In essence, this blog is about doing what I have a hard time accomplishing in “real” life—disclosing. I have no choice but to tell people with whom I spend a significant amount of time that I have epilepsy, since my seizures are uncontrolled and one of my chief objectives as of late is avoiding unnecessary ER visits (understandably, most good, but uninformed citizens call 911 when they witness a tonic clonic seizure). That said, my general philosophy has been that there’s no reason to broadcast that I have a chronic illness. I think I’m justified in this; if I were diabetic I wouldn’t mention it in every second sentence. Indeed, the majority of the time, my epilepsy is irrelevant to those I meet in passing. There’s always the chance that strangers will find out due to circumstances beyond my control—I have had seizures in Loblaws, on the streetcar, in the library—but the exceptions do not warrant a huge shift in my keep-things-to-myself-as-much-as-possible rule. I have a MedicAlert bracelet and find someone to tell if I think I’m having an aura so that I can get to a safe(r) place or put myself in a safe(r) position; that, to me, is enough.

Yet I don’t always have auras, and I don’t always have the wherewithal to get myself out of harm’s way. Then there’s the difficult task of attempting to strike a balance between the mild embarrassment of stating that I have epilepsy and the massive humiliation of convulsing in front of anyone but my husband, who has seen it so many times that, for better or worse, it’s become pretty normal. And what about contexts that occupy a grey area?

The most problematic of those situations is the one I face when teaching. At the beginning of the academic year, I went over (i.e., obsessively considered) the pros and cons of disclosing to the first-year university class I instruct. I was advised by a professional to spend five minutes at the beginning of one of the first lectures distributing information and telling the students in clear, clinical terms what they should do if I were to seize during a lesson. I raised the question during a meeting of the amazing support group I attend at Epilepsy Toronto and was encouraged by other members to overcome my self-consciousness and take the leap. So, armed with 40 seizure first aid pamphlets, I headed to the second class of the semester confident that I was doing the right thing. In the end, though, I couldn’t work up the courage.

My decision/cowardice was, it seemed, without consequence: as the year progressed, I became more and more confident that MWF 12-1 was a safe, magical seizure-free fun time, until this past Friday when I had an absence seizure, coincidentally while going over medical-related vocabulary. My students probably didn’t put two and two together. I blanked for a few seconds, stuttered, put down the chalk, asked them to do an exercise from the textbook, and waited to regain my composure. I was, I must admit, impressed with my ability to regroup and continue with the lesson as normal. It could have been much, much worse.

But that’s the point: it could have been worse. Taking a few moments to explain important safety procedures would have been the responsible, reasonable procedure, one with the potential to prevent student (and instructor) trauma. While I’d like to say that I have learned from my mistake, that from now on I will be more forthright, I’m not sure that I’ll manage the needed attitude adjustment any time soon—as my husband can attest, I’m stubborn like that. I am nonetheless more open to the possibility, and that’s progress.


2 thoughts on “Disclosure

  1. Oh thank you for this entry. Yes, it’s true this is such a difficult question to answer. Whom do I tell and with whom is it unnecessary? Thank you for sharing all these inner questions that also arise in my mind. As a producer at CBC Radio who will be going back to work soon after surgery (I hope), I was asking myself whether I should release my attachment to documentary making. What if I am out in the field and I have a seizure? As a radio producer, I always travel alone. Is it time to think about jobs that are only within the building and definitely not live radio. I don’t know…………..

  2. its difficult to weigh up the problems of telling people. Personally I feel like its almost like saying ‘i am an epileptic’ can either be cathartic, a HUGE relief, or as comfortable as an alcaholic standing up at an AA meeting for the first time – or both. I think it is a very personal thing and there is no right or wrong way of coping with something like this. We all have to do it in our own time, in our own way.

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