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.

Talking About Epilepsy

In the late 1970's, Peter Conrad and Joseph Schneider were in the field, researching the experience of epilepsy. They concentrated their search for informants on the middle states and were rewarded with an overall participant pool of about 80 persons willing to talk about their lives with epilepsy. Having Epilepsy: The Experience and Control of Illness published in 1983 and the authors were heralded for their work.

When I read the book, some 20 years later, I was surprised by the singular nature of this work: Epilepsy is a disorder much written of and endlessly researched from medical, surgical, and pharmacological points of view, but rarely from a sociological stand point. For me, the book was a real page-turner. Yet, even as much as I liked the work, it seemed to me that it missed something essential: a discussion of key issues unique to the experience of "E." (epilepsy). That's what this blog is for, to talk about some of those key issues that create the essence of one's experience with E..

So, let's talk about them. But first, let's define our terms---after all, we have to agree on the language we will use if we are to understand each other clearly. I have over 50 years experience with E., and it should come in handy. Let me tell you how I realized the way the naming of epilepsy was setting up a barrier to any effective or meaningful dialogue about E.: As a child, it was carefully explained to me by my mother and my first few doctors that I had epilepsy, that I experienced grand mal and petit mal seizures, and that I wold never get over it. In my teens, I learned that I had left temporal lobe epilepsy that expressed itself as both grand mal and petit mal seizures but I was fortunate because my seizure activity came with an aura. As a young woman I was informed that all of this was wrong: what I had was epilepsy, certainly, but it had a left temporal lobe focus, and I suffered grand mal with an aura, petit mal and psychomotor seizure activity.

Today, I have simple and complex partial seizures which secondarily generalize into tonic-clonic episodes, accompanied by psychomotor episodic events. Over the span of my lifetime, my diagnosis has never changed, but the language used to describe it has.

Conrad and Schneider refer to a modernization of terms for epilepsy at the beginning of their book. They point out that some sets of terms are older than others. I feel compelled to point out that just since the publication of their book in 1983, the august body in charge of creating the lexicon used to describe epilepsy has ratified changes at least twice more and is likely to do so again, as soon as this year. As I count it, that makes at least four changes to the language used to name and describe epilepsy in less than 30 years.

Who are these folks? They are the International League Against Epilepsy. To be fair, this active phase of taxonomic refinement is a reflection of the outcomes of research and knowledge growth from within the medical community. But while changes to the language serve and enrich communications between clinicians and researchers, it has a paradoxical effect on those who live with E. because it enhances our sense of isolation from everyone else. After all, how do you begin to talk about your disorder if you can't simply use terms readily accessible to ordinary, non-medicalized folks?

Well, perhaps those kind of conversations can wait. The first set of conversations a person with E. can expect to have will be with one's doctors. You think: This should be easy. After all, E. is an ancient, well-recognized disorder, written about for thousands of years, diagnosed by Hippocrates the Greek and later by Galen the Roman. Not to mention it's New Testament references. So, it is reasonable to expect a clear, easy-going conversation from one's physician. True?

Not true. In fact, most persons experienced with E. have a broader working knowledge of this disorder than do many doctors, regardless whether they are generalists or specialists.

But, here's a tip offered by many of us experienced with E.: if you have an appointment with a doctor and you use words he doesn't seem to understand, or if he uses terms you recognize from before the 1970's, he is probably not the doctor for you. His use of diagnostic terms can tell you how seriously he takes E., how well he will treat you as a patient, and whether or not he has kept abreast of current treatments.