The ‘Happy’ and the ‘Hopeless’

Werner Bischof/Magnum Photos
Students at the music teacher Mimi Scheiblauer’s school for deaf-mute children, Zurich, 1944

In 1981, I completed my fellowship training in blood diseases and cancer, and took a junior faculty position at the University of California, Los Angeles. During that first year at UCLA, a young man was hospitalized with a rare form of pneumonia caused by Pneumocystis carinii. He died despite the most intensive measures. Not long after his death, more men struggling to breathe were diagnosed with this infection; others sought care for an unusual colitis, cytomegalovirus inflaming their bowel, and still more for high fevers and wasting from an avian microbe akin to tuberculosis. Then several arrived with red and purple tumors that grew to distort the face, swell the limbs, and block the throat. Biopsy showed Kaposi’s sarcoma, a tumor sporadically seen in the elderly and in an endemic form in Africa.

All of the patients proved to share one laboratory abnormality: low numbers of T-lymphocytes, blood cells crucial to immune defense. But what also linked them was their sexual orientation, and this led some to name the new disorder “GRID,” for gay-related immune deficiency. Later, it would be known as AIDS.

From much of society, there was scant sympathy for these suffering men. Fundamentalist preachers thundered that the malady was deserved, a manifestation of God’s wrath visited upon sodomites. Many in government expressed no interest in a rare disorder striking what they viewed as a marginal group. And some health care workers shunned the patients, not just out of fear for their own health, but disdain for homosexuals.

As a new faculty member with expertise in oncology, I was asked to help care for the men with tumors. And since my laboratory research involved T-cells, I also joined the larger effort to identify the cause of the new malady.

At the beginning, no one knew its explanation. Was it an infectious agent, perhaps a mutated T-cell leukemia virus like the one I was studying? Was it due to a collapse of the immune system after exposure to antigens in semen and toxic party drugs like “poppers,” amyl and butyl nitrates? So, in pursuit of a cause, we not only took a medical history and performed routine laboratory tests, but conducted sophisticated studies on blood and other body fluids and delved into the intimate details of these men’s lives. I met teachers, firemen, lawyers, teamsters, and architects. At first, they were wary in answering, our questions opening up parts of their lives that they had learned to keep shielded. But over time, trust grew, and a largely hidden culture was thrust to the fore by illness.

Over several years, I heard the life stories of hundreds of gay men. And as I listened, I felt a growing kinship with them. Unexpectedly, it grew from being raised in a traditional Jewish family in the shadow of the Holocaust. My mother’s uncles, aunts, and cousins in the Carpathian Mountains were all deported to Auschwitz in 1944. Few survived. After their liberation, those who did were sponsored by my grandmother to come live near us. From them I learned about the most extreme consequences of stigma, when Jews were cast as “the other,” less than fully human, contaminating society.

My parents raised us to never feel shame about who we are. Instead, they pointed to achievements by those who did not hide our heritage. Jonas Salk and Albert Sabin were celebrated for their work with polio. Sandy Koufax was the Dodgers’ star pitcher but declined to play on Yom Kippur. To be sure, my parents were more relaxed and open with those they termed “members of the tribe.” But they superseded this tribalism by a firm belief in human dignity and justice. I was taught the verses in the Hebrew Bible that man is made in the image of God, and became aware of the multiple injunctions to respect the stranger, as we were once strangers in a strange land.

Readers of Far from the Tree, Andrew Solomon’s far-ranging and detailed exploration of identity and illness, will likely reflect on their own memories of upbringing and of encountering the unfamiliar. At the outset, he proposes two broad categories of identity, vertical and horizontal:

Because of the transmission of identity from one generation to the next, most children share at least some traits with their parents. These are vertical identities. Attributes and values are passed down from parent to child across the generations not only through strands of DNA, but also through shared cultural norms.

Among these, Solomon includes ethnicity, skin pigmentation, language, and, as “moderately vertical,” religion.

