January 5, 2015

We Are Greater Than The Sum of Our Diagnoses

E. is a heavy label to live with. The culture surrounding it is one of silence and misdirection. It suggests that there is something about us of which we should feel ashamed. The effect of this can be a kind of paralysis: paralysis of speech, of thought, of action.

When I read about other disabled persons, I see a wide variety of writing, social action and speech. Books about the experiences of being disabled are more than just narratives of whether or not to have brain surgery, what drugs to take for my condition or how my doctor’s visit went last month. These others are not content to remain silent and medicalized. They want to live independent lives, think complicated thoughts, write and act in ways that allow them to be greater than the sum of their diagnosis.

When I first learned my diagnosis, I was still a child. I learned the words, the names of the tests, the names of all the drugs I had to take every day. I can recall doing projects in school about E. that included sections of my EEG printouts and answering questions from kids and teachers alike. This was a regular feature of my elementary school life and it continued into high school until an English teacher of mine suggested that since I knew so much about the subject, I should write about it. Confronted with this suggestion, I never said another word in class about E..

I recall working very hard to go to college and got an offer from one in Los Angeles. My mother turned it down flatly. She couldn’t imagine educating me beyond high school: “Spending good money on that sort of thing would be just throwing it away, wouldn’t it?” The worst part of it all was that I accepted this evaluation of myself.

Years later, I made my first attempt at college. I failed. I walked away from it and somehow this seemed to confirm my mother’s original comments. In my mid-40’s I tried again, at the same school. This time I was wildly successful. The experience changed me. I began to analyze the social and cultural structures that come along with a diagnosis of epilepsy. I am finding my voice and writing what we all know: doctors and drug-makers influence information about this condition more than the individuals who experience it.

I think changes are needed in the ways we experience E. We certainly have need of both the doctors and the drug-makers. But we have a greater need of each other. We need to talk to one another about our social experiences and how we worked through the difficulties we encounter. We need to demand a wider variety of articles and books on the subject---something more stimulating and interesting than the standard fare explaining what epilepsy is or the predictable I-triumphed-over-epilepsy tales.

We also need to have a little mercy on ourselves and recognize that we are just learning to speak to each other about our condition. Unlike the deaf, the blind or others who have enjoyed the luxury of being open about their conditions for decades, people with epilepsy have been shut off from each other, their own families and from the larger society until very recently. Speaking up about E. is a good thing to practice now, as we learn to talk about it openly with each other.


Jacqui said...

Paula, I read it and OMGosh it is uncanny and so true. Thank you very much for using your abilities to say what we all know.

alexena said...

Your writing is really powerful. I was moved by what you said.

I know my son feels different from other kids who don't have epilepsy and I am concerned about how he feels. For awhile he was angry at me because I hadn't prevented it, giving me more power than I really have. Maybe, like you, he felt that it was me, his mother, pulling him out of the dreamless seizure sleep. He felt that I should have done something so that he didn't go there in the first place. I wish I could have.

My former husband used to tell stories of how his father was a Christian scientist and believed that it was just a matter of willpower to stop seizing. Children who had them were hit with the buckle end of a belt. Two out of three children in that family had that punishment. Ironically enough, it turns out that the punisher also had seizures in childhood.