One of the wonderful things about being a doctor is that you are privileged to witness amazing stories: gut-wrenching, heart-opening, soul-uplifting stories that chart the human journey, the epic process of challenge and growth in which every one of us is engaged. For nearly thirty years, most of them spent working at a major medical center in New York City, I witnessed a great many such stories, far more, in fact, than I can possibly remember. And still, there are more than enough that I will never forget, fierce and tender ones that carved out a permanent niche in the marrow of my bones, and these I feel compelled to share.
These are stories of my patients and their families—people I cared for and worked with every day, people I loved and learned from. These stories come from my years as a medical student, intern and resident in clinical training, and then as a hospital-based inner-city pediatrician and adolescent medicine specialist, and finally as a research physician in charge of a three-year research project entitled “Dying and the Inner Life,” investigating what people with terminal illness can tell us about the experience of feeling the end of life approaching. The stories span the arc of the human journey from the beginning to the very end.
When I completed four grueling years of medical school devoted to stuffing my head full of scientific knowledge and finally donned the white coat that identified me as a real doctor, I had no idea I was entering my pediatric internship in the middle of an epidemic, or that that epidemic would teach me as much about the power of love as it would about the strengths and weaknesses of the medical profession. It was 1976, and AIDS was slamming my beloved New York City with devastating force. Little was yet known about this new virus that attacked the human immune system so viciously, only that pitifully little could be done to help those unfortunate enough to be infected with it. And sadly, the ones who were proving to be most vulnerable to the virus tended to be those who lived in the inner city neighborhoods where life was hard enough already, burdened as it was with poor housing conditions, inadequate education, drug abuse, violence, broken family bonds, and lack of opportunity. These were the neighborhoods my hospital served and where the children I would care for were growing up.
We admitted a great number of children who were sick with AIDS to my hospital back in those days, and sadly we lost many of them. One two-year-old boy I remember in particular, for he touched me deeply. As was typical, he had acquired the virus from his infected mother when he was born, and despite our best efforts to help him, he was slowly slipping away from us. He lay quietly in his crib, hollow-eyed and emaciated, never smiling or even crying. He simply did not have the energy.
I was a still-wet-behind-the-ears, third-year medical student when I met Katherine, and she won me to her cause immediately. A slender, probably once attractive woman in her late thirties, Katherine lay confined to bed in Room 301A on the medical ward with the most disturbing disease I had ever seen. Her diagnosis was far-advanced scleroderma, a condition in which a person’s immune system becomes confused. Instead of producing antibodies that defend against outside invaders, it produces antibodies that attack the person’s own connective tissues, those strong and marvelously flexible tissues that give our skin its supple quality and that form the bulwark of our muscles, our blood vessels and all our internal organs. The attacking antibodies rob these connective tissues of their marvelous elasticity, making them grow stiff and hard and resistant to movement. Unfortunately, modern medicine has not yet learned how to stop this grim process. Once started, the disease can progress slowly or more rapidly, affecting its victim in merely a few isolated places, or spreading throughout the person’s entire body, as it was doing in Katherine’s case.
Katherine had begun to develop the early signs of scleroderma a decade earlier. A feeling of tightness in her skin, together with a shiny appearance, developed first on her fingers and toes; then it also appeared on her elbows and knees. She had seen other patients with cases more advanced than hers in her specialist’s office, and she had known what was coming. As time went on, the disease progressed, steadily gaining ground with its leathery unyieldingness, eventually closing in so fully all around her that she could do nothing but lie stiff and motionless in bed. She was encased in a body that would one day become her own coffin.
Latwan had to carry a heavier load than most people do, and all his life he had shouldered that load without complaint. He had sickle-cell disease, and like my patient Keith, he suffered recurring painful sickle-cell crises that claimed him when his misshapen red blood cells would suddenly start to clump together, forming tiny clots that clogged his capillaries and caused excruciating pain that lasted for days, sometimes weeks. But unlike Keith, Latwan had not become a psychological cripple from the repeated battering his body took. Although he had endured more than fifty hospitalizations by the time he was a teenager, he remained a sweet-tempered, cheerful boy.
Many of us on the pediatric staff knew Latwan well and felt moved by his courage. We lamented whenever we saw him returning, curled up on a stretcher in pain, his face drawn and his eyes closed tight as he tried to ride out the storm. We knew that even our strongest painkillers could only blunt the pain, not banish it. Then, sooner or later, we would cheer when the storm would pass and he would find his feet again and depart for home, seemingly undaunted by the knowledge that the pain would return again, and yet again.