Putting Out The Fire With Gasoline

Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean. Maya Angelou

When India’s admitted to the hospital in late April I understand instinctively she’ll be there a long time. (In fact, she stays forty-seven days.) The massive seizure she’s recuperating from has left her exhausted and paranoid. Since December, her tremor has been so debilitating she hasn’t been able to walk, stand or use her hands. Sometimes it even affects her voice. Her neurologist is eager to use this stay as an opportunity to study her and to experiment with some new treatments. It’s becoming strikingly clear that her current regime is not working.

The first drug India tries appears promising at first. She’s quickly able to transfer herself from her wheelchair to her bed without assistance. But her speech is very slurred. I tell her she sounds drunk which she thinks is hilarious. I hate it. India’s usually very articulate. Always has been, even as a toddler. She could talk long before her contemporaries. In the end this medication is scrapped because it causes an increase in absence seizures.

The Fourth floor is curiously quiet so India’s allotted a bed in a huge room that usually sleeps four patients. Her only roommate is a ten-year-old girl. For the sake of privacy I’ll call her Bella. The first time I see her it’s mid-afternoon and the room is flooded with sunlight but she’s fast asleep. She reminds me of one of a porcelain dolls with her pale, luminescent skin, rosy cheeks and long auburn hair. Her mother says she’s recovering from pneumonia. This is complicated by the fact she’s also recovering from a coma that lasted close to three-weeks. She can barely lift her head. She communicates in moans. India’s so out of it she doesn’t notice Bella at first. Then one day she whispers, “Why doesn’t she speak?”

At night Bella’s mother crawls into bed with her and wraps herself around her. Her father sits at her side all day, stroking her face and hair. The couple is divorced but cordial. He has custody and comes from a small town far away with limited resources. She lives in another city where she’s attempting to finish her education. They’re young, unsophisticated, and stuck in a situation that even the most educated parents would find daunting. The father seems unable to follow the directions given to him by the experts. The mother’s tone when she speaks to her child is loving but when she speaks to the staff it’s demanding, shrill. She doesn’t believe that the hospital is doing enough for her daughter. She tells me that it’s important to be the squeaky wheel. I understand that it’s more than that. Her heart is broken.

One afternoon as I’m on my way back into the room, I overhear one of Bella’s healthcare workers say to the mother. “You’re very angry. Why are you so angry?” I’m surprised by this. It seems to me it’s pretty clear why. Not long ago, her little girl was healthy and now she barely ever wakes up. Why wouldn’t she be angry?

These days I feel a lot of anger. After all, here we are five-years later and nothing has changed. In spite of a regime of round-the-clock medications—Mark and I take turns delivering her 2 a.m. meds—visits to countless specialists, and spending two years on the MCT oil diet. A gruelling version of the ketogenic diet that requires the patient stay clear of carbohydrates and take MCT oil every two and half-hours. When we finally decided to stop this treatment at the end of May, India was taking two-hundred and twenty-two grams a day. Compare this to drinking a tall boy of olive oil. India rarely complained that she couldn’t eat candies. However there were times when it took up to two hours for her to take the oil.

Illness is an expensive business even with universal healthcare. It’s fraught with hidden costs. Take parking for example. During India’s last stay our parking cost over $200.00. This was with a discount card. The regular rate is $611.00. We only found out about the card by accident. The hospital administration assumes everybody knows. India’s latest drug costs about $800.00 a month and is not covered on the Quebec plan. We have applied for special status as a patient of exception but I’m not sure we will have to. It doesn’t work. In fact, it lengthens the time her seizures last. In the end it’s not the financial burden, it’s the psychological repercussions that take the greatest toil. For me, it’s the strain of not having a diagnosis. Of course, theories abound. But she doesn’t seem to fit any completely. Why does she have so many different kinds of seizures? What is this tremor that stops her from walking and drawing? And why can she throw and catch a ball perfectly but not use a spoon?

Naturally each time India visits a new specialist or begins another treatment I allow myself to hope that this time we will find the answer. I should try to guard my emotions, the constant ups and downs are difficult to endure, but I can’t help myself. If I had a diagnosis obviously it might be easy to accept or understand my daughter’s condition and go about making the necessary preparations. Instead it seems to me that we’re perpetually stuck in limbo, balancing precariously on the boundary of Hell, hoping for some sort of reprieve.

Thankfully because of our most recent hospital stay, we can now rule out a list of progressive and metabolic diseases. In medical dramas like “House” or “Grey’s Anatomy” test results return immediately, in my experience they can take months. Much of India’s testing was done at labs overseas. We waited a year for one result. This disease, which thankfully she didn’t have, had a particularly horrible set of symptoms including dementia and blindness and a very short life expectancy. It seems to me it might be important to get those particular results quickly. Presently we’re waiting for the results of an experimental genetics test that may help us identify India’s illness. I try not to dwell on this. Occasionally though, I let myself to daydream this test will lead us to right medication. But most of the time I just worry.

The little kitchenette on the fourth floor is where the mothers of the regulars meet. We chat as we reheat meals, pour glasses of water, boil water in the microwave. (Rumour has it there was a kettle but it was stolen.) We lean against the counter and talk openly about failed treatments, drugs, doctors, and the system. These are the first talks I’ve had in years with other mothers that are completely comfortable. Here nobody ever asks me how India is doing in school. They understand that sort of thing is the least of our worries.

The other day I overheard a new mother tell her friend that she was getting rid of her cat. She said she had to. Sometimes she got mad at it and she didn’t want her baby to be exposed to anger. It took all my self-discipline to keep quiet. What the Hell is going to happen the first time someone shouts at this child? Or, when the child first experiences rage? I find this kind of approach to child rearing—and indeed life—terrifying. Anger has a bad reputation because we link it with violence but it can also be life altering. Not that long ago, I read in the journal of the American Psychological Association that many psychologists believe constructive anger can be a catalyst for transformation especially in situations where there’s injustice. It can in writer, Allen Elkin’s words be “activating and mobilizing.”

At times I find living in a society devoted to life lessons and positive slogans very demoralizing. This is especially true of slogans that follow a philosophy of karmic justice. Not that long ago, when India was very ill—her seizures were so constant she couldn’t finish a sentence—there was a post on Facebook that read something like, “You get what you deserve.” Even though I don’t believe in karmic punishment it really upset me. This kind of statement basically implies India deserves to be sick. As a friend of mine who’s suffered more than her fair share of loss, recently said “Sometimes bad stuff happens and we don’t know why.” Don’t get me wrong, I’m not against trying to find the good in a bad situation or, being an optimist. But believe me, there’s absolutely no life lesson that I could ever want to learn at the expense of my daughter’s health. Sometimes there is no upside, no matter hard you look and the pressure to find that upside can leave the wounded party feeling even worse. At times it feels as though it’s placing the blame on the victim themselves. As if it’s their fault they’re sick because they didn’t have enough faith, hope, or some kind of higher connection with God.

So here we are in July and yes, we’re still in limbo. There have been some improvements. Intellectually India is more her usual self. She’s back to telling jokes and trying to learn Korean. Nights are difficult. She’s often plagued with worry. She scrutinizes every sensation in her body, scared that it’s a sign she’ll have another big seizure. We try to reassure her but I don’t think she believes us. Why would she? We were wrong about her last attack. She still can’t walk or use her hands. Often she asks us why she can’t walk? I wish I knew the answer. It makes me angry that I don’t.