Do It and Die

Evening, 10 May 1987. Thousands of American fingers flick their television remotes to Old Time Gospel Hour. The Reverend Jerry Falwell steps forward to address an adoring audience, worn Bibles in hand, blessed suppers of body and blood recently consumed. His message is a comforting one for this gathering. ‘They are scared to walk near one of their own kind right now. And what we have been unable to do with our preaching, a God who hates sin has stopped dead in its tracks by saying, “Do it and die. Do it and die.” ’ Falwell wrote later that year: ‘Aids is a lethal judgment of God on America for endorsing this vulgar, perverted and reprobate lifestyle.’ His words emerged from the sun-beat soul of the American South and did not, as you might imagine, solely reflect his desire to fill the coffers of televangelism. Two years earlier, the residents of an unprepossessing Southern town were asked their views about Aids. Half of those polled believed that the law should prevent people with HIV from working in close contact with others. Forty per cent thought that children with Aids should be excluded from schools. Intolerance is institutionalised; it is the ordinary language of Christian fundamentalists, and fundamentalists are the human infrastructure of the southern United States. Or so it seems at first blush.

Tennessee is a small state with an ignominious past. In 1860, one quarter of its population were slaves and the slave-trade was its most successful business. This uneasy history, combined with an ardent religious fervour and tough rural living, still defines life east of the Mississippi. Even today, in the tourist brochures of Johnson City (the location for Verghese’s story), the percentage of the population who are non-white is listed to reassure prospective visitors (7.2 per cent, for the record). Tourism trades happily on this humiliating past. Henning, the birthplace of Alex Haley; the Lorraine Motel, Memphis, where Martin Luther King was assassinated on 3 April 1968; Dayton, where John Scopes was convicted in 1925 for teaching evolution to his biology class. Tennessee still stumbles under the burden of being a Civil War battleground (the East was loyal to the Union while the Midwest supported the Confederacy) and the state government works hard to overcome this legacy of poverty (the Jack Daniel’s distillery helps). In Tennessee, throughout the Eighties, homosexuality was a felony. Into this inhospitable setting came Dr Abraham Verghese.

Abraham Verghese’s story has to do with migration: his own in search of a peaceful settlement and that of his patients with Aids. Verghese’s journey had taken him to Johnson City in East Tennessee, a small town of about 50,000 people, which nestles in the forest highlands of the Chickasaw, Choctaw and Cherokee. Johnson City boasts two distinctions: according to a 1993 survey, it is the 34th most desirable place to live in the US, and it exports 165,000 Bibles a year. Verghese trained as a specialist in infectious diseases and expected the usual run of pneumonias, septicaemias and infectious diarrhoeas. Yet by 1989, he was caring for 81 people with HIV infection, 68 of whom were gay men, injecting drug-users or both – an astonishingly high number for a rural enclave. He discovered the solution to this epidemiological conundrum in the journeys made by his fellow migrants. When he traced a map of the US from his four-year-old son’s wall chart and marked the cities from where his patients had come, a pattern began to emerge. Large, urban centres on the country’s edge – New York City, San Francisco, Los Angeles, Miami – were the common points of departure. He described what he saw as the ‘return of the native’ and concluded that this ‘was not an exodus but a conclusion of a journey that began years ago and that has returned the patient to his birthplace’.

As sons discovered a sophisticated urban gay culture, the families of these adolescent men were soon left behind. Strangely, news dried up. Telephone calls were not answered; letters were returned to sender. Often years passed. Finally, there would be a telephone call, disclosing a history of hospital visits and asphyxiating human isolation, which had reduced the callers to cadaverous mannequins. Verghese is especially powerful in his physical descriptions of their return home. Here is Luther Hines:

His lips were horribly crusted and fissured. There were angry sores at the corners of his mouth. From where I stood I could see the Candida growing in his mouth like cheesy curd that threatened to spill out. His face was covered with a swathe of fluid-filled vesicles ... one of them hung down from the point of his chin and made him look like an old shrew. His shoulders resembled wire coathangers that propped up his shirt. His nails were long and pale and seemed to hang down like a parrot’s beak.

