Late night epilepsy rant with a little of my boss thrown in.

~ Hetty Eliot

I’ve written about my life with focal epilepsy here and there, I’m sure anyone who’s been on this blog before is tired of hearing about it.

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.

41 thoughts on “Late night epilepsy rant with a little of my boss thrown in.”

  1. I kind of get where you’re at Hetty. I’m an insulin dependant diabetic and I’ve been one since I was ten. Most of the time I’m ok, but when my blood sugars get low I get disorientated, forgetful and my body shuts down in stages. I don’t have a lot of episodes now, but that’s primarily because I got so embarrassed by the side effects, that I monitor myself constantly. I’m lucky though, in Australia diabetes is quite accepted and my bosses have always been very tolerant, but as you’ve stated sometimes people think you can just turn it off. ☹️

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    1. That must be hard to have to monitor yourself all the time, but I’m glad people understand. The symptoms of very low blood sugar are actually similar to the type of seizures I have. For a while I thought that that’s what was wrong with me. But you’re right, some people think you can just sort of get over it.

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    1. Exactly. And the best part is that this month at work is about learning about invisible disabilities 😆. Now I don’t go so far as to call myself disabled, I just want a little space to not, you know, have a seizure.

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  3. It’s not pathetic. Your discomfort makes a lot of sense, honestly.

    Your boss seems awfully short-sighted. I get the challenges of scheduling retail shifts when the holidays are coming up and hiring is difficult, but challenging an employee’s documented medical need/exemption in order to strong-arm them into working more shifts seems like a good way to encourage said employee (and an experienced employee no less) to quit right before holiday season. I mean, not to say you would or should quit (obviously, that’s up to you and any decision you make is totally valid), but like, it is not an implausible outcome just thinking logically from your boss’s perspective.

    Also, I appreciate your honest, open post about the effects of the anti-seizure drug, particularly on memory and writing. I’ve always enjoyed your writing on your blog, and I thought that your High School Ritual series was impressive. Having read this posts, I am even more impressed.

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    1. You’re right about her being short-sighted, especially since I’m involved heavily in hiring and training, and the learning curve for the programs and procedures I use is very high. My manager is new (and is actually her friend yet is the complete and total opposite of her, i.e. she’s a good human being) and she is still learning, so if I went bye-bye, they’d be in some doo-doo. Not that I’m personally so irreplaceable, but it really comes down to the knowledge I have accumulated and there is no one else to replace me in terms of having that knowledge. So why stress me out? I think also because my manager is new, while very competent (remember opposite of my boss), she sort of runs around crazily because she’s learning every day whereas I am used to juggling fifty things at once and transitioning from plans B through Z. I know she’ll be able to do so as well sooner rather than later. Anyways I’ll survive, I’ve survived this long (ten friggin years this month)… unfortunately. I probably should have been put out of my misery years ago.

      PS. thank you for your compliments about my story and my blog. I’m happy when people come along for the ride.

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      1. Exactly – all the more reason why her behavior/attitude does not make any sense.

        You may very well prefer the retail hell you already know and that is fine. But also, I feel like other retailers are also hiring now. Just putting it out there in case you feel stuck. If they are floundering without you, ultimately that is their problem; you don’t need to stay out of guilt.

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        1. Retail was never my goal in life, it’s a long story how it happened. I’m not quite ready to tell the whole sob story. Someday. But if I leave this company, I’m not looking back. I wouldn’t want to go somewhere else anyway–sort of a devil-you-know situation, and because I’ve been there so long, besides actual benefits there’re a lot of intangible benefits, like getting away with temper-tantrums and having a sort of territory staked out.

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  5. Damn straight it was too long. Now go be embarrassed. JK. Look, I stand in front of the linen closet wondering where the cheese went, in the fridge looking for coffee cups. I can remember the lyrics to songs from pre puberty youth in the 60s but not why I’m in the kitchen. And that was before clonidine, among other things, for blood pressure. And I’m not embarrassed. I only had a handful of clients, maybe 60, couldn’t tell you their names. Couldn’t remember my employees’ names. Oh yeah, nice to meet you, five minutes later whoever they were was out of my head. So drop the embarrassment. It’s like when you’re really young and you think everybody notices everything like one sock being inside out or a tiny zit in your eyebrow and you realize nobody gives a fuck about you, they’re all about themselves and their socks and zits. We live in a world of one that’s singularly unimportant to anyone else. No one knew you were lost in the bread. No one cared except your fiancé and only him because you might have wandered off with the car keys… all that social embarrassment shit is a waste of time. Just sayin’. Have fun.

