On Desire and Disease

NOT LONG AGO, while walking through the halls of the hospital where I work, I overheard a conversation that made me cringe. A pediatrician was speaking with the mother of a boy who looked about 12. When the adults finally finished talking, the kid piped up. He jerked his thumb toward his mom and asked the doctor: “Can’t you please tell her not to make me go to my father’s house this weekend?” The pediatrician smiled awkwardly. “Well now,” he said, backing away, “I believe that’s a bit out of my bailiwick.”

I cringed at the pediatrician’s prissy deflection — bailiwick? — and also because his discomfort reminded me of my own. Patients often ask me about matters not within my expertise. One woman wants to know if she should stay with a husband who refuses treatment for addiction. Another seeks permission to skip a few days visiting her mother in the nursing home without feeling guilty. A third asks me to review with her the pros and cons of sending her daughter to private high school. While I possess no special knowledge about marriage, filial duty, or secondary education, I routinely offer opinions on these subjects, and I feel certain that doing so is as much a part of my role as a primary care physician as prescribing medication for high blood pressure, though I’m at a loss to articulate exactly why.

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The practice of medicine has long been dominated by science. But in recent decades patients, and many physicians, have been coming to the conclusion that evidence-based treatments by specialists (and sub- and sub-subspecialists) don’t necessarily supply what people need to heal. Physicians and nurses now routinely team up with mental health professionals, alternative practitioners, social workers, and chaplains to offer holistic care. I participate in such teams and value them, but I’m not sure that even holistic medicine fully acknowledges the difficult-to-measure therapeutic effects of empathy, attentiveness, humor, intuitive reasoning, the ability to inspire hope, and other qualities sometimes called “soft skills” (or, more appreciatively, “the art of medicine”) and which are as useful in my practice as penicillin, if not more so. Similarly, when I’ve been a patient myself, or when someone I love has fallen ill, I’ve been struck by the importance of these qualities to healing. In fact, I’ve been meaning to write an essay titled “The Power of the Ineffable in Medicine,” but I’ve felt daunted by how hard it would be, by definition, to put so vague a concept into words.

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Not so for David B. Morris, a writer and emeritus professor of English at the University of Virginia, who tackles this elusive topic in an ambitious new book, Eros and Illness. While he does not entirely avoid the epistemological pothole I myself dread, he admirably gives form to the formless and articulates that aspect of health and illness which is, as he puts it, “largely unseen, living in the shadows, as if its distinctive superpowers included a cloak of invisibility.”

Morris comes at this task not as a doctor or a patient but as a family caregiver. His wife, Ruth, developed an aggressive form of dementia in her 50s and died in 2016 at the age of 72. Once a bright and loving woman with a doctorate in library science and a passion for dance, in the last years of her life she was confined to a nursing home and no longer recognized her family. While Morris is sparing in his use of Ruth’s story out of respect for her privacy and his own — Eros and Illness is not a memoir or even a hybrid memoir — he makes a convincing case that, as a caregiver who is not a medical professional, and as a sufferer who is not a patient, he is uniquely suited to explore the in-between region of medicine: that place which is not in the realm of science and yet essential to healing. Morris calls this nether realm “medical eros.”

Eros with a capital E is the god of love (and fertility), but small-e eros has a much broader meaning, the exploration of which is central to Eros and Illness. The closest synonym to eros is “desire,” though, as Morris explains, it can also represent loss of control, a state of illogic or not knowing, and inner life or life force. “By definition,” Morris writes, “[eros] resists definition.” Accordingly, he approaches eros indirectly, through what he calls “piecemeal clarifications […] a slow, open-ended accumulation of specific instances.” Morris draws on examples of medical eros from history, art, literature, and popular culture; his points of reference span from Milton and Shakespeare to Nelson Mandela and Angelina Jolie. In an especially engaging chapter, Morris connects Amedeo Modigliani’s famous nudes to the artist’s tuberculosis and the carnage of World War I, during which Modigliani painted them, and also (charmingly, if digressively) to Philip Roth’s The Dying Animal — all part of what Morris calls his “sideways or slant approach to eros and illness.”

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Morris defines medical eros primarily by what it is not: biomedicine, or what he calls “medical logos.” He points out that medical eros and medical logos have been at odds since the time of Hippocrates, whose rational approach to healing competed with the divine cures (including raising of the dead) attributed to the god Asklepios. Today, Morris claims, the contrast is no less stark:

Medical eros, which I would describe — too simply, but for practical purposes — as the operations of desire within the context of health and illness, is engaged in a massive and mostly concealed struggle with the reigning power in Western health care, usually called biomedicine. Biomedicine, under the alias medical logos, views illness as calling for scientific knowledge, for evidence-based treatments, and for public policies governed by statistical, cost-benefit analysis.

Morris is quick to note that several of his family members are physicians, that Ruth was a medical librarian, and that it is not his intention to bash doctors or biomedicine. Still, when he characterizes medical eros as the opposite of medical logos, he clearly means this as a compliment to eros.

The other thing medical eros is not, Morris asserts, is sex. It may surprise fans of House and Grey’s Anatomy to learn that medicine is not very sexy. In fact, it’s anti-sexy. Doctors talk about erections and vaginal lubrication at dull conferences in hotel ballrooms with all the passion of commodity brokers discussing corn futures. For most clinicians, viewing and touching naked people all day in a clinic or hospital is remarkably unarousing. And for the patient, illness usually decreases libido. The clichéd fib “not tonight, I have a headache” has some basis in truth. Still, as Morris emphasizes, desire, if not sexual desire, is what the sick feel most strongly. We yearn to be well, to be free of pain, to be seen and heard, to be made whole.

