Sam calls soldiers. Winston has managed to obtain British army directories for him. “I know these soldiers are frightened, and I know that they think they are doing something important, too,” Sam said. “English boys and English men are beautiful. Very nice rosy skin. The first time ever I was in love was with a British soldier. It was a very painful experience because it was love at first sight. We talked for an hour and I wanted to spend my life with him. We never saw each other again. His name was Sergeant Gibbs. I was twenty-seven and he was thirty-three. I wanted to kiss him, but he was holding a machine gun. My heart was broken after that. Our first cat died soon after that happened. It was a really difficult period.” Winston explained, “There’s a guy manning the gate in one of these big government buildings off Hyde Park. Sam had a twenty-minute conversation with this guy, and he only knows his last name, Gibbs. But this guy became his dream hero, as if they had an entire relationship.”
“We know where Sam’s military fixation comes from,” Patricia said. “It is a sexual fixation and a very familiar one. But also, he thinks of himself as living in a war zone and feels these people understand what it’s like to survive in war conditions. I can’t believe they’ll talk to him, but they do. What poisons it is that he calls again and again and again. I say, ‘Write down every call and keep a schedule of when it’s okay to call back.’ I open a four-page phone bill, and I say, ‘Don’t you think you’ve been calling a little too often?’ He explodes. ‘No, I’m not, I’m not, they don’t mind.’” Patricia finally put her foot down and said, “You just can’t keep making these phone calls,” and Sam hit her. Winston called the police. But they remain afraid that setting firmer limits will only aggravate things.
“Sam and I went to Montreal every year,” Winston said. “I would take him to see the Black Watch guys play bagpipes. Six years ago, Sam asked, could he talk to somebody in the Black Watch? They sent down a guy who turned out to be gay. He and Sam kept in touch, and when we went back the next year, Sam was determined to lose his virginity. I gave him some prophylactics, and the guy was going to take him to a bathhouse. I was by the phone waiting: Will it be awful, wonderful? It wasn’t anything. The guy realized he didn’t want to be responsible. He’s now an enemy, like everyone Sam’s ever met.”
I met Sam for the first time over lunch in Princeton. He and Patricia had cooked together; it’s their most peaceable mutual activity, and they assembled a delicious meal. Sam announced, “This was the worst winter of my whole life. I attempted suicide about six times.” Patricia, who was at the table, said, “You thought about it; you didn’t try.” Sam said, “I had a knife at my wrists. I suffered two nervous breakdowns. I’m very sensitive to medications.” “And alcohol,” Patricia said. “And drugs,” Winston said. “And people. And life,” Patricia said. Sam receives some SSI—disability benefits—as well as an allowance from his parents and is planning a move to the UK. “But Patricia has just been a bitch! She’s been the bird of doom. ‘You’re not going to England! Forget it!’ That’s all I hear from her. I’ve told her it would ruin my life if I didn’t go this year, and it doesn’t matter how many times I tell her that.”
In fact, a great deal of love and insight emanates from these bewildered parents. “I don’t believe in normality,” Winston said. “It’s just an averaging of extremes.” Patricia said, “He thinks when the right records come in the mail, his problems will be solved. Or maybe he can get unstuck by moving to England. It’s the lack of filters, the lack of self-control, the lack of ability to stick at anything, that’s the problem. The rest of it is reality. He has no friends. He has no occupation. We’re just the evidence of his dependence. If we say no to something that he wants, then it’s ‘You’re not letting me live my own life.’ When we say, ‘There’s nothing we would like better than to enable you to live your own life,’ then it’s ‘You want to throw me out on the street.’ He can analyze the situation just as well as I can. But it’s not remediable. The hallucinations are really the least of it.”
Before I left Princeton that day, I went to say good-bye to Sam. “Hey, thanks,” I said. “I know it can be hard to have a total stranger come into your house and ask you all these questions.” To my surprise, Sam gave me a warm hug, then looked me in the eye and said, “You didn’t seem like a stranger to me.” A deeply touching capacity for connection flashed in the room, and some self beneath the illnesses he had been parading seemed to touch me. Then it was gone again, lost in a monologue about a record I’d never heard of and that may not exist.
One of Sam’s doctors told me that he probably has a neurological syndrome based in part on fetal development, manifesting in ways we cannot chart. The topic of diagnosis provokes a noise from Patricia that is equal measures a laugh and a suppressed sob. “It’s been very difficult lately, with a lot of shouting and slamming of doors, and rising blood pressure,” she said. “I’m in fight-or-flight mode, and we shouldn’t be fighting and I shouldn’t be fleeing. I control myself most of the time, unless I’m very, very tired. Sam’s latest psychiatrist presented the case at a meeting and came back and said, ‘They all agreed he needs structure,’ and I looked at him like, ‘What do you think I am, an idiot?’ I never thought of that—Sam and structure! Come on over to our house and see if you can create any structure! We’ve done everything known to human beings to create structure.”
