At the end of March, India had an EEG. Her head was swaddled in bandages so that she could wear her glasses without disturbing the wires. The scene reminded me of the old film, Dark Victory staring Bette Davis. It’s been ages since I saw the movie but it’s pretty typical of the era. A beautiful heroine is struck with a terrible disease, but still manages to look stunning despite the bandages. Her scarlet lipstick perfectly applied. Needless to say, in this kind of movies, the heroine always has a handsome love interest. India in contrast, much to her regret, I’m sure, is always accompanied by her parents. Still she’s very relaxed and even naps briefly. This is unusual because she hates the hospital. To put it in context she’d rather go to the dentist.
During the procedure, India lies on the bed and watches TV. Along with her brain activity, the technician records her muscle and heart activity. The amazing thing is India rarely complains about her illness and for the most part, she’s pretty happy-go-lucky. I take this for granted but I shouldn’t. I’ve worked with enough teenagers and children over the years to know she’s special. Hell, I’ve heard adults including myself, complain and fuss over a lot less than what she’s has to deal with.
I sit in the chair next to India and knit, while Mark sits behind the technician and watches the computer screen. Usually India’s EEG’s look as if someone has taken a black marker and scribbled violently. Mark tells me this one seems subtly different. It has more white spaces. His visual ability is much keener than mine. All those sharp black lines mean nothing to me. It’s because of his observations that India is on this new drug.
Near the end of the session, India’s neurologist joins us. He’s a kind man and genuinely does his best to make her feel comfortable.
He says, “I’m sorry, India I’m going to have to be mean to you.”
I don’t think she believes him because she sits up and smiles “Hey India, do you remember how we talked about an operation?”
She eyes him warily. The neurologist leans against the door. “Can you tell me what 200 times 78 plus 18 equals?” India head nods on her chest.
“Hey India, add this for me 867 plus 98 plus 4 times equals?” She opens her mouth to speak but falls slightly over on her left side then straightens herself up.
“Okay, let’s try another. How about 65 times 32?” This time India falls completely over to the side.
India’s neurologist continues asking math questions for about five minutes. He’s not really interested in the answers, just the seizures the stress and the calculating provokes. We know math is a trigger. What we don’t understand completely is why. Afterwards he apologises to India, sits down at her side and holds her hand. They sit like this for a minute or two. We make light conversation. India relaxes.
India’s neurologist explains that while he was holding her hand he was monitoring the way her arm moves during her tremors. He thinks the tremor works the same way in her legs. This means her arms and legs constantly shifting side-to-side which would make her feel as though she’s always about to topple over. There’s a psychological component as well. This is to be expected. I might have given up on walking long ago if I were her. I’ve lost count of the accidents, the odd-shaped bruises on her legs and arms, the egg-like bumps on her head. It’s strange, in many ways India’s in the best shape she’s been in for a very long time. In the morning, when she wakes up she’s no longer subjected to the ferocious jerks that threw her all over the bed. Plus, her sense of humour has returned and she has more energy. The new drug is definitely working. So why can’t she walk? Or use her hands?
Recently I found India’s signature on one of her school assignments. She’d obviously laboured over it but still I could see the shakiness of each letter. This is the girl who learned violin at four and climbed highest up the rope at gymnastic camp. Now her hands shake as if she’s got Parkinson’s. In a way I find the fact she can’t use her hands even more discouraging than her inability to walk. At least, if she could use her hands she could draw again. She loves to draw. This Friday we were back for another EEG. This time our neurologist and his colleague, a specialist in movement disorders, wanted to film India so they could study her tremor. She was in a great mood so she spent most of the time singing with her IPod. The technician was pretty impressed with her voice. The entire thing took twenty-minutes. Apparently it’s a legal requirement that an EEG last that long.
After about an hour and a half, India’s neurologist returned with a plausible theory about the tremor. A second form of epilepsy, one that affects movement. This would explain why every time we find an answer it seems like a new symptom pops up. For a while I was afraid her disease was morphing. But it could be more like we’re on an archaeological dig. We’ve been through the first ten feet of earth and now we firmly entrenched underground. Finally we might find answers. India’s neurologist explained there’s a drug for this illness but he wants to confer with the team at Sick Kids first.
I’m glad he decided this. Over the last four-years, we’ve been through so many drugs and so many different diagnoses. Who knows if any of them have been correct? Perhaps this is the reason all the treatments have failed?
If India really was a character in an old black and white movie or this was an episode of a medical mystery program like House, we’d have our answer by now. In reality it takes time. There are specialists galore but generally it takes six-months to get an appointment. Then, when you do finally get an appointment it’s not always a good match, or maybe, they aren’t very good at their job, or, they don’t have the right expertise. Don’t get me started on waiting for test results. We waited over a year to find out whether or not India had a terrible progressive neurological disease. Luckily the results came back negative but I’m certain the stress of waiting shortened my life considerably. So where does that leave us?
Today India walked from the car to our front steps. We have no idea why. She hadn’t walked since December 23rd. Mark and I have hundreds of theories but we can’t be certain why she could do this. On Thursday we are meeting with the team at Sick Kids. It would make me really happy if they could give us some answers but I’m doubtful. On the other hand, India told me she planning on trying out for the golf team. Perhaps in the end, she’s the only one with the answers.