It is standard practice for doctors and hospital staff to ask questions. From dentists to phlebotomists each new encounter brings the inquiries:
“How did they discover that you had a bleeding disorder?”
“How old were you when your bleeding disorder was diagnosed?”
“Were you born with the bleeding disorder?”
The questions rarely vary and neither do the answers I give. I try not to answer mechanically, understanding that the medical professional in front of me has never seen someone with my condition. What I have is rare, a one in a million chance.
There was no evidence at my birth that I had a bleeding disorder. The family physician identified there was something wrong when I was still a baby. Each time I received an immunization shot, I developed a large bruise. At first, the doctor apologized for the bruises caused by the injections. Later, he began to recognize that my bruises indicated am underlying problem. I am sure that this was simply confirmation for what my mother already knew. The elderly doctor seemed like a physician from an earlier century. He still made house calls carrying his large black leather bag filled with stethoscope, small surgical tools and many bottles of assorted pills. His office was a room on the first floor of his home. He was wise enough to know that he could not make a diagnosis of my problems himself, but he did know who could. He recommended we go to Boston and see Dr. William Dameshek.
My parents did not yet own a car and my father could not afford to take a day off from work. It was a half-day journey to Boston on the train. Because of the familiar nursery rhyme my father had read to me so many times, “Baby Goes to Boston,” I was happy to go on the trip. Mom had packed a lunch for us and the Raggedy Anne doll she had hand sewn. For me it was a grand adventure.
My parents were thirty-six years old the year I was born. Mom and Dad had been married for ten years by then. Life was hard in those post- World War II days. My parents were renting a cold-water apartment on the second floor of a three-story tenement. The gray stucco building had an exterior staircase. Mom cleaned when she was anxious. She scrubbed the kitchen floor on her hands and knees in the chilly, walk-up apartment as she worried about how the bills would be paid. My father took the bus to work, carrying his lunch in a tin pail. He did his share of worrying too.
On the day we took the train to Boston, my mother carried the cash that was required to see this world famous specialist. My father’s health insurance plan covered only hospitalizations, not doctor’s appointments. The money was more than a month’s pay for my father.
That day there were no answers. First, Dr. Dameshek ordered some blood samples to be drawn. He interviewed my mother about our families’ medical history. Then he performed a physical examination and talked directly to me. His white lab coat was meticulously clean and crisp. From the first, I liked this man with the round face and relaxed smile.
A week or two later a letter arrived from Dr. Dameshek. He had determined that I had congenital afibrinogenemia. Over the next few years, Dr. Dameshek followed my progress carefully. My mother and I made routine train trips to Boston four times each year. Each time he greeted me enthusiastically, as if I was his guest, not his patient. He never missed an opportunity to teach me something. His explanations were clear and simple while remaining accurate. He beamed when, at three years old, I could say congenital afibrinogenemia. “Knowledge will save your life,” he said with pride.
My Turn 