A Most Unexpected Path Laid by a Most Unexpected Disease

Dr. Ross Slotten chose family medicine to serve patients from cradle to grave. But, as he was entering practice, the AIDS virus was entering the community where his practice was situated, and he found himself serving patients much closer to the grave than the cradle. 

In June 1981, a few weeks before I began my internship in family practice [at Saint Joseph Hospital in Chicago], the Center for Disease Control in Atlanta had published the first report of a strange lethal infection among a cohort of gay men in Los Angeles. I had no clue then that the disease would soon kill friends, former lovers, colleagues, and patients; devastate tens of millions of people and their families worldwide; and consume my entire professional life and more than half my chronological one. (p.14)

From both the circumstance of time and place he found himself in, and the sense of necessity and compassion that claimed him, Slotten’s professional trajectory unexpectedly shifted away from traditional family medicine towards specializing in AIDS. His interest in AIDS, however, extended to personal considerations, because as a gay man, he was part of the population at risk, and harbored the same anxieties and fears he saw in his patients and throughout his social circles. His patients were principally gay men because of his geographic location in an established gay community and the resulting referral patterns. The book chronicles both his experiences as a physician taking care of gay men with AIDS, and his experiences as a gay man at risk for AIDS. For Slotten, these experiences were not independent of one another, which makes for rich insights on the complexities of both. 

Slotten spent a lot of time at Saint Joseph Hospital because his patients required intense medical support and specialized services. He tells how he and his practice partner pushed for establishing a specialized AIDS unit in the hospital. They bumped up against usual bureaucratic obstacles, plus a few more concerning issues specific to AIDS patients, but they ultimately prevailed. Slotten “was to spend the next fifteen years there, often heartbroken, occasionally inspired.” (p. 109) In contrast to his commitment, he recounts how some specialists he called for help with particular patients refused when told they had AIDS. Those occurrences stuck with him: “I couldn’t forgive those other physicians for abandoning me and my patients in the hours of our greatest need.” (p. 108)

With whatever little time he had left for volunteer and advocacy work, Slotten stayed local. He talks about the volunteer-run health clinics where he worked (e.g., the famed Howard Brown Clinic), and the housing facility he helped set up for homeless people with AIDS. He left protesting at the Food and Drug Administration, the National Institutes of Health, and the annual International AIDS Conference to others while he focused on his patients, his studies, his volunteer work, and his own safety.

The 2020s are approaching when Slotten writes about the preceding three-and-a-half decades. As he finishes the book he is still caring for people with HIV, but the horrible complications of AIDS are now infrequent since the availability of effective medications. His practice had been reliably stable and predictable for some time, a circumstance he could only dream of when he first started. That dream ended abruptly just as the book was released on July 15, 2020: Covid was surging.

Moments of Horror, Relief, Calm, and Then…

Slotten’s perspectives correspond with the trajectory of AIDS over the thirty-five years his memoir spans. Particular periods are discernable, beginning when gay men were presenting with illnesses associated with profound immunodeficiency of unknown cause. Another is the time of peak AIDS death and destruction represented by the moment in 1992 when Slotten hears from the Chicago Board of Health, “that no one had signed more death certificates in Chicago than I had.” (p. 122) The next moment arrives at the turning point when highly active antiretroviral treatment (HAART) became available, transforming HIV/AIDS for him “from a universally fatal disease…into a chronic one like diabetes…it was almost beyond belief.” (p. 186) Then the prolonged period of relative calm when AIDS became controllable—even preventable—with Slotten noting during a moment in 2016 that, “It had been almost a decade since I’d cared for someone with advanced HIV infection, and I hadn’t lost a patient to AIDS since 2004.” (p. 202)

The AIDS epidemic is known for and measured by the number of deaths that occurred. Slotten wants us to remember the misery the disease causes.

For those who didn’t experience that terrible time, or who’ve forgotten how terrible it was, let my chapters serve as a warning to the complacent and the ignorant: untreated HIV is as ruthless as any terrorist and as destructive as a nuclear device. (p. 3)

He drives this point home when he recounts the stories of individual patients tortured by Pneumocystis carinii pneumonia, Kaposi’s sarcoma, cytomegalovirus retinitis, herpes simplex infections, cryptosporidium dysentery, AIDS wasting syndrome, AIDS dementia complex, and progressive multifocal leukoencephalopathy among other medical horrors, and who often suffer many at the same time. And, all the while, he had little to offer but his wits and his compassion. 

Both attributes would be called upon again in 2020 as Covid struck. Though those with Covid did not produce nearly the fatality rate of AIDS, not nearly the severe comorbidities of AIDS, not nearly the stigma and prejudice as AIDS, and not any of the governmental insouciance seen with AIDS, it still caused a lot of death, suffering, grief, and misinformation at a time when only supportive care was available. Like AIDS, though, the Covid pandemic was transformed into a manageable syndrome with the availability of an effective vaccine, new antiviral agents, and better clinical management regimens.

