Week 2 of my 12-year-old son’s six-month ordeal has me sitting in Neurology at SickKids-the Hospital for Sick Children-in Toronto, watching a technician hook a medusa’s worth of electrodes to his head. Christopher has been experiencing “undiagnosed collapse episodes” and the neurologist wants an EEG, a test that will measure the electrical activity in Christopher’s brain.
“We know almost nothing about the human brain,” the technologist blurts out at one point, not looking up from his work.
I should not find this reassuring, but his calm determination has me nodding. Already, Christopher has been to the ER twice. He’s had a spinal MRI, a shoulder X-ray, a full cardiological workup, blood tests-and many collapses.
Christopher describes them like this: “There’s a feeling like electricity that starts in my shoulder or neck and goes very fast everywhere. And then I fall.”
After each fall, he tremors back to equilibrium. The collapses don’t last long, but they are frightening, and two weeks in with no explanation, Christopher is already a much more careful person. And I am a nervous wreck trying to put on a brave face for my son.
Modern medicine rules things out. It tests and, by this testing, it tells us what he doesn’t have. Meanwhile, I am becoming a person with one topic: lack of diagnosis. Christopher says to me, “What if you have to take care of me for the rest of my life?” I am so sad he has to think this and I am mortified he may be right.
The doctors hold a meeting at Sick Kids during which they tell us they’ve found nothing wrong with him medically. This news is a double-edged sword. They believe there is a psychological reason for the episodes. Christopher plays AA hockey. Perhaps the expectations are too much.
“Really?” my husband says to the neurologist. “But we certainly haven’t put pressure. It was always his idea to play-never ours!”
“Maybe that’s it, then. The conflict.”
Christopher undergoes a full psychiatric assessment. The report states there is no reason to believe his collapse episodes are psychogenic in nature.
But a psychiatric issue is arising. Without a diagnosis-a reason-Christopher becomes panicked. He can’t go to school. And though many of his friends and teammates visit, this begins to stress him out so much that his collapsing intensifies. When people call, he discourages them from visiting. He says he is too tired.
In that first month of uncertainty, Christopher stops eating and drinking. He is terrified of going to the washroom on his own. He loses 11 pounds. He prefers not to leave the house. He won’t walk. At home, he doesn’t want to move from the couch or sit up. He stops using his left arm. To avoid falling, he will only eat lying down. He is collapsing between two and six times a day.
In between collapses, I start to gather hope. Four hours! I call my husband, astounded Christopher has not collapsed in four, five hours. And then he falls, and so does my heart.
I frequently ask Christopher, “Was there nothing you can remember that happened?”
Eventually this story emerges: “I was on a breakaway in a team scrimmage the day before the first fall. Another player threw a stick. He took me out. I didn’t see it. I fell on my left shoulder and careened into the boards. My head thrashed back and forth. And then I stood up.”
“Why didn’t you tell me?”
“I wanted to play. I was fine.” This is the mark of an athlete, apparently. They hide their wounds.
Another psychiatric assessment. Now he is diagnosed with “something akin to post-traumatic stress disorder,” or PTSD. Though I am thankful for the diagnosis, I am told it will be many weeks, maybe months, before Christopher will get an appointment with the psychiatric team at SickKids.
Christopher begins to cry out in the night. I wake and think he is dying. In a sense, he is. He is a rail. His left arm has atrophied, and he has little muscle tone in his legs. His back and forearm grow silky black hair, and when I look closely at it, I realize his skin reeks. It smells like animal rot. My son is rotting. I am frantic waiting for an appointment. How can I watch this and not act?
I am a writer, and so I do what I do best. I research PTSD, trauma, panic. I discover the brain does strange things when it can’t trust body parts. It breaks contact. Perfectly good limbs simply become unrecognizable to the brain. The only way to reconnect the limb is to use it, but Christopher will only reluctantly walk half a block now and refuses to use his left arm and hand at all.
By this point I am so overwhelmed, I grasp at straws. I ask a Feldenkrais practitioner to help us. The Feldenkrais method is a mind/body technique aimed at self-awareness through movement. Luckily, this is the right straw.
“You need to massage his legs and move his hands and fingers for him,” says the practitioner. “You need to remind his brain it can trust them to work.” Then she shows me how.
And so begins our makeshift healing. I stretch and massage Christopher’s legs, ask him to stomp on the ground. I hold his fingers under running water, even though they are now so sensitive that he shrieks. But slowly the program works. He walks and runs again. He uses his arm, can hold a pencil. With the help, eventually, of the psychiatric team at SickKids, he takes more risks until suddenly, three months in, the collapsing stops.
After enjoying two clear months, a rehabilitated Christopher visits an amusement park with a new friend. I’m thrilled for him, impressed with his confidence. He gleefully tackles every antigravity ride on offer. Then returns home nauseous and dizzy. And the collapsing begins again. This relapse lasts three weeks and-heroically-Christopher never once lets panic stop him. He just gets back up and carries on.
I write an email to Christopher’s pediatrician asking whether, in light of this relapse, Christopher might have suffered a concussion all that time ago. He answers that brain injuries need not be as overt as previously thought to cause both short-term and long-term effects. He says the body can also trigger psycho-emotional stress. Still, he says, my theory is not unreasonable. He adds that the brain is “complex.”
Yes, the brain is complex. We know so little. Maybe one day science will show a deeper connection between neurology and psychology. Meanwhile, for Christopher, breakdancing has replaced hockey. “This is called a ‘get-down move,'” he said the other day, laughing as he threw himself to the floor and into an intricate handstand.
Could there be a more perfect response to the last year? To choreograph falling, in dance, and to laugh.