The Boy In The Moon Part 9

I think that's what my steady weeping is about. Walker has the same effect as the ballet: they both can reveal the larger shape of the world. He is one of the pools where hope resides.

So to anyone who wonders about the potential value of a severely disabled child, and the possible meaning of a penumbral life pa.s.sed mostly in pain, that's one possibility. What if Walker's life is a work of art in progress-possibly a collective work of art? Would that persuade you to take care of him for me?

I think about him for the first time each day before breakfast, at quarter to seven in the morning as I make my daughter's lunch for school and come upon his feeding paraphernalia in the back cupboard in the kitchen, or when I notice the still-mangled louvres in the blinds on the front door as I get the paper. There are the photographs of him on the fridge and on the cereal cupboard, and on my bureau as I get dressed; there are the magnets he's obsessed with on the fridge. His empty bedroom calls out from the top of the stairs. Every time he comes to mind I remember that we couldn't keep on with him, and my hands and chest go cold; think of how long it has been since I saw him last and when I will see him next; remind myself of what I have to do the next time (doctor? insurance? tests?); calculate the number of days he has been away, feel okay or reprobate about the number; think about the shape of his head; think about his eyes, if he might talk; calculate when in my week I will have time to drive out to get him, and what time of day the traffic will be least onerous; think about arranging Olga; think about Hayley, alone with him in the world. That's more or less every time I think about him. For a boy of so little purpose, he makes me think a lot.

But after Walker moves into his new home, I gradually forget the rhythms of his sleep. It makes me weep to say so: how did I let him down that much? And what will raise him up again? I forget about the way he insists on thumping his head, the wall, my head with his head, until he comes home for a visit and reminds me all over again. I forget how gradually and inexorably he wakes up, ever so slowly torturing whoever is lying with him with the prospect of his impending consciousness, repeating the same bonking of his head or the same sc.r.a.ping of his hand (hard, against something harder), the same murmur or moan, until finally he breaks through, often unhappily, into wakefulness. I forget how steadily he can hit the wall, four and five times a minute, for twenty minutes, without opening his eyes, and how quickly I leap into action, to keep him under, asleep. I forget how calm he can look nevertheless in the course of his surfacings, the seamlessness of his eyelids, the smoothness of his brow, how handsome and deeply calm even my small bent boy can look. How convincing his fake calm can be. I forget how infuriating he can be, when he resists my will. Last summer, at our friends' remote lakeside cottage, he stayed awake until quarter to three in the morning. I first tried to put him down at quarter to eleven, when Johanna said, "You need to take him off Olga's hands, she's had a long day."

I pushed the usual wave of resentment back into my chest. I removed his helmet, lifted the dead weight of him into the bed, collapsed beside him. I sang my store of songs to him-the only songs to which I can actually remember the words, "Amazing Grace" (four verses, one made up), "Amore," "Are You Lonesome Tonight?," "Old Man River," plus a repeat of "Amazing Grace," this time to the tune of "The House of the Rising Sun," the way the Blind Boys of Alabama sing it. I did all that twice. That didn't work. I cajoled him, clicked, joked, laughed, held him down, whispered in his ear, rubbed his head, his back. I did everything I had ever invented before. In reply he attempted repeatedly, by which I mean three dozen times, and with pathological enthusiasm, to conk my head with his head, as hard as he could. He enjoyed a 40 percent success rate.

Finally, after four hours, getting up twice in the process to listen to the night and patrol the now-deserted screened-in porch with him, after a particularly mean-seeming crack to my nose, I gave him a medium-light smack on the backside, and swore at him. "All right, you little b.a.s.t.a.r.d, that's quite enough of that!" is what I growled. I knew I was in the danger zone where, as the advice books say, one must step away. I thought briefly about waking up one of the others, Johanna or my host, and begging for help. (Never Olga: she worked hard enough during the day, the nights were ours to solve.) I didn't, of course, wake anyone. I hardly ever do. But the option was there. I had somewhere to turn. Alone, with no one to fall back on-I don't think about that alternative.

Instead, I gave him the whack and told him to behave himself. Whereupon he turned on his side, leaned up on his elbow, looked into my face as if he were Milton Berle, emitted a loud, cackling "HA!" and rolled over and went to sleep and rolled over and went to sleep. He just wanted to show me that now he can outlast me, that he's up to whatever I can throw at him. I don't know how other, normal twelve-year-old boys reveal that moment to their fathers, but that is how Walker told me. He used what he had.

But how do you know that is what he is trying to tell you?, someone might ask. How do you know you aren't imagining all these messages between you? If he can't talk how do you know you aren't making this up? The answer is, I don't. But the average father doesn't know a lot of the time if he and his sons aren't making up their bond either. The frame of any human relations.h.i.+p exists behind a veil of words, and sometimes sounds like something other than it is. Only a fool, or someone intent on disappointment, pretends otherwise. Walker and I don't compound our confusion with words. We prefer noises.

