It has been about six years since I started writing this blog, so I thought I would make a post about that. Six years. I have been epileptic for about 24-ish years now. It took me 18 years to come to a place where I was comfortable acknowledging it and talking about it. So, I will talk more now.
I did not have a mentor or support group around me. I did not know anyone with seizures or epilepsy. The neurologists at the time seemed so negative and grim-reaper-like that it seemed like a bleak future. My friends predominantly abandoned me, the school system was not willing to accommodate me. I felt alone and ashamed of my condition. Even with everything I did after my diagnosis, I still was not willing to talk about being epileptic.
Now, after all that time, I realize that there is absolutely nothing that I should have ever been ashamed of regarding my epilepsy. Nothing. Not a single thing. It felt like it, which is why I didn’t discuss it for 18 years unless I absolutely had to. I did not register with the disability centres at universities, I did not request accommodations. I avoided any acknowledgement of being epileptic in all ways.
There were things I accomplished prior to six years ago, but let’s not go too far back. In the last six years, I have run five marathons, countless half-marathons and 10kms, attempted one ultramarathon, and one skyrunning event. I travelled internationally on four occasions for running events. I have been featured in a running magazine, and had the opportunities to speak at epilepsy awareness conferences or podcasts (and running ones). I completed an 18-month post-graduate education with an A+. I have lived in three provinces. I have been significantly injured and am working my way back from that through swimming and stretching. In my personal relationships, they have grown, evolved, or ended. I survived COVID. I learned a second language and now I am learning a third. I did that all with a diagnosis of epilepsy. I have absolutely nothing to be ashamed about.
It is so easy to fall into the pit of despair relating to the condition (or any condition). “Why me?” “It’s not fair.” “Things could be so much easier.” “What did I do to deserve this?” I have been there and cried because of some of the challenges. I have asked why I have a condition that (in my case) seems to have no cause, and no specific identification (“You have epilepsy but we don’t know why or what type… next patient!”). I have felt ashamed because there are things that I cannot do, or that I am taking a risk by doing so I avoid entirely, and I have felt like I am on the outside looking in. Overwhelmed with shame. Some days, it feels terrifying to get out of bed, to join the world, to do things. Get a coffee, go to the store, go for a run.
But I have no reason to be ashamed. There should be a complete absence of shame. There should be no shame. For all the days that feel bad, they are few and far between now. Now that I accept my epilepsy (and even realize that it has made me the person I am today, for better or worse), I know that I can be part of any environment with the absence of shame.
Also, could you just imagine the person I would be if I had never been challenged to show what I could do? Would I still run? Would I have all the education I have? Etc., etc., etc. Maybe I would even be more obedient and sweeter (albeit unlikely). It doesn’t really matter though because that is not the case.
I have epilepsy. I am not ashamed of it.