Please join me and Michelle to help fight the stigma of epilepsy. Let’s make it easy for everyone (even teens) to talk about epilepsy without fear. Let’s make Epilepsy Awareness Month not just this month, but every month.
Robert’s Sister: When were you first diagnosed with epilepsy? Was it a lengthy process to get diagnosed?
I was diagnosed in July 1999 when I was 12 years old. I had my first drop attack around April 1999 of that year in the kitchen with my mother. I had two more within a month of that first one: one at school and one at a movie theatre. They seemed so harmless at first but they scared the life out of me every single time. The neurologist didn't think it was possible that I had epilepsy but he tested me with an EEG anyways "just in case." Once he had my EEG results, he didn't know what else to say other than to apologize for being wrong.
Robert’s Sister: How did you feel when you were diagnosed?
I was completely flabbergasted. The neurologist just kept jumping around the question and all I wanted was to understand why I had MAE [editor’s note: MAE is Myoclonic Astatic Epilepsy] in the first place. Eventually, all he told me was that I had epilepsy, that somehow I managed to keep it somewhat dormant for ten years. The more he tried to explain himself, the worse I felt. No one seemed to have any answers and it didn't make me feel any better about what was going on.
Robert’s Sister: Did your family treat you differently after the diagnosis? If so, how?
My family has made a point of treating me exactly the same I was before the diagnosis. Over the years my life has normalized a lot and so for the most part, my life is fairly regular compared to most with the same type of epilepsy.
Robert’s Sister: Did the kids at school treat you differently because you had epilepsy?
I never told the kids at school for that specific reason. I was never much of a people person and the thought of people treating me like less of a person somehow kept me from telling the truth. It took me years before I told anyone about my epilepsy outside of my family. In fact, I was 21 before I told anyone outside my parents about it.
Robert’s Sister: What treatments have you tried? What has worked? What hasn’t worked?
I've been on Depakote and Lamictal - each of them made me feel a little crazy in their own way, but they did control my epilepsy. When I was 22 I managed to become an inactive case and so ever since I've controlled the epilepsy by ketogenic diet. I still get tonic-clonic jerking and hand tremors, but most days I do just fine. I also avoid caffeine like the plague because I found that I get really depressive whenever I have too much of it in my system.
Robert’s Sister: Do you think the medications affect how you feel?
I know the medications messed with how I felt. For eight years I was on the Depakote and it messed with my head the worst. Most of the time I felt untouchable in the worst sort of way. After a few years, I just became desperate to feel anything at all - no matter how good or bad life got, I always felt the same shade of gray. It drove me nuts even on my best days.
Robert’s Sister: Have you done any advocacy work (individually or with an organization) or participated in any research studies? What made you want to be involved?
Before I started Calm the Storm Within, I gave money to the local Epilepsy Foundation and CURE. However, no matter how much I gave to either of them, it always bugged me that they focused so much on controlling the condition instead of figuring out how it works in the first place. All I've ever wanted was to understand what's happening to me and that's what CTSW is all about for me. No matter what, I just want to understand how epilepsy works so hopefully we can begin to better manufacture ways to control the cause.
Robert’s Sister: How has epilepsy affected your life?
It's definitely changed my life, mostly in perspective. I've made a point of taking life day by day, not over thinking the little stuff or the big stuff. It's when I start to get ahead of myself that I start to tumble and fall apart and let my emotions just wreck me for the day. With friends I can trust and a family that loves me, I can make it through any day with my sanity intact. Letting others in and helping me get through whatever's going on in my head is the hardest thing to do, but the best for having a great day.
Robert’s Sister: What is your favorite memory?
Road trips to national parks. My favorite has to be our trip to Yellowstone, Grand Tetons, and Glacier. It's amazing how calming and beautiful it can be just camping and getting yourself away from society for a week and a half.
Robert’s Sister: Do you ever wish you didn’t have epilepsy?
When I was a kid I always did. It used to make me feel like a freak because my case was so unexplainable, but now I see it as an opportunity. I got a once in a billion chance to do something with my life and help others start to understand their condition. I would love to spend the rest of my life just helping others understand how their condition works and how to get that understanding to work in their favor.
Robert’s Sister: What do you want people to know about epilepsy?
It doesn't define you. No matter what anyone says, the condition doesn't define you.
Robert’s Sister: Is there anything else you want to say?
I've learned a lot over the years, but the most important thing I have learned is that what you put in is exactly what you get out. My nutrition and what I eat every day can make the biggest difference in how bad my hands tremor or how bad my depression gets. I've never felt better in my life than when I'm on the ketogenic diet. It's not the easiest diet to do, but it can be well worth it.
Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.
Robert’s Sister: Thank you, Michelle, for sharing your epilepsy story!
Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.” Check back tomorrow for our next story! If you’re interested in telling your own story about epilepsy, please contact me at email@example.com.