“Oh these little earthquakes. Here we go again. These little earthquakes. Doesn’t take much to rip us into pieces.” Little Earthquakes, Tori Amos
Usually I don’t allow myself to speculate whether India will grow out of her epilepsy or be cured. Nobody knows for certain. We don’t even have a real diagnosis. I figure astronomers know more about the stars in our atmosphere than most neurologists know about the brain. In the future I believe we’ll look back at how we treated patients with neurological disorders such as epilepsy and tourettes and be ashamed of our lack of insight.
When I try to visualize the inside of India’s brain I often imagine something like “Journey to the Centre of the Earth.” The 1959 version of the movie with James Mason, not Brendan Fraser. I imagine underground oceans, mammoth mushrooms, subterranean caverns and underground oceans. Each seizure as an earthquake.
In many ways living with a sick child is not that different from that movie. Often I find myself wanting to scream the way Arlene Dahl does when she spots the fierce dimetrons.
But the first three weeks of September were different. If I were to compare these weeks to a movie. I would say “Snow White.” The nice part, before the poison apple. When Snow White and the dwarves were content. They ate nice meals and relaxed in the evenings.
This was due to two factors: India was in the best shape I’d seen her in for a long time, and school. She loved it. Things were so good I allowed myself to feel hopeful. I believed we’d finally had a breakthrough.
Every morning as I drove India to school, I felt like the mother of a kindergartener on her child’s first day at school. Back at home I was so worried I couldn’t get anything done. I kept expecting a call from the school secretary telling me she’d fallen down the stairs or was in an ambulance screeching its way to the hospital.
Things just seemed to get better and better. One day India came home from school and announced she’d been playing soccer. “I was goalie,” she said. “Everyone kept asking me how I learned to play so well.” Apparently a lot of the other girls were scared of the ball. They couldn’t believe how she dove for shots and threw herself on the ball. She told me, “Mum, the thing is I’m not scared of hurting myself. I fall all the time. I’m used to it”
I was so happy that she got to play soccer and that she did well. It’s the kind of thing that for most parents is run-of-the-mill but for us is a rare treat. One of the things I’ve begun to realize since India began school is how our conversations are always dominated by her illness. Days are measured in seizures. How many did she have today? Did she fall? Did she hit her head? This is even true with friends. Don’t get me wrong, I love that they are concerned for my daughter. I’m grateful that I have such thoughtful friends. It’s just I envy the ease in which they tell me, “Oh John’s at the mall with his buddy” or “Sandy’s taking ballet on Saturdays.” This is what I want for my girl and for three weeks it seemed possible.
Then two days later it happened. She fell and whacked her head hard. I raced to her school in fifteen minutes. I drove at 120 mph the entire way. I am a phenomenally slow driver so this was a first. She was still crying when I got there but I don’t think it was from the pain. It was the disappointment. Like me, I think she’d begun to believe we’d killed the beast.
The reason she’d fallen was she caught a run-of-the-mill stomach flu. Unfortunately this meant she couldn’t keep down the M.C.T oil that wards off the seizures. So in the course of a day she went from being a healthy teenage girl to a girl so tortured by seizures that she was unable to walk or hold a knife or fork. The seizures were much longer than usual so it was harder for her to recover from them. A couple of times I considered taking her to CHEO. She seemed dangerously close to being in a state of status (constant seizing).
Knowing what I do about film. I understand that there’s no need to lose hope. The first three weeks in September were simply what script writers call “The First Culmination.” This is the point in the movie when it looks like the main character is going to achieve his or her objective and suddenly everything goes wrong.
So where are we now? The midpoint. A place of reassessment. In an action movie this is when we’d start stockpiling weapons or creating a new strategy to destroy the enemy. In reality, we deal with our disappointment and think about what we’ve discovered, which is that India may not be cured yet but the M.C.T oil is definitely working. If so, there may be other treatments out there as well that we haven’t heard about yet. After all, we have to prepare for the “Plot Point”, that point in time when our heroine is forced to face her foe.