For his third (and, though he could not know it, final) game, Nick had something prepared for the brief, stilted chats between Alex Trebek and the contestants.
TREBEK: Nicholas Bérubé, one thing we’ve discovered in your two appearances on our program is that you seem to be very well prepared. And . . . you had help.
NICK: I did, yes! My little brother Jamie, who’s actually in the audience right now—he’s over there [points]—helped me, especially with the painters and composers, ‘cause he’s got all that stuff completely locked down and I’m a little iffy on it, so we just went through . . . baroque, Impressionist, all that stuff. . . .
TREBEK: Is he going to try out for the program?
NICK: He better, yeah, he better do it.
I was flummoxed, caught totally off guard. It is true that Jamie has a brilliant cataloguing memory for the major artists and composers of Western Civ—so much so that he introduced a graduate student in Penn State’s School of Music to some new material. A few months after Nick’s Jeopardy! appearance, Mark Minnich, who tutors Jamie in music for an hour every Wednesday (this was Jamie’s idea, and I got in touch with music faculty who might know someone who wanted to work with Jamie), asked by e-mail, “Would it be OK for me to mention Jamie in the acknowledgments of my thesis? He gave me the original idea for what I’m writing about (motivic inspirations for Maurice Ravel’s Tzigane) through his interest in the music of Leoncavallo, whom I’d never heard of before Jamie asked.” And ever since he was first introduced to the medieval-Renaissance-baroque-classic-romantic-modern-atonal-contemporary narrative of Western music and the medieval-Renaissance-baroque-neoclassical-romantic-realist-impressionist-postimpressionist-modernist-Cubist-abstract expressionist-postmodernist narrative of Western art, Jamie has gotten all that stuff locked down. It is true that Jamie helped Nick to prepare for Jeopardy!, though the moment I remember best involved Rachel reading a clue from a show that aired long ago (the Internet being what it is, of course there is a site that archives all Jeopardy! questions since the fall of Troy). It was a $2,000 question, a tough one, in a category dealing with anatomy, and it said something about a tube in your body that stretches from this point in your body to that point in your body. As Nick, Janet, Rachel, and I riffled through our mental files on bodies and tubes, Jamie chimed in, with perfect hanging-out timing, “What is the esophagus?”
So I supposed that if Nick were going to give Jamie a shout-out on national television, it would be for the esophagus rather than for the painters and composers. But in the end, I didn’t care what domains of knowledge Nick credited to Jamie.
When Nick gestured, in that exchange with Alex Trebek, saying, “He’s over there,” the Jeopardy! crew was ready with a camera trained right on Jamie. I had seen the cameraman standing over us, of course, and I saw when his bright light came on, and I knew we were being taped; but I never thought Jamie would actually appear on TV, because Jeopardy! almost never does audience shots.
You can find that episode somewhere in the vast breadth and depth of the Internet, I guess, but if for the demands of intellectual property law and the protocols of network broadcasts you have to rely only on my account of that cutaway shot, here’s what happened. Nick thanked Jamie for his help, and the Jeopardy! crew, knowing in advance that Nick would do this, turned the camera on Jamie, who nodded in acknowledgment and then coyly winked at the folks in teeveeland. And when the bright light went off and the cameraman returned to the ordinary business of filming a game show, I doubled over in my seat and sobbed.
Not because I am not sure that Jamie should be a contestant on Jeopardy! But because I can’t imagine a contestant on Jeopardy! making better use of his thirty seconds of chat-with-Alex time than Nick did that day. And I can’t imagine a better place to rest, for now, amid the waves of our sons’ lives.
To His Health
In one way Jamie is the healthiest person in his family: he’s the only one of us who doesn’t have asthma and animal allergies. He does not often get colds, despite his cold-prone infancy. He does have recurring cysts on the back of his neck, on the right side, that are occasionally large and painful and always cause for parental concern. (We have had him seen by a dermatologist. But we were not sure that we were doing enough, so we took him to a second dermatologist and then to a cosmetic surgeon, who removed some cystic material from his neck.) And he has flat feet, for which we should have gotten him orthotics inserts years before we finally did so, in his early teen years. He takes Levothyroxine (synthroid) for hypothyroidism, and he is diligent about taking his pill every day in the late afternoon. Otherwise, he’s perfectly all right.
