Mrs. Buttrup was a gentle, friendly person who spoke very serviceable English and seemed to enjoy sharing information about the neighborhood, the dishes she liked to prepare, and the activities of her friends and relatives. Her son, Marcel, was bright and full of fun. He, too, seemed to like having another person to interact with, even though we didn’t share a common language.
I soon found that Marcel loved to read and that Mrs. Buttrup was delighted to let him go with me on excursions to the public library when he got home from school. Since my therapy treatments alternated between a strenuous day and an easier day, I sometimes felt ready for a library walk after one of the easier days. Once we reached the library, we would go our separate ways: Marcel to the Danish section, while I sought out the English or German section. Then we would meet at the central checkout for the walk back home. Marcel gallantly carried my books both ways, as we took our picturesque walks along the canal at dusk, enjoying the sparkling lights and pointing out things to each other along the way. The two of us soon developed an amusing and effective mime language, sprinkled with English and Danish.
As my Blegdam therapy sessions progressed, Lassen’s team was educating me about what I was up against. I was learning more about the paralytic stage of the acute polio attack, the dreaded second-fever period, in which I had sustained what was called “neuromuscular scatter damage.” In this stage, the virus attacked and killed motor neurons, the neurons that activate muscle tissue. As I read about the scatter-damage principle, I began to understand why a polio patient could lose anything from a tiny to a large part of any one muscle. I had lost small parts of some, larger parts of others; the net result was great weakness and lack of coordination. In general, with polio patients, the relearning process involves building up whatever is left to compensate partially for what is no longer usable.
One of the books Lassen gave me to read emphasized that the motor neurons targeted by the virus were dead and could never regenerate or be brought back. The polio patient could only try to train neighboring motor neurons—those that had escaped the attack—to jump in and help with tasks they were never meant to do. That was a lot to absorb.
The book also explained that the most vulnerable motor neurons were the ones most strenuously in use during the few days between the two fever periods of the polio virus. The virus is already in one’s system during the first fever period; then it either fades away during the days after the fever has gone down—in which case there will be no second fever period—or it gathers momentum for the paralytic stage. This explained the “flu” epidemic that had hit so many of us at Fontainebleau. As the Lassen team agreed, that epidemic was undoubtedly the first fever period of the polio virus. What identified it as the polio virus were my own symptoms resulting from the second, paralytic, fever period, since no one else at Fontainebleau had experienced that second fever period and the resulting paralysis.
The vulnerability of the most active motor neurons during that key interim between the two fever periods made enormous, stomach-churning sense to me. What would children have been doing before they contracted polio? Moving around on their legs—running, jumping, hopping, skipping. Hence the typical after-polio picture: children with lower trunk and lower body damage; many patients needing a wheelchair, although most could still effectively use their upper bodies.
And what had I been doing between the two fever periods at Fontainebleau? Practicing the piano strenuously, many hours a day. I could easily trace the heaviest damage, and it was chillingly accurate. If I were to draw a detailed map of the muscle tissue I had used most intensively at the piano just before the paralytic stage of the virus had hit, it would be an exact map of the heavily damaged areas.
The parts of my hands and arms developed most painstakingly in many years of piano playing had been hit the hardest. Since I was right-handed, I had always worked harder on the left hand to make it equally strong and flexible. Hence the entire left hand had sustained considerably more damage from the paralytic stage than had the right. Since a pianist often balances chords and melodic content with the top voice leading in strength, which frequently calls on the fifth finger of the right hand, that finger had been singled out by the virus as a prime target.
I had strenuously used my core, back, abdominals, and breathing muscles while playing virtuoso repertoire at the piano. I had constantly used my right foot in handling the “flutter pedal”—a damper pedal technique that gave extra resonance to the strings without muddying fast passagework. That explained why I now had to turn my right foot out for balance while standing or walking. My left foot had not been similarly engaged in piano playing, so the motor neurons in my left leg and foot had been almost untouched.
As Nybo and I worked every day with stretching and trying to retrain simple and complex movements with my hands and arms, it became ever clearer that the virus had been diabolical in its targets. It had knocked out—unevenly—key muscle function in both shoulders, arms, and hands. Because of this uneven damage, we had to isolate and customize treatment for each shoulder, each arm, and each wrist.
For the hands, the problem proved to be even more complex. The virus had damaged each side of each hand differently. It had killed differently in each of the ten fingers. A compensatory movement for one finger that Nybo and I might be working on would not help its next-door neighbor or its parallel on the other hand.
