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INTRODUCTION

ONE OF MY most vivid memories of being hospitalized as a child was awakening in the middle of the night with my bed sheets soaked in blood. I was alone, since parents were not allowed to sleep in the hospital back then. I walked down the hall to find someone to help, noticed two doctors sitting in a workroom scribbling on charts, and stood in the doorway frozen in silence until they noticed me, cleaned me up, and gave me a fresh gown. The blood was just a blown IV, but it looked like death to a terrified 7-year-old boy. The next evening, when my parents left to go home after visiting hours were over, I told them, “I won't see you tomorrow.” When they asked why, I said, “I am going to die tonight.”

A RARE ILLNESS

Our family grew up on a river in New Jersey, so we spent countless hours playing in and around the water. I was usually exhilarated and energized by excursions on our boat, but the summer when I wasseven I remember feeling oppressive fatigue and excruciating joint pains. I think I slept for 15 or 16 hours a day. When my symptoms persisted for several days, my parents sought help from the pediatrician in our small town, but he had no idea what was wrong with me. Back in those days, people stayed in the hospital until their doctors established a diagnosis, so I was hospitalized for over four months, initially in my hometown and later in a major medical center in New York City. My doctors eventually diagnosed Lyme disease, which had just been described at the time. I was one of the first pediatric cases.

I was eventually cured with antibiotics, but not before experiencing considerable trauma. At one point my doctors were concerned that I had developed Bell's palsy, so they did a lumbar puncture. At that time, lumbar punctures and other procedures were done very differently as compared to now. These days, one or more parent is allowed in the room, and kids get full conscious sedation. Back then, my mom was forced to wait outside while a medical assistant held me in a fetal position wide awake as the doctor injected lidocaine at the puncture site. Everything around me—the air, the fluorescent lights, and the steel table —was cold. Lumbar punctures remain common in pediatrics practice to rule out meningitis in febrile kids, but throughout my pediatrics training, I never felt comfortable doing one. I always imagined myself on the table with the needle in my back.

THE PRIVATE WORLDS OF DYING CHILDREN

Another very traumatic memory I have from my hospitalization was when my roommate, who was a burn victim, woke up in the middle of the night screaming hysterically. Several people rushed into our room and whisked ...

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