Most of this chapter will be devoted to the moments at which he was not perfectly all right, and I hope this narrative will be of some use to parents, caretakers, and people in the medical professions. I will close with a pleasant little rant about health care in general. But subtending this narrative is a particularly dicey version of the larger question of this book, namely, How did Jamie mature through childhood, adolescence, and adulthood? Every child who makes it to adulthood has navigated his or her way through health issues ranging from mild to severe, and every parent who is doing his or her job watches anxiously over every sick child. And yet Jamie’s journey was a bit more harrowing at times of crisis, because he could not give so full an account of himself as could most children his age (and to this day he underreports pain—so far as we can tell, since this question entails very difficult philosophical questions about pain and language) and because for a painfully long time, he could not understand what was happening to him or why he was being treated in this or that way.
Likewise, every child is liable to stick his or her finger in the electrical outlet or wander off into the woods. But Jamie, in this as in so much else, was more vulnerable than most. I think of the evening of the Pizza in the Microwave Incident, late in 2001. I had just gone upstairs to get dressed for a dinner with friends (our bedroom is on the third floor of our house) when I heard ten-year-old Jamie coming up the stairs and calling, “Daddy, Daddy, help!” I remember thinking petulantly, What can it be now? I have been up here for all of thirty seconds, before hearing Jamie add, “Kitchen, stove, smoke,” which wasn’t a proper English sentence but managed to convey the urgency of the situation very efficiently. As I ran downstairs to see precisely what was happening with the kitchen and the stove and the smoke, I realized that Jamie had decided to reheat a slice of pizza for himself without removing the aluminum foil in which it was wrapped. The foil was burned, smoke was everywhere, and the smoke alarm was screeching.
Jamie was horrified, so I assured him that although he had certainly made a mistake by putting aluminum foil in the microwave, he had done exactly the right thing by coming to get me. No, I was not upset. No, I was not angry. I have yelled at Jamie in the course of his life, a handful of times, always when he is being obstinate to the point of extreme orneriness. (My favorite example comes from his early childhood, when Janet, exasperated by his dawdling before bedtime, issued the ultimatum “Get ready for bed or else,” and he replied, in precisely the same tone of urgency, “Else!”) Strangely, yelling never helps. What does help in those situations is saying, “You are making me very aggravated and I am wanting to use my loud voice.” But this was not an occasion for a loud voice. This was an occasion for developing a new Microwave Protocol according to which one should take the pizza out of the foil, put it on a plate, and reheat it for twenty-two seconds. Jamie followed this protocol so faithfully that he began to chastise me whenever I microwaved something for him for half a minute or more.
The other moment of danger in Jamie’s life was far more serious. I cannot think about it now without a shudder. He was in Penn State’s indoor track facility, along with the rest of the Special Olympics track-and-field athletes and some of their parents. Most of the time, Janet and I simply drop him at track practice on Mondays at 6:30 and pick him up again at 7:45, but for the first couple of years I stayed with him during practi
ce and usually did professor work—reading, mostly, or grading papers. But on that one night, before practice started, the indoor track was banked, and the turns were raised, as they would be for an intercollegiate event. Banked curves are not necessary for Special Olympics track practice, so someone decided to flatten the track. Incredibly, Jamie was resting on one of the track’s barriers, a metal fence with three rungs. One of his feet was on the lowest rung of the fence, and the other . . . was about to be crushed by whatever hydraulic mechanism raised and lowered the curves of the track. Panicked (and this was a time for a loud voice!), I screamed, “Jamie!” and dashed to pull his left leg out of harm’s way. My timing was like unto the timing of heroes in science fiction and action movies who disarm the self-destruct device with 00:01 reading on the liquid-crystal display: I yanked his leg just as the track came down on his sneaker. The sneaker was briefly trapped, and was freed only when the track operator raised the track again briefly. Jamie’s foot was fine. But if I hadn’t been right there, at just that moment? Or if I had been up in the stands, doing professor work? I have to think that the front half of Jamie’s left foot would have been crushed, damaged beyond repair.
