Chapter 1 Losing Sight of the Future On a dark, blustery afternoon in the autumn of 2010, I joined a ragtag army of New York City commuters waiting to board a bus that would lumber downtown. Heavy rain pelted everyone in line. We were stepping over puddles and negotiating the steep, slippery stairs, trying not to break a leg or let ourselves be blown away. As I slid into one of the last remaining seats, the bus started up again and began slowly making its way down Broadway, the Great White Way I knew so well. I would be disembarking before we hit the theater district, as I had done a thousand times. I glanced out the fogged window to see the stores and restaurants that had long served as my landmarks. I was numb, less from the chill than from the fact that in recent days it had become clear that after years of relatively stable sight, I was losing yet more vision due to complications from multiple sclerosis. MS is my constant companion. It is an incurable inflammatory, degenerative, progressive, autoimmune chronic illness. Whatever. Not only is my vision fleeing, but my lateral judgment is also compromised, which accounts for the bruises on my arms and legs from bumping into furniture and glancing off doorways. Sometimes I felt I needed football pads just to walk the streets of New York. The bus was headed to where I wanted to go, the MS was not, though both were going south. The disease was active, dancing through much of my body. The neurological predator was focusing once again on my eyes. If I lost any more sight, I feared I would lose my ability to function as a writer, not to mention as a husband and father. Suddenly I sat up ramrod straight as I realized I had no idea where I was. I could not make out the storefronts outside the window. They were lost in a foggy blur, fading to vague shapes and drab colors. Buildings were melting into unrecognizable blobs. I felt as if I had been kidnapped and was being transported to an alien place. I froze. My reflexive denial, usually a well-oiled machine, stalled out. Frantically, I attempted to peer through the fog, trying to identify anything that would tell me my location. I just could not make that happen. I turned my attention to the driver. He was yelling at an elderly woman, telling her where to get off the bus. That was what I needed to hear. I listened and figured out our current location then counted the stops until I knew it was time to struggle down the stairs. I emerged into a strange city that I could barely make out. Nothing looked right. Sights and sounds were exaggerated. Cars seemed to move at double speed. Please don't do this, I silently cried out. Don't let me lose my sight. I was pleading with nobody; I had long ago given up on the idea of a deity coming to the rescue. That narrowed my options. This kind of panic was unknown to me. During my years as a producer at CBS News, I had worked alongside type A personalities who drank coffee so strong you could eat it with a fork, people who constantly hyperventilated their way around the office. I was not one of them. I was labeled a type Z personality. It's only television, I used to say. Not worth making yourself crazy. Anxiety gripped me so hard that now I was the one hyperventilating. As I stood struggling to see the other side of a busy avenue, I was in full emotional retreat. I wanted to cry. Usually, I am a guy with a penchant for gallows humor. Now I could not find my reservoir of old, bad jokes. I had been legally blind for some time. This was something different. I knew a crisis when I saw one. There I was, standing in a cold rain on a busy street corner and wondering where to turn for help. I managed to get my bearings. My friend Charlie Osgood's apartment was right across the street. Praise be. Charlie is as calming in person as he is on television, and he helped me get emotionally righted. My anxiety level was reduced, but not by much. There was work to do. The first step was to see if I could reel in my missing vision. The next day, I was in safe territory. I made my way to the infusion suite at the Tisch MS Research Center. The office was dry and warm and strangely welcoming. I had performed this medical ritual many times when alarm bells sounded. But the voices around me were comforting because I knew the people they belonged to, not because they were in possession of a magic bullet. Out came the Solu-Medrol, the old steroid warrior, an all-purpose drug used to treat conditions as varied as arthritis, disorders of the blood and the immune system, severe allergic responses, certain cancers, eye conditions, and skin, kidney, intestinal, and lung diseases. One size fits all. I have been getting infusions of this stuff for years, mostly for lack of a more effective elixir. It fights inflammation, a contributing problem with MS, but it offers no promise of long-term change, only short-term relief. Often not even that. I would have preferred a martini. As the steroid flowed into a vein in my arm, it left the usual metallic taste in my mouth. I sat and stared at nothing in particular, wondering if any part of my missing sight would reappear. Days after the infusion, the immediate crisis might end. It might not. You put your money down and take your chances. I would have to wait a few weeks to see if my condition stabilized or even improved. Based on my history, it was unlikely it would get much better. The drug has never carried me back to the starting line. But for no extra charge, the poison does bring on madness and violent mood swings to go with certain serious sleep deprivation. I knew I would be a mess, but when vision has been lost, you do what you have to and hope there will be a payoff. Maybe my missing vision would crawl at least halfway home this time. I would settle for that. I am used to settling. In the MS world, patients make do with what we can get. By now I understand that I always am waiting for Godot. I am tired of being dragged to the theater when I am pretty sure I know how the play ends. A few weeks after the infusion, a portion of my diminished vision did grudgingly return. With the small improvement came the need for a midcourse correction. There would be new lenses, adjusted expectations, an even greater tolerance for ambiguity required. Not knowing if the improvement will last has become a way of life for me. In my well-worn speech to myself, I advised only that I keep my middle finger pointed north. That would keep the piss and vinegar circulating and serve as my compass. If that is self-indulgent, so be it. Anger can be its own command to keep fighting. Once I learned I had MS, I watched my father closely for clues of what would happen to me. My Old Man died at ninety, having lived with MS for seventy years. The truth is that after my dad retired, he had many good years and seemed strong until he reached his eighties. It was only in the last decade of his life that he withdrew, effectively shutting himself off. Once a hearty traveler, he stopped doing much and had to be coaxed out of the house. In his final