Last week I had a very public seizure. I was very fortunate in that someone caught me on the fall down so while I did get a small injury, it’s not nearly as bad as it could have been. I’m currently rocking a black eye and a green and purple cheek but other than that, I’m okay. Not only did someone catch me, I had a couple of individuals help me while waiting for the paramedics. The episode apparently went as well as could have been imagined, and that is all thanks to the amazing people who were there. I am very appreciative of that support.
As a result as well, I have had a number of questions posed to me related to that event and to the condition overall. I thought I would try to answer a few of them here today. As always, none of this should be taken as actual medical advice, and please keep in mind that this does not apply to every person who experiences seizures. If anyone has any additional questions they want to send me, I am always open to them.
- Do I get seizures while running?
Yes. Yes seizures of that magnitude happen while running. My options are to a) stop running; b) get up and keep running; or c) be involuntarily pulled out of a race. This is why my knees are so scarred.
- Am I able to feel a seizure before it starts?
No. I am not able to feel them when they are about to happen. My awareness of the episode starts once it is over and I am waking up again. This is why I can sometimes be flippant about the condition, because my ability to react is once the seizure is over.
- Am I afraid of having seizures?
Yes. Of course. [Will that stop me from running? No.]
- Do I have triggers?
No, or at least, none that have ever been definitively identified as triggers.
- Why do I apologize after having a seizure?
Because I am embarrassed about losing control of myself. Because I am embarrassed about having been so vulnerable and exposed. Because I am embarrassed that someone potentially had to “take care of me”. Because I might have said something that is inappropriate.
- Has anyone ever made me feel bad for having a seizure or being epileptic?
Yes. This is not coming from a place that I have made up. There are people in the world who have expressed my medical condition as a burden to them.
- What is the best way that someone witnessing me experience a seizure (during the seizure) can help me?
Sit with me. Make sure my head is not hitting anything if possible. Speak calmly to me and reassure me that I am not a burden. If I fell but it wasn’t witnessed, call an ambulance for sure because I might have hit my head.
- What is the best way that someone can help me when I am not having a seizure? For example, afterwards, or if we are discussing it.
Not tell me that it is a burden to them. Not tell me that I should be “grateful” that anyone is willing to be friends with me.
- Do I have any weird side effects from the seizure?
Yes. I can speak and communicate fairly quickly after the episode so it may seem like I have recovered. The other side of that is that I sometimes speak “without a filter” and may say something that is inappropriate or out of character. Sorry. That applies to texting and emails too. Sometimes online shopping.
- Would a seizure-dog help?
Maybe. In my circumstance, they can’t sense for me if I am going to have a seizure. I’ve heard that there are some that are trained just to move underneath the person, so that it’s less impact when the person falls, so that would be probably okay.
- What is your biggest fear/concern when it comes to seizures?
Having other people make the definition of me based on the condition rather than anything else about my personality (good and bad).
In the time since I have started speaking about epilepsy and seizures, there have been people who have told me that I should be grateful that anyone wants to be friends with me, that I should be grateful anyone thinks I’m pretty, that I should be grateful anyone is willing to hire me knowing I have this condition. I’ve been told that I shouldn’t speak about it. On the other side of that, I know people who have been 10,000% supportive, funny, encouraging, loving.
I’ve been epileptic for over twenty years. I manage it, I treat it with respect sometimes, I know that it is part of who I am. It will always be part of who I am. Even if I was to never have a seizure again, it would be part of who I am/was. The decisions I have made and the things I have done based on it will never change. I spent a long time being embarrassed and not acknowledging it.
My first thought after the seizure last week was that there was no way I could ever go back to the place it happened, because I assumed no one would ever want me there. That was me making a judgment without considering the environment I was getting to know. I WAS VERY, VERY WRONG. So this post is also a very huge thank-you to the people who have been supportive and welcoming.
Thank you.
Tremors of My World 