Showing posts from 2016

Kids with Epilepsy: You Can Change the World

Dear Unstoppable You,
You have so much to give.
You’ve been handed epilepsy, and, depending on its relentlessness and the form it takes, you sometimes may wonder if that’s it for your life.Are you forever to rely on others to do things for you?Are there people who will think less of you when they find out you have epilepsy?Will they be afraid of you?Venturing out in the world can be difficult for some of you… but chances are that it won’t be quite as bad as you think.In fact, at the same time, it may help you have a much greater impact on the world when you do.
You could begin by maybe even changing the world for people right at home or in school (yes, maybe even with the bullies!).You already have experienced adult life lessons given by having lost control of your body and, most likely, feeling frightened right down to your bones.You also have learned what’s necessary to do to carry on.With the emotions you’ve had and understandings you’ve gained, you’ll have a much easier time of putti…

Stigma, Fear, and Friends

To carry on, bloggers need a passion. Ending the stigma against epilepsy is mine.After talking with many sufferers, I’ve found increasingly greater self-acceptance and less prejudice against epilepsy among Millennials than in other age groups (if interested in details, see my last post).Unfortunately, there are other factors that affect our feeling stigmatized, and together we can figure out how to minimize them.
What Stigma Feels Like
We feel stigmatized when we feel that we are less than others.This can take the form of feeling that we're not as good as others because of our condition or have something that we need to apologize for, as irrational as it may be.Also, we can feel others are spurning us in one way or another – something that may be real or imagined.
Stigma vs. Fear
And here lies the problem.We often are being feared, not disdained.Others might not, in fact, be looking down on us at all, but that doesn’t mean they necessarily will want to be near us when a seizure hit…

Millennials and the Decline of the Stigma

This post is part of the Epilepsy Blog Relay™ which runs from November 1 through November 30. Follow along and add comments to posts that inspire you!
A month ago, I spoke with Jason Baranello, who, at 32, happens to be a Millennial (someone born into a generation thought to have born between 1982 and 2004*, though some consensus data differ slightly) .He was diagnosed with tonic-clonic epilepsy when he was 19… and didn’t know about the stigma.In fact, 13 years later, and having never hid his epilepsy, he still hasn’t experienced one.
Our conversation stuck with me.Jason is a smart person who is completely aware of the complex interplay of truth, myths, and social constructs around him.He had his first seizure when in college and has had a full life, enjoying controlled epilepsy. He is thoroughly integrated into society, one that he reports never makes him feel diminished when he tells any of its members about his epilepsy.“They’re supportive,” he says.What, then, is so different about…

Guest Post: Taking Charge by Shan O'Meara

Please welcome guest blogger, Shan O'Meara! Suffering crushing side effects from Depakote, Shan decided to take charge of his care, no longer simply accepting all that his doctor told him to do. The quality of his life changed dramatically, as you'll see. Please join me in a loud "bravo!" to Shan.

As I have gotten older (I am now 43) I began to question, if not just to myself, but also to my doctor, exactly what he was doing. It’s hard to quantify, but being on Depakote made me not care about anything. With each passing doctor’s appointment, I would have nothing to tell him. Finally, I got off of Depakote, and I now always create a list before each appointment. Writing things down made it easier for me to remember what I wanted to say to the doctor and I had plenty of questions for him each time. Epilepsy became a part of my life at age 20. I was struck by a car when I was 10, but the seizures didn’t start until I was 20.  There are a lot of meds I haven’t taken - …

The Emerald City

Did I find myself in Oz this week?
I had a fascinating talk with Jason Baranello, a remarkable person who was diagnosed with epilepsy 13 years ago and never – that’s right, never – came in contact with the stigma so many of us know so well.In fact, when he first meets people, he often leads with telling them he has epilepsy, then instructs on what to do if he has a seizure.Always the response is support and, often, curiosity about the big E.They have questions, and Jason answers them.
Has Jason found what I call "The Emerald City" - a place free from prejudice against epilepsy?  Is it too good to be true?Possibly not.A few points of comparison of his experience vs. mine
Type of epilepsyTonic-clonicTonic-clonic
TriggerForget medsForget meds
Work environmentCorporateCorporate
Impact on sick timeLittleLittle

And now the fork in the road…
GenerationMillennialBaby Boomer
Self-perceptionHas nothing to doI’m “the other;” I’m whe…

Finding a Way to Acceptance

Do you remember one of Robin Williams’s most unforgettable lines?“It’s not your fault.It’s not your fault.It’s not your fault.”He said so over and over again to Matt Damon in Good Will Hunting, as Damon’s character struggled with demons that kept him from realizing his potential.
I was reminded of the movie’s scene the other day.And with my recent understanding of my epilepsy and its place in my life, it all makes such sense.Many times we hear of abused children or spouses who come to think that somehow they deserve what they’re getting.They must be fundamentally bad or, at least, different from the rest of humanity.They should live quietly, getting by as best they can in society.
Because of my epilepsy, I lived for years feeling that I was a weirdo, “the other.” Somehow, I thought that I didn’t deserve anything I got and any successes were just examples of my fraud of a life. I was in hiding with misplaced shame and pretty successful at it, too (except when I had my tonic-clonics!).