After Walker had lived in his other house for two years, I had a dream about him. He was in his new house and I was visiting. He was very, very happy: he still couldn't speak, but he understood everything and could instantly convey all he wanted to say in murmurs. After our visit, he walked me to the door of his house to say goodbye, and stood there, beaming. His housemate Chantal, or his other friend Krista Lee or some combination of the two, was standing behind him. It was clear she was his girlfriend. That pleased me: I knew he had finally found someone to love and someone to love him, not just in the public way everyone loves Walker, but in a way only he could understand-his own private love, at last, to give and receive. And we both knew it. He smiled as I said goodbye, and looked directly into my eyes, and nodded, gave me his blessing. He had forgiven me for his life. But in the end it was just a dream.

He is becoming a different boy there, in his other house. He has a life of his own, something I thought he'd never experience. Intellectually, he's an infant, always will be; he reminds me what it's like to be with a baby. But while I think Walker will never change, he changes all the time.

On his last trip home he refused to do anything I asked, refused to pay attention to me for two days: banged the table, inspected the microwave, played with Olga. He was behaving like a teenager, holding out. On the evening of the second day, after I had asked him to come and see me thirty times, he tossed me a bone. He sat down on my knee; looked at me; and slowly, ever so slowly, gave me a half-grin, while peering off toward his next destination. I have to say the word knowing knowing crossed my mind. He seemed to understand precisely what he was doing: crossed my mind. He seemed to understand precisely what he was doing: Time to placate the old man, who obviously needs placating-don't you, old man Time to placate the old man, who obviously needs placating-don't you, old man.

I never expected to see him become independent, to have a life of his own, but he has and does. The latest development, the workers in the house tell me, is that he shouts "Bus bus bus!" when it arrives. I find that hard to believe. But there have been other s.h.i.+fts too, subtler changes in his current.

There was an evening in November, six months ago as I write this, that I remember a little too clearly. I arrived at six to pick Walker up and bring him home to us. As I pulled up into the driveway, Colin, the oldest boy in the house, was staring out his bedroom window, which was to the right of the locked front door. He was standing so close to the gla.s.s, his breath was condensing on the window, next to his Toronto Maple Leafs sticker. Colin was a shy guy: small, thin, twenty-five (that was a shock-he looked sixteen), permanently furrowed brow, misshapen face, bent body, understands but does not speak, devoted to video games, and very decent: he would let Walker stand between him and the TV screen where his video games were projected, waiting patiently until Walker moved away. I always said h.e.l.lo to Colin, walked over and rubbed his back, treated him as the oldest, the leader; it was the only thing I could think to do, the only way I could connect without feeling like an idiot. He seldom made eye contact and kept his head down, but I noticed he always smiled quietly if I said his name; and when I called his name as I left, which I always did, he smiled again, secretly glancing up. His shyness, his deep hiding, his shame, his pleasure, his grat.i.tude, his solitude, his longing-all there in those moments.

A few weeks pa.s.sed. Late on a Monday in December, Trish Pierson, Walker's night worker, telephoned my mobile. That was unusual. "I just thought you might want to know that Colin's near the end," she said. "Because you have a thing with him." He had only one lung-I hadn't been aware of that-and now it was failing. I didn't find words to say. Colin lasted three days, and then he was gone. Now no one minds or doesn't mind if Walker blocks their view of the TV.

Walker came home to us a week later. I walked in the door after work and Olga told Walker I was home, and he came over to say h.e.l.lo-which was unusual; normally he doesn't do that, you have to call him. He seemed not sad, but expectant. If something could have been on his mind, it would have been, if you understand my meaning.

I didn't know whether to mention Colin. Had he noticed? Trish didn't think any of the residents were aware of Colin's death, but I wasn't sure.

I thought: I'll say something anyway. He was standing next to me, and he wasn't moving from my arms, from the basic comfort. "h.e.l.lo, Beagle," I said, because that is what I always say, trying to be consistent, "how are you?" I rubbed his shoulders briskly as I always do, and put my head at his eye level, and (lightly) bonked his helmeted head with my unhelmeted head, and said, "Alayalayalayalay," which is what I always say, and then I pulled him closer and put my mouth beside his ear. It felt important, but also like I was talking to a brick. I said: I was sorry to hear about Colin I was sorry to hear about Colin and and Do you miss him by the TV, hunched on that little stool? Do you miss him by the TV, hunched on that little stool? and and I know you were pals I know you were pals and and He let you stand in the way. That's a nice thing to do for someone, you know, not to mind if you stand in the way He let you stand in the way. That's a nice thing to do for someone, you know, not to mind if you stand in the way and and Colin never looked at anyone but he always knew when someone was there Colin never looked at anyone but he always knew when someone was there, right? right? and and He always knew you were there He always knew you were there. Then I stopped, and waited. Walker was looking right at me. I said, a little louder, It might be better for him now It might be better for him now, he was in a lot of pain and very sick he was in a lot of pain and very sick, and Remember how when we called his name or said hi he never looked up Remember how when we called his name or said hi he never looked up, but we always caught him looking afterwards but we always caught him looking afterwards, looking and smiling looking and smiling, how grateful he was how grateful he was? and He was a good guy He was a good guy, Walkie Walkie, and He was glad you were his friend He was glad you were his friend and and You must miss him, I know it's sad, but don't worry, sometimes you have to feel sad You must miss him, I know it's sad, but don't worry, sometimes you have to feel sad. I said other things, but I can't remember them now. Finally I said, I don't know where he is now, but that doesn't mean you can't remember him. Anyway, Bubby, I'm sorry your friend died I don't know where he is now, but that doesn't mean you can't remember him. Anyway, Bubby, I'm sorry your friend died. Then I rubbed his back again. He seemed-I admit this is highly subjective-somehow relieved. Something in his eyes softened. His breathing slowed. Could that be what he had meant to tell me?

