February 21, 2007
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.
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