Today’s post isn’t about France. It’s about something that doesn’t know borders or nationalities. And the photos? I chose paths, a little wild, hard to negotiate, unclear where they lead, though hopefully to a better place.
March 26 is Purple Day, an international day for epilepsy awareness. One in 26 people will have epilepsy, and most of the time the cause is unknown.
My mom died of epilepsy. We don’t know exactly when it might have started, but probably, as for 33% of seniors who develop epilepsy, came after a mini-stroke or strokes. When she started having seizures, we didn’t even know that’s what it was, so it took a while before she got on anti-seizure medication. Even then, she went to a neurologist who couldn’t say for sure that she was having seizures. She had no memory of seizures. She didn’t have dementia, either; she avidly surfed the Internet (she even said it that way) to do genealogy research.
She even had a seizure when I was right next to her, and I didn’t know it. The day after my dad’s funeral, I slept by my mom, spooning and giving her the cuddles I’d withheld in my quest for independence. Children are so hard to their parents. It wasn’t until I became a parent that I understood that parents’ babies will be their babies no matter how old they become.
In the finality of the funeral, she must have felt so alone and adrift. So I held my mom as if she were my baby. I eventually rolled over to sleep on my back and when I awoke in the morning, she was snoring away, so I let her sleep. But when a few hours later she was still sawing logs and we needed to go, I wasn’t able to rouse her.
Even then, it seemed like a seizure, but it wasn’t for sure. There’s no blood test or scan that can say definitively. The intensive care doctor said the only way to be sure was to see it happen. Indeed, my mom had another seizure in the ICU, and the doctor was there to film it. It lasted 13 minutes and still haunts me; I saw her have others, too. There’s nothing you can do during a seizure. The doctor told me not to even touch my mom during the seizure.
Lest this all sound misleading, I was barely around for my parents, living as I do across the Atlantic. My siblings, however, were devoted to them and checked on them nonstop. The real heroes.
Ironically, two years earlier, during a trip home to see my parents, who were still fairly independent and living in their house, I was listening to NPR on the car radio and heard a man talk about living with his wife’s epilepsy. It was so wrenching that I pulled into a parking lot to give it my full attention. The show is The Moth, available as a podcast, and the particular episode was titled “Me & Her & It,” by Peter Aguero.
For Purple Day, check out how you can make a difference on the Epilepsy Foundation’s site. And give your parents lots of cuddles while you can.