It’s two days before Christmas. I’d just returned home the night before, and the next morning I’m staring up at the fluorescent lights of the ER.
Nurses are rushing around asking if I hit my head, shoving flashlights into my eyes to check for signs of a concussion, slapping my arm looking for a vein to draw blood from. It feels like a vivid dream. I’m hazy, confused and so tired. My brain just released an amount of energy my body did not know how to contain, and amidst all this, there’s a voice in the back of my mind whispering over and over: “You’re an idiot. Why did you try to fight it?”
I’ve been in this position before — waking up in the hospital; in an ambulance; on my bedroom floor. I have epilepsy. I’ve been diagnosed since I was 17 but looking back, I’ve probably had it since I was 14. All the times I once classified as “shaky days” were actually the beginnings of a neurological disorder — getting worse and worse until I needed prescription pills and an overhaul of my lifestyle to handle it.
That first day in 2015 when I walked out of the neurologist’s office with a prescription in hand was the day I started my resistance movement. I didn’t want to be classified as epileptic — as someone whose brain was so broken it couldn’t keep ahold of my body’s movements.
I’m lucky that my epilepsy is fairly well-controlled. My seizures can usually be prevented with medication, sleep and low stress.
I have days where I feel absolutely normal. Where there’s nothing else to feel. Then, I have days where I feel like jolts of electricity are pulsing through my arms and chest. There are mornings where I spill coffee and spend the rest of the day suppressing a quiet panic that maybe the rest of me will spill too. There are days when I feel like I’m floating inside my body, like a ghost detached from the world of the living. Sometimes it fades but sometimes it doesn’t.
I can usually sense when I’m about to seize and every time it happens my first thought is: not now. I can fight this. I tried to fight before I ended up in the hospital on December 23. I was getting ready for work and I thought if I closed my eyes and took a few deep breaths maybe the feeling would pass.
But it never works. Depending on how long the warning signs are sometimes my rational brain pushes through and says: don’t do this, lie down, be smart!
But, often there’s not enough time. It’s a fight or flight response and I always choose fight. Every time I try to resist I hurt myself and I hurt the people around me who have to watch me make the same mistake over and over.
The voice telling me to fight is also telling me I shouldn’t be seizing. I’ve convinced myself that because I am not the worst-case scenario I don’t really have a problem. I’ve equated lying down to giving in and shamed myself for getting to this point of no return. But, every time I hurt myself trying to fight back, I prove there’s a part of me that’s still not fully comfortable with who I am.
Maybe I can take steps to prevent the seizure. I’m working on accepting that in the moment, I cannot stop my body.
There will always be other people who have it worse. But I have to realize — everyone in a similar situation as me has to realize — that those other people do not matter. It can be easy to fall into the trap of wanting to classify ourselves on a scale-of-one-to-ten severity chart. But that does not encompass the full picture — we all have our own obstacles and it’s okay to be a little selfish for our own well-being.
I grew up believing: Life is tough, no one’s gonna help you but yourself. This internal dialogue caused me to pace around Indigo debating whether I should buy Brian Orend’s Seizure the Day: Learning to Live a Happy Life With Illness, because I thought: Do I have a serious enough illness to justify this self-help book? It’s also why it took me three years before I registered with the Centre for Accessibility.
It took me so long to learn it’s okay to ask for help. It’s okay to carve a space for yourself instead of trying to squeeze into the pre-existing one around you. Our (dis)orders and (dis)abilities don’t make us any less independent, intelligent or capable. But often, as I have found, the hardest person to convince that that’s true is yourself.