What the seizure stole, part two

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Remember back in November, when I reflected on this: What the seizure stole (part 1)? Well, there’s an update.
I saw a new neurologist who I really like. We discussed the reasons why I was uncomfortable with my treatment (because I hadn’t had a seizure in so very long; because the medication was causing issues with blood pressure and hindering my weight loss efforts; because there were more complications that I could potentially have eventually). We talked about my current life stage (adult child who didn’t need my daily, unwavering, nonstop care; ability to work from home permanently, if need be, but in the short-term for Covid for sure; not needing to drive anywhere in the foreseeable future).

My question to him was that I needed to know whether I haven’t had another seizure this whole time because I just had an unfortunate confluence of events that resulted in a singular seizure all those years ago (but not seizures in general), or whether I haven’t had another seizure because my meds were doing what they were supposed to.

He gave me a question in return: Was I willing to have another seizure in order to prove whether or not I needed the meds?

I was.

And, I did. Last weekend. Boooooo.

Sunday night, just after my gentleman associate went to bed, I put the water on to boil, sat down, and then opened my eyes to the paramedic crouched down in front of me. I got to ride to the hospital in an ambulance – which isn’t as fun as you might think. I got to have a blood test drawn from the middle of my forearm (which I also do not recommend) and a CT scan in the middle of the night. I watched my respiration rate cause alerts on the monitor as I did 4-count meditative breathing for hours. I took foggy inventory of the things that hurt – bruises on the top of both sides of my tongue, and corresponding cuts on the underside. Rib pain if I inhaled too deeply, calf pain if I flexed too flex-y or pointed too point-y. And time to think about the things I couldn’t remember.

A seizure causes a chemical storm and an electrical storm in your brain, and short circuits you to get it to stop. It’s not pleasant. I do not recommend. But, I agreed that I was willing to have this seizure to prove whether or not I needed my meds. And now, I have an answer to my question. It certainly isn’t the one I would have preferred to get, but an answer is an answer, and you play the hand you’re dealt.

This time, though, I feel more broken than the last time. I struggled today to edit an image today at work for an hour (something that should have taken me 10 minutes) before I just reached out to someone for help. Shouldering in maybe isn’t a good plan right now. I stare at my screen trying to form letters into words, and the words don’t come. It’s terrifying for a wordnerd to feel lost in her wheelhouse. And still, there’s nothing to point at to say “this is why. This is the fault in your wiring.” My mom is trying to tie it back to a concussion 35+ years ago or the meningitis 43+ years ago. That’s not why. There is no reason, It’s not a chemical imbalance or a lesion or a damaged spot of grey matter. It just is. And that’s the hand I’m dealt. It’s the hand that 80% of epileptics are dealt. And it’s sucky.

It’s sucky because I spent the whole of the Quarantine2020 into WorkAtHome2021 trying to improve myself – drinking more water and taking more steps and doing more strength challenges and eating more green vegetables, and it feels like it was for nothing if the whole effort can be undone just like that.


For the next few days, I continue to build the therapeutic level of my meds back into my system. And then, we figure out what the path forward looks like. But right now, I’mma feel a little sorry for myself.

Extra Credit:

Epilepsy Canada
Epilepsy Foundation

3 thoughts on “What the seizure stole, part two

    1. It wasn’t, but I’ll have to reread The Wasteland and maybe some Upanishads this weekend for good measure. Thanks for the idea, Praveen!


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