So imagine, in one ten-minute stretch, hearing that you’ve got a life-changing illness, your car is being taken away, and by the way we’re putting you on medicine that may completely change your personality. Great!
Once you’re grown, finding out you yourself are the #1in26—“adult onset” is the term–is not only wildly unexpected, it does indeed stink. To high heaven.
My story: suffered a seizure on the way back from fetching donuts for the CNN Radio Network morning crew in 2006, perhaps becoming the only person ever to fall up an escalator. Neurologist diagnosed me with “onset of migraines”, which seemed odd; I realize now she was sparing me the worse diagnosis. To this day, I debate whether she actually did me a favor, or not.
Labor Day, 2012: anchoring news on WSB Radio. Did the 3:00 PM newscast, but never made the 3:30. Grand mal seizure hit, so violently I dislocated a shoulder. Often on holidays, you’re alone in the newsroom. I may well have died. As it was, two co-workers were nearby, and they very probably saved my life.
Knowing “I may well have died” is enough to get your attention, but a new neurologist immediately announced a diagnosis of Epilepsy and the news that by state law in Georgia, one seizure and you’re banned from driving for six months. If you’re old enough to read this, you know Atlanta is probably the worst city in the country to live without a car. I never missed a ride to or from WSB over the next six months, thanks to some of the most accommodating and supportive colleagues anyone could ever hope to have. At the same time, however, I had a lucrative little side business as a freelance pianist, and couldn’t possibly impose on friends to drive me all over the Metro at random times every weekend. So a sizeable chunk of my income was gone in a flash.
Meantime, a common side effect of my anti-seizure medicine is wild mood swings. Early on, upon being told there was a 40-minute wait at Mellow Mushroom, I burst out weeping. Pretty sure the greeter had never seen this reaction. Between this and a couple of random temper tantrums, I’m pretty sure my husband was ready to kill me.
It really does change your life from one end to the other. For months, friends’ eyes widen every time you stretch or take a wrong step; they won’t say it, but they’re checking if you’re about to keel over again. That sort of thing is discussed as the “stigma”, but in truth I’ve found the bigger stigma is saying the word “Epilectic” to yourself. It’s a huge adjustment.
It still stinks, and yet after getting involved with the EFGA and seeing very young kids who suffer multiple seizures every day, to the point of needing brain surgery; adults who have no support system or insurance or transportation, I do have it much better than most and try never to forget it.