For several years, my friends have been suggesting I write about my daughter, India’s struggle with epilepsy. Originally I rejected the idea. I wanted to keep my creative work separate from my life as a mother of a chronically ill child. In hindsight, I believe the reason I didn’t want to write about it is that it’s painful. But for that very reason I’ve decided it’s important that I pursue it. As Gordon Lish said, “Discover the place of greatest jeopardy.”
During the Middle Ages, epilepsy was known as the Falling Sickness. This description is the best I’ve ever found for what India suffers.
India’s seizures present themselves as: ticks, nods, fluttering fingers and hands, as well as jerks of various intensities. Sometimes these are so violent she falls out of her chair or her legs buckle from under her. Once she fell forward so violently she smashed her front tooth. Yesterday, she fell at least five times.
Our home which I have always adore is constantly alive with danger: our claw-foot bathtub is a reminder that she could drown, the hardwood floors too slippery, the long staircase certain death, even eating has become dangerous, the cutlery, the glasses, the hot steaming food.
Once we ordered take-out Indian food and she fell face first into her butter chicken. Her father, Mark and I tried to make a joke out of it, laugh about it, but in reality watching your child hurt themselves constantly takes a toll. Sometimes I want to look away because I can’t bare to see her hit her head again.
India’s epilepsy is intractable. There is no magic pill. At present, we are attempting to control her seizures with the MCT oil diet. This means on top of being sick she can’t have any carbs.
On bad days, she has thousands of seizures. On average days, hundreds. India’s very good natured about all this. Before she got sick she was the girl who climbed highest up the rope. Now she spends hours drawing and is learning photoshop.
Once a month, she has five days when she’s just an average fourteen-year-old girl, who goes to film camp and eats lunch in the park with her friends. Those are the best days.