What My Epilepsy Taught Me About the Value of Time
We know more about epilepsy than ever. But I am still trying to reckon with mine.by Elizabeth Bruenig
Among the many special causes entrusted to the patronage of St. Valentine — beekeeping, love — is epilepsy, though no one seems to know exactly why. The great 20th-century psychiatrist Leo Kanner guessed in a 1930 paper on epileptic folklore that the association was earned by the similarity between the sound of Valentine’s name spoken in German and the epithet “fallende Sucht,” “the falling disease.” It may have been that over time, entreaties to Valentine from epileptics were answered with particular generosity. They needed all the help they could get. Kanner cites several other saints known to be patrons of epilepsy, whose names were given over time as euphemisms for the disease — St. John, St. Donato, St. Cornelius and scores more.
It has been some time now since epileptics had only the saints for recourse, though the path from superstition and desperation to social acceptance and medical improvements has been fraught. The bad old days are far behind us, but the essential features of the disease — the loneliness, the suffering, the search for meaning in it — remain much the same. I have been epileptic all my life, and I am still trying to reckon with it.
To have epilepsy is to have one of any number of underlying conditions. Epilepsy describes not the problem — which could be congenital; acquired, as through injury; or some combination of both — but its manifestation: having recurrent, unprovoked seizures. Roughly 3.4 million people in the United States have some form of active epilepsy. The kind I have, Janz Syndrome, is among the more common.
There are remedies for seizures: medications, devices, surgeries and diets. All have varying levels of success depending on the syndrome and the type of seizure, and even the particular patient. And none are without long and miserable side-effect profiles. I have tried a half-dozen of these drugs and have hated them all, and a few years ago I decided to dispense with medication altogether. I have more seizures, but I’m happier, too.
It isn’t advised — and I wouldn’t necessarily advise it — but for me, the occasional trauma of seizures is preferable to the daily misery of headaches, nausea and incoherent drowsiness. I doubt most epileptics would be willing to go so far, especially those with catastrophic forms of the disease. If my condition were much worse, I would most likely find the viselike press of a permanent headache preferable to the alternative. Neurologists tend to be impatient with pickiness about medications, and perhaps they have a point. Things used to be much worse, and we ought to be grateful. But one at least imagines the saints to be sympathetic.
Which is not to say that premodern societies were especially solicitous regarding the welfare of epileptics. The historical record indicates that civilizations dating back to antiquity were aware of people who had seizures chronically and that they struggled to figure out what to make of them. Around 400 B.C., an anonymous physician compiled a monograph on the subject titled “On the Sacred Disease,” which was meant to dispel the apparently widespread belief that epilepsy had some magical aspect.
His effort to establish epilepsy as an ordinary medical phenomenon was valiant, but long in the vindication. By the Middle Ages, seizures had become associated less with prophetic insight and more with demonic activity, though some physicians held to the ancient idea of epilepsy as a natural disease. Supernatural explanations for seizures lasted through the Enlightenment, and then modernity bestowed its own strange gifts upon epileptics.
In the proceedings of the first annual meeting of the National Association for the Study of Epilepsy and the Care and Treatment of Epileptics, in Washington in May of 1901, a philanthropist listed only by the name I.F. Mack wondered how many such “hopeless, helpless, unfortunate creatures” there must have been in the United States, all in want of internment in residential colonies for their kind. By his count, thousands were already locked away in such centers, and thousands more would be over time.
In fact, Buck v. Bell, the 1927 Supreme Court decision that enshrined involuntary, eugenic sterilization in law, regarded a woman who was held at the Virginia State Colony of Epileptics and Feebleminded, though she herself was neither. Nevertheless, untold numbers of epileptics were sterilized against their will under the ruling, which has never been overturned, though forced sterilizations declined significantly in the second half of the 20th century.
Today, thanks in part to a broadening of civil rights and in part to advances in medical science, epilepsy is neither a spiritual gift nor a moral malady. Epileptics are not generally thought of as incapable of managing independent life, nor do any public structures remain that could house and treat them at any rate. Finding meaning in the disease, and sorting out how to live with it, is up to each one of us — alone. If the past saw epilepsy as a communal problem, either relating to gods and devils and their intentions for humankind or to the genetic quality of whole nations, it is now a distinctly private one.
And what does it mean?
It means that there are limits on the things I can do — I don’t drive, for instance — but it moreover means there are limits on my time. My greatest seizure trigger is sleep deprivation. Even an hour of missed sleep can be disastrous — but I still miss hours and hours of sleep. This condition has given me cause to reflect on what is worth rising early for or staying up late for. If my daughters are sick, it is worth the risk to hold a late vigil; if they stir at dawn on Christmas morning, it is worth the risk to see them delight in their presents. When friends arrive after midnight from out of town, or when election results on which everything depends (there seem to be many of these now) come in late or when I am in the middle of a conversation I don’t want to leave — all of these things come at a cost, and I am willing to pay it.
Willing because they are worth it. They are the conduits through which love flows into our lives — and so perhaps the dual patronage of St. Valentine is especially apt. This is what living with epilepsy is like, this ready payment for minutes and hours, because to give them up is to cease living. I used to think of this as a heavy tax leveled by my epilepsy, but now I see that I simply misunderstood the value of time before. I see it even in the plain and uneventful moments: My daughter and I sit on the floor so that we can cook together, and she peers down as I chop an onion, her eyes reddening at the corners. Why does it hurt my eyes, she asks, when you cut up the onion. It’s how onions protect themselves, I tell her: Every living thing wants most of all to live. And I am no different.
Please see important information about how to help someone who is having a seizure here.
Elizabeth Bruenig is an Opinion writer.
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