Complacency remains a threat to the reemergence of any infectious disease. Indeed, AIDS is reportedly rising in poor and developing countries in 2026 as funding for AIDS treatment and prevention programs has been withdrawn from donor countries, mostly that from the United States. Lessons from Slotten’s book may thus be called upon again.

Notes

Book citation:
Slotten, Ross A. Plague Years: A Doctor’s Journey through the AIDS Crisis. University of Chicago Press, 2020. 224 pages

Plague Years is a good companion to the documentary film, 5B, which reports on how San Francisco General Hospital coped during the early years of the AIDS epidemic, and Rebecca Makkai’s novel, The Great Believers which features the stories of a group of gay men in Chicago also during the early years of the AIDS epidemic.

Dr. Slotten was a guest on an episode of The Clinic & The Person podcast to discuss his experiences during AIDS epidemic as he reported them in his book, and how well they match up with what we see in 5B and read in The Great Believers.

Web image by Medhum.org

The time has come when the existence of a private pestilence in the sphere of a single physician should be looked upon, not as a misfortune, but a crime; and in the knowledge of such occurrences the duties of the practitioner to his profession should give way to his paramount obligations to society.

— Oliver Wendell Holmes, “The Contagiousness of Puerperal Fever”

It would have been cold on February 13, 1843, when the Boston Society for Medical Improvement convened. But anyone who heard Oliver Wendell Holmes’s fiery speech about puerperal fever would have forgotten about the chill outside immediately.

Holmes stood just 5’ 3”. And he was young, only 34 years old. But he was hot with moral authority. He was so sure that puerperal fever was contagious that he accused his skeptical colleagues of murder. He knew that in order to make them listen, he had to do more than lay out the facts. He needed a persuasive story.

As I’ll show presently, it was precisely this approach that allowed Holmes to win Nathaniel Hawthorne’s trust as personal physician to the great author near the end of his life. No mean feat, since Hawthorne was terrified by medical science.

The Crowd Puller

In those days, you had to speak well publicly to make a name for yourself. Oratory was required in school. In New England, the rhetorical standard was set in the pulpit, and public discourse followed. So it wasn’t an insult if someone said your speaking or writing felt sermon-like. Good sermons could awaken, convict, inspire, and transform even the most uneducated souls. The best professors and the best doctors fit the ministerial mold.

In New England, good speakers were a dime a dozen. But Holmes stood alone.

One of Holmes’s students recalled how he could hold a crowd:

He always makes people attentive, and I have been told that there is no professor whom the students so much like to listen to. In one of his books he says that every one of us is three persons, and I think that if the statement is true in regard to ordinary men and women, Doctor Holmes himself is at least half a dozen persons. He lectures so well on anatomy that his students never suspect him to be a poet, and he writes verses so well that most people do not suspect him of being an authority among scientific men.

This was also a time when science was retreating from the public sphere. Hawthorne was writing short stories about the terrors of the lab, where Rappaccinis and Chillingworths played God. As Michel Foucault said, it was a time when some doctors took the patient into account “only to place him in parentheses.”

Holmes was a scientist, but he hated how science made some of his peers “think only in single file.” And so he tried to wake his colleagues up on that cold day in Boston with facts, but also with panache and metaphor.

The Case for Contagion

Attention spans were different in 1843. The full text of Holmes’s speech, which he later published in essay form, was over 12,000 words. It would have taken him at least an hour to deliver it. He had to review many cases in depth, not just spin fetching tales.

But that’s why everyone in the Boston Society had gathered that day. They wanted to get better as doctors, for medicine itself to improve. So they listened.

Holmes points out that William Dewees’s A Treatise on the Diseases of Females, published in Philadelphia in 1833, explicitly denies that puerperal fever is contagious and that the Philadelphia Practice of Midwifery (1838) omits mention of the disease entirely.

Unthinkable now, but it was commonplace for a doctor or midwife to deliver one baby and then move to the other without washing their hands. Holmes’s words for such a physician? A “death-carrying attendant.”

He also opens with a logical list, a kind of syllogism, something he’d have learned from his humanities education. If all these things are true, then there’s no room left for opposing views.

1. Not all forms of puerperal fever may be equally contagious. But evidence shows the disease appearing again and again among patients of a single practitioner, even when no epidemic is present. That pattern demands explanation.
2. Whether infection travels through the air a physician carries into the sick-chamber or passes directly from his unwashed hands, the practical result is the same. We need not settle the question to act on it.
3. Contagion does not guarantee infection. Even the smallpox vaccine, fresh and carefully administered, sometimes fails. Same for scarlet fever. But no one doubts those diseases are contagious.
4. Seasonal and regional influences may trigger or worsen the disease. But smallpox follows the same patterns of rise and fall, and no one doubts it spreads by contagion. Why should puerperal fever be different?
5. If physicians can be shown to carry death instead of health, no excuse will absolve them. “[W]henever and wherever they can be shown to carry disease and death instead of health and safety, the common instincts of humanity will silence every attempt to explain away their responsibility.”

It made Holmes angry that colleagues could explain the deaths of new mothers as Providence, using God’s will as an excuse for their own failures to stop preventable deaths. 

