I attended a support group meeting for epileptics last night. Skeptic at first..not sure anyone else could relate to the hallucinations, delusions and demons of my past or the ensuing hassles of neuro-health care that present troubles daily..just trying to get through a full turn of the clock.
I found myself in a group of 10 people, all about the same age and each one of them knew the classic, standard opening line of..”yesterday, I woke up on the floor in a room I did not recognize..turned out, it was my living room.”
They had all experienced some form of lost time, lots of lost memories, lost consciousness and the sticky part..undependable consciousness. It’s hard to find a job where the boss doesn’t care if you occasionally pass out with muscles jumping in spasm only to wake 30 seconds later confused, weak and unstable. I believe I can speak on behalf of everyone with this condition… we hate to make a scene and even more, we hate being the scene. We all share a little bit of shame upon waking. We are momentarily confused, sore and disoriented. (Someone compared the feeling to being hit with a tazer- gun). EVERYONE around us will consistently say: “It’s no big deal. Are you sure you are OK? Can I stop my life in some way to help you? ” (just how it sounds to me). We are grateful for that. However, secretly, none of us believes those reassuring words, because to us, no matter how small or brief the disruption of our mental functioning was..it’s a big deal. Our bodies and brains hurt, we wake up out of breath (most seizures stop your breathing reflex) we have no memory (at first) of what just happened or why. We all apologize all over ourselves, a hundred times, to anyone who was witness to our neural lapse. It’s embarrassing on a base level..speaking for myself, I always feel I have let someone down by getting knocked out of my senses. I can’t promise I will be conscious at all times. Unfortunately, being dependably conscious is a requirement of most jobs.
It is comforting to know there are so many others who know EXACTLY how it all feels. Most are managing a successful life despite these little lapses. To my surprise, 8 out of the 10 people in the group (including myself) live alone. None of us want to live alone and none of us want to impose our neuro-glitch on a room mate that isn’t a partner or relative. On the other hand..what good would it do for an epileptic to have a room mate with the same condition. Watching a friend seize can actually start a stress related seizure in the room mate. Catch-22.
We are not broken. We are not contagious. It seems we are more ‘afraid’ of our seizures than any watching…but in my years..I’ve discovered that EVERYONE has something they must personally ‘deal with’. Omission of the ‘ demons’ noted.
