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from a painting by Jan Steen of a sick woman, in the Alte Pinakothek, Munich.
In seventeenth-century Holland, as anywhere and always, a casual word could
leave one reeling.BLAUEL/GNAMM-ARTOTHEK |
I remember how different my home seemed on the days when I was out sick from school. The natural habitat of seven noisy, demanding children was drastically changed between breakfast time and 3 p.m. Propped up on the couch, lazily staring at a book, I felt the house around me like a quiet, humming aquarium. My mother busied herself with enigmatic tasks and telephone calls. It was on one such morning that a bizarre thought occurred to me: my parents had lives of their own! By interrupting our schedules, enforcing indolence, and challenging our assumptions, illness can lead to such changes in perspective. Frequently, it raises our awareness of issues we haven't encountered previously, or considered adequately.
In 1986, for example, Dr. Jerome Groopman directed one of the busiest AIDS clinics in the country, and he was worried. Bad enough that there was so little he could tell his patients about their disease; he himself had just come down with an unusual form of pneumonia. At the time, Groopman was treating hundreds of young, immunosuppressed men and women who were dying of another rare form of pneumonia, caused by infection with pneumocystis carinii. "It was right around the time of the discovery of the virus, before we had a clear definition of HIV risk," recalls Groopman, now chief of experimental medicine at Beth Israel-Deaconess Medical Center and Recanati professor of medicine at Harvard Medical School. "I was transiently afraid that I might have gotten AIDS."
As perhaps few practicing doctors ever have, Groopman got a taste of what it's like to be a patient--the fear, the sense of vulnerability, and the whirl of thoughts rushing through one's head. There were few moments when he wasn't imagining what the behavior of his caregivers meant. Physicians and nurses seemed to breeze in and out of his room; a few words could leave him with nagging feelings of misunderstanding and dread.
"I had gone about my business, eating, drinking, swimming, all with a sense of well-being," he says. "All of a sudden, when I got sick, that evaporated."
As it turned out, Groopman was not suffering from AIDS, but from a bout with a microbe called mycoplasma. Getting over the infection took months, but the education in seeing how the practice of medicine looks from a patient's point of view may have been worth it.
"No one wants to be sick," he says, "but on some level, every doctor should be sick at some time, just to experience what it's like to be on the other side of the bedside--to feel that acute sensitivity to the most casual words and motions."
Even at the highest levels of government, illness has a sensitizing effect. Robert Blendon, professor of health policy and political analysis at the School of Public Health and an affiliate of the Kennedy School, says you can see its impact in the legislative habits of members of Congress.
"One good example is mental health," Blendon says. "It appears that many of the legislators who are interested in better mental-health care have a family member with a serious mental-health problem." Similarly, in the late 1980s, a number of congressmen pushed legislation to fund research into prostate cancer. Washington watchers like Blendon interpreted the movement as coming from the large number of politically powerful but aging men who were themselves suffering from prostate problems.
I've been writing about the disease, death, and health catastrophes of other people for 15 years, but until earlier this year I had forgotten about how illness could be a teacher. One cold morning in January, I found myself shivering next to the radiator in my doctor's office, wrapped in six layers of warm clothing, frightened and wondering what was wrong with me.
After the chest x-ray, I tried to read my doctor's face. What would be revealed when he spoke? Did I have pneumonia...
or cancer? When he extended his arm over the desk with a prescription for antibiotics, it was like a bus ticket out of despair.
Pneumonia is a nasty infection that gets deep into the pulmonary lining and inflames it. Fluid pools in the lungs' lower airways, where it becomes an incubator and reservoir for infectious agents. If not properly managed, the infection can spread into the bloodstream, where it may be lethal, particularly in older patients. (Pneumonia has been called "the old man's friend," because it so often put weak patients out of their misery.)
Recovery opened up all sorts of possibilities. I was eager to start running again, to start eating more sensibly, to focus on taking care of my body and enjoying the feeling of health. Having felt so abysmal-ly sick, and then being freed from it, I felt redeemed, like Ebenezer Scrooge--ready to laugh with delight at the wonder of the taste of snow, the smell of candles, the dream-like sight of a table with all one's friends gathered around.
As Groopman recounts in his 1997 book, The Measure of Our Days: New Beginnings at Life's End (Viking), some people gain great insight from their experience with disease, despite the fact that it may end in death. But if it were always true that adversity made us stronger, then none of us would die.
"Without question, there's some kind of change process that people go through in disease," Groopman says, "but there's no kind of universal epiphany that people go through. Not everyone becomes a more caring person, not everyone resolves to take better care of themselves, or tie up all the loose ends in his or her life. It's the role of doctors, family members, lovers, and friends to try to make sure that the change is for the good.
"In part, I think that patients need to be able to express themselves and talk about the fears and searching they're experiencing," he continues. "Your faith can be tested, or you may begin to think that you've wasted your life, or find that a dream may not be realized. So disease has a whole spectrum of meanings for people, but we need a tender, understanding hand to help put some form into this welter of feelings."
Anyone who has ever been sick has wanted to be cured. When we think of being cured of disease, we often assume that we will be returned to our original, pre-illness state, with all the signs, symptoms, scars, and sores of morbidity washed away. Perhaps we should think of curing more as the term applies to leather: a process of preparation and preservation, a finishing touch that removes some imperfections, creates others, and ideally renders us more durable and better suited to the demands of living. If ever there were a purpose for disease, perhaps it lies in reminding each of us of how delicious it is to be well.
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