Almost nonchalantly Verghese draws us towards devastating suffering. Denial is common: initial self-deception; then rebellion against those offering treatment; and an unashamed escalation in self-endangering behaviour. But Verghese’s bleak descriptions are tinged with humour. The pecker-pickling Texas truckers who accept free relief from the gay men of Johnson City, and who become enraged if a single word is uttered to acknowledge the act. The mad scramble to pull socks onto Gordon, who was otherwise dressed to the nines – in his funeral casket. And the sewer rat that crept out of the commode to chew off the testicles of some day-dreaming old man. Any lingering Falwellian prejudice evaporates in the living rooms of the families who have taken in their sick sons. The generosity they offer one another overrides any flip religious determinism, although religious imagery – such as the occasional vision of Jesus – remains central to many of their lives. The mind of the South is no Gorgon at all.

The rhythm of Verghese’s narrative is maintained by a continuous flow of dramatic new scenarios: the wife and her sister, both infected by the husband; the man infected through blood transfusion, who subsequently passes the virus on to his wife; the haemophiliac infected by blood products; and, of course, the many gay men. Verghese has taken his privileged role as doctor-listener, cast a creative spell over his memory, and produced a series of riveting portraits. It is no mean feat. Physicians are trained from their first day on the wards to expunge any humanising tendency from their descriptions of patients. The presentation of a case-history is a highly structured performance that allows no room for irony or metaphor. As Verghese says, ‘I had read through the chart and had understood the medical elements of the case. But the story of this couple was not there.’ Somehow he has rediscovered his ability to touch the lives of the people he cared for.

What he doesn’t always do is develop ideas from these closely observed lives, ideas to inform some of the most difficult ethical judgments in medicine today. What, for example, is a good death? He openly acknowledges the suffering that his patients endure at the end of their lives. But he fails to explore the range of choices that we can exercise to avoid this suffering. The unstated issue of euthanasia or ‘physician-assisted suicide’ looms over this discussion. The logical extension of comfort care, in which pain relief alone is given to the patient, is voluntary euthanasia. Verghese does raise the subject of how to conduct this ‘final business’, but is uncertain about the moral force of arguments in its favour. It’s strange that he should be doubtful given his description of the agonising conflict between the opinions of Ed’s relatives, who wish to preserve his life at all costs, and those of Ed’s partner, Bobby, who knows that Ed has asked for no such heroic intervention. The relatives won this argument and an unnecessarily shameful death ensued. Verghese sits on the fence, too clinical and too cool.

The importance of migration in rural Tennessee is only part of a wider debate about the significance of migration for the overall spread of HIV. This discussion has caused a deep and painful schism in the HIV-research community. The conservative line was fully expressed in 1993 in The Social Impact of Aids in the US, a report published by the National Research Council, paid for by the government and coordinated by the Centres for Disease Control (CDC), a government-funded agency. The report concludes that

many geographical areas and strata of the population are virtually untouched by the epidemic and probably never will be; certain confined areas and populations have been devastated and are likely to continue to be ... The Aids epidemic may be more like the influenza of 1918 than the bubonic plague of 1348: many of its most striking features will be absorbed in the flow of American life.

Complacency oozes from every word. Indeed, this official message runs contrary to many of the beliefs expressed more quietly and less publicly elsewhere by CDC. For example, in a recent review of the current trends in the HIV pandemic, Dr Harold Jaffe, Director of the Division of HIV/Aids at CDC, points to two critical warning indicators of the widening scope of the virus. First, women are now experiencing the fastest growth in new infections: four times higher than men. Heterosexual sex is the most rapidly increasing means of transmission. Second, rural areas of the South are far more likely to find women infected with HIV through heterosexual contact than women in the North-Eastern United States. Both these observations contradict the published orthodoxy. At the same time, gay men continue to be at substantial risk. In two recent studies from San Francisco, 11 per cent of gay men aged between 16 and 23 were HIV positive, a startlingly high proportion. Paradoxically, young gay men perceive unsafe sex to be safe among the young. As a result, mutual monogamy is less common and a wider range of sexual activity has probably induced the alarming resurgence of the epidemic among the younger gay community.

