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It occurs to me that a lot of my writing about cancer takes me to my experience with epilepsy as child. I didn’t have support groups, social workers, or websites to turn to for guidance back then so I journaled and wrote poetry as a way to process all that I was living through. I remember being offered profiles of epileptic heroes. People like Harriet Tubman, and Julius Cesar were held up as examples of how people with epilepsy could go on to great things.
That talk was wasted on me. I never wanted to do great things. My dream was to do the ordinary things that epilepsy threatened, like go away to college, drive a car, live alone, and ride a roller coaster. I was able to live each of those ordinary dreams and several others that were more extraordinary which only became targets after I released the dream of being “normal.”
While living with cancer I was introduced to the concept “the new normal”. By that time my quest to be ordinary was not as strong as it was with epilepsy, in part because I’m older. Also because there is more public awareness about cancer, especially breast cancer, so the fact that I’m not “normal” as a person with cancer didn’t leave me absolutely isolated like it did as an epileptic.Breast cancer comes with support groups, news stories, documentaries and websites that made me an instant member of a community with established cultures and norms. Cancer has it’s own people places and things, some would argue that it is an industry with it’s own economy and workforce and all that goes with that idea.
Even though epilepsy rates are reported to be as high as every 1 in 26 people, I rarely hear news stories about epileptics or epilepsy research and during my youth epilepsy was discussed even less often than it now. The only time I heard the word was when I was in the doctor’s office. Even then the neurologist that I saw dealt with a wide range of disorders so the waiting room was at times unsettling. The first time I realized that other people were in a situation similar to my own I wrote the poem that follows.
Girl with Epilepsy
It scared when I saw her fall
I was shocked confused
I thought I was only one abused
By “the big E”
But someone had a seizure
It wasn’t me
I didn’t understand at first
What was going on
How should I respond
What was I to do
I didn’t know
But my boyfriend knew
And so
He offered her some help
He showed her that he cared
While I just stared.By Pam circa 1987
The way that this relates to cancer is my reaction was to press pause. I was stopped in my tracks the first time I saw a seizure. I remember feeling guilty about not helping but I couldn’t move for what felt like an eternity. Watching my boyfriend’s helpfulness was like the slap in the face I needed for my mind rejoin my body and get moving, but still I did nothing to help her. There were times during treatment when I needed a figurative slap in the face to get going. For instance, a few weeks before chemotherapy I curled up in a ball watching bad family drama on NETFLIX too frightened or depressed or shocked to get out of bed when it hit me. I needed to witness cancer. So through Gilda’s Club I attended a weekly cancer support group. At first I sat quietly among the regulars and stared like the girl in the poem. But in time I spoke up and shared my journey and suddenly I was not the only person I knew living with cancer. That helped me a lot, it still does. I wonder how a group like that would have helped me deal with epilepsy years ago.
Be well,
Pam