Then there is the shaping of self that occurs outside the home:

Often, however, someone has an inherent or acquired trait that is foreign to his or her parents and must therefore acquire identity from a peer group. This is a horizontal identity. Such horizontal identities may reflect recessive genes, random mutations, prenatal influences, or values and preferences that a child does not share with his progenitors.

Solomon continues:

Being gay is a horizontal identity; most gay kids are born to straight parents, and while their sexuality is not determined by their peers, they learn gay identity by observing and participating in a subculture outside the family. Physical disability tends to be horizontal, as does genius. Psychopathy, too, is often horizontal; most criminals are not raised by mobsters and must invent their own treachery. So are conditions such as autism and intellectual disability. A child conceived in rape is born into emotional challenges that his own mother cannot know, even though they spring from her trauma.

Solomon interviewed several hundred families, and the contribution of his book is the depth and authenticity of their stories. A skilled listener, he succeeds in eliciting thoughts and emotions rarely revealed except to a trusted confidant. Far from the Tree is a feat of reportage.

In the opening chapter, “Son,” Solomon focuses his narrative lens on himself. He was raised knowing he was Jewish, but his mother despised this vertical identity. Her self-hate proved contagious:

I learned to hate this aspect of my identity profoundly and early because that crouching posture echoed a family response to a vertical identity. My mother thought it was undesirable to be Jewish. She had learned this view from my grandfather, who kept his religion secret so he could hold a high-level job in a company that did not employ Jews. He belonged to a suburban country club where Jews were not welcome…. She chose to marry my Jewish father and live in a largely Jewish world, but she carried the anti-Semitism within her…. Her method of rueful self-doubt was organized for me around being gay: I inherited her gift for discomfort.

Solomon enlivens this sober recounting with graphic humor:

When I was nineteen, I read an ad in the back of New York magazine that offered surrogate therapy for people who had issues with sex…. Taking my savings to a walk-up office in Hell’s Kitchen, I subjected myself to long conversations about my sexual anxieties, unable to admit to myself or the so-called therapist that I was actually just not interested in women. I didn’t mention the busy sexual life I had by this time with men. I began “counseling” with people I was encouraged to call “doctors,” who would prescribe “exercises” with my “surrogates”—women who were not exactly prostitutes but who were also not exactly anything else. In one protocol, I had to crawl around naked on all fours pretending to be a dog while the surrogate pretended to be a cat; the metaphor of enacting intimacy between mutually averse species is more loaded than I noticed at the time….
You were supposed to keep switching girls so your ease was not limited to one sexual partner; I remember the first time a Puerto Rican woman climbed on top of me and began to bounce up and down, crying ecstatically, “You’re in me! You’re in me!” and how I lay there wondering with anxious boredom whether I had finally achieved the prize and become a qualified heterosexual.

At a New York Public Library event, Solomon explained that the ensuing six chapters—on deaf people, dwarfs, people with Down syndrome, autism, schizophrenia, and disability—are linked by “illnesses…which everyone assumes to be biological, medical, often genetic.” The subsequent four involve “troubling identities”: they may be seen as prodigies or as associated with rape, crime, and transgender.

Solomon invokes a scientific metaphor to illustrate his belief that we need to broaden our understanding of “conditions”:

We often use illness to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy. In physics, the Copenhagen interpretation defines energy/matter as behaving sometimes like a wave and sometimes like a particle, which suggest that it is both, and posits that it is our human limitation to be unable to see both at the same time. The Nobel Prize–winning physicist Paul Dirac identified how light appears to be a particle if we ask a particle-like question, and a wave if we ask a wavelike question. A similar duality obtains in this matter of self. Many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness.

Then he calls for a new way of conceiving identity and illness:

Physicists gain certain insights from understanding energy as a wave, and other insights from understanding it as a particle, and use quantum mechanics to reconcile the information they have gleaned. Similarly, we have to examine illness and identity, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition. The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy. Wittgenstein said, “All I know is what I have words for.” The absence of words is the absence of intimacy; these experiences are starved for language.

