How I went from shame to acceptance.
Rabbi Galina Trefil shares her journey from shame to acceptance of epilepsy.
Rabbi Galina Trefil has spoken before the Nevada State Legislature in order to help preserve the right of disabled people to choose their own caregivers. She hopes to find a publisher for her book on slavery in 19th century Eastern Europe.
As a child, I was diagnosed with partial and generalized seizures. Partial seizures begin in one part of the brain, while generalized seizures involve the entire brain from the start. I experienced absence (petit mal) seizures, which are short-lived lapses of awareness sometimes accompanied by jerking, and tonic-clonic (grand mal) seizures, which begin with stiffening of the limbs followed by convulsions and unconsciousness.
My doctors told me the seizures were probably caused by hormones (although I had also sustained a traumatic brain injury as a child) and would go away in a year or two. They never did. And despite a long parade of virtually every antiepileptic drug ever approved by the U.S. Food and Drug Administration (FDA), I have never achieved control of the seizures. Although many people with epilepsy are able to achieve seizure control, that isn't true for everyone.
Doctor appointments became so frequent that I barely managed to graduate high school. My grades were terrible, as I frequently would blank out or convulse during class. Some of the side effects from the drugs included difficulty reading and speaking, temporary blindness, hair loss, anorexia, and fugue states, in which I would lose all sense of personal identity. I sustained many injuries from the seizures, including a broken nose, broken teeth, and more bruises than I can count.
Growing up, I wanted desperately to be independent like everyone else. I didn't want to be chained to a regimen of medicine that amounted to thousands of pills. I waited faithfully for the epilepsy to go away and was crushed completely that it didn't.
Then one day, my cousin, a college professor, informed me that not only did he have epilepsy, but he wasn't ashamed of it. This astounded me. He told me that epilepsy, as all other things in his life, was responsible for making him the person he was. It got me thinking about my own life. Were there any benefits that I had gleaned from my condition? Yes, there were.
Being diagnosed with epilepsy taught me to appreciate every day of my life in a new way and to become “Zen” with the fact that I might start convulsing at any moment. Experiencing multiple episodes of status epilepticus, an extended and life-threatening seizure, has taught me that I don't fear death.
I am grateful for things that others might take for granted—even going to a grocery store and bringing home food on my own (I can't drive because of my epilepsy) or learning how to bathe safely so that drowning and other water-mishaps are not a threat. Every small detail of life with uncontrolled epilepsy is a kind of struggle against the odds. My cousin taught me that I am proud. I'm proud to have been a fighter since childhood. I have been fighting so long that I can no longer say that I am handicapped. I am handicapable.
Just as Harriet Tubman refused to let her own tonic-clonic seizures stand in the way of valor, so too everyone with epilepsy must refuse. We can't allow ourselves to be bound by shame for our neurologic condition. It defines us negatively only if we let it.
Epilepsy has made me strong in the face of whatever life throws my way. Epilepsy has made me braver than I ever would have been otherwise.
My only regret is that I once believed I could only be good enough if I no longer had seizures. On that note, I strongly urge doctors and parents to teach their diagnosed children not to be ashamed of their condition—and to draw upon their experience to find the full range of their courage.