I said all this quietly, so Olga wouldn't hear and think I'd lost my mind, but I'm pretty sure she heard me anyway. I still don't know why I said it, but I would rather have said it than not-in case he heard, and understood.

Two days later I took him back to the house. Tanya, a young woman from the Caribbean who looked after Walker from four in the afternoon until eleven in the evening, was waiting when we walked in the door; Trish, his night worker, was waiting too. Tanya had been with Walker six months, a long time: he had stretches of running through workers, two weeks at a time before they gave up in despair from too much crying or too many head b.u.t.ts. Trish was even more unusual: she'd been hired to look after Walker at night when he first moved into the group home, three years earlier. She knew Walker as well as a mother knows her own child. Each night Tanya put him into his Power Rangers pyjamas, whereupon Trish took over. In the morning Tyna, the manager of the house, would come in and do twenty minutes of signing with him while he sat on the toilet before school. She'd been trying to teach him the sign for "Play" (an outstretched hand). It wasn't going well, but she kept at it. At home I was trying to teach him modified signs for "Stop" (chopping motion of one hand on the other) and "Yes" (fist flicked up and down) and "No" (head shaking back and forth) and "Love" (hand over heart) and "Friend" (a touch to the chest). They seemed like words he might need to use. He wasn't very good at this, but neither was I. I'd make the sign and he'd laugh uproariously, and then proceed to ignore me. It was like working for a boss who always seems to have something more important on his mind. The only way to keep Walker's attention at all during the signing lessons was to talk talk while I flapped my arms and hands. He liked this for the same reason he gravitated to his workers more than he did to the other kids in the house: none of the residents spoke, and Walker was drawn to the sound of the human voice. He just couldn't master his own. while I flapped my arms and hands. He liked this for the same reason he gravitated to his workers more than he did to the other kids in the house: none of the residents spoke, and Walker was drawn to the sound of the human voice. He just couldn't master his own.

Why couldn't he learn sign? There are scientists who believe even severely delayed children like Walker set the pace of their own progress, that they have a sense of what they can and can't manage, and adjust accordingly. Darcy Fehlings, a developmental pediatrician at the respected Bloorview Kids Rehab centre in Toronto, had known Walker as a baby. "I do believe that the children as much as possible make sense in their own way of the environment around them," she told me one afternoon. "I think there are patterns that Walker would recognize, that give him comfort and structure." But he could only absorb what he was ready to absorb-and if he was easily overstimulated, and wasn't ready to make eye contact, then he wasn't ready for sign language: it was me who had the problem, not him. On the other hand, Dr. Fehlings remembered Walker going down a slide, as a little boy, with total enthusiasm. "That, the slide, was an iteration that made sense to him," she said.

Something else that clearly made sense to him was to stay awake as long as he could and be as physical as he could be while he still had an ounce of energy in him. He didn't want to miss anything anything. Even at the new house, as he slowly became a teenager, a full night's sleep was rare, and when he had one it made his handlers ecstatic, because then he was less temperamental. "On his happy days, he'll jump on the bed," Trish said to me one day, "and if you close the net"-the netting on his veil bed that kept him from falling out-"he'll run into the net and fall down. He thinks that's hilarious." On weekends after he went swimming at the community centre she took him for walks. "They know him at Sobeys," she said of the local grocery store. "They all say 'Hi, Walker.' And then we get coffee, and he tries to smash everything, and then we sit." He loved to pull bags of pasta and cans of soup off the shelves.

He tended to bop the female workers in the house with his arm cans, but not the men. "Just the girls," Tanya said, "because he gets a rise out of them. They say, 'Walker, don't smash my b.u.m.' And he goes, heh, heh, heh." She looked at him. "Is that your mating dance?" she said, her soughing island accent softening the joke. Tone, inflection, implication: he got all that. He was a master of the unspoken.

After three years of nights with my son, Trish knows things about Walker that I don't know. She brings back nuggets from her explorations, lays them out for me to see and admire.

