Last week, California-based journalist Paul Karrer published this commentary ( 4-minute read) that reminded me of Liam. What did this middle-aged former teacher have in common with my 17-year-old son? They both have parents with epilepsy whose condition forced them to take snap response action steps—the kind of decisions that only an adult should have to make.
Mr. Karrer describes a day when his father had a seizure while driving them on a smallish road, as an elderly man with a cane walked toward them. Nine-years-old at the time, Karrer described his father’s head suddenly slumping into his chest while at the wheel. Karrer responded by slamming his left foot on the brakes to stop the car, smashing their heads against the windshield. That was the first seizure Karrer witnessed his father having. Liam was about the same age when he witnessed the last seizure I ever had. We were at home in the living room, my husband, Mark holding me on the couch, as I fell into the throes of a tonic-clonic (a.k.a. grand mal) seizure.
“Liam, call 911,” Mark ordered. The last thing I remember from that evening is Liam expertly articulating the urgent situation on the phone. I’d had two brain surgeries the previous year, which ultimately got my seizures under control. That seizure in the living room was due to a medication taper my doctor agreed to let me try, which turned out to be a bad idea. While that was the last seizure Liam saw me have, he and his younger sister, Amelia witnessed several over the early years of their lives, mostly smaller focal impaired awareness (a.k.a. complex partial) seizures.
Witnessing your parent out of control is a traumatic experience for kids. Being asked to take control is even more so, which is why I opted for the elective brain surgery in 2014 that eventually stopped my seizures. I documented that wild ride in my memoir, Seizing Control, and although it was glitchy, it was worth the trip, as I’ve been seizure free over eight years now. I imagine Paul Karrer in the car, think of Liam and Amelia, and my heart goes out to young Paul.
I can also sympathize with Paul’s father, whose name wasn’t shared, so I’ll call him James. James apparently had uncontrollable seizures over the years. He worked full-time much of his life and had a successful career as a teacher and subsequently school principal and he had a family. Like me, James did his best to lead a full life, despite the challenges his seizures presented. Where we differed is that he wasn’t always transparent with his medical providers about his seizure frequency. He claimed he was seizure-free for the three months required by California, so he could obtain his driver’s license. This decision ultimately cost him his life at age 67, as well as the life of another involved in a car crash that occurred when he had a seizure behind the wheel. As Mr. Karrer said in his commentary, James “had no business driving. He killed other people.”
While I wholeheartedly agree, my heart also goes out to James. He wanted to do everything despite the seizures. I never got behind the wheel until two years after my surgery (per my doctor’s suggestion), but I understand the desire to push past the seizures. Although I never drove, I sometimes bicycled in the city alone, a choice that irked some family members. I was my children’s primary caretaker, frequently alone with them in their younger years. They witnessed multiple focal impaired awareness seizures during that time. When the seizures got more severe, I knew it was time for the drastic brain surgery step: Repeatedly subjecting them to that scary circumstance would inevitably lead to emotional scarring. Perhaps I am more practical than James was, but just as I hope my children can forgive me for putting them through the seizure-witnessing-wringer, I hope Mr. Karrer has compassion for his father’s story.
I believe he does, based on the third person he mentions in the commentary, the bank teller who helped him close his father’s bank account. Apparently, when he shared the cause and circumstances of his father’s death with her, she disclosed that she was a mother with epilepsy who drives sometimes, and that “having an accident while driving was her greatest fear,” which caused them both to breakdown crying in the bank.
I can also relate to the bank teller, whom I’ll call Cindy. While I never drove pre-surgery, I knew that seizure-witnessing was not good for my kids. Based on how my seizures felt, I took a chance and assumed that when I had seizures while alone with them, I’d recover quickly enough to ensure their safety. My assumption turned out to be correct, thanks in part due to the kindness of strangers who didn’t take advantage of us when I was in a seizure’s grip (and sometimes even called medics). Apparently, Cindy chooses to take a chance and get behind the wheel with her kids in the car.
Although I never did that, I know balancing parenting and uncontrollable seizures is a difficult tightrope walk. Given the risks I assumed, I am not one to judge Cindy, but I hope the tears Mr. Karrer brought to her eyes were indicative of an “aha” instant. I want Cindy to move somewhere with good public transit and stay off the road until she’s completely seizure-free, lest she put her and her offspring in a horrible situation like the ones Mr. Karrer described. I’ll never know, of course, but perhaps Mr. Karrer’s story can serve as Cindy’s epiphany moment, keeping her and her children safe.
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