The issue of migration now becomes central. A quarter of the US population lives in urban centres, and a further half inhabits surrounding suburbs. The burn-out of inner city areas – spiralling poverty and inadequate housing in the South Bronx, for example, or in south-central Los Angeles – has forced many families to move to more suburban regions. And we can take the term ‘burn-out’ literally. In New York City alone during the early Seventies, 50 fire-fighting units were disbanded in cost-saving measures, with a quarter of firemen laid off as a consequence. The South Bronx became highly vulnerable and some critics have even seen these rationalisations as an attempt at ‘planned shrinkage’ to rid the city of perceived social obstacles to urban renewal. The mass migration of people from these overcrowded urban epicentres simply moves the virus into new territory. As Rodrick and Deborah Wallace, two public health researchers from New York, have noted, there will be ‘spread from larger, more socially dominant central cities to smaller ones along the transportation network ... and from central locations to suburbs’. This phenomenon is exactly what Verghese (and others) describe, except that the movement they have seen is over a longer distance into rural areas. The degree of spread depends on both the size of the urban epidemic and the amount of burn-out in that environment. The recent trends in HIV rates reported in San Francisco are a cause for genuine alarm. The view that heterosexuals will be protected by some invisible social and geographical barrier is a myth. Add to the dynamics of HIV diffusion the facts that 62 million Americans live in rural areas, that one-third of these have limited access to high-quality health care, and that the number of officially designated health-manpower shortage areas increased by 80 per cent from 1978 to 1992, and it is clear that the future for these areas under threat is dismal. But the government agencies still reject the evidence of this wider risk to communities outside urban regions.

The first five patients with Aids were diagnosed in 1981. By the end of 1993, over 360,000 cases of Aids had been reported in the US. In the US in 1994, one person was diagnosed with Aids every 9 minutes; one person was infected with HIV every 13 minutes; and one person died from Aids every 15 minutes. Worldwide, the total number of HIV infections has increased from 14 million to 17 million in the past year alone. These vast numbers have led some dissidents at the CDC to argue strongly, and inconsistently in view of their rather relaxed official position, that all physicians must be trained and prepared to care for patients with HIV infection. The comparative failure of drugs to treat the disease, a point powerfully made by Verghese, and the cul-de-sac that the vaccine programme is currently negotiating itself out of, have led physicians to emphasise the importance of primary care of those with HIV disease. The ‘brainless octopus’ of Aids research, as Aids activists have characterised it, is still thrashing its tentacles to no avail. The recent setbacks in Aids research epitomise the brittle arrogance that has veiled the medical community’s strategy against HIV: first, the failure of AZT to slow the progress of the disease when given early; second, the embarrassing reversal of the vaccine programme; third, the sudden diversion of research away from the virus and towards the immune system; and finally, the planned reduction, by one-fifth, of a clinical research programme that is now seen as largely redundant. Politicians have not been slow to exploit this medical anarchy. The US has one of the most backward Aids prevention programmes in the world. Congress is likely to deepen this crisis by cutting funds which were designated for providing sex education in schools. Jesse Helms, Republican senator for Tennessee’s neighbouring state of North Carolina (and now chairman of the Senate Foreign Relations Committee), has recently called these educational materials ‘disgusting’ and ‘obscene’ – an echo of ‘Do it and die.’ Television stations in America still refuse to broadcast condom advertisements, despite the fact that over half of all new HIV infections in the US are among gay men under 20.

Soundings is not merely about the stories of Ed and Bobby, Fred and Otis, Vickie and Clyde, Scotty, Petie, Jacko and Cameron Tolliver. Abraham Verghese has also written about his own troubled voyage. Verghese was born in Ethiopia and lived briefly in the poverty of Newark, New Jersey, in the early Seventies. He completed his medical degree in India in 1980 and moved to East Tennessee State University, where he practised as an intern and resident. He was newly married to Rajani, a ‘sloe-eyed’ advertising executive whom he had met in India. His ambitions were clear. He sought a career in the celebrity playground of academic medicine and chose infectious diseases as the easiest route to achieve his goal. He and Rajani moved to Boston, where the élite of US medicine fight among themselves for huge reputations and lucrative private practice. They endured a roach-infested apartment for a while but his ambitions waned in the face of slow and laborious laboratory research and he accepted the offer of a more secure job back in Tennessee.