Let's say it's the day I am to meet Trish and Walker at the Toronto Hospital for Sick Children at 6:30 a.m., the prescribed check-in time for a 9 o'clock operation to have his teeth cleaned, his ears irrigated, and a hearing test for good measure. Nothing serious-but because it is Walker's ears and Walker's teeth, the procedure requires a general anaesthetic. Without a general anaesthetic none of it is possible: Walker is not going to sit still to have someone jam a probe down his ear, or even a toothbrush into his mouth. (The only person who can get his teeth brushed is Olga, his nanny. To her he submits, only emitting a quiet, steady moan like a sump pump.) There are the usual delays at the hospital: the standard one-to two-hour wait, plus the usual interview with the anaesthetist, today a young Indian who seems barely into his twenties and who wants to know of any allergies and where Walker's heart murmur is, exactly. I say, "It'll be in his chart," which is what I always say. But because the chart is six inches thick, no one ever seems to have read it. By now the young doctor is paging through: over his shoulder I can see letters from neurologists I have never read, but getting copies of them is like trying to lay my hands on cla.s.sified government secrets. Walker sees many doctors many times a year: he is an ideal candidate for a universal online chart. The hospital has been talking about digitizing patient charts for years, and the government has spent nearly a billion dollars to that end. Diabetics will be the first group to have their records computerized, though concerns about confidentiality keep getting in the way, to say nothing of the cost. Still, if ever there was a child who had less need of confidentiality and more need of a universal medical record, it is Walker. I have such conversations many times in the course of a single visit to the hospital.

"How will you administer the anaesthetic?" I ask.

"Probably a mask. Or maybe an IV, but if he's reactive, probably the mask. Is he congested?"

I would have thought it was a little late to be asking, but out-patient medicine is practised this way, on a strict tell-me-what-I-need-to-know-and-no-more basis.

"He's often congested." This is Trish speaking. "It's allergies."

"Pneumonia? Allergies to azithromycin?"

I've asked for the anaesthesia details to put the doctor at ease, to rea.s.sure him that Walker is as tough as other kids, that his father is fully engaged in his health and welfare. The doc is surprised-most parents don't ask for details-but thrilled at the chance to talk about the heady tools of his trade: sevoflurane; fentanyl (a morphine-like sedative); propofol in the IV. "Maybe some rectal Tylenol when he comes out of it." Rectal Tylenol? Is there no end to the indignities the boy has to suffer? Not tonight, dear, my a.s.s hurts Not tonight, dear, my a.s.s hurts. The jokes bubble away in my mind. It is not always so grave, the hospital. "He's fed by G-tube, right? Maybe we'll just do it there, forget the rectal Tylenol." We go back to waiting. To distract Walker, I sit in a wheelchair and lift him into my lap and tool around the ward and the floor. I try to wheel as fast as I can; it's not as easy as it looks. For twenty minutes the boy's in heaven, a new record for sustained mutual pleasure. He loves to cross the pedestrian bridge that spans the lobby and look out at the huge coloured mobiles of cows and pigs and moons hanging in the atrium. I'm surprised by his glee, and tell Trish.

"Oh, he loves to ride in the chair," she says, matter-of-factly. By now she has taken off her jacket, and I have to work not to stare at her cleavage. Staring at a woman's cleavage is not an act a man ever wants to be apprehended in the middle of, but it is especially not the sort of thing you want to be caught at while you are in pre-op at a children's hospital with your intellectually disabled son while you zoom around with him in a wheelchair. But Trish ignores me, or forgives me.

"He used to ride all the time with Krista Lee, on her lap."

Krista Lee, from his first group home, where most of the kids were medically immobile. Walker was King Rat in that place, its star boy: he could walk. Within weeks we noticed his confidence improving. Living with us, he was always the least capable one. There, he was a traveller, a cosmopolitan. Kenny, Walker's first roommate, had suffered brain damage in a near-drowning, and could no longer move easily on his own. But Walker's mobility made Kenny so excited he'd clap his hands and laugh. Kenny couldn't form words or fully control his body, but he could hear and understand and make himself understood in a flurry of gestures and noises, especially when he had visitors. He was a sweet kid. I never felt so loved as in that place, surrounded by those fallen children.

Krista Lee was a pretty girl with wheels. But her mind was unreliable. Walker adored her anyway. "Sometimes he'd get up and use the automatic lever on her chair and set her going," Trish said. "And Krista Lee'd be all 'Walker! What are you doing!' He loved that." I have no doubt. When he grew too big for the house, and moved on to the second place, a few miles away, the workers kept the news from Krista Lee until the last minute.

All these strangers were now a part of Walker's life, to which each of them brought their own story. Trish lived with her husband and daughter to the northeast of the city in a suburb called Ajax, a town that had sprung up like moss in the shadow of a munitions plant during the Second World War. Now it was a vast rolling suburban plain of bungalows and split-levels and malls and churches that advertised their sermons on sign boards by the road (Forbidden Fruit Creates Many Jams). It was a place where you saw married women with cigarettes in the corner of their mouths hauling out the recycling and boys in helmets with hockey sticks riding home on skateboards, where the intersections were as wide as baseball diamonds.

