In the early days of the AIDS epidemic in the United States in the early 1980’s three groups were most affected: male homosexuals, IV drug users, and hemophiliacs. One family had five sons, all with hemophilia, all of whom developed HIV/AIDS. The oldest son was speaking about his illness at his church and was asked, “Do you feel you are being tested?” The prejudice reflected in this question is an old one. People suffer because they deserve to. In the Biblical story in the Book of Job, Job’s friends assume that he has done something bad for which he was being punished. Many people might be angered or embarrassed by such a pointed (and ignorant) question. This boy answered with a calm equanimity: “Perhaps the congregation was being tested.”
All five of those boys subsequently died, as did most hemophiliacs of that generation. One who survived was a medical school classmates of mine, who has now lived some three score years with hemophilia. He recognized early on, what public health officials should have recognized, that there was something transmitted in the blood supply. He asked friends whom he trusted, my wife and I among them, to donate blood that would be put aside for his transfusions. None of our local hospitals would cooperate with this scheme, so it was necessary to drive to a neighboring city every few weeks to donate blood.
These two stories taken together say something important about “community”. The first assumptions of the first community were prejudicial, a pre-judgment of those with the illness. The second community, my classmate’s circle of friends, was able to respond with more practical support, specifically blood donations, but also with concerned presence. While the HIV/AIDS epidemic has been devastating on communities, communities have an important role to play in battling the disease and its multiple impacts.
A third patient helps us focus the AIDS story in the United States. That patient, Ryan White, was diagnosed with hemophilia at 3 days of age, and was diagnosed with HIV at age 13 (in 1984). He died in 1990 at age 19 but not before inspiring the nation with his courageous fight to lead a normal life, attend school, and overcome prejudice. In 1990 Congress passed an act baring his name that addresses the unmet health needs of persons living with HIV by funding primary health care and support services. Just last week the US Centers for Disease Control (CDC) recommended routine HIV testing for everyone aged 13-64. It is estimated that 250,000 people in the United States are HIV positive and don’t know it.
At the simplest level of understanding, we now know that Acquired Immune Deficiency Syndrome is caused by a virus, the Human Immunodeficiency Virus. The current sate of medical treatment, biologically understood, provides drugs , anti-retrovirals, that minimize the impact of the HIV virus on the immune system. There is no cure, only prevention and management. The hunt for a vaccine is on, but it started late. AIDS is a complex illness, and biology is only part of the equation. Biological, psychological, social, and spiritual factors, as well as political and economic factors, and moral considerations also come into play. A new branch of medical science called “complexity science” focuses on the interrelationship of the complex factors in an illness such as AIDS. Looking at the role communities can play invites us to look at these complexities. In the remainder of my remarks I proposed to look at some of the threads of this fabric. How do we understand the role communities play in course of a biological illness?
An interesting body of research summarized in a fascinating book called “Bowling Alone”. Robert Putnam noticed that from the period of the 1960’s to the 1990’s participation in league bowling declined in the United States along with other civic activities such as club participation, church attendance, charitable giving, etc. Recently the newspaper, USA Today, reported a survey in which only 25% of Americans said they had close friends in whom they could confide. During the same period watching spectator sports increased. Putnam postulates and then statistically analyzes something he calls “social capital,” the extent to which communities are involved in the social welfare of their members. Complex statistical analyses show robust correlations between states with high social capital and such factors as health and longevity, child welfare, success in education, etc. In the United States, state-by-state comparisons have been carried out, and these have been replicated in developed countries, Great Britain, Germany, Japan, Australia. As a research tool, social capital hypothesis could be tested in the states of Africa. One measure might be availability of anti-retroviral drugs, data on which were reported in the New England Journal of Medicine last week. Across Africa, the numbers of people infected are large, the percentages of people on anti-retroviral low, hovering around 25%, but significantly this number is higher than it is in some regions of the world, notably Asia, where there is still much denial about the presence of the virus. In crisis there is opportunity. These needs/opportunities may be the focus of some of the working groups.
