I’m reclaiming my Epilepsy. This matters a great deal to me.
Those two words might come as a surprise, I realize. Most people have never heard me place words like ‘my’ and ‘epilepsy’ together. From time to time, I’ll bring it up naturally in conversation, but most people don’t know I had epilepsy as a child. More significantly though, beyond the mere knowledge of it, most remain unaware of how deeply this impacted and shaped my life. So, while it’s fair to say that this hasn’t quite been a secret during my adult years, it hasn’t been in full view either. It’s very meaningful for me to bring it into full view now.
The pairing of words like ‘my’ and ‘epilepsy’ may be new to many. But I’ll share that this pairing is somewhat new to me also. I don’t mean to imply a new recognition that I had epilepsy. I had Childhood Absence Epilepsy throughout the duration of my elementary school years, first spotted by a teacher and diagnosed in kindergarten, then fading around sixth grade. This, I’ve known for a long while. What is new is the recognition that I’ve never felt so much affection in bringing these words together. The placement of ‘my’ in front of ‘epilepsy’ is an embrace of that epilepsy, and most of all, it is an embrace of a large, formative piece of my own identity. With those deeper feelings, I choose this more than I ever have before.
The truth is, for most of my life, I couldn’t bring myself to say words like these aloud. Apart from an embracing word like ‘my,’ I especially couldn’t utter words like ‘seizure’ or ‘epilepsy’ (or hear anyone else utter them) without an enormous, visceral feeling of shame instantly flooding my body. This persisted well beyond the years of actually having epilepsy.
If you know anyone well with epilepsy, either a child or an adult, you may be aware that this is a condition with a lot of stigma attached. This may be a remaining vestige of the history of epilepsy, misunderstood for thousands of years with an array of negative associations placed beside it. We are often afraid of what we cannot understand. Even today, people with epilepsy sometimes internalize this. And of course, along with this history of stigma, there can be a certain lack of dignity in feeling that you cannot fully control your body. I know that all of this affected me.
Much more though, I felt this intense level of shame around my epilepsy, because for the entire duration of having it, and many of the years that followed, I kept this entirely a secret. From both peers and adults.
My epilepsy was always present and yet simultaneously out of view. If you’re wondering how this could be possible, Childhood Absence Epilepsy involves many seizures daily that are short in duration — the older language of the 1980s was ‘petit mal seizures’ — and these can easily be mistaken for simple daydreaming. I know from my medical records (I requested those much later as an adult) that my seizures sometimes lasted as long as 30 seconds, but I assume many of them were also shorter. Every day, this experience was present, but also, out of view. Except… for those occasions when I would have a seizure around other people while I was in the middle doing something else. In these moments, I felt deeply embarrassed. Yet, even then, people didn’t recognize these as seizures. They were brief moments of pause — somewhat unexpected, and potentially out of the ordinary, but I don’t think people often connected the dots.
I told a few peers about my epilepsy when I was a senior in high school. But I didn’t really begin to share this as a narrative of personal experience until I was in my mid-20s. At first, that was a remarkably challenging, new thing to do, but it felt very freeing.
This has since become fully talk-about-able. Like I said above, over the years that have followed, I’ve found myself bringing this up in conversation from time to time. I don’t feel the same shame in uttering these words.
But something has additionally shifted over these last few months. During that time, I’ve had a number of different occasions to talk about this experience at much greater depth, and this has been a profoundly meaningful experience for me. At one point last semester, I met a student who also grew up with childhood epilepsy, and she wanted to hear my story. I meet with students all the time, and my full range of life experience impacts those conversations, but I have never sat down with a student specifically from this place as an identity.
This felt wonderful.
So I just started sharing this narrative more broadly and at greater depth and with even more intention, including among some of my most beloved people who only knew a sliver of this story. And I realized, this is the first time I’ve ever had a community around this experience. This means so much to me. I’m going to keep talking about this and expanding that community.
It’s been a long time since I’ve had epilepsy as a condition, but in these days, I reclaim it as an identity. There is empowerment in that choice. There is a great deal of healing in that choice. I see this not as the beginning of making peace with my experience, but rather, the culmination of having done that for years.
And I want to keep talking about this, primarily because I want to be the person who experienced this. I want to give from this part of myself, even as I know that I am being received so beautifully as myself.
This Saturday, I’m going to do something I’ve never done before. I’m going to participate in the Summer Stroll at the Detroit Zoo, a fundraiser for the Epilepsy Foundation of Michigan. I’m on N.J. Phillip’s team (a pleasure!) and I’m really looking forward to being there. Unfortunately, I can’t stay the whole time because I had already planned another event, but I hope to raise at least $100. First and foremost, I want to support this important organization, but also… I want to get the t-shirt. I think it’s about time I wear all of this a bit more on my sleeve. 🙂 #Har. If you want to help me out with this, please let me know.
This last weekend, without even purposefully looking for it, I just happened to stumble across the notebook where I wrote out my epilepsy experience as a narrative for the first time. I was 25 when I wrote it, and it was a pleasure to read this from my younger self. When I reached the end, I was struck by three sentences in particular, because I think they are speaking wisely right into this chapter. The same thing I wrote toward the beginning of my sharing is precisely what I feel as I expand my sharing:
“I thought for most of my years that my healing needed to be from epilepsy. No, what my healing has required is a healing toward epilepsy. I need to be allowed to be the person I was.”
Yes, Renee. With joy, let’s do that.
As an addendum to this, I wrote a follow-up piece one day later, to share how wonderful it felt to share this story. Over the course of the next 24 hours, I had the gift of connecting with so many loved ones in profoundly meaningful ways. I’d like to send you in the direction of that post as well: What That Felt Like.