A Story with a Difference
A short story by Reisa Gula, a successful artist, calligrapher and mother of two who volunteers at Epilepsy Ontario.
This is a story about a phenomenon called epilepsy. I have been living with this phenomenon for more years than I would like to think about: forty one to be exact. It is a nasty disorder - one that can cause much aggravation and heartache. And one that is difficult, if not impossible to control. Medications help, but they do not eradicate the problem.
There is a method of control which I have discovered. It is switching to the side of the brain which is not involved in the seizure. In the case of a left temporal absence seizure, which is what I have, this control is brought about by drawing, which promotes a switch to the right hemisphere of the brain. It doesn't always work and few people know about it. I discovered it while reading Betty Edwards' book Drawing on the Right Side of the Brain. It just seemed logical and it does work for me to some degree.
Much has been written about seizures from a medical point of view. My own personal observation of an absence seizure is as follows. There is an aura or feeling which, for me, is strange but euphoric. It is the feeling preceding the actual seizure. I feel as though I can reach the stars. Everything takes on a new dimension, a new quality. It feels as though I can conquer the world. It is as if I know in my inner mind some deep, dark secret. Unfortunately, this feeling is so mysterious that sometimes I find myself wanting to have an aura. It is very inconvenient and interferes with my life. But I must say that, as strange as it sounds, the aura or feeling is fun! It's uncanny. I can describe it no other way.
The seizure itself is like going blank for a short duration of time. My audio memory doesn't work. I can't understand spoken words but my visual memory is still somewhat intact. A stop sign is still a stop sign because of its shape and colour but the word stop is impossible for me to decipher.
I have visited many prominent physicians. One, my analyst, told me to call myself an epileptic. I took exception to this and said so. I call those with epilepsy persons with epilepsy. The word epileptic used as an noun is ugly and unpalatable. This very prominent psychiatrist should have been ashamed of himself. He's gone now and I doubt he ever changed his mind about his terminology. I think about him often and wish he had been more gentle.
Terminology is important in that it adds to the stigma surrounding this disorder. We with epilepsy know all about stigma. It hurts to be different but we have to face the fact that we are different. To have others add to this difference is cruel.
Society is changing and people are becoming more understanding. Someday, maybe even terminology will no longer be an issue.
