Guilt

Guilt connects deep inside of us at that vague junction between an action taken and an action withheld. A core understanding of E. is the recognition that as persons with it, we cannot control the actions of our seizures with certainty. Epileptics and their families learn how to keep silent about the condition, preferring not to speak too loudly about it because to do so might engender more problems than support. In that silence we quietly learn to devalue ourselves. We learn to be guilty.

There is little social history we can lean on to make us feel more comfortable. We can become fixed on our own relationship to epilepsy and can spend huge amounts of time and energy on it. Rarely have any of us seen ourselves seize, but many of us have experienced the aftermath of a seizure’s power and the residual effect it can have on those around us.

In relationships, we suspect we are burdensome, or that we create trouble just by being in the company of people. We go to doctors, we search out well-known epilepsy lobbying sites on the internet, and we read the statistics for diminished marriage rates among persons with E…

These data make it seem that persons with E. are less-than-desirable partners. When we wonder about the future and if we will be able to enjoy the finer things life has to offer: love, marriage, etc., we feel as if we are engaging in a fantasy. This becomes especially true once we become familiar with the statistics on quality of life issues.

Love might seem destined to elude us, but guilt never seems to.

Guilt is an intransigent emotional artifact of my own upbringing. I can’t seem to shake the need to say, “I’m sorry”. Even now, as a married woman with E., I find myself blurting out this phrase, or reacting as though I have done something to be ashamed of, even though I have done nothing. Because he loves me and accepts my E. as a feature of our daily life, I have come to realize that my “guilt” is a learned response.

I have, in the depths of post-ictal depression, said that my husband might be better off without me. But I have been shocked to discover this response was neither original nor solely my own. It comes from the mouths of others with E., as well:

“I have had epilepsy for…years and have sometimes felt my spouse would be better off without me....”

“(My husband) told me today that he is not happy and doesn't think our marriage will last. He thinks I will be better off without him…”

“…doing a lot of thinking about whether this relationship was good for either one of us…maybe she’d just be better off without me…”

We know, but can do nothing about, the odd components that are a part of the E. experience: medication side effects, behavioral problems that come before, during or after a seizure, depression, etc.

In the physical world, support systems for E. are fragmented and far-flung. Since the 1990’s, the web has become a kind of support system, because in cyberia, one may find some relief among peers.

Via list serves, blogs, chat rooms, and email exchanges we have discovered a way out of isolation. We have discovered a means with which to write future social history for ourselves. And perhaps a way to learn to value ourselves for who we are, without the guilt.

Epilepsy Heroes & Self-Loathers

People have been sharing the names and stories of the disability heroes of E. all my life. It is always hoped by family, teachers and others that the person with E. will come to feel stronger and more capable knowing about them. These famous and historical persons with epilepsy are supposed to act as role models for one's personal success.

For my own part, I can't say I feel better about myself knowing there have been famous or historical persons with E., but I do find reading about them as interesting as their works.


Of the ancients, Julius Caesar and Socrates are presented most frequently. Napoleon Bonaparte is often pointed out, but unfortunately, the only lesson I took away from Napoleon's story was that his E. betrayed him in the end, at Waterloo.


I liked writers with E. much better.
Fyodor Dostoevsky filled my adolescent hours with great drama;

Edgar Allen Poe, entertained me with horror stories;


Count Leo Tolstoy made me cry.



If I read Alice in Wonderland or Alice Through the Looking Glass with the understanding that Carroll shared Temporal Lobe Epilepsy with Dostoevsky and me, I might have been more patient. (I never really felt 'at home' with Alice, either in Wonderland or Through the Looking Glass). The reasons for my discomfort with his tales of Alice's journeys had everything to do with my own recognition of the seizure process in myself. When I learned recently about Carroll's temporal lobe E., I became more comfortable with him. Never certain why he shaped Alice's world the way he did, it makes sense to me now.

Dr. Steven Schacter says Carroll describes "perfectly" the sensation many temporal lobe epileptics experience when he wrote about Alice's fall down the rabbit hole. I wasn't aware of Dr. Schacter's personal experience with E., temporal lobe or otherwise, but I'll keep it in mind the next time I take that same trip.

Mentioning famous and historical persons is supposed to bolster the idea that one can become whatever one chooses to become. A disabling condition, such as E., should not be the damper to an individual's future as a human being or a citizen.

It might also be relevant to point out that these same lists of disability heroes are just as much for the encouragement of parents and caregivers. They act to stave off a creeping sense of failure and despair one can feel toward a condition such as E.. Disability heroes are encouraging for each of us, so it should come as no real surprise to note that at many disability web sites, you can find seemingly endless lists of them.

But the presentation of a disability hero makes some of us wonder about his opposite. To discover the opposite dimension of the disability hero is to find the disabled self-loather. The search is like turning over some kind of rock to find a nest of untouchable, slimy beings. It is an unexpected discovery.

