Yesterday, I published a piece on this blog which was very significant to me personally. “I’m Reclaiming My Epilepsy,” I said, expressing a desire to inhabit the identity of my experience with epilepsy throughout my childhood.
I shared some of the particular challenges of this experience, including how my epilepsy was always present, yet also, held primarily in secret and out of view. There is much more I can share about all of this, of course, and I hope to do that in conversation. (This is also an invitation to ask me more about this experience. I am so grateful that I’m having occasions to talk about this.)
Truly, so grateful.
Along with that, I’d like you to know this:
In all of my 36 years, I have never talked about this in any public forum until yesterday. Thank you for reading. Likewise, and probably more significant, I’ve never talked about this so broadly. Yesterday, in the span of 24 hours, many people who have known me, including people who have known me well, heard this for the first time.
As I shared in the piece, this experience hasn’t really been a secret during my adult years. It occasionally comes up naturally in conversation, and it’s always meaningful to me when it does. But beyond those smaller moments, I’ve never had the occasion to share so broadly, not like I did yesterday. Now, many more people know about this unique experience I had, and they know me a little more deeply too.
I am grateful for this.
Yesterday, I spent the day seeing people see me. As you can imagine, given the particularities of the story I told, that was remarkably significant. People showed me interest, gratitude, curiosity, celebration, and above all, compassion and embrace. I was moved by it all. This is what I expected; in part, the choice to share was a joyful act of trusting the loving relationships I’ve entered over time. But this was still received so profoundly.
People entered my story with me, and then, another wonderful thing happened. Several people told me some of their stories too — entirely different experiences unique to their lives, yet resonant with the commonality of being difficult to voice. I was moved by these stories and honored by the opportunity to hold a piece of them. Vulnerability often opens space for more vulnerability, and vulnerability often leads to meaningful connections.
And I’m realizing that connections change the stories, or at least how they are held and how they are felt.
I’ve been pondering this quite a bit, in fact. I now have an expanding community around knowledge of this experience. Likewise, I’ve invited people to see this identity as I seek to reclaim it. I’ve never had this before, but now, I will never not have it. That changes things.
For all my growing up years, I feared, what will people think about me if they know I have epilepsy? This thing… that honestly, at the time, I didn’t even fully understand.
Later, I came to understand more fully what epilepsy was and how it affected me, and much of the shame faded. Still, though, when I pondered people knowing my story, I probably continued to frame it as an occasion where people would likely associate epilepsy with me.
In one sense, I suppose that is true. But after receiving what I experienced yesterday, I recognize that this is even more true: People are now going to associate me with epilepsy. That is, they are going to interpret their own connection to epilepsy – knowing what it is, how it functions, or even just hearing the word itself – through the lens of loving me. People now have a connection to epilepsy because they have a connection to me. I felt this in relationship yesterday, and this was a piece I didn’t quite anticipate.
So all of this is immensely healing and clarifying, filled with connection and gratitude. That’s what this feels like.