My boss is at it again. (She’s not the main focus of this post for once, nor does she deserve to be at this hour, but she got me going.) I have a medical accommodation at work to restrict my schedule to four days. My hours are not reduced; they’re just put on four days. This was approved by human resources with no end date. However, she finds this most inconvenient and periodically tells me I need to see my doctor and have my restriction lifted. I’m fairly sure this goes against HR rules but I’m saving that for when I need it. I think she believes that the doctor imposed it on me, whereas the truth is that I asked for it because I was getting very stressed out, and stress is a trigger for seizures. I’m not telling her I initiated it. Let her believe what she wants.
So she complains again the other day about how I need to work more and talk to my doctor about this. I shouldn’t have taken the bait and engaged in that conversation but I said I don’t like him and don’t want to see him any time soon (which is true). (I also said this to piss her off.) She replies that that’s not an option, medical accommodations do not last forever, that’s not how they work.
I felt the blood in my aorta starting to boil because that’s exactly how they work. If you have a chronic condition, then your accommodation is chronic. It’s not like breaking your foot and getting light duty for X number of months and then it runs out. My accommodation is entirely reasonable, and I perform not only all my job functions, but some other people’s as well, because I, being an asshole, cover asses that don’t even deserve to be covered but ought to be exposed in all their hideous glory so that the truth of their laziness and incompetence may out.
Don’t get me wrong, I’m not worried about my job, I’m in no danger, it’s just the discomfort of being put on the spot about my condition. I am a master of deflection and playing things off. I just laugh it off as being airheaded, preoccupied, or ill. I’m too ashamed to let people know what it’s really like. For years, when I didn’t know I was having seizures, I lied and said I was having migraines or was nauseated and dizzy. I thought they were panic attacks and that they weren’t “legitimate” or “serious” enough to merit leaving work or school, even though I thought I was going to black out and collapse.
While my medication has controlled them, I still live in fear because I lived around them in that fear for so long. And with stress, fatigue, and sensory overload, there is always the chance of a breakthrough seizure. I haven’t had a bad one in three years since I was diagnosed and started medication in 2018, and making life more convenient for my boss is not a good enough reason to have one again.
Yet even if I don’t have actual seizures, I still have side effects from the drugs. Anti-seizure drugs work by controlling excessive electrical activity in the brain. My seizures are localized, meaning they begin and stay in one part of the brain. (Mine are somewhere in the temporal lobe.) The type of seizures most people think of, i.e. ones in which consciousness is lost, there is stiffening and shaking, etc., are called generalized seizures (tonic-clonics, formerly known as grand mals). They start in one part of the brain and then spread (generalize) to the entire brain. The drugs don’t slow down activity in only one area of the brain, but work on the whole brain. Therefore, all functions slow down. Meaning you are dum dum-dum dum DUUUUM.
A common side effect of the drug I take, lamotrigine (brand name Lamictal), is memory loss. I can’t remember one minute to the next, what you asked me to do, what I just read. I never use the stove when I’m home alone. Yesterday, in the grocery store, a grocery store I’ve been to hundreds of times, I got lost. My fiance and I were shopping and a student’s parent called him. He stopped to take the call and I went ahead to look for cleaning supplies. When he finished, he called me to tell me he was in the bakery. I made my way over to where I thought it was and there was… no bakery. There was bread, but that’s about it. I stood there in the corner with rising panic and embarrassment. After a minute of mentally going through the store I remembered where it was, but I was so ashamed.
It’s like being a robot or on autopilot. Your brain has your body perform movements while your mind is off in la-la land. This is how I do things like put the cereal in the fridge and the milk on top. I make the right motions with my hands to put things away, but I am too spaced out to notice the specifics until hours later. So at the store, my brain thought we were at a different one.
And people act so surprised when I tell them I don’t drive. They ought to thank me.
Right now, the shame surrounding my epilepsy at work and in public still needs to be worked out. I feel like an imposter because I don’t have the well-known type of epilepsy, and when people don’t see you seizing, they assume you’re fine. Meanwhile you’re screaming inside in terror that they’re going to send you to The Place You Had a Seizure One Time. I know my boss and my manager want to discuss my schedule soon and I’m just scrambling to figure out how to save my skin without telling the embarrassing truth that I’m just plain scared. That’s it. That’s all there is to it. It’s pathetic.
Unrelated issue–the drug also gives me trouble with writing. There aren’t any words. People always give the advice to “just write” but if there’re no words, what do you write? It’s like fishing in a clear, empty pond. I’ve stopped lamenting. If what I produce is spare and has a limited vocabulary, then so be it. I’m not crying about it anymore. If I can convey just enough to conjure up details in your mind that I could not personally supply, then that’s not nothing. If I can’t be what I wish I could be in the moments in which I permit dreaming, then that’s alright, and no reason to hate myself about it. Hating myself for it got me nowhere; no, worse than nowhere, because I wasted time, produced nothing, and caused myself misery.
It’s stupid to think of it as giving up on a dream. Years ago, I wanted to be an academic, but that went out the window, and you know what? I wasn’t in love with it anymore anyway. So why cling to a self-image I don’t even need to hang onto? Likewise, why aspire to be something that I can’t be? If these are the tools I have been given, then that’s what I must work with. I enjoy writing personal essays and stories more than I enjoyed academia. I realize now that what I enjoyed was the feeling of accomplishment, of being “smart,” and, most most most importantly, being praised and petted for being so smart. Well, bye-bye smart. And that’s okay if it means I’m less of an arrogant asshole than I used to be.
Well that’s about all I got. Sorry this is so long. I hope you scrolled fast.