Trish was married to a thin, wiry, older man named Cory. "He makes bouillon cubes," she told me one evening. I admit it came as a surprise: I had never considered that an individual might make bouillon cubes, though of course some individuals must and one of them is Trish's husband. He owned his own business, and worked long hours. He'd started out making gravy that he sold to chip wagons, and from there he moved into essences and sauces and spices. I had a lot of time for those bouillon stories.

Trish and Cory had a little girl, Hailey-so named after Trish met our daughter, Hayley, and admired the name-and they were into flipping houses and cottages, something they'd done twice, with some success. Trish didn't want a second child until they could move closer to Cory's business, so he could be home more. "Thank G.o.d. I feel like I have two, with Walker." It shocked me when she said that. She thought of Walker as her own, at least part of the time.

Trish grew up in Grand Falls, Newfoundland, where her father worked in the local mines and the paper mill. She was a tall, forthright, practical person with a pretty face and a square jaw, an extrovert and unselfconscious. She first looked after someone with a disability, a girl with cerebral palsy named Dylan, when she was sixteen. Trish taught Sunday school and spoke openly of her belief in G.o.d-another experience Walker might not have had if left solely to an upbringing in our staunchly secular household. She had a degree in early childhood education, but the specialty was too academic for her tastes: she preferred the rough-and-tumble of the kids themselves, the earthiness of their needs. She liked a practical challenge, liked to fix their problems. She'd been hired specifically by the organization that ran Walker's group home to look after Walker, and she took pride that she had done so well with a boy everyone acknowledged was a tough case. She worked nights, in seventy-two-hour stretches, three nights one week, four the next. It seemed like a gruelling schedule, but Trish welcomed it; that way she could be with her daughter before and after nursery school, and she had health care and benefits. I came to think of her as a sister, except for the cleavage.

Walker loved Trish almost as intensely as he loved Olga. Olga was Walker's second mother and father: he did anything for her, went anywhere with her. Olga could make Walker spin on the spot and smile like a madman just by singing "The Wheels on the Bus Go Round and Round," something she did dozens of times a day when she was with him. He was also fond of Will, his other night worker (who worked when Trish was off), a tall, gentle guy in his twenties. Will was as quiet as Trish was chatty, but Walker was devoted to him. And Walker adored Jermayne, his day worker for more than two years.

Jermayne was Jamaican, six-foot-four with braids and a voice so low it made my chest vibrate as if a train were pa.s.sing a few blocks over. My wife had a slight crush on him. He liked kids: if you asked Jermayne how many children he had of his own, he'd say, "Two, at home." His daughter was ten: Walker would walk up to her and give her his hand to be led. "Jermayne treated Walker like a part of his family," Trish told me. "He got socialized with Jermayne. The first time they met, Walker wiped his nose on Jermayne's black pants. 'You're going to be best friends,' I told Jermayne, and they were were best friends. They played basketball, after a fas.h.i.+on. They were bros. Jermayne'd say, 'Walker, let's go,' and Walker would go, 'Hunh!' 'These days Walker gravitates towards men.'" best friends. They played basketball, after a fas.h.i.+on. They were bros. Jermayne'd say, 'Walker, let's go,' and Walker would go, 'Hunh!' 'These days Walker gravitates towards men.'"

I dressed Walker in the kind of clothes I wore-checked s.h.i.+rts and corduroy, jeans and a sweater. After Jermayne came into his life, Walker showed up back at our home with a skull-tight haircut, in silky basketball shorts and jerseys and baseball caps, DJ Head Thumper. Because of Jermayne he began to respond to reggae on the car radio; a strong backbeat always made him smile. It was as if he'd been away in a foreign country and was telling me what he'd seen and heard and tasted.

He wasn't just a different boy with Will and Trish and Tyna and Jermayne: he was their boy, just as he was my boy and Johanna's boy and Olga's boy; he belonged more and more to all of us, because he was the sort of boy no one person could manage alone. That was the price and the marvel of his life.

"All of his clothes folded in there, in his closet, that's all me," Trish said to me one afternoon. At home we woke him up; Trish let him rise on his own. "He likes to think it's his idea." For months the lot next door to the group home had been a building site. "He loved loved that," Trish said. "I say, 'Let's look at the trucks.' I'm very close to him. Very fond of him. They call me the Walker Whisperer at work. I find that when he's going down, he's tired, but he doesn't want to miss anything." The difference between Trish and us was that Trish wasn't Walker's mother: she could look after him, but she could also detach herself, see him clearly, less emotionally. that," Trish said. "I say, 'Let's look at the trucks.' I'm very close to him. Very fond of him. They call me the Walker Whisperer at work. I find that when he's going down, he's tired, but he doesn't want to miss anything." The difference between Trish and us was that Trish wasn't Walker's mother: she could look after him, but she could also detach herself, see him clearly, less emotionally.

