February 8, 2008

Humiliation: Some Field Notes from the Edge

I have been to see a new doctor, an epileptologist, and as is predictable he wants me to have an EEG. I made the appointment after delaying the decision whether or not to have the damn thing done, but feel still unresolved about the issue.
What I have determined about my feelings over whether or not to take the EEG is that I feel "creepy" about it. Why creepy and what does it mean?
Creepy because it offers to inject a kind of destabilization without offering any benefits: I have been diagnosed as a TLE, left focus. That diagnosis has been with me 52 years. This set of test results might be different (because of interpretation) from those performed years ago, resulting in either a different diagnosis, or worse, no diagnosis. This will not change my condition or make the epilepsy disappear, but it could confuse things among the people around me and make me look like some sort of lying malingerer, a kind of social cheat.
Digging deeper into the meaning "creepy" holds for me, I discovered the word itself (with its deeper implications) made me angry and brought me to tears of both fear and frustration. This revealed my feelings about the testing situation as a kind of freak show, a tortuous command performance where people will sit around and observe whether or not they can induce the ultimate show, in the form of a convulsion from me. I resent this deeply, feel terribly isolated because of it and am disinclined towards such performance. I will do everything I can to refuse having a convulsion. Will this spoil the test? Don't know, but it should be exhausting because they will do everything they can to bring me to have a convulsion or some episode they can record.
I am planning to go forward with the test because it will please my family, and my doctor; a direct fulfillment of Parsons sick role obligations. I have tried to adopt the idea that I am 'more curious about the outcome of the test than I am fearful of it', but in this most personal sense it is not true. I am afraid of being displayed like this and impersonally exposed a freak, of having my most sensitive buttons pushed for the satisfaction of others. It feels usury.
Then there is the political fallout, the "confusion". I was referring to. When I was a kid and went awhile without having a convulsion, my mother would be so pleased. If she were pleased, I was pleased. Restrictions eased, and I felt more comfortable in my own skin, more like a whole person.
     She was always counting time in between seizures, as if she was hoping it would disappear with my childhood. I grew to think that people close to me also counted the time between events. And, there was support for my assumption because after each one, the proximity to the last one is mentioned.
Persons with E. cannot help but notice the impact a convulsive episode has on those around us and it does seem logical to mark the intervals between episodes, in the same way one marks the time between contractions for a pregnant woman about to deliver.
Still, there is always the hope that those around us will just let it go, forget to mention it. I know I can recall the “last time” and the intervals in between. No one has to mention it to me. It always feels like a kind of indictment, whenever they do.


Diane J Standiford said...

Sometimes it seems that others perceptions of our illness is worse than the disease! You are YOU. No matter what an test ever shows, all you can ever be is the best you. If people don't get that, then it is their problem--don't let them make it YOUR problem. If you can:"Strong at the Broken Places" a book by Richard M Cohen discusses just this issue. You deserve to be measured by more than intervals between seizures.

rondy1947 said...

I have never read a more sensable approach to this problem! After reading the comment by Diane J. Standiford, that you should be measured by more than just intervals between seizures. That was the clencher of the statement best suited for all people with E.Paula, I truly believe that she struck upon "The Light at the End of the Tunnel"! Paula, people with E aren't just pieces of meat to be thrown to the dogs, but human beings, many with great intelligence and truly very good minds to be functional human beings, with feelings, and needs just like any person without E! Certainly not people who should be institutionalized or shoved off in an obscure corner of the world, as if they had leprosy etc. and placed into a colony all to themselves to live. Keep up the good writing, as the thoughts comming from your mind and going down on paper certainly are not just idle chit chat! With Love-Cousin Ronnie from Iowa