Synopsis
Book by Weiner Md Howard L
Extrait
The Monster
Over the years, I have become friends with the Israeli writer Aharon Appelfeld. Aharon was born in a town called Czernowitz in the former Hapsburg border province of Bukovina. As a child he was deported to a concentration camp in Transnistria. He survived and settled in Israel, where he has lived for the past fifty years and where he writes about the Holocaust in a subtle yet powerful voice. We have shared many cups of coffee together in his apartment outside of Jerusalem, and I have shown him the centrifuges, freezers, and animals in my laboratory in Boston. In his life and work Aharon has had to confront the human spirit gone astray; in my work I have had to confront biology gone astray. Two different holocausts.
"The disease you are studying is a monster," Aharon said to me late one afternoon as we walked in the hills surrounding Jerusalem. "You cut it here, it grows there. You think it is down, but it rises again. You believe you understand why it behaves the way it does, but you are wrong. That's what you must do, Howard, tell the story of the monster."
Aharon was right. Multiple sclerosis is a monster. The monster has finally been wounded, but not yet killed.
I confront the monster every time I see a patient with multiple sclerosis, an experience that has been part of my life for over thirty years. There are over four thousand patients seen in our MS center every year, and I have patients I have followed for close to twenty-five years. I no longer see general neurology patients. Although I have worked hard in the laboratory and now run my own large lab, I never just wanted to work in the lab; I always wanted to confront the disease face-to-face. What one discovers in mice may ultimately be crucial to understanding the disease, but it is always one step removed. I have learned from my patients by studying them directly, they are a vital part of solving the riddle of MS. Thus I confront the monster not in the abstract but in the individuals I encounter every day.
I have had countless experiences with my MS patients over the past thirty years. Some have done extremely well; others have fared much worse. There are patients who share my passion for golf and not only trade golf stories but describe their illness in terms of how the disease has affected their game or ask whether they will ever be able to play golf again. There is the woman I had not seen since I treated her for an MS attack she experienced twenty-two years earlier, after the birth of her daughter; she brought her daughter to me because her daughter had had her first MS attack. There are patients I see year after year who have done so well with their illness that I spend more time talking about our families than their MS. Then there are the doctors with MS--family practitioners, surgeons, and even neurologists, with whom I speak in sophisticated medical terms but who transform from doctor to patient in the examining room. There are fighter pilots and movie stars. There are patients in wheelchairs telling me not to give up hope in my research, telling me that they don't hold me personally responsible for not curing them. There are those who tell me we are not working fast enough. There are patients who have traveled across the country or across the ocean to see me. There are patients who participate in clinical trials and donate blood. There are elderly parents bringing in a middle-aged child, and there is the occasional child or young teenager with MS. There are patients I have stopped from going into a wheelchair or brought out of a wheelchair, and there are patients who have ended up in a wheelchair despite all I did. There are patients who come in with long lists of questions and the latest newspaper article reporting on MS breakthroughs. There are those asking advice about quack cures, and there are those with sophisticated questions. It is emotionally difficult for patients to hold their hopes in check, and it is just as difficult for myself and my fellow researchers who have to play the part of instilling hope, only to see that hope dashed when a treatment disappoints.
Over the years there have been certain moments when the monster has come into painfully clear focus. One of these moments occurred in the spring of 1999 when I stopped in Denver to visit my mother on the way back from an MS fund-raiser in Los Angeles. My mother, who was almost eighty but in wonderful health, picked me up at the airport, and instead of driving south to her apartment we headed north to an assisted living facility called Mary Crest. My childhood friend Norm Wedgle had just entered the facility because of his MS, a disease that began thirty years earlier, though most MS patients do not require such a facility.
Norm loved life. In high school he was the jokester and I was the serious one; because of this we balanced each other and found both solace and joy in confronting the early stages of our lives together. I went east for school, and he took over his father's soap manufacturing business. Norm liked business. He liked to put together deals, and he was a salesman, always pushing something, always telling a joke, not easily discouraged.
Norm had his first MS attack in 1968, as I was finishing medical school. It was optic neuritis, blindness in one eye. The blindness lasted for six weeks and then resolved. For many years Norm did well with his illness, but as time passed the disease began to take its toll. I saw him from time to time when I visited Denver, often meeting him at my parents' delicatessen. In 1999 I hadn't seen him for almost five years. When my mother told me he had entered an assisted living facility, I suggested that we visit him. His sister gave us the address, and my mother said, "Let's surprise him."
I had spoken to Norm occasionally over the years, and even though we were both now in our mid-fifties, to me he was Normie and to him I was Howie. In high school Normie had given us nicknames patterned after our body shape--I was Big Skinny and he was Little Fats.
As we approached the assisted living facility, I was afraid that he might not be there and asked my mother whether we had made a mistake by not calling or arranging the visit in advance.
"Don't worry. He'll be there, and he'll be so surprised to see you," she said. She was right.
"Room 109," the receptionist said. "Norm is in his room watching TV."
The door was ajar, and I knocked on it and pushed it open. When Normie asked who it was, I said, "I've come to see Little Fats." Without missing a beat Normie yelled out, "Big Skinny!" He turned around in his chair, and we gave each other a hug.