She claimed she never doubted our decision to move Walker to a group home. When she first met Walker, before he wore a helmet or arm cans (I was convinced the restraints would frustrate him to the point of madness), when he was still rubbing his skin raw with his fists, despite our constant efforts to prevent it, she said, "I knew you having put him there was a cry for help. I don't know how you did it for that long. And when I first went there, I didn't know if I could do it. You have to get it into your head that his obstinacy and hitting and crying are not malicious. That maybe when he thumps you, it's more 'I like the way it feels, and you should too.'" Trish was one of the women who had invented Walker's arm cans, fas.h.i.+oning the original pair out of recycled Pringles potato chip cans. The first time the workers slipped them onto Walker and he discovered he couldn't whack himself any more, she remembers, "He sighed. He sighed. And then he just picked up a toy and played with it." Trish rerouted his brain.

It was Trish who suggested he wear a helmet, Trish who suggested a weighted blanket (fabric with weights sewn into it), to give him a more rea.s.suring awareness of his own physical outline. She had s.h.i.+fting ideas on why he hit himself. "Sometimes it's out of frustration. And sometimes it's out of loneliness. And sometimes I don't know. Or if he's hot-he's a hot kid. Or if he's dropped his toy and can't get it. Or if his meds are coming up-sometimes I can see it, and sometimes I can't. He's hard to figure out. Sometimes he'll just do the one punch. He'll be pouty, sad, and then he'll just do one. Get one in. Does it just knock his vision into place a bit?"

Described by others, Walker's life sounded more purposeful, more complete than it sometimes seemed to me, his father. "He loves the smell of my coffee," Trish informed me. "He's obsessed with my coffee. Caramel macchiatto. He could care less about flowers. He likes the harder stuff, pine and rosemary."

He could also be more difficult than anyone let on: he ripped through workers at a clip, at least twenty by Trish's count. "The new people come in and they'll last two weeks and they'll say, 'I can't do it.' He either likes you from the get-go, or he doesn't. Because he's like that." He was stubborn, and he had both a temper and a sense of humour, like his father and mother, respectively. "Sometimes someone will say a joke and I swear he'll laugh," Trish said. "Not a complex joke, but a joke. And I think he swears. When I tell him to do something, he throws his book at me. And I'll say, 'Walker, you don't throw your book at me, you go get that.' And he'll go 'Hunh!'. And I swear he's swearing. Like, 'f.u.c.k you, lady.'" Of course, I have no idea where he gets that from. He didn't like being told what to do.

She figured he understood the words pick up pick up and and come come and and stop stop and and leave it leave it, which was more than I gave him most days. "I think Walker is much nicer than some kids I've been with," Trish told me. "But the unknown with Walker makes him more difficult. Walker can have a relations.h.i.+p-he can have a conversation of sorts, he has a sense of a person." He knew who to persist with, and who wouldn't respond. He was nice to people who were nice to him. "But with Walker, if something's wrong, you don't know how to fix it."

Trish had a view of Walker's future as well, and to my relief it was tolerant, one that suggested others might see something in him. "Walker, I mean, he'll never have a job," Trish said one afternoon. We were sitting in the formal living room of her house in the suburbs: it didn't look like a room that was used much. "And he'll never have a paycheck. But things change for Walker. And without giving him the opportunity to see new things, he won't become who he is. He learns. He's learning. The sounds he makes tell you that. Now when you say, give me five, he gives you five. That's huge. I think it's huge. So I don't think he's done, developmentally. He's constantly listening. It just takes him longer to process it."

A few months later Trish dropped some bad news: she and Cory had found a farm north of the city, near his work. Now Cory could live and work in the same neighbourhood, which meant he'd be home more, and not commuting. They could get on with their own family, make a brother or sister for their daughter. After Christmas, Trish would no longer be working with Walker, except on special occasions. It was another loss, like Jermayne (whose back fell apart), like Tanya (who had a child of her own). But Will was still there, and someone new would be there, and we were there, the ongoing community of Walker.

Trish insisted he'd weather it well. "The other night I came in-Sat.u.r.day-he was just kicking and screaming. But when he's happy, when he's content, he's the most beautiful child. His smile, when he smiles, he melts you. That goofy little grin, that sideways look. People stop me sometimes with him, they ask, 'Do you need help?' You get that pity look, you know? And it's not necessary. Because if you see his happy look, you don't pity him."

fourteen.

Walker makes me live here and now; he leaves me no choice. But he is also a product of the past, like everyone else. The history of the care of the mentally r.e.t.a.r.ded is the story of our discomfort with the irrational, our struggle with what frightens us, our longing to control what we encounter. There's archaeological evidence of Neanderthal man caring for his physically handicapped co-tribalists (intellectual delay wasn't so noticeable then, I suspect), but such moments are decidedly rare over the course of civilized human history. Our more usual motto has been "out of sight, out of mind." Infanticide of the disabled peaked when it least needed to, at the height of Athens's affluence and influence; it was Plato and Aristotle who both suggested (for different reasons) that the deformed be put away at birth. Meanwhile in Sparta a father had the right to terminate the life of a weak child. The mentally crippled were raised in the dark in Rome, as that was thought to be therapeutic, at least until the Roman surgeon Sora.n.u.s (with a name like that, how could he not be a physician?), the father of gynecology and pediatrics, argued against the practice. He also insisted that rubbing the heads of the intellectually handicapped with oil of thyme and wild rose was not going to cure them.