He had seen patients with HIV infection in Boston and he expected to see a few cases in Johnson City. As news of Aids hit the American media during the mid-Eighties, Verghese began to gain a local reputation as an expert. His curiosity about the ‘Tennessee Queens’ of Johnson City, and the attention he received from local press and television, renewed his pride in medicine. The Bostonian hubris was returning. He accumulated a clinic full of patients with HIV infection, and gradually became obsessed with their stories, their families, the lives they had led and what these meant for his own sexuality. He felt that it was his duty to discover all he could about his patients’ lifestyles, at whatever cost to his own family. Visits to gay clubs followed. ‘Aids, Aids, Aids: the word seemed to inform my every action.’ He was repeatedly late for family engagements and he became intensely absorbed in the lives of Otis, Clyde, and the rest of his coterie. He would frequently return to the hospital after putting his son to bed to ruminate privately on his patients’ experiences. He became fascinated by the notion of anonymous sex and constructed a fanciful theory that it was women who prevented men from realising their need to have sex with unlimited numbers of willing partners. Ideas like these put him at a distance from his wife. He found that he could only share his frustrations with his patients.

When he is propositioned by a hospital secretary while his wife and son are away for the weekend, the difficulty of deciding whether to test his theory is almost unbearable. Only a recurring ‘infection’ dream seems to have saved him from infidelity. (The dream: in Brooks Brothers suits and ties, he and his two brothers are tested for the virus; while his two brothers are negative, an amused nurse tells Verghese that he is positive.) His fear of the virus results in anger and, later, remorse. He becomes impatient with the routine life of medicine: the ward rounds; the students’ deferential attitude to the residents who, in turn, are deferential to Verghese; the useless rituals of physical examination. Rajani, continually blamed for failing to understand Verghese’s new importance, suffers at his hands after he sustains a needle-stick injury at the hospital and deliberately leaves her ‘to face her fear in silence’. Both he and Rajani had to undergo HIV testing and adopt safer sex until it became clear that he was not infected. His attitude to his wife contrasts sharply with the empathy he shows his patients.

In the cultivation of a detached but vigorous humanism, Verghese often reminds one of William Carlos Williams, who drew on his own experience as an obstetrician and general practitioner in stories about his patients. Williams describes his own relation with patients in The Practice:

I lost myself in the very properties of their minds: for the moment at least I actually became them, whoever they should be, so that when I detached myself from them at the end of a half-hour of intense concentration over some illness which was affecting them, it was as though I were reawakening from a sleep. For the moment, I myself did not exist, nothing of my self affected me. As a consequence I came back to myself, as from any other sleep, rested.

But a clear distinction exists between the obsessions that consumed Verghese and the engaged reflection of Carlos Williams. In Verghese we see how a physician, outwardly so critical of the heroic status accorded to the modern technocrats of medicine, creates in himself an image akin to theirs. He admits that he ‘maintained no distance’ and that he now needs to ‘begin again from a wiser and more careful vantage’. Almost too late, he realises what has happened and does the only thing he knows how. He escapes – to Iowa – dragging his incredulous family with him. Verghese claims his decision is a compromise, a way of providing a ‘cooling-off period’. But this affectation is hardly convincing. Throughout, Verghese describes himself as an ‘alien’ or an ‘exile’ from his family and community, even his professional colleagues. Why should his move to Iowa be anything other than another phase of his own journey? Indeed, from Iowa he has since moved to El Paso, Texas.

There are disconcerting hints that Verghese, like so many of his colleagues before him, has fallen for the seductions of success. He describes patients without Aids as ‘somewhat predictable’. In three papers published in medical journals during the past few years, he celebrates the cult of the medical personality as embodied in ‘the unique medium of the medical eponym’. And in an article published in April 1993, several years after the ending of the story he tells in Soundings, Verghese takes up an argument that seems contrary to the spirit of primary care that he enthusiastically endorses in the book. He advocates the creation of a new medical specialty: ‘Aidsology’. In the US, only 30 per cent of physicians work in primary care, compared with 70 per cent in the UK; a new specialty is the last thing that American medicine needs, especially since only one in six US medical students now wants to pursue a career in general practice. Verghese is currently a professor of medicine at a prestigious academic centre; he is still travelling, in search of a homeland. He seems far away from the peaceful return that he so poignantly describes for the itinerants of Johnson City, Tennessee.