Their progress has been to stop anticipating progress; that is its own kind of peace. “The problem,” Patricia said, “is that we’re growing older, and we haven’t even written a will, because we don’t know what to put in it. There’s no one to look after Sam. My fantasy is that we’ll make it until he turns fifty-five and then he can go into assisted care. So I have to keep this up into my eighties. It’s particularly hard on Winston, but it’s very hard on me, too. But it’s worse for Sam. He picks up on the ways that we’ve given up, he must. He’s very, very sensitive. I wish I could protect him from our despair.”
• • •
Families rise to the occasion of various difficulties, struggle to love across those divides, and find in almost any challenge a message of hope and an occasion for growth or wisdom. In some instances schizophrenia and related psychotic disorders may be put into this service. Nonetheless, schizophrenia may be in a class by itself for unrewarding trauma. The rich culture of Deafness, the LPA-centered empowerment of dwarfism, the extreme sweetness of many Down syndrome children, the self-actualization of the autism rights brigade—none of this is really present in the world of schizophrenia, Mad Pride notwithstanding. We may hesitate to cure some problematic illnesses because they are also rich identities, but schizophrenia cries out almost unconditionally for treatment. The remarkable parents I met during this research would be better off, as would their children, if schizophrenia didn’t exist. To me, their suffering seemed unending, and singularly fruitless.
VII
Disability
TAKING THE TRAIN
Someone says things will be better for him
In the mountains
So we board the morning train,
Hoping to reach the bright, whitewashed city
In the blaze of afternoon.
I have everything he will need:
Magazines with pretty pictures,
The Christmas candy he wants all year,
His water bottle and specially shaped spoon.
Quiet and happy, my son dozes.
His half-grown chest rises and falls
In silent hosannas, his breath bubbles
Milky as a newborn calf’s.
The train bores through rock and scrub oak
For hours until suddenly, off to the right,
Glints the fierce splintered eye of the ocean.
This is not the way to the mountains
And why is everyone speaking Spanish?
I knew Spanish once
A uniformed official mimes his need
To punch our tickets, but
My purse contains only two maps<
br />
Of coastal Texas.
The official stops the train. Something must be done with us.
A tall station of polished mahogany
Looms in the green shade of palms.
In our coach, three rows of seats have vanished.
Where they stood, sand dusts the floor.
I must find my suitcase.
In it are knives, and a camera
To record what is happening to us.
The row of seats in front of us
Vanishes.
The row of seats behind us
Is gone too, all its people gone.
The sand whispers higher, to my ankles.
I find my suitcase in the next car,
Catches sprung, knife blades crumbled to rust,
The camera full of sand.
Only five seats remain.
In our two, another dark-haired woman
Tucks a blanket about the knees
Of another retarded boy.
I recall a Spanish phrase:
¿Dónde está mi hijo?
A young woman answers:
They put him off the train.
The train is moving again, fast.
The sand in the coach has climbed to my knees.
Outside, a desert stretches to the horizon.
Somewhere along the endless dunes
My son crawls alone,
Without even his walker.
Every morning of our lives
We board this train
And ride to the point of our separation.
—Elaine Fowler Palencia
Disability describes the older person whose bad ankles make walking long distances a trial, and the returning veteran who has lost limbs. The word is also used for people who would once have been classed as mentally retarded, and for anyone whose sensory apparatus is severely compromised. Multiple disability refers to people who are impaired in more than one way or from more than one ailment. Severe disability indicates a considerable impairment. Multiple severe disability (MSD) refers to people with an overwhelming number of challenges. Some people with MSD are incapable of controlled movement, locomotion, verbal thought, and self-awareness. Shaped more or less like other people, they may not learn their name or express attachment or demonstrate basic emotions such as fear or happiness. They may not feed themselves. Yet, inexorably, they are human, and often, they are loved. The passion for such children contains no ego motive of anticipated reciprocity; one is choosing against, in the poet Richard Wilbur’s phrase, “loving things for reasons.” You find beauty or hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate, and improve one’s children; people with multiple severe disabilities may not become anything else, and there is a compelling purity in parental engagement not with what might or should or will be, but with, simply, what is.
Although the vagueness of the criteria for MSD makes it much harder to collate the relevant statistics than it is for single, clearly defined conditions, about twenty thousand people with MSD are born in the United States each year. Many who would not have lived beyond infancy are now surviving much longer because of evolving medicine. People actively debate whether extending the lives of these children should always be given priority regardless of their perceived pain and regardless of the ramifications for those who will be responsible for them. Thirty years ago, parents were advised to relinquish severely disabled children, often to let them die. In the last twenty years or so, they have been told to keep and love them. Most states offer supplemental income for family members who have to give up work to take care of an MSD child, as well as respite, health-care, and in-home services. People with MSD who can absorb some schooling have access to a more inclusive system. These services are not provided out of mere kindness; higher-functioning people are less expensive across their life span. For every dollar spent on vocational rehabilitation for people with disabilities, the Social Security Administration saves seven dollars.