To be sure, some terms impoverish and stigmatize identity by fusing it with illness, as in the acronym “GRID.” But this need not be so. Terms of value can come from “identity politics”; for example, grassroots activists coined the acronym “PWA,” person with AIDS, which was adopted by the medical profession. Indeed, the mentors who most inspired me in my training were attentive not only to physiology and pharmacology but also to language. When an intern on rounds would say, in hospital shorthand, “I admitted a brain tumor from the ER,” or “There’s a new Crohn’s on the ward,” he would be pointedly chastised by these professors. A patient was always much more than his illness. These knowing physicians seemed to have no need for a new syncretic vocabulary. Each patient was always to be seen as “a person,” never obscured by his malady. Further, society can grow to understand individuals as healthy rather than ill—evident, for example, in the elimination of homosexuality as a disorder in the DSM.

Corcoran Gallery of Art, Washington, D.C © Estate of Bernard Karfiol, courtesy of Forum Gallery, New York, NY.
Bernard Karfiol: Summer, 1927; from Youth and Beauty: Art of the American Twenties, the catalog of a recent exhibition organized by the Brooklyn Museum. It is edited by Teresa A. Carbone and published by Skira Rizzoli.

Crafting new terms that reflect the “syncretic mechanics” of illness and identity will be challenging, particularly if quantum physics is a precedent; scientists strain to describe in words the complex behavior of natural phenomena, and are forced to resort to mathematical equations. Meanwhile, when intimate experiences of self are starved for language, we turn to art: painting, sculpture, dance, and music.

Solomon’s chapter on deafness is one of the most tightly crafted. He fluidly explicates the mutations associated with inherited hearing loss, and charts the development of the cochlear implant and its considerable refinement over time. He also traces the history of sign language, its unique aspects in different cultures, and explains how its grammar differs from our speech, which illuminated for this hearing reader the remarkable capacity for expression among the deaf.

All of this is interwoven among a series of oral histories. There is Jackie Roth, a woman whose deaf parents suffered rejection and economic deprivation. Jackie has some hearing, and commutes between the worlds of the deaf and the hearing. Despite considerable financial and family obstacles, she succeeds as a college student and leads a fulfilling life. Her trajectory is told with great affection by Solomon.

In other cases, like that of MJ, we are made aware of their fierce pride in their condition:

MJ, in her early forties when we first met, has signing so swift, crisp, and perfectly controlled that she seems to be rearranging the air into a more acceptable shape. She had been one of the most vocal and articulate opponents of the language of disability. “I am Deaf,” she said, drawing out the sign for “Deaf,” the index finger moving from chin to ear, as though she were tracing a broad smile. “To see myself as Deaf is as much of a choice as it is for me to identify as a lesbian. I am living my cultures. I don’t define myself in terms of ‘not hearing’ or of ‘not’ anything else. Those who learn forced English while being denied Sign emerge semilingual rather than bilingual, and they are disabled. But for the rest of us, it is no more a disability than being Japanese would be.”

But then Solomon casts a sharply critical eye:

This is tricky territory. Some argue that if being deaf is not a disability, deaf people should not be protected under the Americans with Disabilities Act (ADA) and should not have the right to various mandated accommodations: translators in public-service venues, relay interpreters on telephone exchanges, captions on television programs. None of these services is automatically available to people in the United States who speak only Japanese. If deafness is not a disability, then on what basis does the state provide for separate schools and on what basis does it provide Social Security disability insurance?

The deaf community is still split over the issue of cochlear implants in the very young. This medical intervention provides hearing and is seen as a threat to their rich and unique culture:

Looking at the vogue for ASL [American Sign Language] among hearing people, the activist Carol Padden asked, “How can two conflicting impulses exist at the same time—to eradicate deafness and yet to celebrate its most illustrious consequence, the creation and maintenance of a unique form of human language?” One thing has no bearing on the other. You can admire Deaf culture and still choose not to consign your children to it.
The loss of diversity is terrible, but diversity for the sake of diversity is a lie. A Deaf culture kept pure when hearing is available to all would be the equivalent of those historical towns where everyone lives as though it were the eighteenth century. Will those born without hearing continue to have things in common? Will their language remain in use? Of course—just as candles have remained ubiquitous in the age of electricity, just as we wear cotton in a time of microfibers, just as people read books despite television. We will not lose what Deaf culture has given us, and it is a worthy cause to delineate what parts of Deaf culture are precious and why. But vertical demand for medical progress will inevitably outflank any horizontal social agenda.

