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.

 

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16 thoughts on “Standing Up for Epilepsy, Standing Up for Edgar

  1. My 6yrs. daughter has Epilepsy and I could not agree with you more. She tells people with pride that she has Epilepsy. I watch as people squirm when she tells them. I am trying to raise awareness for Epilepsy in my area and I started http://www.ribbonsforkellsey.weebly.com In the month of November her entire school colored purple ribbons and taped them on their desks. I love what you are doing and I hope it gets some attention (big)! Please let me know if I can help in anyway. Brandi McGuire

  2. Google does list the famous and has a site with a thumbnail image and paragraph about their adjustments that may be helpful as sources of inspiration and encouragement.
    We all face challenges.
    Embrace knowing.
    Just as you have heroes, how you adjust makes you a hero to others.
    How many six year olds are heroes?
    Peace,

  3. My father has epilepsy. He was an adult when he had his first seizure — just a few months before I was born. It does not limit him. He travels frequently, lives by himself when he needs to for work, drives himself everywhere and does not fear his condition. He takes medication daily — several different ones over the years, each with its own horrible side effects — and it generally keeps the seizures at bay. He now only has big ones every few years. He tries to get enough sleep and take cautions in the things that he knows trigger the seizures, but he doesn’t let them have any power in his life. He is strong.

  4. I will proudly stand up and say I too have epilepsy! I was diagnosed when I was 22, 1 week after my sister passed away from a seizure. She and I were exhibiting the same symptoms and although I had been tested for everything under the sun, she had just started her testing process. I have been through 3 doctors and several different types of medication but now my seizures are controlled by the appropriate medication. I am now 49 and live a completely “normal” and productive life. Epilepsy is NOT who I am, it is simply a PART of who I am. Taking a few pills a day and having some blood work done every 6 months is not something I am even cognizant of anymore. It is simply part of my life. Yes I am different from a large majority of the population but isn’t that what makes us special. That’s what I am…special and I wouldn’t change a thing. So yes Edgar, I have epilepsy, I live with it and so will you! You too are a VERY special person!!

  5. Dear Edgar,

    I know you have epilepsy. I have it too. I won’t lie to you; it is not easy. It is weird but sometimes people are scared of epilepsy. Really, there is nothing to be afraid of. It is just an electrical storm in your brain. But people are sometimes afraid of it, and that really stinks for those of us who have epilepsy. Other people are brave, and not afraid. Like you and your mom and like Kevin (He says he is not afraid of anything).

    It was hard for me when I was a kid, so there are some things I want you to know.

    I want you to know that you are going to be JUST FINE living with epilepsy.
    I want you to know that you can do WHATEVER YOU WANT IN LIFE (unless your mom says no).
    I want you to know that THE RIGHT TREATMENT CAN HELP you so keep doing what the doctors want you to, even when you just don’t feel like it.
    I want you to know that you can TELL OTHERS ABOUT EPILEPSY and if they say something not nice, then you tell them they need to learn more.
    If anyone tells you epilepsy makes you CRAZY, then you say, yeah, it does. It makes you CRAZY COOL.
    I want you to know that YOU ARE NOT ALONE. A lot of people have epilepsy.
    I want you to know that if you have any questions, you can always ask me.

    Betsy (Kevin’s Mom)

    • Betsy & Samantha,

      I just saw Betsy yesterday and today I read this! Our son Finn, who was in Edgar’s kindergarten class, has refractory absence epilepsy. He has also had one generalized tonic-clonic seizure. He’s 10 now and as he approaches the ‘tween years he has been struggling both with his fear of the social stigma as well as with school work (we think he may also have ADHD). It doesn’t help that we are are currently in the throes of many meds with many iterations. He just wants to know why him? I have been trying to find some peer support and came upon Samantha’s blog thru the Matty Fund site. I am going to share Besty’s post with him in hopes that he can find some inspiration. I will also try to get him to go the upcoming Newport support group meeting.

      Kerry

  6. My son Jed has epilepsy, he’s 19. He had very good conrol until he was 15 then he had massive struggles. Despite all this he is now back with excellent control and in September will be off to study at Cambridge uni (we are in the UK) One step at a time………. Elton John, Prince, Romeo Beckham, Dai Greene (British athlete and world record holder 400m hurdles) all have/had epilepsy to name just a few

    Rosemary

  7. I am a 30 year old doctor working in the UK who has epilepsy. I was diagnosed as a teenager, when I knew that something was not quite right in the way that I was experiencing the environment in comparison to my peers. This culminated in my having several grand mal seizures. Medication has generally controlled these, but I have had to surrender my driving licence several times (1 year bans) following seizure events. I come from a family where no-one had even been to university before, but my will to understand my disease and to succeed in pursuing my goals means that I completed under- and post-graduate degrees in clinical neuroscience before my medical degree. Epilepsy places restrictions, most through safety rather than anything else, but I have gained a lot from my condition. When I talk to my patients, it is with the experience of knowing what it is like to go through what they have been through. I own my epilepsy. It does not define me as a person.

  8. I’m also very open about my epilepsy. Ever since I was 13 I have told people that “I have epilepsy” when a topic comes up that is relevant to disability or epilepsy. It’s true that you meet immediate reactions of pity, but if you continue on in the conversation, with a matter-of-fact voice as if you had just said “I have blue suede shoes”, it can open a conversation with someone and they feel more comfortable to ask questions. I usually answer questions and the first two are timid, by the third they usually need encouragement because they are curious, but they wonder if they are offending. That’s around the time I say “Don’t worry, ask anything, I’m not offended. I want to answer your questions.”

    You touched on a pet-peeve of mine with some “famous epileptics” need to show that “I’m not really one of them”. The most interesting case, in my opinion, is Supreme Court Justice John Roberts. He has suffered two grand mal seizures since being SC Chief Justice. I truly think (it’s only a guess) that he had a petit mal seizure when he was swearing Obama in during the first inauguration ceremony. Nevertheless there has been no public statement about his condition. If only he would be open about it. He doesn’t have to travel the country touring, wearing a t-shirt “I’m an epileptic”, but I would like some admission of his condition/disability.

    I have been pretty frank about my approach to epilepsy and wrote a novel–a veiled memoir–A Great Place for a Seizure. Perhaps in 10 years or so your son will find the encounters that the main character has with her neurologists, friends, strangers, and others familiar.

    Regards,

    Terry Tracy

  9. Dear Edgar,

    I’ve had epilepsy since the age of 3, and have had over 25 “grand mal” (generalized tonic-clonic) seizures since then. I’m now 36. I graduated top of my class at an Ivy League university, went on to obtain my MD and PhD, and am now working as a neurologist. I am happily married and have 2 beautiful young boys, who are around your age.

    As you grow, try not to let your epilepsy define you. You may have certain limitations – I don’t drink alcohol, I make sure to get enough sleep, and I have to take daily medication. But there is still so much that you can do in this world!

    Wishing you all the best!

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