By early 2013, I was fed up with conventional treatment and life as patient. Still, the stem cell conference was coming up, and Dr. Burt’s new approach remained intriguing—maybe too much so. I began preparing for the conference and at the same time planning strategy for my imminent pitch to Dr. Burt. I read articles about him and watched videos of his work, which he had posted online. I figured I would have one shot with him, and I did not want to blow it. I was going to be ready.
Being treated by Dr. Burt was already a done deal as far as I was concerned. I was violating every rule of journalism: jumping to conclusions, predicting outcomes, and exploiting access. Dr. Robin Smith had encouraged me to contact members of my panel to talk about Rome. I had a valid reason to speak to Burt, even if my primary motivation for making the call had nothing to do with the Vatican conference.
When I felt I had perfected the pitch, I called the number Robin had given me, heart in my throat. The doctor was out of the country and would not be reachable for ten days, his receptionist explained. All the adrenaline that had been revving me up suddenly dissipated. I was deflated but determined to hold my act together. This was no time for impatience, and keeping expectations in check became my new priority. I wanted to control the tidal wave of raw emotion that had been turned loose with the prospect of a dramatic reversal.
As I slept that night, I replayed a powerful recurring dream. I fell to the floor of my home and grimly positioned myself to stand. In this iteration of the dream, I shocked myself by standing with no apparent effort. I then walked briskly to find Meredith and deliver the good news.
Was this home movie a glimpse into the future or just another silly scenario of wishful thinking? Was it really possible that I might return to jogging in the park? I knew I should not allow myself to, but as I counted down the days until my conversation with Dr. Burt, I took a brief holiday from caution. This fantasy was all I had.
The day Dr. Burt’s receptionist had suggested I contact him arrived. I called. Burt was not there but soon contacted me. “Mr. Cohen, this is Dr. Burt. How can I help you?” said the voice on the other end of the line. A chill wind blew through the receiver.
Dr. Burt seemed a bit disengaged, even impatient. Maybe he was tired. We talked about Rome only briefly. I could tell this was going to be a short conversation and realized that if I was going to bring up the subject of a possible stem cell transplant or something, I had better do it fast. Out it came in a rush of words. After he asked me a few questions about my history and age, he delivered a quick response. “I assume you have secondary progressive disease and probably have had multiple sclerosis for too long. I cannot help you.” And then he hung up. The iceman goeth.
I tried to hide my disappointment, but it was obvious to Meredith. “I’m sorry” was all she said. She could have added dumb shit, but she didn’t. She realized how much I had riding on that call. It was clear, even to me, that I had gotten way ahead of myself. I felt silly for allowing my expectations to get so out of hand.
True to form, I immediately distanced myself from my emotions and returned to working on a few writing projects. It was as if the dance with the doctor had never happened. My years of dueling with disease had taught me the need for resilience. I knew how to bounce back, but I was weary and almost out of bounce.
When I could take time away from other projects, I continued preparing for the Rome event. One day I went to Robin’s office for a conference call with Dr. Sadiq. When we discussed his approach to the upcoming panel at the Vatican, he was as warm as I remembered from our brief meetings years before. Dr. Sadiq was responsive when I asked him about his stem cell research, offering intriguing details about what he was doing. I was careful to make sure that this time my questions really were for the sole purpose of preparing for the conference. In the weeks that followed, Robin regularly sent me articles and journal pieces about the latest research in stem cell therapies. Most were interesting, some incomprehensible. What was clear from all of them was that this was a field of science and medicine coming into its own. Even beyond my initial self-interest, I found this world of change and plans for the conference compelling.
As I was studying, Meredith was preparing to host an NBC News special on regenerative medicine, the process of growing organs from stem cells. I was blown away by her report on how much stem cell therapy was already in practice. I had thought we would be looking into the distant future. There was no need for a crystal ball. Therapies were coming on stream now.
As I continued to read the articles Robin sent, I realized I was not alone in my hope for a better life. Scientists and patients alike were anxious to turn corners they never knew were there. Improved lives waited on the road ahead. Fortunes were changing. Hope was out there somewhere. Every time I thought about the stem cell therapies, that strange tingling sensation washed over me. I liked it. It felt right. But even as I continued to wonder if and when I would be treated, I remained grounded, not allowing myself to bury my head too deep in fantasy again.
