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.
I did not even know my father was sick until I was in my first year of college, barely six years before my own diagnosis. He called a family press conference one day, made the announcement, and took no questions. I felt as if Nixon had just left the room. My dad had seemed to be doing well, but no one except my mother really knew. And she was not talking.
My dad had been diagnosed when he was twenty years old, during his first year of medical school. He temporarily lost vision in one eye. Later he developed double vision. That did not stop him from finishing medical school when he was twenty-four. He became an anesthesiologist, then a pediatric anesthesiologist, putting young kids under and keeping them alive during surgery. To me, that line of work was unimaginable, but he could do it because he kept his cool. That served him well when dealing with his own illness. He continued working until he was sixty-three, when he could no longer wheel the young patients back to their rooms after surgery.
The Old Man wore his illness well, and he never lost his sense of humor. He lived a full life and was a role model for me. His resolve was contagious. So was his realism. When I wrote Blindsided, my memoir, I asked my father if he would mind if I called him the Old Man. “I would expect nothing less” was his answer.
My doctor’s implicit message, which I had received loud and clear, was that there was no hope. I never had thought about that word in the context of my health. For me, hope was about winning promotions or getting a date, not staying healthy and alive. And now I had been told to forget about help or hope. This was a devastating message to give to a young man of twenty-five.
I rebounded quickly. Or rather, I went into deep denial. I was athletic and ambitious, and because I was for the most part without symptoms, I looked and felt healthy. So I decided to just ignore my diagnosis and assume that I would remain well. I was being defiant rather than realistic, but I had accidently discovered a coping mechanism that served me well for years.
So began the long and uncertain process of redefining myself. I assumed I had to shape a new plan for my future. What that meant was unclear. Everything seemed to defy explanation, but I was confident that I could take care of myself. This was pure bravado on my part, but I felt I had to act it out, even on shaky legs.
There can be no doubt that determination is embedded in my DNA. Just like the Old Man had, I decided this sickness would remain under wraps. I would keep quiet, and I would prevail. The Old Man lived with a secret sickness and urged me to do the same. I never heard him complain, and I was careful never to complain in front of him. The one time he heard me ask, “Why me?” he responded quickly, calling me a professional asshole. I did not make that mistake again.
Determination and denial carried me far, though I struggled with knowing how much denial was too much. MS was breaking down my door. Eventually, the disease was no longer a stranger, but it still treated me with cold dispatch. I began to feel truly disabled. Physical abilities fell away like dry leaves. I thought of the days when my wife, Meredith, and I used to hike together, climbing the steep ski slopes of summer and breathing free. In the fall, we would bike back roads as the foliage changed, turning green to gold. Soon enough, I knew biking was in my rearview mirror.
Over the years, I kept moving as best as I could, even though I had to walk with my eyes pointed down, stepping carefully, since I could trip over obstacles as tiny as sidewalk cracks. One would have thought I was on the lookout for loose change. I have been on the streets of Paris and hardly noticed the Eiffel Tower for fear of tripping over a cobblestone.
Those of us who grapple each day with physical flaws must program ourselves to take the safe, paved path to get us where we are headed. In due time, we reach our destinations. Taking the well-traveled road can be boring, but it gets me there.
A life of being without doing is boring, and boredom is among life’s fiercest foes. The safe, sedentary existence is not for me. My years of being an adventure addict and living dangerously around the world for better or worse made me who I am. Now Meredith gets on my case for jaywalking. How the mighty have fallen. But crossing a busy avenue against a green light is about as much adventure as I am able to enjoy. That is not a recipe for longevity, especially being legally blind, but it will have to do. Risk for its own sake is foolish. I know that.
Serious sickness too frequently defines a life. We become whatever condition afflicts us. How we believe others see us can be a powerful force. Who we see in the mirror each morning defines our sense of self. We fall back on personal strength and the power of a loving family.