The Boy in the Moon

by Ian Brown

  These injustices abound. Specialized medical services for the disabled are still in such short supply in Saskatoon, Saskatchewan, that Julia Woodsworth, a twenty-year-old with CFC who lives with her mother, Pam, and her father, Eric, has had to wait as long as three years to get a dental appointment. “I feel like at every stage of Julia’s life we’ve had to be trailblazers,” Pam Woodsworth said. “But I haven’t found there’s been a real growth in some of the options where people with disabilities are concerned.” Saskatoon is just a hundred miles east of Wilkie, Saskatchewan, where in 1993 Robert Latimer asphyxiated his quadriplegic twelve-year-old daughter, Tracy, because he couldn’t stand to see her suffer any longer. He was sentenced to life for second-degree murder. “I think, as a family, I have a lot of empathy for the Latimers,” Pam Woodsworth said to me the same day Latimer was denied parole. (The decision was reversed and parole granted months later.) “The big remaining question for me is, why isn’t our province on trial? What he did was an act of despair. That family wasn’t getting the support they needed. I’m really interested in how, as members of a civil society, we’re all complicit in Tracy’s death.”

  Now that the government in Ontario, which runs the provincial health care system where I live, is keen to be seen to be eliminating waiting times for surgery, if I want a new knee so I can ski better, I can have one in six months. If I know the right doctor, I can probably have the procedure in two weeks. Why, then, did it take seven years of looking and asking and begging to find a decent place where my son would be adequately cared for, where he could actually be the person he is?

  These days, I have a fantasy of my own. In my fantasy, Walker and people like him live in a L’Arche-like community, with the help of assistants. It’s a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn’t just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful—not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be “integrated” into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives—slowly, and without much of an agenda beyond merely being himself.

  Because in my fantasy lots of people want to visit and live in Walker’s society for extended stretches at a time. Composers, writers, artists, students, MBA types doing their doctorates in business administration, researchers, executives on sabbatical—we too can enjoy the privilege of living in Walker’s village for a few weeks or months at a time, in pleasant rooms of our own where we’re encouraged to pursue our work, our art and our studies. Our only obligation is to integrate ourselves into the disabled world by eating lunch and dinner with them, and, once a week, by giving one of the residents a bath. The rest of the time we are free to think and write and paint and compose and analyze and calculate. But by then the disabled will have done their work, accomplished their goals, and changed the way we see the world. We will have benefited far more than we have benefited them, but they won’t mind. Walker will have made his contribution, by simply being there. As I say, a fantasy.

  Months passed after Walker’s genetic tests before I stopped resenting genetics. I didn’t resent Kate Rauen—her isolation of genes associated with CFC makes the syndrome easier to diagnose, which means early intervention therapies can begin sooner. I didn’t resent the fact that a genetic cure for the symptoms of CFC is generations away, or even that Dr. Rauen was the only doctor I met who believed that the CFC gene would play a role in curing cancer.

  What I resented was the idea of my son’s life reduced to a typing error in a three-billion-long chain of letters, to one dinky nucleotide. The absolutism of genetics offended me. Eventually I met prominent geneticists who felt the same way. Craig Venter, the entrepreneur who helped create the Human Genome Project, and one of the few human beings whose genome has been fully sequenced, says as much in his biography, A Life Decoded. “Genes,” he writes, “did not make us, body and mind.”

  At the University of Oxford, a renowned gene man named Denis Noble—the author of The Music of Life: Biology Beyond the Genome—went even further. It was one experimental thing, Noble said, to find a gene associated with a mutation, as Rauen and her fellow researchers had. “Beyond that, though, if people infer from that work that people can identify the function of that gene, that’s going a step too far.” The structure of the human genome has turned out to be much simpler than anticipated. But genetic physiology in humans—the way genes actually work—is exquisitely more complicated than anyone imagined.

  More to the point, Noble insisted, understanding human beings as the product of genes alone, from the nucleotides up, is degrading. “The social and ethical implications of understanding a human being from mere genes up are profound,” he told me over the telephone from Oxford one morning. He had a fantastic accent, one of those cosmically articulate English jobs. “It does seem to me that one of the main effects to have emerged since the bottom-up appeal of genetic science is that, to the extent it unravels the human body, it dehumanizes it.”

  As for the mind—the strange wisp I’ve looked for in my boy, to only sporadic avail—Dr. Noble maintained that it had nothing to do with genes. It’s a controversial view, but Noble insisted on it. “At the level of nerve cells and associated molecules,” he said, “the mind isn’t there. You can’t even understand the idea of intentionality without the social networks we exist in, without communication with each other. I think we’ll find that the mind lies outside the body, in the neural networks of social and cultural life.” He preferred the vision of “the Buddhists and the Taoists, who had this notion that the mind was not an object. It was a process.”

