Things I Don’t Like to Talk About

Epilepsy is essentially an invisible chronic illness, or at least invisible as far as the vast majority of the people with whom I interact on a daily basis are concerned. Though it’s hard to deal with something so monumentally life-changing but also largely concealed from the public eye, hard to know when to disclose and when to keep quiet, hard to decide whether I want friends and acquaintances to know how challenging seizures render my life, the fact that this particular condition sometimes manifests in an extreme, almost violent, way makes it a little easier for me to feel like it warrants attention. My other invisible chronic illnesses? Not so simple.

The last few weeks have been a succession of I-don’t-think-I-can-make-it-through-a-single-more-hour days. I haven’t had anything on my plate that under normal circumstances I can’t reasonably handle. A few medical appointments and a stressful meeting, yes, and a looming conference presentation (that I successfully delivered on Monday), but otherwise a pretty standard slate of academic and social obligations. It’s a sharp spike in anxiety and depression—mental health issues I’ve coped with since I was a little kid—that’s made life feel, for lack of better words, kind of unbearable.

Though I’ve been meaning to write about this for a while now, inspired by a very special young woman’s courageous blog (C, I’m talking to you!), I’ve been too anxious and depressed to follow through. And embarrassed, I guess. I can’t do much to change the fact that I have epilepsy. I can’t do much to change other brain malfunctions/chemical imbalances, either, but no matter how many times doctors reassure me that it isn’t my fault, on some level I assume that if I changed something, did something better, got another degree, won another award, snapped out of it, I’d manage to shed this part of me and metamorphose from an artificially happy shell into a genuinely happy person. Even though there’s a significant history of depression in my family. Even though I carefully follow the treatment plan laid out by my psychologist and psychiatrist. Even though there’s a well-documented link between epilepsy, anxiety, and depression. Even though I don’t need excuses; mood and anxiety disorders are health conditions like any other, and I don’t apologize when I have the flu or break a bone, or for having epilepsy.

It’s a constant up and down. In this very moment, I feel pretty good. Earlier this week, attending sessions and waiting to present my own paper, the very last of a three-day academic gathering and scheduled in a panel with two senior professors whose work I greatly admire, not so much. Even when my health is relatively stable, conferences, opportunities for collaboration and learning that I suspect I should be enthusiastic to take advantage of, are nausea-inducing for me, and the situation on Monday was less than ideal: I was in the middle of a depressive episode and a medication change and, to top it all off, had a tonic clonic seizure an hour and a half prior to my talk.

This isn’t the first time my neurons have betrayed me in the lead-up to an important academic event. The morning of my last thesis progress meeting, I woke up on the floor of my carrel.  Same thing prior to a session I chaired at a conference in Toronto last month. I guess I’m lucky that in each case I’ve been able to proceed as planned, but I’ll be blunt: while trying to regain my composure, still in a postictal state and facing a task that’s unpleasant at the best of times, it’s hard not to feel sorry for myself. If I’m able to be stern—to remind the scared, groggy, compromised part of me that wants nothing more than to quit my program and disappear that I need to keep going—I can push aside the self-pity, at least temporarily. But this power to ignore that my body and brain have very real limits is inevitably short-lived. When I’m traversing a particularly bad period like this one, an overwhelming heaviness begins to suffocate me again as soon as I stop to breathe.

So what’s the point of this post? Partially, it’s to make visible the unseen. Mostly, it’s to let down my guard and acknowledge that the obnoxious trinity of epilepsy, depression, and anxiety really, really sucks. I don’t like to admit that keeping myself alive can be inordinately difficult. It’s easier to trudge along as cheerfully as I can manage than it is to risk scaring people away with negativity. Occasionally, though, as those close to me know all too well, I can’t help but let things fall apart a little. And maybe that’s OK, as long as I maintain the will to pick myself up and keep going, even when I can’t quite imagine how I’ll continue to put one foot in front of the other.

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5 thoughts on “Things I Don’t Like to Talk About

  1. This sounds very difficult. I know nothing of epilepsy but I do know about anxiety and depression. All three must be hard indeed. Hugs to you.

  2. i am moved beyond the ability to say much other than i am so grateful for your sharing of such emotions. i have been going through similar lately and am in awe of your ability to share. you are so strong. i am so happy you are my friend.

  3. In your beautiful writing you have so eloquently expressed what so many of us with epilepsy have to deal with on a regular basis.
    Thank you, Canadese.

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