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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.

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