Privilege and Epilepsy
The other night, I had a dream about epilepsy. It was a simple dream; I had forgotten to take one of my daily doses of my medication. I don't recall specifics but for argument's sake we'll say it was my morning dose (which did happen to me June 2023 and I had a seizure later that day). Nothing of consequence happened in the dream - I didn't have a seizure. But there was a feeling in that dream, of dread and worry.
The one day that I did forget my morning dose, I didn't actually know it. There was no fear or dread that day, I simply woke up covered in dirt and gravel as the seizure came on while we were playing softball. There have been other days when I did realize I hadn't taken my dose, but I caught it early enough during the day that it was still far enough away from my next dose that I could take the pills and be alright. The first time this happened, I experienced panic, and quickly searched online how long ahead of my next dose I could take my pills.
But beyond that, I've never had any kind of panic, dread, or worry about missing a dose when I realized I missed it. The paranoia comes in when I constantly check my daily pill case to make sure I did take my first dose of the day.
And this is where I have to acknowledge my privilege when it comes to epilepsy. I'm a member of a discord with a group of others diagnosed with epilepsy, and they talk a lot about their constant seizures, sometimes multiple in one day, or surgeries to try to help with their condition, or all the side effects they experience.
Sure, I have some side effects from my medication. Mostly they come in the form of being tired more often and needing more sleep, and sometimes my mental state is affected. There have been times recently that I've experienced some interictal-related aphasia. But in general my "normal state of being" doesn't seem any different to me than it was before November 20191. My seizures are under control, with the last one coming because I was distracted and missed a dose of my medication.
But there are still so many things that I experience that aren't physical or directly related to seizures that many others with epilepsy experience. I imagine one of those things is a sense of pressure constantly building the longer I go without a seizure. Did you know that as I write this, I'm 528 days seizure-free? That's 1 year, and approximately 5 months.
There is a lingering fear, for the lack of a better word, in the back of my head that any day now I will have another seizure to break the streak. The longest streak I have had to date since being diagnosed was 794 days (just over 2 years). But it was broken by something as stupid as missing a dose of my meds. So yes, there is this pressure there to keep up with my medication, knowing that the next seizure is potentially around the corner.
The paradox with this is that I would also feel a sense of relief if that happened. Maybe it would last a few minutes, and then I would go back to being dejected about my seizure-free streak being broken. But there's that short window of time where the pressure is released, and I can stop living in fear of the next seizure.
It's a strange thought and feeling to have in parallel with the desire to NOT have a seizure.
If you want to read some more of what I've written about epilepsy, the best place is Medium. I recommend starting with Dealing With Epilepsy and then I Am 1 in 100.
Reply by email Share this post
Or if you prefer, find me on Mastodon.
If you want to know how normal I feel, I just realized while writing this that I passed the 5-year mark since my first seizure: November 9th, 2019.↩