What the Seizure Stole

A hand holding a book, worn and broken with age, titled "Shared Stories"
Photo by Mark Neal on Pexels.com

Some of you know that I have epilepsy. I got this diagnosis because 18 years ago, I had a seizure, clear out of the blue. After assuring the EMTs that I wasn’t on cocaine or aspartame (srsly!) I went to the hospital, I did some testing, and the neurologist that I saw said that none of those tests provided any reason why I would have had a seizure. No spot on my brain where someone could point and say, “There’s your problem, lady!” I mean, it’s good to know what it’s not – not cancer, not a brain lesion, not a heart irregularity, but there was nothing to say what is *was*. And without that, I feel… bereft.

If it wasn’t witnessed by my gentleman associate, and wasn’t followed by crazy muscle pain everywhere (there’s a reason it’s called a seizure) and accompanying bites on both sides of my tongue, there wasn’t really evidence that it even happened.

He didn’t want to medicate me for something that may have just been an unfortunate confluence of things – maybe a bit of dehydration combined with an allergy and some lack of sleep… I did have a toddler after all. So, I lost my driver’s license for a year. Then, almost a year to the day of the first, I had a second seizure. And with that, I started a course of medication that (mostly) hasn’t changed in 17 years. I also still have a bunch of tests that say nothing about why either seizure happened. No effect from several frequencies of strobe lights or sleep deprivation, no unwelcome spot tucked into the folds of this lobe or that. Not anything. Nothing. And yet, two pills every day, henceforth and into perpetuity.

A year ago, as I was in the health clinic renewing the prescription for these pills, I asked my RNP if she would refer me to a local neurologist, since I haven’t seen one in almost 2 decades, and maybe we can do some testing to see if this treatment path is still the correct one. To say nothing of the fact that the supply chain for these pills is… insecure. I’ve had to change from one delivery method (one a day!) to another (slow release!) to another (tablet!) with the delays (and stress) that causes when I have to ration my meds or cold turkey off of them for a few days until the health clinic and the pharmacist figure it out.

She looked at me incredulously.

But this course was working! Why would I want to upset the apple cart when I already had something that worked??

Well, the anti-seizure meds cause a cascade that means higher blood pressure (in the short term) and liver disease (in the long run), so maybe there’s something better than this 20 year old plan. She grudgingly got me an appointment with a neurology center.

Then COVID-19 knocked plans off by a few months, but last week, I had both an MRI and a CT scan. And in October I go back to the neurologist to see if there’s anything more in the results than there was last time. I feel the need to gird myself against the disappointment of a new doc on this side of the province shrugging his shoulders at me and having no new information about why the seizures lurk. No news isn’t good news.

So that’s the background.

As I’ve been living with this, I’ve realized that I have holes in my memory. During the original diagnosis process, they said that I might have some memory loss. And I did. I couldn’t remember the hours right before the two seizures. Eventually some of that came back, but other things remain black holes. I mean, everyone has things that they just cast aside instead of committing to the long term memory archive. Everyone edits things that they think matter, and things that just become fluff in their past. Sometimes, a name crosses my Facebook or Instagram feed; a name that I feel like I should know because the person is friends with my friends. It’s conceivable that I’m also their friend. But I got nuthin’. Sometimes, when this happens, I discretely ask a mutual friend (who knows about my seizure issues) to help me find an anecdote that I can use to back fill my memory. Sometimes it works. Sometimes notsomuch.

One such notsomuch was around someone who was doing a courtesy for me. I dated a boy very briefly in high school. We’ll call him Tom*. Tom died of a massive heart attack a few years ago. I hadn’t spoken to him since high school, and I no longer live in the same city as I grew up, so I wouldn’t get the same influx of news as I would if I regularly scanned the obits in the Hamilton Spectator. But there was another boy… well, man, now… who thought I should know. He worked with a friend of mine, we’ll call her Samantha*.

–*not actually their names.–

This fellow knew that I dated Tom, and knew that I was friends with Samantha, and knew that she could get me the message. I have no recollection of Samantha’s coworker. None at all. This mystery man knew two connections – Tom and Samantha, and knew me enough to sew it all together, and I couldn’t place him at all in the fuzzy puzzle of my past. Even with my friend’s prompts to give me some anecdotes to help me jog my memory, I came up emptyhanded. I felt badly about that. I appreciate that he got Samantha to relay that message to me, even if he remains a stranger.

This past week, another boy with whom I was friends 30+ years ago floated to the top of my dreaming mind. Way back, this boy, we’ll call him Joe*, got into a pretty serious car accident. His date that night died in the crash, he was seriously hurt. I felt compelled to visit him in the hospital. One of his eyes was bright red where it should have been white. He had stiches and angry purple bruises over his face. He also had ferocious survivor guilt, but I was only maybe 15, he was a few years older, and I didn’t know what to do with that. So I sat with him, and he held my hand. He brought my fingers up to his lips and kissed them, grateful that someone came to visit. Others, perhaps, to stunned that the girl he was with had died, didn’t visit. I don’t know. I don’t remember if I ever knew. I remember the green of the walls of his room, and the feeling of the stitches and the scruff on his unshaven face as he held my palm to his cheek. And he spoke of his heartbreak about the family who didn’t have their daughter returned to them as he had promised when he picked her up. They didn’t blame him, but he blamed himself enough for everyone. As time passed, we spoke a little less often, and eventually Joe became someone that I used to know. Then, somehow, he wasn’t even that. This week, his name floated back into my consciousness. I don’t know what stirred that up from wherever it was buried. But I find myself unsettled by it. 

–*not actually his name, either.

It took me 3 days to remember his last name. And I’m not fully convinced I’m remembering it correctly.  I feel anxious that there’s a non-zero possibility that I could have received a Facebook or Insta request and couldn’t find anything when I reached back into that empty space where those names should be safely stored. And having grasped at nothing to tether me to a memory, I deleted the request.

Now, though, I feel anxious that I may have rebuffed someone’s attempt to reconnect with me. I mean, these are strange days. COVID has us all circling the wagons around our social bubbles, but also reaching out to reconnect with people outside that bubble. I was supposed to go spend the weekend with an elementary school friend with whom I recently (like, pre-COVID) reconnected. Friends have called just to check in. It’s been good for strengthening social connections.

I know it’s natural for relationships to grow and then fade. I’m OK with that. There are lots of people I had semester-long friendships with as we sat together in a lecture hall, or for as long as we lived in the same dorm, or worked in the same place, or had kids on the same hockey team. That’s the nature of the thing. If you don’t exercise the relationship, it atrophies. They wax, they wane. It happens. Others last forever, and you just forget some of the goofy shenanigans you got into together until someone reminds you.

I just feel like I maybe didn’t – or don’t –  get to decide how to honour friendships that I used to care about because I don’t remember that they were even a thing. It’s not having the choice that’s making me self-conscious and anxious. I can even unpackage this to understand that my state of agitation is because I’m anxious about what the neurologist is going to say to me next month. The tests are done. The benchmark is established. I just wait for the report to be presented to me. For now, it’s like Schrödinger’s Brain index. Maybe things are there, and maybe they’re not.

And that’s the part that feels uncomfortable. 

3 thoughts on “What the Seizure Stole

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