We do not deny that the God of battles decides the fate of nations; but we […] are particular that our soldiers should not only say their prayers, but also keep their powder dry. We do not deny the agency of Providence in the disaster at Norwalk, but we turn off the engineer and charge the Company five thousand dollars apiece for every life that is sacrificed. Why a grand jury should not bring in a bill against a physician who switches off a score of women one after the other along his private track, when he knows that there is a black gulf at the end of it, down which they are to plunge, while the great highway is clear, is more than I can answer.

I’ll not reprise Holmes’s full review of cases (he painstakingly covers more than half a dozen). You can read the full text that he reprinted in Medical Essays here.

What I want to emphasize is how storytelling was much more than a way to “sell” science for Holmes. He knew that story piqued an emotional understanding of science, which was how doctors could be persuaded to act, and also how public trust could be earned and held.

Here’s his passionate conclusion in full:

It is as a lesson rather than as a reproach that I call up the memory of these irreparable errors and wrongs. No tongue can tell the heart-breaking calamity they have caused; they have closed the eyes just opened upon a new world of love and happiness; they have bowed the strength of manhood into the dust; they have cast the helplessness of infancy into the stranger’s arms, or bequeathed it, with less cruelty, the death of its dying parent. There is no tone deep enough for regret, and no voice loud enough for warning. The woman about to become a mother, or with her new-born infant upon her bosom, should be the object of trembling care and sympathy wherever she bears her tender burden or stretches her aching limbs. The very outcast of the streets has pity upon her sister in degradation when the seal of promised maternity is impressed upon her. The remorseless vengeance of the law, brought down upon its victim by a machinery as sure as destiny, is arrested in its fall at a word which reveals her transient claim for mercy. The solemn prayer of the liturgy singles out her sorrows from the multiplied trials of life, to plead for her in the hour of peril. God forbid that any member of the profession to which she trusts her life, doubly precious at that eventful period, should hazard it negligently, unadvisedly, or selfishly!

I read recently that we respond much more powerfully to troubled characters in fiction than we do to stock types who move from one adrenaline-spiked obstacle to the next. That’s because our deepest emotional responses are driven by three chemicals (dopamine, cortisol, and oxytocin). These brain responses are strongest when we truly care about someone else.

Holmes was trying to do something similar by creating a moral dilemma within the physicians he addressed. The doctor who cared nothing about exposing his patients to risk had no soul. But the doctor who could imagine a family’s grief and wrestle with his own culpability was more complex, more colorful, more worthy of trust.

If you’d been listening to Holmes on that February day, you know which doctor you’d have wanted to be.

Converting the Chief Skeptic

Despite his charms, it took time for Holmes to push his reforms. People thought he looked too young. One woman ordered him out of her house when he accompanied a senior physician during his medical training. “Take him away!” she cried. “This is no place for boys.”

Holmes’s colleagues respected his medical skill, but thought him “impaired” for writing poetry. And not all readers of The Atlantic loved him. To some he was a “tiresome little man.”

As one biographer explains, Holmes “disarmed criticism…by courageously persisting in the same method which had originally produced it, namely, by the most fearless intimacy with his audience, never keeping back any jest or any expression of confidence.” In a word, he was not afraid to make himself vulnerable in his writing. 

Holmes and Hawthorne shared pages in The Atlantic Monthly and also knew each other through the Saturday Club, a gathering of literary celebrities that included Ralph Waldo Emerson, Henry Wadsworth Longfellow, and Harriet Beecher Stowe hosted by the publisher James T. Fields. Hawthorne was quiet and shy, brooding around the edges, but Holmes loved to regale the group. As Annie Fields recalled, “with Dr. Holmes sunshine and gayety came into the room.”

The two writers developed a close intellectual relationship, commenting on each other’s manuscripts and commiserating with one another over the dangers of pseudoscience and careless experimentation. So it was no surprise that when he grew ill in 1864, Holmes was the only doctor that Hawthorne would see. Hawthorne had watched a friend die of pneumonia while a quack prescribed a variety of ineffective drugs, poultices, even cupping and blistering, to no avail.

As the two men walked the Boston streets, Holmes conducted a “talking exam,” listening while Hawthorne reported his symptoms of indigestion and fatigue. Holmes recognized that Hawthorne suffered from a profound sense of despondency which signaled imminent death, that there was no cure but compassion. This was an intimate moment—as vulnerable as the introverted Hawthorne had ever allowed himself to be with anyone—and it illustrates Holmes’s ability to reassure even this great skeptic of his good intentions. 

Hawthorne’s simultaneous fear of alternative medicine and medical science left him nowhere to turn as his own death approached. On the one hand were the mesmerists who sought to control the individual through pseudoscientific means. On the other were the Rappaccinis whose misappropriation of science was equally hostile to the privacy of the soul.

Only Holmes could rescue Hawthorne from those two nightmares. He did it as a man of science, as an indefatigable optimist, as a caring friend, and, yes, as a storyteller who knew that passion is one form of understanding.

Web image of A young Oliver Wendell Holmes from PBS.