The self-loather is one who hates himself utterly and those like him. This creature strives as mightily as the disabled hero strives, to make known his agenda. There are self-loathers in families: the ones who make life more difficult than it needs to be for their epileptic off-spring. No one ever hears about these folks.

Harry H. Laughlin was an Epileptic Self-Loather.

According to Alex Wellerstein:

Harry Hamilton Laughlin (1880-1943) was the director of the Eugenics Record Office at Cold Spring Harbor, New York, from its founding in 1910 to its closing in 1939, and one of the most influential advocates of eugenics in the United States in the twentieth century. Aside from his work on immigration, which helped lead to the passing of the Immigration Restriction Act of 1924, Laughlin was also an influential developer of U.S. compulsory sterilization policy.

Laughlin published a copy of his "Model Eugenical Sterilization Law" as a template, which was carefully crafted to be both constitutional and heavily used by the legislatures. One state law derived from this model was passed by Virginia in 1924, then found constitutional by the U.S. Supreme Court in Buck v. Bell, 1927.

Buck v. Bell opened the floodgates for state lawmakers: its effect on society was to increase both the passage of sterilization laws and the practice of eugenical sterilization in the United States that would last through the period of World War II and beyond (http://www.people.fas.harvard.edu/).

Laughlin's ideas about compulsory sterilization were specific, listing the classes of persons to whom the law should be applied. One class specified in Laughlin's model law were epileptics. Harry Hamilton Laughlin was an epileptic, suitable for sterilization under his own law.

Harry Laughlin worked really hard to separate himself from the rest---wonder what all of that diligence and intellect could have done if he had simply chosen a more heroic path?

Trust…

Ever since I was little, I have tried to fathom the silences of others. The anxiety silence engenders can be terrible for a child already uncertain of her status. In response, I have always tried second-guessing what lies behind the walls I encountered so as to know if I am safe or unsafe or to know if the silence had anything at all to do with me.

I find the frustration of not knowing the thoughts of someone with power over me to be a key to my adult depression. I am certain it stems from feeling uncertain how my mother would inevitably dispose of me.

I knew she loved me, she was always telling me so. I knew she always had my best interests at heart. She told me that, too. But, I discovered as a child that there are worse things than being dead: if you are disabled, you can simply be “wished away”. Banished.

Looking back at it now, I can see such worries recruited in me a deep desire to defend myself. Self-defense needs created a structure not terribly uncommon, but nearly imperceptible to me because it took shape at such an early age.

See, a part of my intellect was partitioned to do a single task: analysis. It still functions, watching for inconsistencies in the words and actions of others. It weighs out meanings. Meanings are then held up to a set of rules. The rules have been created within me and when inconsistencies are contrasted against them, the results let me know whether or not I may respond contemporaneously, or, whether I must suppress the urge and save the information.

At five-and-a-half years old, my mother made a bargain for love’s sake: she would find a way to get rid of my older sister so that she could remarry. She explained her solution to her family as in the best interests of my sister, but she only told one of her sisters that her motive for sending the girl away was because her new man found her blind daughter “unbearable to be around”.

I admit to eavesdropping and I admit to powerlessness. There was simply nothing I could do to save my sister from going away.

In the end, my sister’s banishment lasted longer than my mother’s second marriage. But having once crossed the line of action no mother should ever cross, banishing a child, it became a useful tool she would use against me when I was naughty the way all kids can be. She would tell me that “if I didn’t behave”, she would send me away and that I wouldn’t be going to the same place as my sister---I would be going to a place where they “kept epileptics” for the rest of my life.

It can be difficult to fully communicate the power of this kind of threat to people who do not live under its shadow: a specific Hell created with you in mind, from which you would have no means of escape---and you would be sent there, to that place, by the ones you trusted most in the world. By the ones who told you every day how much they loved you.

In my teens, I remember one hot summer day and a man on a bicycle who passed by me. He was memorable to me because he was about 40 years old, and yet dressed childishly in overalls and an engineer’s cap.

I lived with my family in a little town in California where everyone liked to brag that they knew each other’s stories. So, I asked about this odd man and I was told that the man “had epilepsy and was probably a little bit retarded”. I was also told that he was “no threat” to anyone in town, now.

When he was 16-years-old, he had been sent away to live in one of those places where they “kept epileptics”; but instead of living his entire life there, the hospital offered his family a choice: he could be released or retained. His family made the decision that was ‘in his best interests” and he had been sent home. Castrated. Everyone in town could relax after that.

In over fifty years with E., I have yet to fall victim to this threat. What begins to emerge for me now is less a picture of social banishment and more one of age-and-infirmity-related discrediting. I find I am still second-guessing what those around me are thinking, but today I have stopped wondering how anyone could possibly dispose of me.

Having disclosed myself to the world as a person with E., I am less burdened by the secret and more ready to take on whatever challenges present themselves to me.

Falling Sickness, Bodo Wenz, 1983

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.