I sat down next to him, and we held each other's hand for a moment. Normie was dressed in a T-shirt and athletic warm-up pants. He had a full beard. I looked around the room. Next to him was a motorized wheelchair. When we were teenagers, Normie had had a motor scooter, and I spent hours on the back of it, chasing girls and stopping for banana splits at the Dairy Queen. Now Normie was no longer able to walk, but he could stand up and transfer from his chair to the wheelchair. This seemingly small act gave him critical independence. It meant he could leave his room on his own and visit with others in the assisted living facility. It meant he could bathe on his own by transferring from his wheelchair to a shower chair.
Normie still had his wits about him, and during our conversation he was quick to crack a joke. He had always been a jokester. When my mother asked him how old he was, he smiled and said, "Lola, there are only three ages. You're young, you're middle-aged, and you're looking good!" We all laughed. Normie and I were the same age, fifty-five, and he remembered that my birthday was on Christmas.
As Normie spoke I could hear the cadences of MS: his speech came out in uneven bursts. The medical term is scanning speech, and the phenomenon is caused by damage to the brain stem, where motor fibers that control the speech muscles are located. Normie showed signs of other brain stem problems as well, as his eye movements were jerky and irregular. It was disorienting for me. I felt drawn to him as my childhood friend but also found myself reacting to him as a physician, trying to assess his condition, something that required emotional distance. I noticed several family pictures on the dresser and asked if he minded if we looked at them. But when I handed him a picture and put it in his right hand, he dropped it. The right hand was not weak but it was clumsy, and he told me he had to use his left hand for writing and eating. But Normie was keeping up his fighting spirit. After he explained to me the problem with his right hand, he shrugged and said, "It's the worst thing that should ever happen to me." Normie coped by always looking on the positive side, something that is not easy for many MS patients. Nonetheless, each patient ultimately finds his or her own way to cope. Normie was the first resident of the Mary Crest home, and he was proud of it. He was currently lobbying to get an exercise room for the facility and told me about ideas he had for fund-raising.
The first picture we looked at was of the two daughters he had with his first wife, Sandy. I knew Sandy; we were all classmates together in high school. One of his daughters was married, and Normie was a grandfather. "Howard," my mother said, "see, Normie's a grandfather. It's time for you to become one too."
Normie's first marriage had broken up, and he then married another woman who also was named Sandy. "I called her Sandy number two," Normie said, "but we broke up because of the MS. She just couldn't handle it."
"Is there a Sandy number three?" I asked.
"Sandy number three's name is Linda. She's my girlfriend here in the home," Normie said. "Later we'll go see her."
Of all the pictures we looked at, the one that struck me most was a picture of Normie as a young man, a high school student. That is how I remember him: handsome, chiseled features, a full head of hair. His facial features had changed, as they do for everyone as they age, but because of his illness it was more striking.
Normie had only been in a wheelchair for the past two years, but in the previous five years his condition had been slowly worsening, following a typical pattern for MS. His disease began with an attack from which he fully recovered--blindness in one eye when he was twenty-five years old. Over the next twenty years, in the relapsing-remitting stage of the disease, he suffered intermittent attacks, weakness in the legs, loss of balance, and problems with sensation. These attacks incurred relatively mild disabilities, not affecting his life in a major way. But then, as is often the pattern, his disease became progressive and he steadily worsened without attacks, with the primary effect being on his walking. A major question in multiple sclerosis is why the disease changes this way, from the relapsing-remitting stage to the much more debilitating progressive form.
Normie was on a fat-free diet and he had several diet books in his room. Normie was one of the many people who have tried various diets for MS, though there was no evidence that special diets helped MS. He was also taking one of the new injectable MS drugs. Unfortunately, I did not know how much any of these things would help him. He would have had to be taking the drug since the first sign of his MS, almost thirty years ago, for it to have had a chance to have a major impact on his disease. The progressive form of MS is the most difficult to treat.
Oh, how I wished there were something I could do to help him. I thought of other drugs he might try, of new drugs we would be testing, and then asked him the name of his physician. "Bowling," he said. When I asked him what Bowling's first name was, he said, "Doctor." I smiled. Few patients call me by my first name. I knew Bowling; I had met him at an MS conference, and he wrote a book on alternative medicine in MS. I made a note to call him and discuss Normie's case, though I was doubtful that there was anything I could do that would have a major impact on Normie's illness.
"Come, I'll show you around," he said as he transferred into his wheelchair and gave us a tour of the home. He introduced me to people as his friend Dr. Weiner, "the number one researcher on MS in the world." I was a bit embarrassed, to say the least, until he turned to me and said, "Big Skinny, you promised me thirty years ago you would cure MS, and you still haven't done it." My embarrassment turned to frustration, and I tried not to show that either. I thought of all the talks over thirty years in which I had told patients that we would know so much more about MS in the next five to ten years. We indeed knew so much more, but not as much as I had promised to Normie.
Normie then took us to meet his girlfriend, Linda. Linda was resting in bed watching a baseball game. As much as I hate television, I know well how important it is for people with illness, providing a crucial window on the world. Linda called him "sweetie," and Normie called her "honey." I could see how happy she was to see Normie and how she in turn comforted him by taking his hand into hers and giving a squeeze.
Outside in the bright Colorado sun we took a few pictures, sat on a bench, and talked about old times, catching up on people and what had happened to them over the years. He asked me to send him a copy of the old Super-8 movie films I'd taken when we rode together on his motor scooter in high school. Then Normie repeated his question: "Well, Big Skinny, why has it taken so long to cure this crazy disease?"
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