“Dad, my body is a lot like the country of India. Parts of it are at war like India and Pakistan. And it has a lot of earthquakes.”
India Taylor, September 2011
We’ve just returned from New York city where we spent five days. I visited the city twice in the eighties but mostly hung out in museums. Back then, it didn’t register with me that I was on an island. What stuck with me, was the skyscrapers. It was like walking through a mountain range. When I looked up at the sky I could just make out a rectangle of blue. The rest of the sky was blocked. This was different from England where I’d been living. There I was keenly aware that I lived on a small green island with very little room to spare.
This trip my first glimpse of Manhattan was from New Jersey. On the ferry across to Midtown Manhattan, I sat on the upper deck and watched the late afternoon sun shimmering on the city’s buildings. Some might find it strange that Mark and I had come to New York to rest but we love big cities.
Seven days prior, on the Thanksgiving weekend, I’d discovered India in her room having a grand mal. She was lying on the hardwood floor. Her body twisted in a c-shape. Her arms and legs thrashing the ground. Her mouth wide open. I was terrified but I’d forced myself to act calm. She came out of the first seizure and went directly into another. I worried that she would go into status and have difficulty breathing. I shouted to Mark and got him to call 9-1-1. I kept talking to her. I worried that she would die or go into a huge seizure and be unable to claw her way out.
Slowly she came around. At first she was unable to move and it scared her because it reminded her of her uncle’s recent stroke. Lately she worried that she’d have one as well. Though this wasn’t really a possibility it seemed plausible to her. And I understood her fear as it occurred to me as well. After all four years ago I would never have imagined the reality we were presently living. To alleviate her panic, we worked on little movements. I got her to wiggle her fingers then her toes and so on until she felt she inhabited her body again. I asked her if she could see me. She said “Like a fish.”
Minutes before the first seizure India had called out to me. Exhausted I’d climbed the stairs to her room slowly. She’d been sick with severe Kidney stone attacks for the last two weeks and the entire family was sleep deprived. When we slept, it was with one ear open in case India called out. Her attacks which usually occurred in the wee hours, were so violent she groaned with pain until the morphine finally kicked in. Plus every time I was required to administer her meds or MCT oil there was a bitter battle. She refused to take her medication or drink water despite the urgings of her doctors and her parents. What do you do when your teenage daughter refuses to take the one available treatment for her illness. Do you shout? Cajole? Bully and threaten? Plead?
The paramedics arrived faster than I’d expected. They were young, the man had dark black hair and an earring. The woman had a tattoo in gothic script around her neck that read “Such is life”. Immediately they set about assessing the situation, installing a stretcher/wheelchair carrier on our narrow staircase. At first India was terrified but the handsome young paramedic was able to charm her.
We spent eighteen hours in emergency: seven hours at our local hospital in Wakefield and another eleven at The Children’s Hospital in Ottawa. In order to transfer us by ambulance from Wakefield to CHEO India was required by law to be stabilized. This is next to impossible with girl whose seizures are intractable. So they gave her diazepam intravenously but forgot to tell her it would burn. India screamed. This is a girl who regularly endures blood tests without a word of complaint. She’s tough. Much tougher than me.
Pain can’t always be avoided, but when the nurse basically inferred India should suck it up, I lost my temper. (Previous to this procedure she’d endured two other painful procedures. One of which turned out to unwarranted.) To make matters worse, the nurse wasn’t particularly gentle and the diazepam made India exceptionally paranoid. She repeatedly asked if she was dying.
I nearly called off our trip to New York. Though I understood my parents would take good care of India while we were gone, I worried she’d have another grand mal. Luckily my friend, Pam shared her philosophy of care-giving with me. It goes like this: “You know how when you’re on the plane, how they tell you if the oxygen masks are needed you put yours own first, then your child’s? Well, then. The caregiver must be looked after in order to function.”
Often I feel as though, I’m on an island, looking across the water at all the families with healthy kids and feel sick with envy. At other times I get angry. Why us, not them. Living with illness in an odd way can make one self-absorbed. It’s lonely. I forget that I’m not the only one struggling. While we were away, Mark and I never spoke about India’s illness once. I can’t remember a time in the last four-years when this topic hasn’t dominated our every conversation. We were once again as Anne Morrow Lindbergh so eloquently said “islands – in a common sea.”
To date this last episode at the hospital was the hardest I’ve had to face. It changed how I view India’s illness. Instead of a temporary blip like a glass of spilled water waiting to be wiped up, it’s an ocean, vast and unpredictable.