In the original Greek, idios idios simply meant a private or unknowable person-thus the word simply meant a private or unknowable person-thus the word idiot idiot, which for roughly twenty centuries, and as late as the 1930s in North America, was still accepted terminology for someone with profound intellectual disabilities from birth, as opposed to an imbecile imbecile, someone who was born normal but later became mentally disabled, and who might recover. Walker would have qualified as an idiot: he is a public boy, raised almost by committee, but also intensely hidden and unknowable, hence private. Christianity introduced the idea that someone like Walker was closer to G.o.d ("for he that is least among you all, the same shall be great:" Luke 9:46), but the Christian church also encouraged the belief that the disabled and the insane were witches, possessed by the devil, or were a form of punishment for their parents' sins. Britain's Poor Laws of 1563 and 1601 required the state to care for the disabled, but until well into the nineteenth century a handicapped or r.e.t.a.r.ded soul was much better off with a wealthy, loving family and a large home. Even in many parts of North America today, this is still the case.

A lot depended on where you lived. The nasty, aforementioned Martin Luther hated and denounced the disabled as possessions of the devil, but in Frankfurt the mentally challenged were a.s.signed minders, and in Nuremberg (at least for a stretch) they were allowed to roam the streets unmolested, to be fed and comforted by neighbours. Tycho Brahe, the first modern astronomer (and Kepler's mentor), kept a r.e.t.a.r.ded dwarf as a companion, and listened to his mutterings as if they were divine revelations. But in Prussia the mad were often burned or jailed. Society couldn't seem to make up its mind about intellectual disability (the distinction between madness and intellectual disability was first drawn in the 1500s, but only sporadically): the spectacle of human disarray was fascinating, but also too terrifying to watch for long. The result, as Michel Foucault insists in his magnificent and maddening History of Madness History of Madness, was the suppression of not just madness, but the idea of madness, through the invention of confinement. Confinement is a way of containing the problem, keeping it within our grasp and out of sight. We have been organizing and categorizing and "solving" intellectual disability since at least the onset of the Age of Reason-when Descartes decided that he existed only because his brain was capable of thinking that he existed. But in the course of making the problem appear to disappear by appearing to contain and resolve it, society has also managed to contain, and box in, its own fear of disability, our terror at the prospect of physically engaging with it. Madness, profound r.e.t.a.r.dation, and even blithe cretinism were once considered to be existential states. Madness was irrational, but it was not an affliction that needed to be cured; madness, Foucault notes, was "not about truth in the world but about man and the truth about himself that he can perceive." Walker showed me what I didn't want to see-his vast needs, the limits but also the potential of my capabilities and compa.s.sion-but also what I would never have seen without him-his capacity to make a pa.s.sing moment memorable, and my capacity to appreciate its significance. No one wanted to be mad, but madness had its purposes, as a route into difficult self-contemplation. In the pre-scientific world of Shakespeare and Cervantes, where art and alchemy and logic and divine revelation and experience all enjoyed equal status, madness was a direct shaft into the darkness of human existence. Born into pain and sadness, only to face ... death! What could the nightmare of existence possibly mean? Even to contemplate its purpose required a special vision and point of view. Madness and mental affliction were fast cars through that tunnel. Intellectual instability was an excuse to be unconventional, to think unconventionally. Shakespeare's fools, or lunatics on a s.h.i.+p of fools, are allowed to speak their minds and reveal the vanity of our daily goals and the outright denials by which we live our everyday lives-they can't help it, they're defectives. In medieval Europe, wandering madmen were forced to live just outside a city's gates, but were invited in on occasion to entertain the residents-to reveal the shape of the residents' lives. There are days when I contemplate Walker's home on the outskirts of the city where I live, and think: not so different.

But madmen and mental defectives challenged the social order, Foucault insists, and so were calibrated (which meant they could be "understood") and then suppressed ("treated" and confined). Foucault's vision of history and civilization as engines of human repression sometimes left me bewildered and often struck me as over the top, but I understood his point: if I get too much satisfaction out of simply being with Walker, out of being forced to be myself, I will contribute less to the keep-up-with-the Joneses, get-ahead-at-all-costs, other-directed, results-oriented rat race of Western capitalism that produced, for instance, the global economic defrosting of 2008. We desire the status quo, Foucault claims, so we set out to "cure" or "solve" madness.