  “The human genome is an elegant but cryptic store of information,” Roderick McInnes told me one afternoon. McInnes was the director of genetics at the Canadian Institutes of Health Research. He was a tall, friendly man with a full head of brown hair and an office packed to the ceiling with research papers and books and photographs of his family. Outside his office, on the top floor of a new research facility in downtown Toronto, dozens of geneticists were crowded over computers. As he spoke, McInnes hunted through papers and journals as well as in Genetics in Medicine (7th edition), one of the main texts of the discipline, of which he’s a co-author. It struck me as unusual that a doctor would need to consult his own work, but McInnes openly admitted that the speed at which information about the genome is developing, and the complexity of what that information is revealing, makes the field almost impossible to grasp in its entirety and makes therapeutic progress rare. Sickle-cell anemia, he pointed out, was the first molecular (or “genetic”) disease ever identified, way, way back in 1949. Sixty years later, there’s still no cure. Geneticists are in general agreement about the number of protein-coding genes in the human genome—roughly 25,000—but there are at least another 32,000 non-coding genes that tell others what to do. There are feedback systems within feedback systems, and every day brings new discoveries and data. Even the genome itself is not fully sequenced. “There’re still areas we can’t sequence,” he said, “because it’s in a knot.”

  My problem, McInnes gradually persuaded me, wasn’t with genetics, but with the nature of genetic disease. “There’s something about genetic disease and kids,” he said. “It’s the permanent nature of it, the emotions associated with a mutation. Once you’ve got it, you’ve got it. Other diseases, you don’t have them for life. I guess it’s the inexorable nature of genetic disease that makes it striking. The blueprint’s been changed.” He paused. “And it has been changed in the way other people with the disease have been changed.” Genetic disease felt like a
particularly fierce form of fate. Most of Walker’s doctors said, “See you in a week or two.” His geneticist said, “See you in two years.”

  And Walker’s mind? That was truly unfixable, from a genetic point of view. “The brain has 20 billion neurons,” McInnes said. “Each neuron makes 1,000 contacts, and is touched by another 10,000. We’re probably never going to understand the brain at the level of individual neurons. We’ll probably have to look at it the way astrophysicists approach understanding a billion stars.”

  That, I find strangely comforting. Lying on my back, gazing up at the random sparkles of Walker’s mind and speculating.

  I keep speaking into that dotted black space, keep talking to him. Of course it’s not Walker alone who needs to keep hearing me talk; it’s me who needs to keep talking to Walker. I’m afraid of what will happen if I stop.

  As it turned out, I tried one last time to find his mind. I applied for an MRI, a magnetic resonance image, a deep picture of his brain. Six months later, we were told to arrive at eight in the morning at the MRI department of the Toronto Hospital for Sick Children, my usual hangout. The MRI department was in the vast basement of the hospital, at the end of a long, long hall. The walls were beige or yellow or pastel blue, like all the walls in every hospital.

  Walker and I were the first people to arrive. By eleven-thirty, three and a half hours later, we had still to see a doctor. It’s one irritating thing to wait three and a half hours to see a doctor you were told to come and see at a particular time if you have even a well-behaved normal child. Three and a half hours with a severely screaming, hitting, disabled child is the sort of experience that makes grown men shout at receptionists. But this insight had yet to penetrate the minds of those at even the best children’s hospital in the country.

  Eventually a young female anaesthesiologist in royal blue scrubs appeared. She informed me she needed a recent report from Walker’s cardiologist before she would administer the general anaesthetic he needed to have the MRI.

  “No one told me,” I said, as nonjudgmentally as I could. “Anyway, his murmur has been disappearing for years. It’s practically non-existent.”

  “I still need a recent report.”

  “But he was here a month ago, having his teeth cleaned,” I said. “They knocked him out then—you can look it up on his chart.”

  “That’s not enough.”

  “You could call the dentist, he’s a doctor here at the hospital, I’m sure he’d corroborate.”

  “I can’t call the dentist.”

  So we went home. We waited another five, six, seven weeks for another MRI appointment, during which time I obtained a copy of a form that already existed in his file, a form in which the cardiologist repeated everything I already knew, and that every other doctor knew too, that Walker’s heart murmur was insignificant. By then I had come to the conclusion that the young anaesthesiologist had simply been spooked by the look of my little freak boy; he scared her, she didn’t know how far from normal he was.

  We waited three hours again. The waiting room was more crowded this time, and more interesting: a five-year-old blind girl was reading aloud from a Braille version of the Bible, from Proverbs. Eventually, a nurse invited Walker and me into an anteroom, and into another anteroom, and into a third anteroom, and eventually they put him under and did the MRI.

  Three weeks later I managed to persuade a radioneurologist to tell me what he’d found. His name was Raybaud; he was French, from France, tanned, trim, precise. He had a habit of generalizing a lot of information into half a dozen words, a habit so overwhelming to a nonneurologist like me that I gradually began to think I needed an MRI as well.

  Walker did not have neurofibromatosis. He did not have insufficient myelin sheathing his neurons. “His problems are at the functional level, not the physiological,” the doctor said—the problem being that while neurologists understand more and more about brain physiology (thanks in large part to MRIs), they still understand very little about how the brain functions neurochemically.

