November is National Epilepsy Awareness Month in the US. While many people have heard of this disorder, few people understand what it is and how public attitudes toward it, and healthcare, have influenced how people have lived with it.
In my extended and family of origin, Epilepsy was, and still is, so frequent that we were asked to participate in studies conducted by Columbia University, in New York.
Before the study, I used to believe that I had two uncles, three cousins, two sisters, a niece and a nephew who lived with Epilepsy. However during the course of the Columbia study , I learned that more of us were Epileptic during childhood, and outgrew it. This included me and my two other non-diagnosed sisters (we’re a family of 5 girls). This is because the symptoms of childhood onset Epilepsy were so frequent in our family, we missed them. For instance, when I described the “weird thing that used to happen to me as a child when I fell asleep, where the room pulsated from big to small,” to Columbia researchers, I learned that I was actually experiencing a waking seizure. It then occurred to me that both my mother and my daughter had described the same experience.
Diagnosed Epilepsy seemed pretty normal in our family. With many family members taking medication, at least into young adulthood, I got pretty familiar with pill bottles of Zaranton, Tegretol and Dilantin. No one hid, or even whispered about this, or acted as if it was taboo. It was simply a condition each family dealt with, because at least one of us, probably had seizures of some kind. In fact, I can remember cousins comparing seizure experiences at holiday gatherings and wishing I had a story to tell.
Perhaps it was the fact that Epilepsy was treated more like a broken limb, than a secret, in my family, that meant when I was diagnosed with a major mental illness, I wasn’t set apart either.
But outside of our family, things were different. I recall a neighbor, whose daughter was diagnosed with Epilepsy a few years earlier, counseling my mother in hushed tones about my older sister’s diagnosis, “Well, you can’t let her do things, you know. You have to keep her at home now.”
I remember my mother expressing how horrified she was by that advice. I also remember that neighbor’s daughter not being allowed to finish high school, and being kept “at home” until she died of cancer in her 40’s. People don’t often realize that not so many years ago, it wasn’t all that uncommon for people to view Epilepsy as a form of a severe intellectual disability. My sisters were very lucky that, at their time of diagnosis, my parents, who settled us into a very small Wisconsin farming community, bucked that trend and ignored this well-meaning advice.
Most people these days understand that Epilepsy is a seizure disorder that can limit people’s lives, but not totally. What we know and understand about the disorder is by no means complete, but it’s improving. Probably the most difficult thing I grapple with in regards to Epilepsy, is the long term effects it can have on people who don’t outgrow it.
My older sister, the only one of us who carried Epilepsy into adulthood, was diagnosed with early onset Alzheimer’s last year. Her neurologist believes it occurred from damage that came about by seizures that happened to her, just a few years ago, during a period in which she couldn’t qualify for health insurance (prior to the Affordable Care Act), and had to live without medication.
If there is a lesson to be pondered during National Epilepsy Awareness Month, on the dawn of a new Republican Presidential administration, I would ask that it be we consider proper healthcare as a global human right, and not a privilege defined by income or wealth. In an age where privatizing government programs has often led to corporations reaping huge profits, and many real people falling through the cracks with devastating ramifications, let’s choose our next steps very carefully.
Each of us has a birthright to live up to our individual potential, and to enjoy a basic level of health, regardless of ability or disability.