years, he was in a motorized wheelchair. The Old Man seemed to surrender to a reality he knew he could not alter. I did not inherit his common sense or the willingness to recognize when it was time to raise the white flag. But my symptoms have become severe at a much younger age than his did. I already recognize my periods of withdrawing, as he had done in his old age, shutting people out during tough times. "Get out of your head," a shrink once advised me. "Engage with others." I do not much like myself as the solitary soldier, but sometimes I cannot help retreating into my head. It seems to be the only safe place where I can hide. I spend considerable time there. The entrance to my cave is firmly closed, secured with a lock only I can open. Even my close friends are kept at arm's length. My wife, Meredith, warns me not to shut myself away and become my father. I tell Meredith not to become my mother, who was fiercely loyal to the Old Man and stayed by his side to the end, joining him in forfeiting freedom. I don't believe Meredith will sacrifice her own life to my illness. Her life is too full for that. I am not so sure about myself. My anger and frustration sometimes are overwhelming. Hope can be an antidote to situational anger. Sometimes the two are served at the same table, one from column A, the other column B. Be warned. Anger and hope are improbable plate mates. They are never served in equal proportions or at the same temperatures. They do not mix well. Anger can be quite spicy; hope, bland. Anger is a mean mixture, bitter to the taste, toxic to the system. Maybe hope is a glass of warm milk; drink it before bed and sleep well. I seem more temperamentally inclined toward anger. I kept reminding myself that I am more than my illness. Who I am is in my head and heart, in my soul, not in my sneakers. I had to find a way to rise above the daily grind of illness. That is a test of faith in the future. Perhaps it is a fancy synonym for hope. Whatever it is, I was having a hard time doing it. Chapter 2 The Diagnosis Back in 1973, my immune system declared war on my body. I became aware of troubling neurological impulses, signals that something was wrong. I was living in Washington, D.C., where I had moved to work on Capitol Hill. I fell into journalism, working for Issues and Answers, the old ABC News Sunday public affairs program. Upward mobility was easy for me then. I became an associate producer and worked with Frank Reynolds and Ted Koppel. Life was good. I never tired of walking to work, cutting through the Capitol and down the hill to the ABC News bureau. I would amble past the White House and smile at the demonstrators who were always there. Each morning I shook hands with a man carrying a sign announcing that the CIA had implanted electrodes in his brain. I was happy to call myself a journalist. Back in 1973, I left ABC for PBS, where I helped produce a program in a series called America '73, hosted by Robin MacNeil and Jim Lehrer. My hour was on the politics of disability in America. As we were editing the film, I realized I was having strange sensations. I fell a few times but ignored it. One leg felt numb, which I assumed was a psychological reaction to spending time with contemporaries sitting in wheelchairs. My dad called one evening, mostly to gossip about President Nixon, who was mired in the Watergate scandal. I told him about my symptoms, and he urged me to see a doctor. We chatted briefly and hung up. Minutes later, my dad called again. "I think you have multiple sclerosis," he calmly told me. The Old Man knew the drill. Not only was he a physician, but he had been living with multiple sclerosis himself for many decades. My grandmother, my dad's mother, had MS too. It appeared that the disease might be a family heirloom, passed down to another generation. I knew surprisingly little about the illness, given that someone so close to me suffered from it. My parents were products of a culture that valued silence on issues of personal health. My father's ups and downs had become closely held secrets, and I was oblivious to his struggles. I had no basis for processing what a life with multiple sclerosis would mean. As the son and grandson of people battling the disease, maybe I should have seen this possible diagnosis coming. But nothing I had read or heard suggested there was a genetic link. I was just living my life, assuming I was Superman, like all strapping twenty-five-year-old men do. I was covering the Watergate hearings, witnessing history. I had no time for neurological nonsense. I did eventually see a neurologist on a spring day in 1973. The doctor conducted a thorough exam and ordered a spinal tap to determine if there was protein in my spinal fluid, one of the indicators of MS. There was. I had a roaring spinal headache and no peace of mind. The official diagnosis came a few days later. It was bad news. My life sentence was delivered in a quick phone call. The neurologist must have figured the headline did not warrant a face-to-face meeting. That doctor had the people skills of a prison guard, minus the charm. The ground beneath my feet had shifted. Never again would I be the guy I had always seen in the mirror. The doctor had bluntly made clear there was little he could do, code for "nothing at all." I could have used some encouragement, some hope, but none was offered. It was diagnose and adios, as the saying went. After the phone call, I sat in an old chair in my third-floor walk-up on Capitol Hill. I silently stared until twilight took over outside the windows. I began scanning my tired, shabby apartment. There was nothing in the room but torn wallpaper and a worn couch. Suddenly it struck me that I was in worse shape than the furniture. I wanted to distance myself from the news. I surprised myself by making a few quick decisions. The first was not to freak out. Perhaps the decision not to lose it was a sign of nascent hope, that remaining calm could have a palliative effect on my emotions. I knew what I did not know about MS, which was almost everything. I could not even spell multiple sclerosis. And now I knew that MS was my new life sentence. I scoured my memory for details about how my grandmother and my father fought the disease. My grandmother, Celia, was a strong, eccentric woman whose struggles with MS were largely invisible to me until late in her life. Celia sat in a wheelchair but could break an apple in half cleanly, twisting it between her bare hands. How sick could she have been? Celia was never officially diagnosed with the illness, though it now seems clear that it was MS that had left her in a permanent sitting position. This was decades before imaging, and the tests were endless and often unpleasant. The diagnostic process was difficult in those days. No one wanted to put her through that ordeal, especially since there were no treatments back then. Excerpted from Chasing Hope: A Patient's Deep Dive into Stem Cells, Faith, and the Future by Richard M. Cohen All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