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While much of Morris’s scholarly work has focused on narratives of pain, he explains that he did not become fully aware of the intensity of eros in illness until his wife began losing her memory. At first, his desire took the form of denial: for months he made excuses for Ruth “as dishes turned up in random cabinets and a mislaid exercise rope triggered meltdown rages.” When his wife’s cognitive decline was no longer disputable, Morris found himself feeling out of control, “knee-deep in the not known.” Most heartbreaking, however, are Ruth’s desires, which Morris can neither comprehend nor fulfill:

Every day brings the same tearful plea: “I want a dog.” […] Reluctantly, worn down, I get a dog — a cute rescue mongrel with heart disease, a huge disaster. But Ruth pays it almost no notice. Was “dog” a metaphor? I understand next to nothing about how her mind works.

As Ruth’s dementia progresses, Morris, a self-described loner, desires relief from isolation. He needs help but finds physicians unable or unwilling to provide it:

I was left alone to decide — the hardest day of my life — when it was time for Ruth to leave the home we had built together. She could no longer make decisions: it was all left to me. When I asked for help from her all-star medical center team, her neurologist replied coolly (from the far-side of logos): “Not a medical issue.”

Medicine’s narrow focus on logos fails doctors as well as patients, Morris argues. He cites a personal essay by physician-poet Rafael Campo, who, as a closeted gay intern, cared for an uninhibited transsexual patient named Aurora on an HIV ward. “His erection startled me,” the essay begins. The habit of maintaining emotional neutrality, assumed necessary and appropriate to his role as a doctor, extends into Campo’s personal life, and his own desires remain stifled. Campo writes that he was taught that his “job was not to feel but to palpate.” But his defenses break down as he cares for a patient who, unlike him, expresses desire freely. Only when Aurora dies does Campo, sobbing, finally come to terms with his own sexuality.

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Medical eros is never more powerful than when medical logos reaches the limits of its healing capacity. Morris’s elegant analysis of several patient memoirs attests to the palliative benefits of desire, even when doctors have declared someone incurable. The New York Times book critic Anatole Broyard’s posthumously published essay collection Intoxicated by My Illness is a particularly dramatic expression of desire by a patient. Broyard wrote the essays while dying of prostate cancer, an experience that, Morris writes, “sparked in him an improbable erotic elevation of spirit so intense as to resemble the euphoria of falling in love.”

Other patient memoirs Morris covers include that of Jean-Dominique Bauby, a French magazine editor who suffered a stroke at age 43 and became paralyzed, retaining only his ability to open and close his left eye. He wrote his memoir, The Diving Bell and the Butterfly, letter by letter, by blinking in code. But even more astonishing than this feat, Morris finds, is the fact that Bauby’s memoir is not at all depressing. Desire — for Bauby, a lifelong love of travel — allows the patient to reclaim his identity and vitality even as doctors pronounce him a hopeless case. Morris writes:

The real facts of Bauby’s life, as distinct from a mere official diagnosis of locked-in syndrome and a prognosis of imminent death, have far more to do with feeling than with the natural history of disease.

Similarly, Audre Lorde’s memoir The Cancer Journals is not about breast cancer but rather about how Lorde, as a black, lesbian, activist poet, experienced that disease. And A Whole New Life, which Reynolds Price wrote after becoming wheelchair-bound from a spinal tumor, is less concerned with disability than with personal reinvention. Morris sees this as fueled by eros:

Reason is not the power most likely to produce a new self, unless perhaps you are a philosopher. Desire, however, provides the thrust toward change necessary for almost anyone; for Price, self-transformation and recovery both included an erotic push.

Morris portrays the power of medical eros most clearly through these examples from the growing canon of literary illness narratives. Indeed, Eros and Illness eloquently illustrates how much medical humanities, narrative medicine, and similar new disciplines can contribute to more effective and compassionate care by reminding clinicians that illness is more than a series of data points.

Nowhere does Morris demonstrate this more compellingly, however, than with his own story as a caregiver. In fact, while the reader may sympathize with his wish not to reveal too much about his late wife, it’s in these personal passages that Morris (welcomingly) sheds the academic tone that pervades his book. One wishes for more of Ruth and less of “the shifting interplay among the multiple levels of mind/body relations that underlie and participate in the human experience of pain.”

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After reading Eros and Illness, I thought again about the hallway conversation I had overheard. No doubt the pediatrician would have addressed the boy’s plea not to visit his father if he suspected child abuse. That concern would fall squarely in the category of medical logos. Morris would argue, however, that even if he weren’t at risk of abuse in the father’s home, the boy’s desire not to go there required medical attention. I can anticipate counterarguments from my medical colleagues — indeed, I’ve made them myself: But there’s only so much time in a day. You have to triage. You have to maintain appropriate boundaries. All true, and yet this, too, is true: when I do cross from logos to eros, when I talk with my patients about concerns not strictly medical, I feel most like a doctor.

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Suzanne Koven is a primary care physician and writer in residence in the Division of General Internal Medicine at Massachusetts General Hospital in Boston. She writes regularly for The Boston Globe and other publications, and contributes the interview column “The Big Idea” at The Rumpus. Her website is www.suzannekoven.com.