This is where the PNI story, the wellness story, becomes part of the complexity at many levels. I think I can best focus this complexity by looking at survivorship. Who survives a complex trauma or illness and why? How? Before I share some of my conclusions, I should share my personal interest in the survivorship phenomenon. Eight years ago, in 1998, I was diagnosed with a complex illness, cancer, specifically a particularly virulent form of blood cancer known as multiple myeloma. In fact, today is the eighth anniversary of the completion of my bone marrow transplant. Most people diagnosed with multiple myeloma in the 20th century are now dead. The few of us that remain are medical curiosities. As I have reflected on my own experience, traveling with a cancer passport, a dual citizen in the land of the sick and the land of the well, a patient as well as a doctor, I have come to realize that the story of my survival is not so much my story as it is the story of my community and communities. It is a story of the involvement of my friends and neighbors, my family, the little village in which I grew up, colleagues at my school, and staff at the medical center where I got my treatment, which was my alma mater, where I was surrounded by many old friends. Constant vigil and attention and concern and visits and meals and cards and calls and attention to medical details and prayers of friends and friends of friends. I was even told at a Kellogg Seminar in Salzburg, Austria, which by the way Mary helped organize, that there were South Africans praying for me, including the Episcopal bishop.
The Jewish religion has a ritual of mitzvah, acts of compassion of the community such as visiting the sick. Visting the sick distracts them from their suffering, offers hope and is believed to take away 1/60th of their illness. Sixty visits could work miracles.
As I looked at survivorship, what psychologists are calling “resiliency” in a number of contexts I came to appreciate the importance of those complex psycho-neuro-immunological interactions we are now calling PNI. I came to appreciate Putnam’s rather bold assertions that
Social capital operates though psychological and biological processes to improve individuals’ lives
People whose lives are rich in social capital cope better with traumas and fight illness more effectively.
We can understand this at a biochemical level as the balance of forces within the body which overcome the negative impact of a varied of stresses from acute panic to environmental toxins to specific infections such as HIV. Rather than belabor the medical details, I will illustrate with some specific examples.
A rather obvious example Putnam uses is of a man who suffered renal failure as an adult and needed a kidney transplant. The donor was one of the members of his teenage bowling team.
A more complex example is drawn from the communities hit by the tsunami of 2004. Last December on the first anniversary of the tsunami, my wife and I were invited to visit some of the tsunami-affected communities of India’s Tamil Nadu. We were hosted by psychiatric social workers from the psychiatric institute in Bangalore (NIMHANS), which had organized community response training programs focusing on the psychosocial care of these communities. Medically they were dealing with acute grief and acute stress reactions to keep them from become Post Traumatic Stress Disorders. The contrast that demonstrated to us the effectiveness of the community approach was a refugee camp in Chennai, which was not organized and did not accept the NIMHANS teams, which were offered. There, one woman complained, “We did not just loose our loved ones, we lost our livelihood. There is nothing to do here. The children don’t even go to school.”
Illness as Metaphor
In face a humanitarian crisis, such as an epidemic, a natural disaster, or a man-made disaster, it is important to get the moral tone right. It is important to make the right response. It is important to ask the right questions in order to get to the right conclusions. This is perhaps the most difficult level of complexity that confronts us.
I would like to turn to a writer and social critic, who I think may be able to help us focus our energies in this regard. Thirty years ago, Susan Sontag explored the cultural response to illness in her essay, Illness as Metaphor. She noted that two illnesses in particular, tuberculosis and cancer, had acquired metaphoric overlays that obscured a reasonable response to the illnesses and the people who suffered from them. Tuberculosis had acquired romantic overtone; it affected the esthete; it was “consumptive”; its fevers connoted “inner burnings”, even desire. Cancer was of course linked with death and an undercurrent that people often attribute to those with cancer, again that it consumes, devours, and that in some way that people bring about their own cancer, perhaps by suppressing or bottling up negative emotions. Some people suggest that a positive attitude or a sunny disposition can overcome almost anything. And if so, is the reverse also true, that failure to overcome is because of an improper attitude? Should people be expected to overcome illness, the way Norman Cousins laughed his way to health. (His book, Anatomy of an Illness, deals with ankylosing spondylitis, and he now heads the PNI institute at UCLA)
Sontag died two years ago, almost thirty years after receiving her own cancer diagnosis.
