Telling Our Own Story...

It is both possible to suffer a disease without illness and suffer illness without disease. Illness connotes a moral condition and disease signifies a physical set of unfortunate bodily responses without moral imputation (Schneider & Conrad 1983). 

Further, the notion of illness conveys irregularity, victimization, pity and revulsion (Sontag 1978).  In the lives of the chronically ill, the struggle to sustain a balance between the physical and moral aspects of one’s condition can effectively blur the construction of identity, thus impairing socialization and independence by sapping the desire for either. The construction of identity does not take place in a vacuum. In many instances, the identity formation or the construction of Self is a process noticeable to us, as our participation in it progresses.

Take for example the simple act of relating how one has become disabled. Here, the story is the individual. Biographical data, integral to the formation of a personal identity, is the stuff of self, and a fragile artifact.  The effort one makes reciting this story is tremendous and in itself, an act of trust.

A common occurrence in this recitation, however, is the coopting of the tale by a friend or relative. In this instance, the individual is cut out of the loop of his or her own agency, because the telling of the tale is an assertion of his or her own self identity. When it is coopted by another, it is as if that identity is silenced.

When, at the same time, errors are made in the telling of the tale, an indescribable blow is made against the owner of the story. A kind of assault is made against the individual to whom the tale belongs. And, when this is done in the presence of a professional, it can undercut the validity of further input, making it seem unreliable.

Most of the time, the friend or relative does this action in an effort to “save time” because they have heard the story before and feel it may “drag on” more than is comfortable. For the individual to whom the tale belongs, it might be better if the friend or relative simply waited in the other room until the appointment is over.

For persons experiencing epilepsy, however, it can be difficult to ask the person to wait. The individual with epilepsy may feel the need to have a witness along to confirm certain aspects of seizure activity, such as the length of the seizure or convulsion.

We know that we cannot witness our own activity, but only report that something has or has not occurred. We are in a delicate spot at these times. We try to establish a sound self-image that can be respected by others. We also try to develop a sound relationship with the professional we are dealing with, and many times this is a physician. We know a doctor’s time can be limited, but we also know that there are salient elements in the story that will help the doctor to understand us best. 

How we tell the tale is as revealing as the tale itself. 

            

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.