Stories from Our Advocates

Impending doom. It happens every time I am about to experience a seizure. It comes from a place deep inside, and it is very hard to describe. It is not anxiety or worry but more like a feeling that something bad is about to happen.

I don’t feel anything during the seizure, at least not that I know of.

No tunnels or bright colors. No heavy weight on my chest or shortness of breath. Physically, I liken the sensation to when I was in nursing school. 

In anatomy class we had to dissect frogs, and as they were still alive, we first had to euthanize them. I still think about those frogs. Sometimes I feel as the frog must have felt when a cannula pierced the brain sending a shivering wave through their spine, thus ending its life as humanely as possible. There is also a sense of déjà vu that I have been in this place before even when I am not familiar with the actual surroundings. A ripple in time that reminds me that indeed I have been in this moment before, that each seizure is a mini-flashback that ultimately reminds me of what is happening in the present. Even this graphic imagery does not truly illustrate the way it all feels when I am having a seizure. Once I emerge from this void, I begin the task of reorienting myself to what I was doing and where I was doing it. I try to comprehend how much time has passed and whether others have witnessed the seizure. If I see what I call “saucer eyes,” it is a good indication that people have seen me, and I try to help them feel less afraid and worried. It is frightening to me to go through a seizure, but I am not fully aware, of course. However, many people do not know what to do, and I always try to make them as comfortable as possible after the fact. There are numerous myths about epilepsy, and I try to dispel as many as I can. Please do not put something in my mouth so I do not bite my tongue, for example.

Once I have made it through to the other side of the seizure, I assess the situation around me. If I am out in public, my immediate urge is to get back to business and begin “acting normal,” as if nothing ever happened. If I am home, I rest. It’s a pattern that is both familiar and surprising and defies true description. Each of us has our own unique way of interpreting the world. This is mine.