While Solomon succeeds in unraveling such fraught points of contact between identity and illness, there are other moments when he seriously falters.

For example, he recounts the story of Lucy Grealy, who had a childhood cancer of the jaw that left her face deeply disfigured. “I knew Lucy, though not well, and I didn’t find her ugly.” But she saw herself as “grotesque,” and underwent repeated reconstructive surgeries that did not succeed. Grealy died of a drug overdose. Perhaps it would have been better, Solomon speculates, “if her energy had been focused on the singular intelligence” evident in her book, Autobiography of a Face. Then he offers a sweeping conclusion:

Her dream of vanquishing her problem, which was for decades sustained by doctors, did her in. Recent academic work suggests that people who know their condition to be irreversible are happier than those who believe their condition may be ameliorated. In such cases, ironically, hope may be the cornerstone of misery.

I was stopped by this. As a physician, I questioned the generalization that people who are hopeless about ameliorating their condition are happier.

In support, Solomon cites a single paper with the catchy title “Happily Hopeless.” Researchers at the University of Michigan surveyed patients who had undergone a colostomy; in thirty of them it was permanent, while in forty-one it was possibly reversible. One survey of the patients had a “satisfaction with life scale” with statements such as “In most ways my life is close to my ideal” and “So far I have gotten the important things I want in life.” Respondents indicated how much they agreed or disagreed on a 1 to 7 scale. A second survey used a “ladder scale” asking participants where, on a 0–10 ladder, they stand, with the top rung “the best possible life” and the bottom “the worst possible life.”

Over the six months after release from the hospital, those with a possibly reversible colostomy went from a mean life satisfaction score of 4.44 to 3.95, while those with a permanent colostomy went from 4.06 to 4.52. In each group, this represents a change of about 0.5. Using the ladder measure, the group with a potentially reversible colostomy went from 5.80 to 5.29, half a rung lower, while those with a permanent colostomy went from 5.57 to 6.89, one rung higher. The researchers concluded those with a permanent colostomy were happier.

A close reading of the article shows several differences between the two groups. Among the patients with permanent colostomies, more than half were women, and 60 percent had cancer. Among the patients with a temporary colostomy, about a quarter were women, and only 17 percent had cancer; most others suffered from colitis. Can a single study of small numbers of patients with different underlying diseases who check off numbers on surveys, and for whom we have no independent assessment of what their life is like day-to-day, month-to-month, be accurately judged as more or less happy?

I also evaluated this research not as a scientist but as a patient myself. Several years ago, I suffered a long period of excruciating leg pain after an accident. Immobile, unable to work, I lapsed into hopelessness. None of the physicians I consulted locally could offer a path to relief. I then contacted experts in nerve injury around the country, and while most were sympathetic, one displayed the dark side of some doctors. “You’re screwed,” he said. “If it’s gone on these many months, there’s nothing to do.”

Early in my career, I had prematurely taken hope away from several patients, and caused unnecessary anguish. This had taught me a hard and enduring lesson about the uncertain outcomes of illness. Fortunately, this expert in nerve injury was wrong. I later interviewed and wrote about other people with unrelenting pain, who were suffering from reflex sympathetic dystrophy (RSD) or chronic regional pain syndrome. Many with these maladies gave up after a myriad of failed therapies, lost hope, and were hardly happy; some ultimately ended their lives.1 It also surprised me that Solomon, who explored psychic pain in The Noonday Demon, would embrace the idea of being “happily hopeless.”

