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Sharing Our Stories

October 15, 2012

I’m spending much of this beautiful autumn month in Michigan, where my parents have had a house since the ‘70s.  The Mendus family moved in across the street from them about ten years after they did, and–when visiting—I knew them only to nod at or wave hello to as we walked by.

Fall in Michigan

Fall in Michigan

Just last week–thirty years later–I was told by a mutual acquaintance that we have a common bond.  Maggie has had epilepsy since she was twelve years old, when she developed a high fever due to the Asian flu.  Her devoted husband, Mike, has been an extraordinary companion and caregiver throughout their 43 years together, and this weekend we spent hours over dinner sharing stories, frustrations, feelings, fears and hopes.

Susan Axelrod, Maggie and Mike Mendus

with Maggie and Mike Mendus

We have so much in common, despite the fact that Lauren’s epilepsy is so very different from Maggie’s.  So many different syndromes comprise the epilepsies… but the challenges of trying to live a normal and fulfilling life are so similar.

Epilepsy can be silent. In between the seizures, people can keep their epilepsy closeted away. It’s totally understandable that if we’re not actively seizing, we want to go about our lives as best we can (though, sadly, often in a drug-induced cloud).  And, we don’t want people thinking of us differently. I think of the times I would wave at Maggie or Mike without a clue of how their lives, too, were defined by epilepsy—completely unaware of the bond we shared.

Unfortunately, though, even though we can’t “see” epilepsy when a seizure is not occurring, there are things going in in the brain of a person with epilepsy in between seizures. Things we don’t yet understand. This is just one of the terrifying mysteries of this disease.

What happens in a person’s brain before their very first seizure occurs? What is it that allowed Maggie to lead a seizure-free life for a full twenty years, and then have her seizures reappear? My Lauren has been seizure-free now for twelve years–I live in fear of the day the phone rings and I learn they have returned.

These are just some of the questions our researchers must start to find answers to if we are going to find better therapies, preventions and eventual cures.

Maggie has published her poetry–her reflections on having epilepsy–in a book called Broken Consciousness.  In her forward, she writes:

“…Each day that I wake up alert and with no signs of seizure I consider as a gift.  Something we share the world over is a common sense of fragility and the common feeling of doom averted…As of this writing, I have been seizure-free for five years, one month and twenty-seven days…Yet the prospect of another looms like a dark cloud on the horizon.”

Indeed it does, for all of us who live with this disease.

I just heard that Coach Jerry Kill, head coach of the University of Minnesota football team had yet another seizure after their game against Northwestern on Saturday. Clearly he “appeared” fine during the game.  What was going on in his brain–invisible to all of us–that led to that seizure ten minutes later?

with Coach Kill in May where he spoke at the Epilepsy Foundation of Minnesota event.

Thank you to everyone who is willing to openly share their stories about epilepsy. The more we share, the more we find each other and the sooner we can educate the world about the need to accelerate the research that will find the cures so many of us are desperate for–the research that will begin to help us understand the  underlying causes and mechanisms that have eluded us for far too long.

Please help us reach that goal in any way you can. Every dollar counts, and every seizure truly does matter.

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