August 29, 2017

The Courage to Share, by Sandra Kinsella

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.


I first encountered Louis Stanislaw and his family in 1989. Louis’ father, Joe, was my boss—and at the time, Managing Director of a rapidly expanding company in Paris, France.

The Stanislaw family was down to earth, warm, kind and generous. I had no idea that Louis began to have seizures during this time. The proof: this tight knit family of five, with mum Gussie at the helm, embraced life with unquestionable joy and unwaveringness.

The outside world never knew of Louis’ struggle, nor of Joe and Gussie’s anguish.

It was only about five years ago that I reconnected with the Stanislaws after learning of Louis’ film “On the Edge: Living with Epilepsy.”

At first, I was pained at the thought that Louis has suffered in any way—irrespective of the malaise being triggered by seizures relating to epilepsy.

However, on reflection, I came to the realization that only Louis, being the special soul he is, could carry this particular cross.

Armored with a determined will, using his God-given gifts of creativity, Louis took on the impossible: to raise awareness, understanding and empathy regarding epilepsy and to open up honest and frank discussion with both learned and nai?ve people.

I will be candid in admitting that, to date, I have yet to witness anyone—whether family, friends or strangers—suffer an epileptic seizure. Ironically however, I now find myself, within just six months, working alongside new colleagues who have either had epilepsy since childhood or endured seizures later in life.

Epilepsy, it transpires, does not choose age, ethnicity, religion or social status. Epilepsy, to put it simply, just happens.

My contribution for the reader of Louis’s book is inconsequential, except for one acute detail: within five years of exchanging periodic correspondence with the Stanislaws, I have observed Louis valiantly telling his story, at times when the darkest hour before dawn lingered for far too long.

Louis, thank you for your unselfish spirit, for helping and encouraging children, young adults, parents and families—sufferers and non-sufferers alike—to fearlessly walk the road less traveled.

— Written by Sandra Kinsella