, by the book. I get my eight hours of sleep a night, I eat organic, I stretch twice daily, I don’t drink, I don’t do drugs, I wear SPF 110.

Yet...

This hadn’t happened since I was a kid, nearly a decade exactly. It didn’t make any sense, why now? What had changed?

I had my very first seizure when I was 1 year old. They weren’t irregular throughout my toddlerhood, but they gradually became less and less frequent, an annual occurrence, until at nine when I had my last one. I had been in a jacuzzi, temperature being my biggest trigger. When they stopped I would still get incredibly overwhelmed on a hot summer’s day, couldn’t handle long baths, catching a fever was especially risky, but I was okay. Nothing had been bad enough to send me in to another episode.

Until nearly a decade later, while making breakfast like every morning before, when they started again.

I remember going back to my bedroom and scrolling through texts I didn’t remember sending. I reached out to the friend who had most recently messaged me and asked if he’d seen me lately. After joking about how blackout drunk I must of been, he’d told me that the previous night we’d gone out “with Ryan and those guys”.

“Who’s Ryan?” I asked. It took me a month to remember who that close friend of mine was.

I’ve always been incredibly independent, don’t like relying on others for anything, thinking I can always do things myself, and better probably. Four years ago, my independence was the first thing to be seized from me. I was forced to get in touch with family I wasn’t at the time in contact with, leave the city I was trying to make my new home, rely on doctors I was told knew more about my body than I did.

Over the past few years I’ve worked with three of the most respected neurologists in the city, I’ve been on a dozen medications, had countless brain scans, none of which have helped. In the past year alone I’ve experienced a higher rate of incidents, suffered more injuries. I’ve fractured my nose, my forehead, three teeth, torn open my scalp, had countless black eyes. 5’7 had never seemed so high.

I’ve suffered memory loss, been on drugs that left me so drowsy I was falling asleep on the subway, made my brain so foggy it was difficult to find the words that were on the tip of my tongue. To be hurting and not remember why, to be in pain and not be able to grasp the words to explain it. Suicidal thoughts. That side effect was etched on the side of nearly all the medications I was prescribed but I still didn’t know if it was the drugs causing them, or simply the isolation my condition was creating itself.

When I had 3 seizures in one week, new record, was when it really hit that I needed to have a game plan to support myself. Struggling artist lifestyle, I couldn’t very well keep waitressing to pay the bills if I might possibly collapse at any minute. I moved back to my home city to be closer to family, closer to my medical team, and started looking in to applying for disability support insurance.

But wait--I wasn’t disabled...was I?

Through a familial connection I grew up within the special needs community. I knew people with disabilities that were unimaginable. I knew someone who had a condition that was shared with only three other people globally. I knew people who were considered miracles to just be breathing, to live another year. People who didn’t lose control of their bodies on occasion but didn’t have that control to begin with.

So who was I to be disabled? Filling out the forms I had a sudden rush of imposter syndrome. I was potentially trying to take money that could otherwise go to somebody who really needed it. All in all my body was pretty perfectly functioning...until it wasn’t. Until I blacked out, lost control of my extremities and my mind tapped out.

I’ve started examining what the word “disability” means to me. Disabled brings to mind something technical that has been turned off, a computer that’s been unplugged. Dis-ability, without the ability, unable to, less than. Special needs, chronic illness, medical condition. All these self-describing terms that I don’t feel qualified enough to choose between. Because what I’m being told again and again by the dozens of voices around me is that I’m not qualified to make the decisions about my own body.

The latest drug that has been prescribed to me comes with warnings of “homicidal thoughts” which is where I would normally draw the line. Three months worth of these pills are currently sitting in my bathroom cabinet, untouched. I met with my neurologist the other day who said that to delay our agreed upon schedule of commencing this medication is irresponsible. It’s irresponsible to not want my head to overflow with murderous thoughts.

I have people telling me that it’s my body, my choice. This is not a choice. Between my own safety and others when I suddenly develop an inexplicable desire to stab them. And of course the drug won’t work, because they never do. Because I’m some sort of medical enigma no doctor can figure out. Yet it’s still “irresponsible” of me not to at least try and so I will, and I’ll be back in this same position in another month’s time.

When your body is broken, malfunctioning, self-destructing, there’s this intense guilt that seeps in. It was my fault that I was having seizures, I wasn’t taking enough of the meds that were making it impossible to live my life, I was too stressed all the time, I ate too much gluten, I wasn’t thinking enough positive thoughts!

I was hospitalized the summer before last after falling on the tile floor of my bathroom. After some tests I was told that my salt levels were dangerously low and I was consuming far too much water. I think I may be the only person in history to have gotten this advice from doctors.

As a young person I’ve found it impossible to make sense of what we’re being told generally: eat a lean diet, exercise regularly, and then what I’m told on an individual level: eat more fat, eat more salt, stop exercising so much, stop drinking so much water, try smoking weed.

Everyone’s got an opinion, until you’re asked your own and you realize you don’t have any opinions left to give. I don’t know. I don’t care. I just want to go sleep knowing that I’ll wake up. Or not. I just want to go to sleep.

My mum worries about me being taken advantage of. Having woken up twice naked in bed with someone and not known how I got there I can’t blame her.

I worry about collapsing in the middle of an intersection during rush hour on one of my daily walks. I worry about falling in the shower in my bathroom that only unlocks from the inside and my roommate not being able to help me.

I worry about missing out on regular 20-something-year-old experiences. Because I am, all the time. The possibility of a service dog has been discussed and my first thought was “can I bring the dog to the club?” One of the worst things about living with a “disability” is just the muffling of spontaneity. I have to think a few steps ahead always.

And sometimes I can’t plan. Having epilepsy is like the ultimate exercise of trust, putting your faith and entire well being on whoever may be around when a seizure happens. A lot of the time I’m alone.

I feel like a constant burden to those around me.

Medical bills have cost me and family thousands of dollars we can’t afford.

Literally overnight, like the flick of a light switch, things that had never been an issue my entire life were suddenly intolerable. The flashing of a bike light or even flicker of a candle flame can send my brain in to chaos.

Even with all that has been taken from me, all the abilities I have lost, I don’t feel right calling myself disabled. Half because I feel I don’t deserve the term, I haven’t suffered enough, half because part of me still thinks this is going to stop, hopes that it does. This condition will cease to be a part of my life so it’s not worth getting monogrammed linens, let’s not label this yet, let’s just see where it goes.

This is just an inconvenient blip. They’re going to stop again, because this isn’t who I am. This isn’t how my life is supposed to go.

But this is who I am. Right now I’m living with this. This condition is a part of who I am, though it doesn’t make up my entire identity and I think that applies to everyone, everywhere dealing with any kind of disability. There’s so much stigma we impose, othering we do to those in our communities living with conditions that can already be so isolating. To be a part of, or even adjacent to the disabled community is such an honour I feel, to be bonded by your segregation, your struggle, the confusion. You can not understand and still have empathy. I’m trying to get there with myself. Some days can be really hard. Sometimes...you kinda just want to be understood.

A lot of the time it feels like this body isn’t mine and stopped being mine a long time ago.