• • •
David and Sara Hadden married in their early twenties and prepared for a high-powered life in New York. David worked at Davis Polk, one of the city’s finest law firms, and Sara soon became pregnant with their first son, Jamie. Three days after he was born in August 1980, an intern entered her hospital room and said, “Your son just turned blue, and we don’t know what’s going on.” The doctors couldn’t find anything wrong and sent the family home with an apnea monitor that would sound an alarm if Jamie’s breathing stopped. It never sounded, and David and Sara thought he was fine. When he was about three months old, their pediatrician said Jamie’s head size was not following the normal growth curve and suggested a skull X-ray to make sure his sutures—the elastic part of the infant skull—hadn’t closed prematurely. The sutures were fine. “We went, ‘Whew!’” Sara recalled. “Ignoring the fact that his head wasn’t growing.”
A few weeks later, the doctor said they should visit a neurologist, and they duly went to Columbia-Presbyterian, where a neurologist said that Jamie had salt-and-pepper pigmentation of his retina, then explained, “You’ve got king-sized problems. If you’re thinking of having more kids, put it on hold. This child is blind, and probably is going to be severely retarded, and may not live long.” Then he took a telephone call and said into the receiver, “I’m seeing a couple now with king-sized problems. On a happier note”—as he said “happier,” the couple leaned forward expectantly—“I wanted to talk to you about another case.” David and Sara walked out of the office in silence.
The next morning, Sara said to David, “I don’t know why I’m saying this, but I feel very strongly that we need to have Jamie baptized.” They hadn’t gone to church in many years, but they looked in the yellow pages and found one around the corner. “I didn’t understand it then,” Sara said, “but I think I was acknowledging that Jamie had a soul. I’ve bristled at someone patting me on the head and saying, ‘God has his mysterious ways.’ I believe that life is a mystery, but I don’t think we were given this situation from a specific deity for a specific reason. Still, we found a comfort in the church.” David said, “When Sara asked to baptize Jamie, that was the beginning for us.”
All Sara had accepted at that point was that Jamie was blind; she thought that his delays were tied to his lack of vision, and she resisted knowing that his brain wasn’t growing. A month after visiting the neurologist, she and David took Jamie for an EEG. The EEG technician was digging into Jamie’s skull as she applied the electrodes. “That’s when we became advocates,” David explained. “That’s when we said, ‘No, goddammit! You’re not going to do that with our child.’ That was a first; I had always been a well-behaved person who followed the rules. Jamie has made me a far better lawyer. He has forced me to develop advocacy skills that have sprung from passion as opposed to intellectual arguments. We have consented to being interviewed despite being very private people because it’s part of advocacy. And Jamie’s been a pioneer in that arena, right from those first hospital visits, and we’re very proud of him.”
At two, Jamie could push himself up into a sitting position, but at three he lost that ability; he was able to roll over until he was eleven, but can no longer do so. He has never developed speech or fed himself. He could urinate at first, but the relevant neurological processes soon failed, and he had to be permanently catheterized. “When we learned that Jamie was retarded, I was afraid,” Sara said. “I had this Helen Keller vision that if I found the right key, if I could just do the signs in his hand long enough, he would learn to talk. All of his teachers were urging me, saying, ‘Yes, yes, yes, that’s what you need to do, the more the better; maximize his potential!’ It was wonderful support in one way, and an amazing guilt trip in another way.”
Jamie’s doctors were fairly confident that his condition was anomalous, and when Jamie was four, the Haddens decided to have another child. Their daughter, Liza, was born in perfect health. Four years later, they decided that it would
be good for Liza to have a sibling who could someday help her to care for Jamie, so they had Sam. When Sam was six weeks old, Sara was putting him to bed, and suddenly he started twitching, and Sara immediately knew it was a seizure.
“With diagnosis, you have prognosis,” Sara explained, “and with prognosis, you have greater peace of mind.” But diagnosis remained elusive, even though it was soon clear that the two boys shared a syndrome. The Haddens have run advertisements in hospital journals and in Exceptional Parent magazine, seeking other children with a similar condition. They’ve had workups done on the boys at NYU and Boston Children’s and Mass Eye and Ear; they’ve corresponded with doctors at Johns Hopkins. The constellation of symptoms experienced by Jamie and Sam seems to be unique, so no one has been able to predict how the boys would best be treated, how much they might deteriorate, or how long they might live.
Sam was even more fragile than Jamie. He kept breaking his legs because he had brittle bones; he ultimately had total-spinal-fusion surgery. Fed through a tube from a much earlier age than Jamie, Sam vomited all the time. At two, he spent six weeks in the hospital for continuous seizures. When he was admitted, his cognitive abilities were greater than Jamie’s, but after that six-week period, he lost them. David and Sara both became snowed under. “People kept saying, ‘Why don’t you get help?’” Sara said. “But the idea of help was as overwhelming as the things we needed help with.” When she explained to Liza that Sam was going to be like Jamie, Liza said, “Give him back and get another baby.” This was hard to hear because it was just what Sara was thinking herself. “That was about the depression; that wasn’t about not loving him,” Sara said. “My big goal for the day at that point was running a load of laundry, and I didn’t always achieve the goal.” A few months after Sam’s diagnosis, Sara hit rock bottom. “I sat on the kitchen floor trying to convince myself to take both boys with me to the garage and turn on the car and let all of us go on the carbon monoxide,” she said.
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