Epilepsy Means to Me

I’m usually late to parties, and last Thursday it was Epilepsy Awareness Day. So I’m arriving today. Here’s “what epilepsy mean to me,” as they say.

Epilepsy means that Fiona and this kit are never separated.

Sealed, rectangular Tupperwear container with plastic syringe inside.

Epilepsy means this kit goes into the diaper bag, into my purse, wherever Fiona goes. Because inside the kit is the medicine to stop a seizure if it happens and if it goes on too long.

Epilepsy doesn’t mean that a person who is seizing can swallow his/her own tongue. I first learned this in a Cincinnati hospital after Fiona’s first seizure. That is one enduring myth, I thought. I was 33.

Epilepsy means that, when my husband and I went on a date the other night, and I found this Guide to Troubled Birds,

Book: Guide to Troubled Birds

 I thought this bird was perversely funny. 

Illustration of a bird face. Caption: “My mating dance is mostly seizures.”

 Epilepsy means that my Facebook feed always contains a few posts about kids who’ve just had seizures. And sometimes these seizures have gone on too long, and the medicine (diazepam) in the kid’s kit hasn’t stopped it.

Epilepsy means whenever Fiona has a fever (like today) I have to consider the possibility that she could have a seizure.

So today, epilepsy meant that when I drove Fiona home from school, I had to turn the music down very low so I could listen for a certain rhythmic breathing that means grand mal.

Epilepsy means I still had to keep the music on. For my sanity.

Epilepsy means that when I found these notes I took from a conference, held last year for families raising people with my daughter’s syndrome, I laughed at the top note.

Screen shot of iPhone note, reads: Bretsky beer distributor; Clonic is the shaking part of the seizure; Tonic is the stiffening part; Atonic = drop attack; partial seizures effect only some of the brain… Showed video of faintest eye twitching. .. Reminded me of Fiona’s half blinks when she was little; Phenobarbital for tonic clonic seizures.

 Epilepsy means the top note is of the utmost importance. The closest place to buy beer. Epilepsy means that the parents of the kids with epilepsy later gathered together to drink those beers and not talk about epilepsy.

Epilepsy means that when Fiona is feverish, my husband and I are very, very tired because she sleeps between us, beating us up all night with her 18-pound might, but at least that way we might catch her seizing.

Epilepsy means tonight’s sleep will probably suck.

Epilepsy means I know kids with Fiona’s syndrome who’ve lost language from seizures, who’ve lost aspects of their personality from seizures, who’ve died from seizures.

Epilepsy means 1% of all children in the U.S., 1.8% of all adults.

Epilepsy means I often carry a low-grade fear of the 2-hour seizure. The status epilepticus event. The seizure that will not respond to the kit or anything else, that stays and steals and steals.

Epilepsy means I am unequivocally pro medical marijuana. It has worked in controlling cases of refractory epilepsy when no pharmaceuticals will.

Epilepsy means I very occasionally hear—and this is weird—about the seizure that changes a kid’s life for the better: new babbling, greater core strength. Like the seizure hit a reset button.

Epilepsy means we don’t know. As in, when the very first neurologist I encountered told me to give Fiona the emergency medicine at the 5-minute mark if a seizure lasted that long, and I asked why, and she said, “Because we think brain damage can occur after 5 minutes. But really, we don’t know.”

Epilepsy means that after I gave up Facebook for several days, where I am friends with many parents of kids with Fiona’s syndrome, I logged back on and the first post I saw was about a girl I adore who was just hospitalized for a status event, which had stopped, but now the parents were waiting. Waiting for the girl to wake up, waiting to see what damage the seizure had done.

So epilepsy means that—even though my husband and I are trying to wean our daughter from night snuggles, which she demands in order to fall asleep and which I especially resist because they take from both of us the precious 30 minutes we might have to read a book or watch a Mad Men episode or do something else adult-like and leisure—epilepsy means that we sometimes remember this life’s slipperiness, this ground’s shakiness, and one of us snuggles our girl to sleep anyway.