Standing Up for Epilepsy, Standing Up for Edgar

It was a simple question, seemingly simple, and broached with all the earnest entreaty his six-year-old self could muster:

“Mom, who do we know who has epilepsy?”

I named the people we know, and he seemed happy to hear the list, however short.

Then . . .

“Mom, who do we know who’s famous who has epilepsy?”

As an adoptive family, we have never had to look far–in our lives or in the lives of the rich-and-famous–to find others who have adopted or have been adopted.  However, though the list of “famous people with epilepsy” is wide and impressive, a list of contemporary celebrities is curiously limited.

There is Lindsey Buckingham (of Fleetwood Mac fame), who, while admitting to having epilepsy, quickly adds that his is a “mild” form.  Then there is the supremely talented actor Danny Glover, who claims he has “controlled” his epilepsy with “self-hypnosis.”  And musician Neil Young, who understandably disliked the side effects of his medication and decided to embark on a path of “personal stability” as a method of controlling his epilepsy.

In reviewing this list, one thing is certain: Each of these men has opted to use either reductive or avoidance terms where their epilepsy is concerned.  Buckingham’s is “mild,” so no need to be concerned.  And Glover and Young purport that this neurological (read: physical) condition is simply an exercise in “mind over matter.”

And as much as I admire the talents of each of these performers, I will go on record as saying–emphatically and unequivocally–this sort of approach does my son a tremendous disservice.

If you have diabetes, you can turn to Halle Berry, who admits and speaks to her condition; if you have lupus, you can look to Seal; but if you have epilepsy, your role models in the public arena include one who needs to attach a minimizing adjective to his epilepsy and two others who claim theirs is under control with just a little mental work on their respective parts.

And we won’t even mention the copious celebrities who have epilepsy but will not (or cannot) admit to it due the prevailing stigma and resulting discrimination that continues to abound.

So, here is my request:  Though I am quite certain my mere words in this small space are not going to bring any celebrities out into the open and admit to their condition for the good of my son and others like him who are clamoring for examples of famous people who are living and thriving with epilepsy, I am hoping to gather a list of people–like him, like us–who are living with their condition, who aren’t afraid to say, “I live with my epilepsy and this is how, and so will you, Edgar.”

If you have epilepsy, would you leave a comment here on this post?  Offer some words of wisdom that you have gathered through your journey, something Edgar can read and turn to as he negotiates this path.  And if you know someone who has epilepsy, would you send them this link and ask them to do the same?

This blog is a gift to my children, but I need your help–your selflessness, your empathy, your bravery–to give him what he needs.   Thank you.