Still, after decades of pushing away thoughts of recovered vision and restored mobility, I was allowing promising images in my head some room to play. Whenever I thought about the trip to the Vatican scheduled for April, I felt at least a small surge of hope. I was keenly aware of the irony of a secular Jew seeking salvation at the Vatican. I am not a believer, not even an agnostic. I am an atheist—an equal-opportunity cynic. For most of my life, I have believed that in biblical times, with low life expectancies, people searched for a way to handle their mortality. Scholars became fiction writers and moved to Hollywood, and an industry was born.
My distance from any organized religion, including my own, probably had its roots in my mother’s attitudes. My mother was born Roman Catholic. Her religion didn’t last beyond her early twenties, when she was a young obstetric nurse at Bellevue, New York’s storied city hospital. Working in the hospital’s delivery rooms in the mid-1940s, she would see the same poor Irish women, overweight and often toothless, come in year after year to deliver the latest additions to their growing families. They were such regulars that their names were well known on the floors.
Each time these mothers and their infants were discharged, the nurses would call out to them as they headed home, “See you next year, dearie.” My mother regarded their constant pregnancies as the fault of the Church’s opposition to birth control. At ninety-four, my mother still sounded angry when the subject of the Church and women was raised. “I really had no use for the Catholic Church,” she told me. Except for occasional weddings and funerals, my mother never set foot in a Catholic church again. When my mom died in 2016, she remained unrepentant.
Her dismissal of the Catholic Church was openly discussed in the family, and distrust of organized religion seemed to be in my DNA. Even as a young person, I believed that, in biblical times, with low life expectancies, the masses searched for a way to explain away their mortality. Old Testament thinkers became fiction writers and moved to Hollywood, giving birth to a new industry.
My father was Jewish. When he met my mother, he was chief resident in anesthesiology at Bellevue. My mother worked in one of the operating rooms where he practiced. They saw no future together—her flaming red hair was like a “Kiss me, I’m Irish” sign—but did not stop flirting. In the 1940s, before air-conditioning, according to one oft-quoted story, my father complained about the heat in the OR and asked my mother to open a window. “While you are up,” he said in a loud voice, “feel free to jump out.”
My mother told the other nurses there was no way the two of them could have a life together. Intermarriage was heresy in those days. Still, it became a little less rare when, against the odds, a City of New York justice of the peace married my parents on July 2, 1945.
My father’s Russian Jewish relatives had no problem with the union. His parents were busy with their own dysfunctional relationship. My mother’s Irish Catholic family was appalled and all but disowned her. Only when children arrived did peace slowly return to the family. Religion was not an easy subject at family reunions.
My parents made a half-hearted attempt at Reform Judaism for me and my siblings. My father dragged his feet when it came to arranging religious training for us. Finally, my mother told him to join a temple or we would be in church very soon. That was never going to happen, but we were dispatched to Sunday school soon enough.
My indifference to religion was complete at a tender age. When it was time, my father raised the issue of bar mitzvahs, first to my older brother, then to me. My brother was told the ceremony would be a family affair and would not be turned into the social event of the season. My brother, no fool, said no thanks. I was in my me-too phase and did not have to be asked twice.
As a family, the only time we embraced religion was at holidays. We got together with my father’s side of the family during the High Holidays and at Hanukkah and Passover, and we gathered around the Christmas tree with our Irish kin. I thought this was the best of both worlds. If we were festive Jews, I was a restive Jew. I was comfortable with my cultural identity and never questioned my lack of faith.
Meredith was brought up as a Catholic, though her mother had a prickly relationship with the local church. Meredith had wandered away from her religion by the time I met her. She does not go to church often but does not like to be called a lapsed Catholic. In later years she was deeply offended by the pedophile priest scandals. Meredith says she believes in God but has made her disdain for organized religion well known. So you tell me. Obviously, ours is a marriage made somewhere south of heaven.
Regardless of being a nonbeliever, I had no emotional stake in criticizing the Church, however, and at the moment, the reverse was true. I intended to lay off my cynicism. I figured it was time to cut the Church some slack, since the evolving science that interested me suggested I play by Rome’s rules. Fair enough.
When we arrived in Rome, I would set aside harsh judgments.
While there would be no articles of faith packed in my suitcase, no appeals to God as I passed through the gates of the Holy See, I would try to be open to whatever miracles might be wrought—though I assumed they would arrive courtesy of science, not God. If nothing came of the conference—as nothing had come of so many drugs, devices, and dreams—at least we would eat well in Italy.