  “Are there any abnormalities in his brain?” I asked.

  “Yes, lots.”

  “Do you know what they mean?”

  “No. You either have a normal brain or an abnormal brain. Abnormal can mean overgifted or undergifted.”

  “Is Walker overgifted?” I said. I admit I said it with a touch of irony.

  “No,” Dr. Raybaud said, unironically.

  The conversation went on like that. Raybaud was a pleasant man, and even helpful, but there were times when I wanted to open his own ultra-literal skull, possibly with a hatchet. It wasn’t his fault, of course. He just wanted to stick to what he knew, and didn’t want to speculate. But without speculating, Walker’s brain was especially hard to fathom.

  Then he showed me an image from my son’s MRI.

  It was a black-and-white image of the corpus callosum, the network of white matter that connects the left and right brain. Neurologists understand—this is a phrase one hears a lot from neurologists, brave scientists that they are—relatively little about the corpus callosum. Marsupials can do without it, and human beings have been known to function quite well with heavy damage to its structure, but in general mammals need it. “It’s made of axons,” Raybaud said—bundles of axons make up the nerve fibres that conduct electrical impulses away from a neuron’s cell body—“hundred of billions of axons, and it connects to every part of the brain, except for vision and the fingertips.” First the doctor showed me a side view cross-section of a normal corpus callosum: the part I could see looked like an oxbow lake, or a long balloon animal on a white plain.

  Then he showed me Walker’s. It didn’t look like a lake or a balloon dachshund. It looked like a thin trickle of a stream with a tiny pool at its end, like a tendril, a single shoot off a sweet-pea plant, a fraction of the width of a normal corpus callosum.

  It’s hard to describe how quickly it crushed me. I realized I was panting slightly. “So that means there’s a lack of connectivity in your son’s brain. And specifically it affects coordination of functions between the hemispheres.” The corpus callosum is the information highway of the brain; Walker’s brain subscribed to a crappy Internet service that constantly broke down and misdelivered messages. His mind was hopelessly disorganized.

  I could see everything in the MRI—his tongue, tonsils, throat, vertebrae, his little skull, the shadows of his frail and incomplete brain. He was like that: he revealed the state of his mind, such as it was, only indirectly, by inference and deduction, showing me what was not there, the shadows left by what blocked out the light. A boy I could see mostly in repose, only in what was left behind. Like love, sometimes. Like everything that turns out to one’s surprise to be important. Like looking at a map, a strange ancient map from another epoch, or even further back—from another phase of time. No treasure, sadly. Only questions, on a magnetic image of a brain.

  I must have been lost in the images; gradually I became aware Raybaud was speaking, the medieval-sounding labels of brain parts rolling off his tongue as he toured more pictures of Walker’s head. Walker had large cerebrospinal cavities, but within the range of normal. “Fifty percent of the brain is white matter, and he doesn’t have much. I would say the forebrain is a bit small.” His hippocampus, particularly his medial temporal lobe, had too few sulci, or furrows. That grey matter of the brain, the crenellated surface, is where the content of our thoughts and associations originates (my memory of the smell of dried formula, my mental picture of Walker’s crying face); the white matter delivers the content here and there (the smell of dried formula makes me see Walker in my mind’s eye). Walker also had less grey matter than most people, Raybaud explained, so that even if his information delivery system had been sound, his content was very likely rudimentary to start with. “The brain”—Raybaud admitted he called it “the brain” to give him distance from the child he was describing—“is too small.” Beyond that, it was hard to say what was wrong. For all the physiological f
laws the MRI revealed, the functional problem in Walker’s brain, its misdirected electrical activity, was invisible.

  I had saved my investigation of Walker’s brain for last, hoping it might reveal him. But his brain had even less to tell me about who Walker was and how the world appeared to him than I knew myself. The fancy pictures told me less than I could figure out from ten minutes in his company, and there was no fine grade to these pictures, no subtlety. It was a technical report on the hardware, not that it wasn’t grave enough. “Just from one bug, you can make the whole Internet stop,” Raybaud said, by way of analogy. He compared the pictures on the computer screen—I’m not making this up—to the brain of a dog.

  “The dog has the same memory as you have. The dog has the same affective intelligence as you. But he cannot operate a computer. He cannot do math or context very well. Dogs don’t have these anterior frontal lobes.”

  “But Walker has them,” I pointed out.

  “But they may not be properly connected.” It was possibly the work of the RAS pathway, transposing small parts of the brain to places they weren’t supposed to be, over-building where it ought not to have built, under-building where it ought to have built. There was no health in that. Walker had all the parts: the primitive brain, the somatosensory stuff; he had the secondary meat, the processing and anticipating bits; he even had the parts, if somewhat diminished, that did the brain’s cross-associating, the radar dishes normally associated with intelligence. “But to know what to do with all of it—to place shapes in time and space—you need tertiary functions. He has it all, but it doesn’t work properly.”