OK, I have stopped shuddering now. His foot is fine. He is perfectly all right.
The episode highlighted something important for me, quite apart from the obvious OMG my kid’s foot is going to be crushed by a huge machine. Thanks to the disability rights movement and its academic offshoot, disability studies, we have become accustomed to understanding disability not as a matter of individual bodies and minds but as a matter of forms of social organization. In the standard disability-studies example, wheelchair users may have impairments that do not allow them to walk, but they are disabled by the social arrangements that do not provide curb cuts, ramps, kneeling buses, or widened doorways and bathroom stalls. The distinction between impairment and disability is critical to any understanding of how and why disability is a social phenomenon, and it is especially pertinent, I think, to people with physical disabilities, many of whom can function reasonably well in the world if they have closed captioning or Braille or ASL interpreters or ramps or curb cuts, kneeling buses, and widened doorways. It is arguably less useful for people with intellectual disabilities or mental illness, who might need more complicated accommodations and/or medication and who might find themselves “disabled” in every conceivable form of social organization.
The “social model” is an absolutely essential corrective to any of the usual “medical” understandings of disability as deficit, debility, or disease. And yet I cannot think of Jamie’s brush with serious injury except in terms of deficit, of loss. No disability rights advocate or disability-studies scholar would say that it does not matter whether people with disabilities acquire more disabilities. One can say this without re-stigmatizing disability across the board: Jamie is a young man with Down syndrome, and Down syndrome seems to me an ordinary form of intraspecies variation. It is not a “disease” that needs to be eradicated from the species. I do not waste my time (and will not waste yours) thinking about what Jamie would be like if he did not have Down syndrome; if he did not have Down syndrome, he would not be Jamie. We love him for the person he is, and do not worry about the person he might have been if he were an entirely different person. All that said, we would rather that his foot not be crushed by a huge machine. That would entail a disability we would consider to be a significant loss.
In his early years, Jamie was so well treated by every medical professional he encountered—from the NICU nurse, Kay, who devised an effective way of bottle-feeding him, to all the occupational and speech therapists he saw in his early childhood—that it never occurred to me that anyone would offer him a lower standard of care because of his disability. So it took me longer than I would like to admit, in retrospect, to figure out what was going on with his dentist. When Jamie was eight and a half, I asked his dentist why Jamie still had so many baby teeth and why all his teeth were so crooked. I was assured that it was no problem. I was incredulous; how, I wondered, is it not a problem that his baby teeth are hanging around so long and preventing his adult teeth from coming in straight? Within the week I got a second opinion from another dentist who, quite sensibly, told me that this was potentially a serious problem and that Jamie should be referred to an orthodontist who would do some tooth extractions. I can only think that the first dentist, whom we never saw again, was thinking C’mon, the kid has Down syndrome, and you’re worried about a little thing like his teeth? (We have since encountered a similarly deplorable attitude with an ophthalmologist.)
Later that same year, Janet learned that Jamie had developed sleep apnea, a condition for which a tonsillectomy is usually recommended. So Jamie went into surgery for a tonsillectomy and a multiple tooth extraction. We wanted to have these things done before we left Champaign, Illinois, and all the doctors most familiar with him (we would be moving at the end of the month), and we wanted to combine the procedures rather than submit Jamie to general anesthesia twice with his possibly compromised airways. (Children with Down syndrome typically have smaller nasal and throat cavities.) Jamie’s tonsils and five of his teeth were to be removed in two simultaneous surgical procedures, involving one surgeon from ear-nose-throat and another surgeon from oral-maxillofacial in a plan that required only eleven months of preparation and a couple of reams of hospital paperwork.
