Lily is right about you,” Meredith told me several years ago. Lily might be our youngest, but she is definitely not a child any longer. Lily usually is more outspoken, more ready to buck authority than her older brothers are. I had a suspicion where Meredith was going with this.
In recent years, whenever Lily was home and heard me having one of my outbursts over my inability to tie a tie or tuck in a shirt or whatever my latest frustration, she would give me a lecture. I never wanted to hear it because I knew she was right.
“You have to learn to ask for help,” Lily had lectured me on a recent visit. “Stop making everyone around you miserable.” We had paid for college, but now suddenly she was my mother. I’m not yelling at anyone else, Lily, I protested, only at myself. I just need to let off steam. Lily was not buying it. I guess I was not either. I knew I was in a grand funk and needed to snap out of it. The eruptions were getting old.
It is difficult to ask for help when all I wish for is a life of my own invention. I wish for a life in which I am free to rise as high as my talents allow. I crave limitless possibilities. MS is a weight I do not want to carry. If I dare to hope, it will be for that burden to be lifted. Times were tough, and I was having trouble locating my red cape.
One evening, I fell. I silently slumped to the floor of my office at our home in a small village on the Hudson River. It was a slow-motion pitch forward that could not be stopped. I crumpled, sinking on legs gone soft, unable to finish the job of crossing the room.
I lay still, looking around for something solid to support my weight—a bedpost or the railing at the top of the stairs. I needed something sturdy to grab and pull myself up. I lifted my deadened right leg into position to help me stand, but I was unable even to get to my knees. I dragged myself along a rug that burned my skin with every pull forward.
My strength was sapped. Finally, I gave up and did what I had wanted to avoid at all costs. I yelled for Meredith. Then I remembered she was downstairs and would not hear me. I crawled to a desk and reached up, knocking a telephone to the floor so I could call her on her cell phone. I knew how upset Meredith was going to be.
Meredith is small and I am tall, not a good recipe for strenuous teamwork. This time she strained her back trying to lift me to no avail. Her discomfort was obvious. I squirmed with guilt for causing such pain. “What if this happens when I am traveling for work? What will you do then?” The predictable questions came fast and furious.
My mind flashed to happy, peaceful times from our past, like our determined runs through Chicago’s Lincoln Park Zoo in subzero temperatures. I remembered hikes up ski slopes in summer, Ben in a backpack, egging me on. Days were long once, nights longer. We owned our lives, and we were happy.
“I’m calling the police,” Meredith suddenly announced. “I can’t do this anymore. I just can’t.” A few minutes later, two very large men in uniform presented themselves. Of course, when you’re flat-out and smelling the floor, everyone looks particularly large. The cops were affable and effective. Seconds later, they had me on my feet and I was walking normally, at least for me. Just another boring evening at home.
I could not stop wondering why this stuff happens to some of us. Why me? I always resist asking that question. It has the sound of a victim. Maybe the only answer is “Why not me?”
I understand illness and injury arrive indiscriminately. Still, I could not let go of the “Why me?” question, though I kept my obsession to myself. Following a series of emails, I was able to arrange a meeting with Rabbi Harold Kushner, who had written a seminal book addressing that age-old question. When Bad Things Happen to Good People spoke to the many living with loss.
Rabbi Kushner generously agreed to meet with me and suggested a day when we could convene at his temple office in the suburban town of Natick, about twenty miles from Boston, where he is now rabbi laureate.
My taxi delivered me to Temple Israel, where I was shown to a seat outside the rabbi’s study. Soon a white-haired gentleman arrived and ushered me into his study. The rabbi looked great for his eighty-one years. He was tall and dignified. His old study, on the other hand, was not so elegant. The space had the look of a small abandoned warehouse.
The simple surroundings made sense. Rabbi Kushner was an unpretentious man. He made me feel comfortable at once. He was warm and not at all reluctant to talk about the sensitive subject he knew I was there to discuss. Instead of speaking about my MS, I wanted to hear about the rabbi’s own loss. In November 1966, on the very day that their daughter was born, Harold and his wife Suzette’s three-year-old son, Aaron, was diagnosed with progeria, or “rapid aging,” a rare genetic disorder. The disease strikes one in eight million babies. Aaron died when he was fourteen.
How do you make sense of what you went through with the death of your son? I asked. His answer was simple. “You don’t. You don’t even try,” he responded evenly. “It is truly random.”
Rabbi Kushner told me he expected only friends and family to read When Bad Things Happen to Good People. Instead, it was a runaway bestseller, remaining on the New York Times list for eighteen months. The book became a bible for the many who knew personal pain.
“I wanted to write a book that could be given to the person who has been hurt by life,” the rabbi wrote in his introduction, “by death, by illness or injury, by rejection or disappointment—and who knows in his heart that if there is justice in the world, he deserved better.”
Rabbi Kushner made it clear that he believes the pain we suffer in life often is arbitrary. “Some people have good luck for no reason. Some have bad luck.” He then acknowledged my health problems. “You understand that and I understand that.” He added that he does not blame God. “It’s not God’s job to make sick people healthy. It’s God’s job to make sick people brave.”
The rabbi sat back in an old desk chair and began speaking softly. “You don’t have any control over whether this is going to happen to you or not,” he told me. “You’ve got a lot of control over what you are going to do about it. You can respond with grace and courage, or you can respond with despair and the search for somebody to blame. That is up to you.”
In When Bad Things Happen to Good People, Rabbi Kushner says that such an opportunity to respond to adversity is a gift. For him, writing the book was a chance to make a highly personal statement, to “distill some blessing out of Aaron’s pain and tears.”
I felt a new energy as he spoke. Even when he was talking about his own experience, it was like he was talking about my life. “Let me suggest that the bad things that happen to us in our lives do not have a meaning when they happen to us,” Rabbi Kushner went on. “They do not happen for any good reason that would cause us to accept them willingly. But we can give them meaning. We can redeem these tragedies from senselessness by imposing meaning on them.”
In other words, it is up to us to make sense out of what happens and give it meaning. To do that is an achievement. His sentiment was echoed by a passage I had read and tucked away by Václav Havel, the Czech writer and first president of the Czech Republic. “Hope is . . . not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.”
How many of us possess the emotional strength to will that certainty into being? I asked the rabbi. “There are people who have had the hope just bled out of them, and I pity them,” Rabbi Kushner said. But he seemed to think such people are the exceptions. “The average person, give them any tiny crack of light, and they will fasten on to that. It is self-fulfilling to a very great degree.”
Rabbi Kushner offered a final thought. “The real takeaway is that no matter how unfair life is, God gives us the resources to handle it. And God gives us people to make sure we never feel abandoned and alone.”
On the train back to New York, I replayed our conversation on my digital recorder. I felt that the rabbi had offered me punctuation for my inquiry, a period to place after the last sentence. I was grateful; I had grown tired of question marks.
I am grateful for the family that has put up with so much from me and for the friends I can talk to, those who understand the questions I ask. Whether or not it is God’s gift, to not feel abandoned and alone may be the best we can hope for in this life.
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.