As patients, we negotiate with our condition, accepting some of its difficulties; but that acceptance does not translate into a joy of hopelessness. Indeed, some of the families described in the book have children whose conditions they accepted as hopeless—autism, schizophrenia, neurodegenerative disorders. They expressed their sustained misery, and their narratives belie such a counterintuitive assertion. Rightly, at the New York Public Library event, Solomon criticized facile measurements of happiness:

I think that it has been a harder life for me, and that I went through some very difficult periods…. If I hadn’t gone through these particular difficulties, would I be as happy now? Would I be happier? You know, happiness is very difficult to quantify. It doesn’t come sort of ounces [sic] or in one-ounce plastic bags or anything.

The awe and wonder of Solomon becoming a father fills the concluding chapter. His husband John Habich Solomon had previously donated his sperm to help a lesbian couple have two children, and one of the women offered to be the surrogate mother for Solomon’s child (whose egg was selected from a fertility clinic). Children try us and test us, temper us and teach us, and their presence in our lives can feel nothing less than miraculous. Solomon posits each child as fated in some way, and cites an eminent scientist to support this notion:

Roger Penrose, a British mathematical physicist, asked whether our physical world and the Platonic realm of ideas might be one and the same. He has suggested that the anthropic principle [the principle that observations of the universe must be compatible with the conscious life that observes it] may demonstrate that the universe has a structural need for consciousness—effectively, that the existence of anything proves its inevitability. Counter to the Copernican revolution, the anthropic principle suggests that human beings are not incidental; that our existence is evidence that we had to be; that the comprehensibility of anything is a function of our comprehension as much as the other way around. Subjectivity may be truer than objectivity. The idea has some resonance with parenting. Most of us believe that our children are the children we had to have; we could have had no others. They will never seem to us to be happenstance; we love them because they are our destiny.

Great caution should be exercised in calling on the physical realm to explicate the metaphysical. Freeman Dyson in these pages recently termed the Platonic explanation of existence a “poetic fantasy rather than a logical argument. Fantasy comes to the rescue when logic fails.” That is because “science is about facts that can be tested and mysteries that can be explored.”2 Solomon here upends not only Copernicus but Darwin. Further, reading the citation from Penrose’s book on quantum computing and artificial intelligence, we encounter a different conclusion:

By the use of the anthropic principle—either in the strong or weak form—one might try to show that consciousness was inevitable by virtue of the fact that sentient beings, that is “we,” have to be around in order to observe the world, so one need not assume, as I have done, that sentience has any selective advantage! In my opinion, this argument is technically correct, and the weak anthropic argument (at least) could provide a reason that consciousness is here without it having to be favoured by natural selection. On the other hand, I cannot believe that the anthropic argument is the real reason (or the only reason) for the evolution of consciousness. There is enough evidence from other directions to convince me that consciousness is of powerful selective advantage, and I do not think that the anthropic argument is needed.3

In his opening pages, Solomon invokes quantum physics, whose domain is uncertainty and probability, but he concludes with inevitability. What are the consequences of believing our children are those we had to have? In the chapter “Crime,” Solomon interviews the parents of Dylan Klebold, one of the Columbine killers. He poignantly writes that they “are victims of the terrifying, profound unknowability of even the most intimate human relationship.” In the absence of knowledge, should we conclude Dylan Klebold was an inevitable offspring? And do parents of criminal or severely autistic or neurologically disabled children—indeed any child—love them because they are their destiny? Solomon’s reductionist conclusion is deeply disappointing. Cosmic determinism is hardly the reason we cherish our children.

That human beings are resilient in the face of extreme circumstances, have a remarkable capacity to adapt, and summon the power of love to surmount daunting conditions are eternal truths made vivid in Solomon’s compendium of stories. Far from the Tree brings to mind the creed of the ancient Terence, “Nothing human is foreign to me.” Our shared identity always transcends illness.


What It Means to Be Deaf April 4, 2013

  1. 1

    See Jerome Groopman, “When Pain Remains,” The New Yorker, October 10, 2005. 

  2. 2

    See Freeman Dyson, “ What Can You Really Know?,” The New York Review, November 8, 2012. 

  3. 3

    Roger Penrose, The Emperor’s New Mind (Oxford University Press, 1989), p. 434.