Jamie had very little idea of what would happen to him before he went in for surgery that day—and what pained us most, in the aftermath, was his bewilderment. Months earlier, he’d been subjected to the requisite sleep apnea test, which required him to show up at the hospital for an overnight stay during which he would have an array of electrodes fastened to his skull. Janet accompanied him and assured him that although he would have to wear some “wires,” everything would be all right. Jamie responded by asking whether “Lemur,” his little stuffed lemur (all his stuffed animals had such names, like “Anteater” and “Buffalo” and “Gibbon”; only later did he get more fanciful and start giving his animals names like Glenn Close, Mister Kooshduck, and TV Woman Show), could have a wire too; the hospital tech staff went along, dutifully prepping Lemur for his electrode. All this was very cute, as was Jamie’s faint but palpable delight, in his post-surgery bed, at having four small stuffed animals stacked on his bed, all of whom would fall over when we pulled Anteater’s nose. But in the exhausting weeks that followed his surgery, nothing was cute and nothing was delightful.
Jamie had his surgery on a Tuesday morning, and his doctors determined that it would be best for him to stay overnight. Janet stayed with him. He coughed up some blood that night, but his surgeon came in to look at him and decided that all was well. Janet, now on high alert, didn’t sleep again until I arrived early the next morning. Jamie was watched carefully all day, particularly for signs of dehydration, and was released later that afternoon.
We told Jamie that he needed to drink lots of juice and Gatorade. Jamie’s throat was raw and five of his teeth were missing; he didn’t feel like doing anything but watching TV and drifting in and out of sleep, which was most unlike him. Janet kept up a steady flow of liquids—and warnings, gentle but firm: You have to have fluids, and if you don’t drink them through your mouth, we’ll have to go back to the hospital for an IV. And you don’t want that, so here’s your juice, and your pillow, and your lemur, too.
On Friday morning Janet left Jamie in the playroom for a moment, put on some coffee, and then came back to find him bleeding from the mouth. Lucy the Dog, with her preternatural dog-sense and her vigilant love of Jamie, had run into the kitchen to alert Janet that something was wrong: he had popped a bleeder, as they say in the business. But we didn’t know that at the time. All we knew was that we needed to get him to the hospital immediately for another dose of general anesthesia and (at the very least) a cauterization of whatever had opened in his throat. Jamie looked at me desperately and pointed to the blood that had soaked his shirt. “Please clean?” he asked
in a tremulous voice.
Jamie was treated and released on the same day. Although the morning had been dramatic and heartrending, it gradually became clear that the bleeding was only a minor glitch, that a quick cauterization would in fact do the job. So Jamie was all right physically by Friday night, but psychologically he was shaken. For seventy-two hours he’d been told that if he drank his juice and Gatorade he would get better and wouldn’t have to go back to the hospital. He’d done as he was told, but to no avail: he’d gone back to the hospital anyway, to anesthesia and grogginess and a fresh IV in the back of his aching hand. And now he was inconsolable.
The weekend was terrible. Because we would be moving to Penn State in three weeks, Janet had to fly to Pennsylvania to close the deal on our new house. Nick and I had Jamie for four solid days. Jamie doesn’t eat sweets and was oblivious to all the nurses and assorted well-wishers who tried to cheer him up with meaningless promises of ice cream and popsicles. His throat was now so sore and scraped that even the tiniest little swallows were excruciating, and I had to force fluids into him every day along with 10cc of Tylenol every four hours and antibiotics every six. To get anything into him I had to immobilize his limbs and his head with one arm while squirting a syringe into his mouth with the other. The pain this caused him—especially when he protested vocally—almost made the Tylenol seem worse than useless. It was like his infancy all over again, except that now he was nearly ten, and fully conscious of everything I was saying to him, and very strong in resistance—though he was weakening measurably every day, and that wasn’t a welcome development either. I took him to the movies again and again, hoping he would forget himself and drink some soda along the way; back then, he would routinely drain a large cup before the opening credits finished rolling. We saw Shrek four times in five days, and Jamie drank some Sprite and Gatorade each time, much to my relief. Thank you, Shrek.
Life as Jamie Knows It Page 6
