This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018. Follow along!
I was diagnosed with epilepsy at age four. At that time, early 1960s, one of the few medications available for epilepsy was phenobarbital. Concerned about negative side effects for a growing four year old, my grandmother suggested that I be taken to church and prayed over for healing. Being a family of great faith, my mother and father truly believed in a miracle for me, so as I grew from being a child to an adult, nothing was said to me about ever having had epilepsy.
Coping with adversity
As an adult I could sense that something was not right but I could never put my finger on exactly what it could be. I spent most of my free evenings and weekends in libraries reading, trying to find something in a book that I could recognize as the same as the experience that I was having. Every day I would get up and read something, then go to my low wage job that I knew would not pay the bills. And I felt alone, too, very isolated, but I felt too confused and anxious to finish my education or to socialize. Sometimes I had severe migraine headaches and depression, but at other times feelings of euphoria and inspiration to write poetry.
Getting an epilepsy diagnosis
Finally my reading led me realize that I might have epilepsy; I decided to see a doctor, just to be sure one way or another. I made this decision on my own without consulting my family. Results from an EEG came back positive for temporal lobe epilepsy with complex partial seizures. I was thirty-nine at the time of the diagnosis. When I shared the results with my mother and father they acknowledged that I had been diagnosed with epilepsy at age four, but they continued to believe that prayer and faith are enough. For them, whatever epilepsy I had currently been diagnosed with at age thirty-nine was a new and different epilepsy than the one I had at age four. As a result, I have been largely estranged from my family, as I do not agree that faith healing at any age is the cure for epilepsy.
Finding beauty in my new life
In the months immediately following my diagnosis, it seemed to me that I had lost half of my life to epilepsy. I wondered how my life might have been different if my family had responded differently when I was four. Things are better for me now. I work as a librarian and can pay most of my bills. But the loss is real and the clock cannot be turned back. Poetry is a way to cope with some of the difficult feelings. Here is one of my favorite poems, Desert Rose. I like it because writing it helps me remember that living with epilepsy can feel like a very empty experience sometimes, and very lonely too, but even in the empty moments, beauty can blossom.
I hope that the next time you are feeling empty or alone, the words of my poem will help you see beauty in your own experience of living with epilepsy:
Ego deconstruction is the alchemy of
Flesh dissolving in the bleak desert
Lonely and abandoned.
Drained of life by the sun
Crack in protest
Then falling break, exhausted.
One by one bones settle
Into the solitary silence
Surrendering to completion
Desert rose blooms.
by E.M. Reeves
Are you living with Temporal Lobe Epilepsy or TLE? Share your story or comment on Elaine’s experience.
NEXT UP: Be sure to check out the next post by Audra at https://ourlifewithautismsite.wordpress.com/.
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