WRESTLING WITH MY SECRET SELF:
A Memoir of Living with Epilepsy
In the summer of 2009, I suffered multiple bouts of status epilepticus–one seizure following on the heels of another–which can be fatal. This inspired me to write a memoir about my struggle to lead a full life as a writer, teacher, activist, husband, and traveler despite my lifelong struggle with epilepsy. Mine is a story of falling and getting up again, over and over, the epileptic’s story. A story of living in the face of–even in defiance of–this mysterious brain ailment that can seize you at any moment, which most people know little about. I want to set the record straight. It’s scary, yes, but we learn to live with our disorder. I believe mine is a compelling story, an adventure tale of sorts, a story of accomplishment in the face of recurrent attacks, of denial and shame, finally of acceptance, a story of love and support, of setbacks and crises, and fleeting moments of victory and transcendence–because, for an epileptic, all remains fleeting, we are never secure.
Mine is called “the condition one should not talk about.” Like many epileptics, I learned to fear and deny my disorder as a kid. Having grown up in a family that would not discuss my fits, I can speak to the hurt such enforced silence brings, the legacy of shame and alienation it engenders. It has taken me years to accept my illness. When I was diagnosed with epilepsy as a child in 1956, twenty-seven states, including my home state of Oregon, still had compulsory sterilization and anti-marriage laws that applied to epileptics. This may explain my father’s reluctance to acknowledge my “spells.” After years of silence, I feel it’s time to talk openly and shamelessly about being an epileptic, to offer mine as a testimonial to the many individuals who struggle with the medieval superstition that still surrounds “the falling sickness,” to tell fellow epileptics, their families and the general public that there is little we can’t undertake and accomplish despite our ailment. I have skied (raced downhill and broken my jaw doing so), I swim, canoe, hike, travel, climb mountains, drive, ride motorcycles, and work out; I’ve taught in the toughest neighborhoods in New York, have commuted long distances, taught college, was the first VISTA Volunteer in Alabama, working in Civil Rights and anti-poverty programs. We are victims only to the extent that we victimize ourselves. It’s a message epileptics need to hear, because an aura of fear still haunts our ailment, reinforced by a society misinformed about it.
My memoir is an up-close account of what it is like to live with the falling sickness: the auras, simple partial and complex partial seizures, grand mal fits, post-ictal depressions, the nagging fears, the shame and denial, the hassles with medication and treatments, the secrecy, the hazards of driving, the self-limitations, the perils of work environments, the challenges our ailment poses in personal relationships, etc. But I also explore the hallucinatory auras and paranormal experiences our ailment offers many of us, how it teaches us to face our fears, how it has aided me–and other creative epileptics–in my work and given me a perspective on the world. I am convinced Dostoevski’s epilepsy helped him mine the depths of human grief and despair…and reach the heights of ecstasy, as did Frederick Handel’s. Likely Lewis Carroll’s experience of macropsia and micropsia in pre-seizural auras inspired him to write Alice’s Adventures in Wonderland and Through The Looking Glass, and Moliere, schooled by his own experience with post and pre-ictal distortions of reality, was right at home in the realm of grotesque realism. My message in the memoir–both to epileptics and to the general public–is that most of us with epilepsy can lead full and gratifying lives. Our age-old “falling sickness” could just as well be called “the rising sickness” since we must keep getting up again. That is what epilepsy teaches us. We go down, yes, but we don’t stay down for long.