Mar 302013
 

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 more about compassion than all my spiritual studies had. 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.

The little boy’s mother had brought him to our emergency room one night, burning up with fever.  The chest x-ray we took showed he had pneumonia, and so we promptly admitted him to the pediatric ward.  His mother lingered at his side for a time, but then departed and never returned.  Eventually we learned she had been admitted to another hospital shortly after leaving ours and had died there from complications of her own AIDS.  The one thing she had left her son was his name.  She had called him Angel.

Angel had been on our pediatric ward for three months.  There was no other place that wanted him, and frankly we were happy to keep him with us.  At least we knew he would be fed and kept clean and sheltered and would occasionally be held in another human being’s arms when one of the staff was able to spare a moment or two.  We knew he had little time left.

One night, when I was on call and kept busy on the ward into the wee hours of the night, I glimpsed a side of Angel’s story I had not been aware of beforeThe ward’s lights had all been turned down and most of the children put to sleep in their beds, and I was going about the typical work of an intern – reviewing orders, checking on patients’ vital signs, and peeking in on the sickest ones – when something caught my ear.  A faint lyrical sound was whispering down one of the dimly lit hallways.  Listening closely, I detected the thin notes of a melody carried by a human voice.

I was tired and still had chores to do, but the wistful sound called to me, and so I followed it, curious to learn what its source was.  It led me to Angel’s room.  Yet what I saw through the doorway as I approached made me pause and remain in the quiet shadows of the hallway rather than enter.  For it was clear that more was taking place in Angel’s room than the sad wasting of an unfulfilled life.  Something more intimate was happening, something that needed not to be disturbed.

With Angel was his father.  I had never seen the man before, but during discussions on our daily morning rounds, I had heard that he often came in the wee hours of the night to visit his son.  He was a tough-looking person, unshaven and stamped with the harsh signs of inner city life and his own battle with the AIDS he had acquired during years of drug addiction.  I wondered what factors in his life prevented him from visiting in the light of day as other parents did.  Perhaps he was fully occupied with trying to survive, I thought, or maybe he just preferred the lonely hours of the night, when he was less likely to encounter the accusing stares of strangers’ eyes.

The man was sitting in a chair, holding Angel on his lap and feeding him infant formula with a dropper.  As I watched, he waited carefully for his son’s lips to accept each drop before offering him another, all the while gazing into his child’s eyes and softly crooning a melody—a hauntingly soothing sound, the notes filled with reassurance and encouragement.  Angel’s eyes remained fastened in turn on his father’s face, as if he were drinking in life-giving nourishment from the look that he saw there.

The two of them were in such a rapt communion that I remained bound in unmoving silence outside their door.  It seemed that I had been summoned not to enter, but to stand as an observer of this exquisite scene, witness to an act of meaning that lay beyond my mind’s measuring.

What I had been called to witness, my heart said, was the compassion that was shining brightly in that little room.  Nothing more than that, and nothing less.  In the light of that compassion, the tragedy of Angel’s pitiful life—of both their lives—was being lifted up and set aside. I could feel the truth of that as surely as anything my medical books had ever taught me.

The shadows in the hallway seemed to whisper: Do you see? This is what compassion is. It is a force more powerful than even life-destroying disease. It can willingly embrace whatever the world has abandoned as hopeless and transform it into something to be cherished.

As I dropped my eyes and turned to go back to work, gratitude for having glimpsed this side of Angel’s story filled me. I could not help but wonder: how many of us will be sung to with that much compassion as we lie in our own last days of life?

Oct 192012
 

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. They lead from the arrival of new life in the hospital delivery room through episodes of illness and injury and the ever-present hope of healing, all the way to the bedside of those who are in their final days. They tell about moments when ordinary people seek help in facing extraordinary trials, and they reveal the many ways in which triumph and transformation can prevail amid the harrowing circumstances of hospital life and the hi-tech, sometimes Stone-Age-like practices of modern medicine.

At the same time, these stories shed light on the inner life of doctors. They provide insight into the long, grueling path of training that doctors must undergo and the soul-stretching experiences we endure as we seek to help people whose lives are at stake. It is a life I have loved. Being able to help people who are ill and suffering has been a privilege. To see life become better for many of them has been a wonderful reward.

I have loved the profession of medicine for another reason as well: being a doctor has made me appreciate life’s profound mystery. For the mystery of life—the miracle that surrounds us at every moment but is so easily taken for granted—stands out more clearly in times of urgency or crisis like those encountered in an emergency room or intensive care unit or delivery suite. When you feel life is at risk of slipping away, you become very aware of how precious and irreplaceable it is. And because these places of urgency and crisis are where I spent much of my time, I felt the wonder of human existence on a daily basis.

These stories contain that wonder, each in a different way. Some relate the experience of parents, like Saul and Rebecca, whose first child died in their arms from a brain tumor at the age of two, and whose second child came into the world bearing a gift that made all of us in the delivery room gasp. Others describe the experience of infants, from the snuggly wrapped newborns lying safely asleep in their bassinets in the well-baby nurseries to the other little newcomers in the Neonatal Intensive Care Unit down the hall, the not-so-lucky ones who clung to life by a thread.

Still others concern remarkable children, such as four-year-old Isabella, an impish child with AIDS whose wisdom reached far beyond her years; and young Bobby, who taught every person he knew that being “different” means nothing more or less than being exactly who you are; and little Angel, who had the gentlest dying of anyone I have ever known. There are also adolescents, like Migdalia, an angry sixteen-year-old whose inner strength allowed her to survive a devastating accident and find a goodness in it that changed her life, and Leo, a terminally ill, thrown-away teenager in foster care who discovered the power of forgiveness and generosity all on his own.

Some of the stories concern older people too: James, a longtime drug dealer with AIDS whose near-death experience showed him that his wasted life had more good in it than he had imagined; Randolf, a proud patriarch of the theater world who made peace with a monstrous self-doubt in time to savor a gentler view of himself as he waited for death to come; and ninety-six-year-old Hildie, who, despite her toothless, debilitated condition, insisted that being grateful is one of the most important things one can do in life.

My aim in telling these stories is to offer a riveting glimpse into the world of hospitals and doctoring where so much intensity and depth exists. It seems to me that many people today are hungering for this—hungering to taste the unadorned reality of joy and pain, of life and death. I have done my best to see that the stories contained in the following pages provide that opportunity. They are intended to plunge readers into the sometimes unsettling but ultimately uplifting drama of life and leave them in awe at the miracle of being human.