Book excerpt: Richard Cohen's 'Chasing Hope: A Patient's Deep Dive into Stem Cells, Faith and the Future'

Excerpted from "Chasing Hope" by Richard M. Cohen, published by Blue Rider Press, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright 2018 by Richard M. Cohen.

One day, I fell one time too many. Meredith wanted to call the police again. Her words fell on deaf ears. I shouted, no, please don’t. I was upset and insisting I would get myself up. I all but banished her from the room. Not a smart move. I was out of control and more self-conscious about bothering the police again than about what I was doing to my wife.

Meredith had a different take on the situation. She had been pushed over the edge. She angrily told me she was done with the MS. I still can visualize the desperation on her face. “We can’t live this way,” she kept repeating. I was not to ask her to do anything more for me. Period.

Meredith added that some of our friends thought I was selfish, thinking only of myself. Then she abruptly left the house. Meredith was pissed and probably hurt. This was a sobering moment for me. I thought hard about how much Meredith does for me and how ungrateful I must seem, nursing my own emotional needs and ignoring hers.

It took me more than an hour to pull myself up three stairs toward her office so that I could use the iron railing to help me stand. Finally, I was vertical. I knew I had to do something about my attitude. My self-absorption had reached critical mass. I sat at the computer and consulted Dr. Google to find a company that sells pendants with a button to send an alarm when there is a medical emergency.

After ordering the pendant, I took a deep breath and contacted the local constabulary. It was time to have a conversation with them. As usual, the men in blue were terrific. I don’t know why I was so hesitant to involve them. They told me they go to people’s homes regularly to assist residents in need. “There is an elderly lady with MS who falls out of her wheelchair almost every day,” one officer explained in a reassuring tone. “We are always there.”

The officers agreed to take a key to the front door in case Meredith was away when I paid one of my visits to the floor. They put me at ease, but they kept calling me “sir.” I thought of what they had said about the old lady who could not stay in her wheelchair, and I figured the young cops must have seen me as an old man.

I knew I could not let vanity get in my way. I had waited far too long to make these moves. When you are acutely ill, self-absorption may be excusable. Maybe. But I had strayed from understanding that when it results from a chronic disease, sorry, Charlie. Chronic illness is a family affair. Spouses have the burden of tending to the needs of a loved one, even when they would secretly rather push him out a window. I knew they should not be treated as spectators when they are in the ring with us.

It’s funny how self-absorption can marry self-doubt. They feed off each other. More than forty years since the diagnosis, I was feeling more threatened than ever. I was scared silly of finding myself in a helpless state from which there would be no escape. It scared me that my deterioration was outpacing my father’s.

No longer could I slide smoothly into the front passenger seat of a car; instead, I had to grab my leg with my hands and drag the deadened limb into the vehicle. One day I realized I could not move my fingers enough to put on a pair of gloves. I stared at my right hand in disbelief. I could not write or even hold a pen in my right hand. I could not hold a fork with that hand and eat, couldn’t shave or brush my teeth with it either. I had to pivot to the left. I was a right-handed guy living a left-handed life.

No longer could I pretend I was winning the war. In short, I was in a bad place, withdrawn and spending too much time alone. One day my home phone rang and rang. Caller ID signaled it was a good friend. I listened to the message. He was inviting me to join him to walk along the river, as we so often did.My chest tightened, but I did not answer. I waited until the message finished and then erased it. I only wanted to be left alone. I was hiding, warehousing myself on a dusty shelf out of sight.

This was the condition I found myself in during the spring of 2012, when Meredith called from the car on her way home from work to tell me she had been contacted about a stem cell conference to be held at the Vatican. The two of us were going to be invited to participate.

Huh? This was intriguing, since Rome is among our favorite places and, at the very least, it would be wonderful to have a reason to go there again. But the proposed plan was also puzzling. The Vatican hosting a seminar analyzing stem cell therapies? Meredith went on to say that they wanted her to act as one of the overall hosts, and they were interested in having me chair a panel on cell therapy and its applications for autoimmune diseases, including MS. of course, that was a subject about which I knew precisely nothing. Weird. What was this all about? I wondered. I could hear Meredith shrug over the phone. When we hung up, I sat in silence for a few minutes. I struggled to make sense of a stem cell conference at the Vatican. The Catholic Church’s fierce opposition to embryonic stem cell research was well known. The idea of my participation at such a gathering was also confusing, since I could not imagine what I would bring to it.

But the prospect of a scientific meeting shedding light on stem cell therapy certainly was enticing. I had not known that patients were already being treated with stem cells. Could this be a ticket out of my cave? A trip to Rome sounded pretty good too. I was excited, even a little bit hopeful about what I might learn there. A seed had been planted in my head. I needed to hear more.