In a later work, she addresses AIDS. It is called “AIDS and Its Methaphors”. By metaphor Sontag means, “giving something a name that belongs to something else.” (p 93) Of cancer, Sontag says, “Twelve years ago, when I became a cancer patient, what particularly enraged me—and distracted me from my own terror and despair at my doctors’ gloomy prognosis—was seeing how much the very reputation of this illness added to the suffering of those who have it.” (p 100) And of course, the same can be said of AIDS. Medicine is often seen in military metaphors, great aggressive campaigns against the enemy, disease. Victory or defeat, our bodies the battlefield. Though we probably couldn’t think without analogies, my objection to these simplistic metaphors is that they obscure the complexities of illnesses that really deserve our attention.
To appreciate this point in the context of community, I would like to revisit the Salzburg Seminar I mentioned earlier. One of the assertions put forth at that conference was the idea at “All Illness is the absence of Love.” Could that be true? What might it mean? In a simple sense this claim could be a metaphor for community. It could be a theological metaphor. Congratulations to the well. Damnation for the ill, a kind of judgment for those who have not lived well. It could be the sort of metaphor Sontag sees as oppressive, the sort of analogy we should avoid.
DH Lawrence, known for frankly scandalous portrayals of sexuality in Victorian England, offers a similar formulation: “One is ill because one doesn’t live properly—can’t. It’s the failure to live that makes one ill . . .” (Women in Love, 125) To my mind, his “can’t” redeems the metaphor. One’s choices are diminished by one’s circumstances, whether that is the poverty of England’s industrial midlands or the neurosis of growing up in an oppressive family. Lawrence himself suffered from TB and was ambivalent about it because he lived the metaphors, experiencing TB both as a personal shame and in some way, a heightened awareness of life. As far as I know, Lawrence never explicitly saw TB as a metaphor for industrialization. But I think that there are undercurrents of economic metaphors surrounding the AIDS epidemic, which touch on urbanization, colonialism and globalization. Certainly the choices of the impoverished are limited, their autonomy diminished.
It may help us to focus the action agenda for AIDS to acknowledge its complexity and demystify its stigma. Analogies may help us. In many ways the AIDS epidemic is like the plague of the European Middle Ages. I am speaking metaphorically, of course, Old Plague as analogy of New Plague. Its very magnitude initially overwhelmed creative and reasoned approaches to dealing with it and it cast a shadow of fear and devastation. Boccaccio describes in his Decameron the situation when the plague hit Florence in the 1300s. People died in droves, and those who were well enough fled the city. The Decameron is a collection of the stories they told at someone’s country estate to amuse themselves. The situation he describes for the sufferers was one of “lack of due attendance to the sick”. They were abandoned. No one attended to them. No one fed them or provided water. Most died in a matter of days, the natural course of dehydration and starvation even without infection. We could say that their community failed them; they lacked sufficient social capital, even that they lacked love. Fear overcame love.
By contrast Daniel DeFoe describes conditions of the Plague Year in London (1664-65). Still before the germ theory was well understood, doctors established a “plague house” where people were cared for humanely, with proper attention to their needs, adequate nutrition, and reasonable cleanliness. While tens of thousands died in London that year, no one died in the plague house.
We may pride ourselves that our current state of knowledge is so far advanced scientifically that we now have tools to battle our current plague, but biological responses, the moral imperative of the international community, are by themselves not enough. the metaphors belies the reality. The social response in the twentieth century has been much like that in the thirteenth and seventeenth—denial and running away. And therein lies the challenge—and the opportunity.