Epilepsy Support Groups Give Us Superhero Strength
Last updated: August 2022
Even superheroes with amazing powers find enemies who are too overpowering to fight by themselves, but they're not too proud to team up.
Being an epilepsy warrior
I was literally on the edge of my seat watching Ironman, Spiderman, Dr. Strange, Captain America, Black Widow, and the Incredible Hulk all fight together in "Avengers: Endgame." (And forgive me if I left someone out!) So why must we as mortal human beings with epilepsy – who haven't been bit by a radioactive spider, been zapped with excessive gamma rays, or are billionaire defense contractors – think that we must be equally strong? That's a foolish notion to think I've got to put on an equally virulent façade, that my needs aren't any different from anyone who doesn't have epilepsy.
And such comradery like the Avengers is something I still need. If an epilepsy support group isn't already part of your lifestyle, it's in your interest to make it so.
I needed a place to vent
My complex partial seizures don't grab as much attention as other people's tonic-clonic gran mals, but they have cost me enough jobs that I've had to adapt to being an entrepreneur to get some professional respect. Not driving for 31 years, there have been times I felt that I was under house arrest when I couldn't get a milkshake or get a haircut on my own.
Those frustrations can make my blood boil, and I can't have that because such stress only provokes more seizures! I'd certainly like to gripe about it and blow off steam. But my wife has to work for us, people working for me only want their pay, and my closest friends are from a Bible study group with a broad mix of problems of their own.
Support groups for epilepsy
When I was in my late 20s, I was a volunteer for the Epilepsy Foundation of Greater Chicago (an EFA affiliate). The director asked me if I'd like to be on a board that oversaw its dozen-or-so support groups, and I accepted her invitation.
Although I never attended any of them, I recall participants praising us for creating places for them to come to where firstly, they didn't have to put on false pretenses that they didn't have problems. Secondly, they loved gathering knowledge from other people's experiences (and in those days, it was more about medications because VNSs, RNSs, and lobectomies hadn't been invented). Finally, they made friends who they could call when either they were having a bad day or they wanted some more information.
A particularly hard time with my epilepsy
My "Epileptic Armageddon" in 1991 started with having a seizure while driving, colliding with a semi on an expressway. The cop chuckled, "You shoulda been killed!" But I walked away with only a cracked rib. However, it cost me my job, my apartment, and the humiliation of being a grown man moving in with my parents.
And moving hundreds of miles away to the village where they lived, but I knew no one, cost me a circle of dear friends! I watched TV all day long, and when stations went off the air after midnight and I wasn't tired, I'd go for a walk. There's one night I'll always remember.
The stars were bright as crystals. I shouted – yes, hollered, since I was on a country road away from any homes – "God! Why are you doing this to me? I've always lived by the 'Golden Rule.' Wasn’t that enough?" Tears burned my cheeks in the winter wind as I waited for a shooting star that might indicate that I'd been heard. Nothing appeared.
I survived my Armageddon because one Chicago friend called me every evening. She repeated the same message every call, "Tim, it was not your time to die. God has a mission for you."
Starting local epilepsy support groups
Making a long story short, I started grad school at Southern Illinois University-Carbondale the next year. My old friends at the Epilepsy Foundation of Greater Chicago trained me on how to start a satellite support group for them since many Chicago students were enrolled there. It was smaller than anything in Chicago, but the members and I found it refreshing!
Years later, life brought my wife and me to Atlanta. Despite her care, I needed someone who could relate to my problems. Since there weren't any support groups to be found, I started one. The atrocious Atlanta mass transit has been an obstacle, but in over a decade, I bet our meetings have helped over 50 people.
People savor the comradery, and we've occasionally had guest speakers, including stress therapists, EMTs, career coaches, dieticians, and a safety dog trainer. The pandemic forced us to meet virtually, but that brought in epilepsy sojourners and caregivers from 6 additional states!
Feeling understood and finding new resources
It was at a support group meeting when most of us first watched a safety dog do its job when a member's seizure interrupted things. It was at meetings when I first heard of VNS and RNS implants and lobectomies, and could observe members' progress monthly. It was another member who first made me aware my computer display might be one of my triggers. And another member is currently exciting us about working with specialists who say that epilepsy can be caused by problems with her immune system!
It might meet just one night a month, but we've developed friendships that go beyond and have helped with job leads. NO ONE is feeling like a shipwrecked castaway. Sure, we continue having down days, but we get solace and encouragement from one another. And we now end it with a prayer that we're not fighting epilepsy alone.
Where to find epilepsy support groups
Be selective. I've visited some smaller support groups that were nothing more than pity parties! Members whined about how bad their last seizures were. It's expected to talk about those times, but others should take an interest and offer suggestions that might make a difference.
Your state's Epilepsy Foundations, medical schools, and your epileptologist are good places to start inquiries for a support group. And when you find a good support group, you might just discover that you've infiltrated the Avengers!
Is increased screen time a seizure trigger for you?