“Oh My Gosh, my life with Seizures has been a roller coaster!” If you haven’t heard this metaphor before, just wait a few months. I promise you, you will.
For those that have made this comparison, I ask, “Have you ever seen a person come off a roller coaster?” They are happy; ecstatic even. It was an exhilarating experience for them and their adrenal glands. They can (and will) emotionally explain to everyone around them all of the feelings that were going through their mind while on the ride. In short, it was a great experience for them and they would do it again in an instant.
After having neurosurgery in 2017, I’ve just recently arrived at my three-year seizure-free anniversary. I can honestly tell you my almost thirty years with seizures wasn’t a roller coaster ride. It was just a slow and steady grind. If I were to choose an amusement park ride to describe my Epilepsy, I wouldn’t choose a roller coaster. Instead, it was the Bumper Cars.
Some people might not even know what Bumper Cars are. They were all the rage in the 1920s. The same decade in which the most used tool in any Neurologist’s box, the Electrocephlagram, was invented. People clammer into small electric-powered cars only to go bouncing off one another when given the go-ahead. To ensure that no one rages their vengeful tendencies on the ride, proper turning for each car is disabled.
I was diagnosed with Epilepsy in 1991. I lived through almost thirty years of seizures. I had at least a tonic clonic seizure every month for almost thirty years. Most of my life I averaged a seizure each week. There were even long stretches where I had one (or even multiple) each day. I learned to succeed despite my seizures. A successful career attained. A beautiful family created. A life well-lived.
Like anyone else facing a chronic illness, I had the lows. I even had some happy highs. On the other hand, the track was never laid out before giving me any indication of which direction was to come next.
People will stand baking in the hot sun for an hours for just the chance to ride some roller coasters. No one ever wants to go on the bumper cars. In the agenda of an amusement park attendee, the Bumper Cars are a checkbox only ridden after absolutely everything else has been done. The Cars are only there so one can prove to the world that they have done absolutely everything in the park. That is, if you can find the actual ride.
Far behind the multi-million dollar roller coaster tracks, the bumper cars sit in the dim back-alleys of the oldest sections of the Amusement park. They’re often sandwiched between unused arcades and mazes of games of chance. Games that promise great riches to those that have never played, but heartbreak to those that have. When the ride isn’t broken down, the potential riders in line look fondly at the rest of the park rather than anticipating their ride.
My Epilepsy was intractable. It couldn’t be solved through Anti Seizure Medications (or ASMs). I spent almost twenty years trying over a dozen different medications before my doctors and I realized that. During that time, my life hit every bump on the ride. Back in the 90s I bumped into Neurologists who were incredibly confused. I bumped into other people with and without Epilepsy that suggested that I couldn’t live a successful life with intractable seizures. I bumped into medical providers who for a variety of reasons denied my claims for medication and treatment. I even bumped into more than a few snake-oil-salespeople who promised cures for just a small upfront fee.
It took me years to realize that just like in the Bumper Cars, I had very little ability to steer my life through seizures. Of course, you can find a great doctor, take your medication, get your sleep, and mind your triggers, but with intractable epilepsy isn’t controlled. Seizures will hit you at any time. In fact, they will hit you most often at the most inopportune time. I wasn’t steering the car per say, I was just there to ensure that it didn’t go around in circles, like the car of a young child that has finally convinced their parents that he can ride alone.
But more than anything, I got bumped by a whole lot of people like me. People with Epilepsy that didn’t understand how to manage their seizures much less thrive under an Epilepsy diagnosis. Our doctors explained the science the best they can, but we all found that knowing Epilepsy is different than living with Epilepsy.
I found there wasn’t a real source that taught people how to thrive with (and even despite of) their Epilepsy. That’s one of the reasons I started Brain Ablaze.
People riding on the roller coaster receive cheers from the dropped jawed onlookers, no one ever pays attention to the people on the bumper cars. If they did, they would notice that as people get off they are banged and bruised. No one leaves the bumper cars excitingly exclaiming “Hey! Let’s go do that again!” The just slowly stagger away holding their head; saying to themselves, “I’m glad that’s over.” and wondering “What should I do next?”.
I can’t promise that your seizures will be a roller coaster or the bumper cars. I can’t promise that with every new low there will be an exciting new high. I can’t promise cheers for a ride well spent.
With Brain Ablaze, I strive to give you that feeling that a roller coaster harness provides. You know the one. The one that makes you feel safe when you remember that there are others before you that have ridden the same ride and came out alive.
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