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