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    1. But there ARE people who notice the eyebrow zit or inside out sock. I am one of them. And if there’s one, there’s got to be more of us. Is that just what’s commonly known as being creepy?

      It’s interesting how music remains stored in our brain even against the ravages of dementia. Just think how the young generation will remember only the lyrics to WAP when they have Alzheimers.

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  6. The terminology ‘accommodation ‘, I haven’t heard it. I guess we might call it health and safety. I am clueless.

    I say with your illness and all that life chucks your way. You are strong, brave, and courageous.

    You work, you live, you write. You forget stuff because of the Medication. I forget stuff and I am not on any medication.

    Your boss – man ! Ahhhhhhh

    You are strong and you handle it all so beautiful.

    You are a good writer.

    And it is always nice to get to know you more.

    I honestly think you are fabulous and living your life fully. There are healthy people doing less than you.

    Getting thick skinned, and staying thick skinned can be exhausting.

    You are doing great.

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    1. Hey Bella, thanks for your encouragement. Despite my complaints, I actually have made progress over the past couple years. I remember when I started this blog, I was so hopeless. But in various ways, I’ve gotten better. If people only knew what I was like at my worst, they’d see how much I’ve grown. Of course, there’s always stuff to work through. We didn’t accumulate it overnight so we won’t get through it overnight. I’m very grateful for all the positive comments I have received from you and others who have stuck around. I believe now what I never believed before, which is to get back in the saddle every time I fall off. Thanks again.

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  8. I retired from a gynormous communications company that shall go unnamed (AT&T) 12 years ago and I still get pissed off when I think of the indignities, some small, some not so small, that people with disabilities often had to endure. But not all. The local manager can make all the difference, but I’m sorry you don’t have one of the good ones.
    I think your writing is very clear and evocative and cuts through the BS in a way that is kind of rare. I don’t know how hard you have to work at it, but it seems worth it.
    And I realize it’s easy for me to say, but I suspect you’ll keep finding ways to cope with the work situation. Good luck.

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    1. Thanks so much Roy. I’ve become quite a survivor in that place and I’m still standing somehow, so I’ll get through it. These corporations are terrible. Thank you for your encouraging words. I do have to work pretty hard to write posts believe it or not. This one I banged out rather quick because I was in a mood, but most times it takes me a very long time.

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  9. I relate to your experience so much. Used to be smart, accepting long term limitations, etc. You might want HR to be present at the mtg to discuss your schedule & give HR heads up yourself. Have you documented her comments – harrassment? Take the schedule you work now w/breakdown of how you do get all your work done. ??? Just some ideas. Get prepared & don’t let the meeting happen TO you, but with you. They’re probably talking about it together. Maybe start by asking boss what her opposition is to it, how has this imposed difficulties on her? Have your materials with to refute. Ugh. Hard enough to work without someone breathing down your neck, nagging.

    Love your writing!♡

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    1. Hey Sara, thanks for reading and commenting. Sad thing is, we don’t actually have an in-store HR presence. I’m probably the closest thing to that lol. I deal with my boss on a close, daily basis and she knows very well how much I do (and that’s only the half she’s aware of). She just likes to yell out of her ass at people when she’s mad about something unrelated. She won’t have thought about you in weeks, but if you walk by her on the way to the bathroom and she’s in a bad mood, she’ll think of something to yell at you about. It’s hard to document how/what exactly I do because in retail, every day is by the seat of your pants. But I should keep track of the comments she makes. I know I wouldn’t be the first one, that’s for sure.

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  10. Bosses, society and their unfair judgments of how we should be living our life, with total disregard for the journeys we are living, the conditions we are living with – it truly does take a lot of added resilience to stand our ground and stay our course. Wishing you lots of ease and joy through it all!

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    1. Thanks so much, Pragalbha. Despite my troubles, I really do have more resilience now than when I first started. I’ve learned too to have more understanding for the issues other people are going through. Thanks for your good wishes.

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  11. Catxman here again. I have a little advice for you: pure more fast-paced walking into your life. Especially when the weather is fine enough to accommodate it. Walking gets the brain juices going in a positive way — and then you can think more clearly as well. It’s win-win.

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    1. Ah, there you are, Mr. Catman! I was afraid you died. I actually used to be a big walker back in the day until I had some episodes while walking, then I got afraid to walk by myself. I didn’t realize until much later that they happened when I’d walk past a slatted fence when the sun was shining through it (flashing light + epilepsy = fun). Now I go to trails with someone as often as I can. Thanks for the tip.

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