By the late 1500s intellectual deficiency had been quantified for the first time: a sot and idiot was someone who couldn't count twenty pence, couldn't say who his mother or father were, couldn't reason what was to his profit. By 1801, Philippe Pinel, the father of psychiatry, had laid down the rules: there wasn't much hope for educating mental defectives, but humane attention to their physical requirements was the least society could offer. (Of the 31,951 children admitted to the Paris Foundling Asylum between 1771 and 1777, nearly 25,000, or 80 percent, died within a year.) Pinel was unorthodox: he chose a career in medicine over one in the church, after a close friend went mad. But his desire to help mentally deficient human beings by rationalizing and organizing and controlling them also produced some of the most inhumane conditions in the history of Europe. In Salpatriere, the famous Paris asylum Pinel directed, three thousand women were dressed in burlap sacks, and slept five to a bed; their daily rations were a mug of gruel, an ounce of meat and three slices of bread. Over a thousand people "deprived of reason" lived in one wing alone. In Bicatre, another, even more atrocious Parisian asylum Pinel oversaw, criminals lived side by side with the mentally incapacitated, and food was often served, by necessity, on the point of a bayonet. And yet this vision of controlled madness caught on and rea.s.sured Europe's citizens, in the same way that the construction of prisons has rea.s.sured many American voters for the past thirty years that their society is ordered and safe and just. Confinement of the mentally disabled became the rage: one out of every hundred residents of Paris spent time in an inst.i.tution.

Nor did it stop with Pinel in France. By 1890 the number of people in European asylums had more than doubled. "A new dividing line has appeared," Foucault writes, "rendering the experience so familiar to the Renaissance-unreasonable reason, or reasoned Unreason-impossible." I have no interest in romanticizing mental disability, but I know what those oxymorons mean: they are a way to try to understand Walker and myself, by listening to a boy who cannot speak, by following a boy who has no known direction.

It was against the incarcerating, bureaucratizing, controlling impulse of the rational establishment that an alternative view of disability slowly flickered on. In Italy, Vincenzo Chiarugi banned the use of chains on asylum inmates nearly a decade before Pinel did. "It is a supreme moral duty and medical obligation to respect the insane individual as a person," Chiarugi wrote. The struggle to do that-to treat the intellectually disabled as individuals, as equal and contributing members of society, no matter how subtle or small their contribution is, and how reluctant we are to understand what it might be-is the unresolved struggle in the history of intellectual disability. No one can deny that huge progress has been made. The last 150 years alone have radically improved the physical lives of people such as Walker. Pasteur and Lister and germ theory, Marie Curie and X-rays, Virchow and his cells, Gregor Mendel's investigations of heredity, Darwin and evolution, Freud and the unconscious, even gene science, have all contributed to the lot and to the understanding of the intellectually disabled, as have popular education and recent legal reinforcements of the right of the disabled to live their own lives. But we still think "results" are the only rea.s.suring measure of human success, and we still perpetrate injustices to maintain the illusion that we're producing results. As recently as 1964 Jean Vanier bought his small house for two intellectually disabled men because the conditions he found in inst.i.tutions (in France, no less) alarmed him. It was only a year ago that I met Linda Pruessen over lunch one day in Toronto and she explained how her sister, Caroline, who is globally delayed and in her thirties, still lives at home with her parents, who are now both sixty-four years old and still trying to create a way for Caroline to live happily without them. For Pruessen's parents, arranging to see a movie on a Friday night is as complicated as planning a two-week vacation.

"The model we're given now is this idea of mainstreaming," Pruessen explained. "The idea is, get the disabled person into the community. But that breaks down at some point because my sister is never going to be able to be part of the community. It's noticeable, for instance, that she's physically different. If you take her into a hair salon, she's going to get looks. Is that fair to her? Is it not reasonable to expect her to be able to get a haircut without weird looks?" We spend eighteen years integrating people like Walker into public schools, and then at eighteen, when they come to the end of high school, we turn them back out into a society that is anything but integrated. Walker will be saved that fate because he has never been capable of being "integrated" in the first place.

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 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." 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 a.s.sistants. 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 friends.h.i.+p, and fellow feeling, and companions.h.i.+p. 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 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. 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 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 a.n.a.lyze 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. 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 a.n.a.lyze 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 pa.s.sed after Walker's genetic tests before I stopped resenting genetics. I didn't resent Kate Rauen-her isolation of genes a.s.sociated 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 d.i.n.ky 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 A Life Decoded. "Genes," he writes, "did not make us, body and mind."

At the University of Oxford, a renowned gene man named Denis n.o.ble-the author of The Music of Life: Biology Beyond the Genome The Music of Life: Biology Beyond the Genome-went even further. It was one experimental thing, n.o.ble said, to find a gene a.s.sociated 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 antic.i.p.ated. But genetic physiology in humans-the way genes actually work-is exquisitely more complicated than anyone imagined.

More to the point, n.o.ble 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. n.o.ble maintained that it had nothing to do with genes. It's a controversial view, but n.o.ble insisted on it. "At the level of nerve cells and a.s.sociated 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 Inst.i.tutes 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 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." (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 a.s.sociated 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 s.p.a.ce, 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 bas.e.m.e.nt 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.