I was taking my first unsettling steps toward recognizing that I would have to learn different ways to do everything. I would need to use different muscle tissue and develop new neural pathways to compensate for what had been lost. It was my first glimpse of the enormous undertaking it would be to build a new set of complex reflexes. No wonder other doctors I had seen had told me to just keep trying to live a “normal life”—without high-level piano playing. No wonder Lassen was saying that he’d never tackled a case like mine, where the goal was to rebuild a network of neuromuscular movements so complex and finely coordinated.
Lassen was already telling me that he would like help from an expert in the piano field—someone to watch our various exercises and demonstrate how a normal pianist would do what I couldn’t. He also felt that we would need help in making assessments and decisions when we got farther along. At both stages of our work, that ideal expert would be Webster Aitken, since he knew my playing “BP” better than anyone still alive. One day I decided to bring Webster into the discussion. I wrote to him, adding a P.S. that summed up my doubts: “Am I worth it? By now an old question, of course.”
His answer was immediate:
Your letter came, disturbing in its vivid picture of your physical and psychological problems, but at the same time heartening and even satisfying with its implication of having at last got to the bottom of this purgatorial state you have been inhabiting for the past three years. I am so glad Lassen can and will help to see this through; my own first impulse was to hop a plane and be with you Monday morning! Perhaps I could help, but let us see how things work out first. You ask me if you are worth it; I can only give you a flat affirmative.”
After that exchange, I tried to keep Webster and Lilian up to the minute on what was happening. My next report went into more detail:
I think I am finally getting the point about the overall difficulty—that it is not brain but reflex. As long as it all goes through the brain, the movements cannot be coordinated. If every time you took a step you had to think which muscles pull your leg and foot up; how and where you put it down; when and how to shift the weight, when to relax which muscle again, etc.—your walking would not be normally coordinated. So before I can really begin to work with the hands, those back and core muscles—which together should feel like the central control point—must take over. As they explained this in child’s language to me, I finally see what they mean about the “dead end” of working on my own, of being forced to think too hard about every movement. I am now in the odd position of trying just to peek over my own shoulder.
In doing very simple
relaxation exercises, we have found another problem: you know how people drum on a table with four fingers—one after the other? Well, do that in the air and you have the exercise. At first I could almost do it, though awkwardly, with the right hand, but the left would get hopelessly confused. Fingers would sometimes go the opposite direction; that’s a good example of what I mean when I say that my left hand doesn’t seem to belong to me anymore. Now, today, I am actually starting to do it—not fast or smoothly, but that’s not the point! I could have gone on trying to do that exercise for months, years, and probably never arrived at any way to do it.
But here, somebody sits with me and rehearses it over and over, and I am beginning to get it. I am just starting to see why Lassen thinks I am expending way too much effort in my attempts, and that at least part of what I had thought to be lack of strength is lack of reeducation.
Although I was beginning to understand that the process could take a long time, the true meaning of that “long time” was—perhaps mercifully—nowhere in sight.
During my rehab work, I experienced many revelations that encouraged and at the same time distracted me. We worked on other significant things affecting everyday life rather than just focusing on my piano playing. It was exciting to find that my voice was becoming more resonant and that talking became correspondingly easier as we worked on the core muscles.
Walking down steps was another of those “everyday life” problems. Even though my legs had been the least affected part of my body, a great fear of descending a flight of stairs, first evident in Paris, had stayed with me. As Nybo and I worked on exercises for the core muscles, I found that descending a staircase was gradually becoming less frightening.
A different test came up at Mrs. Buttrup’s, as she, Marcel, and I were having dinner one evening. She explained that she needed to go into the hospital for a few days to have some surgery and was hoping that I would be able to take care of Marcel while she was away. I was eager to help; the main difficulty would be preparing the evening meal. But Mrs. Buttrup assured me she would have several dishes prepared in advance and that it should be relatively easy for Marcel and me to manage.
True to her word, she left the refrigerator well stocked, and Marcel and I were determined to run everything as smoothly as possible. One day I put some soup on to simmer shortly before he got home from school. It seemed a little bland, so I looked around for peppercorns to add to the broth. An obvious jar sat close to the stove, and although the peppercorns seemed a little different in texture from what I had expected, I proceeded to sprinkle a few into the mix. When Marcel came home I showed him a puzzling thing about the simmering soup—a strangely abrasive feel and sound was coming from the bottom of the pot. When I pointed to the jar from which I’d taken the peppercorns, he burst out laughing—too convulsed to speak. He pointed to a birdcage on a high kitchen shelf. Aha! What I had thought to be a jar of peppercorns was a jar of bird gravel! We laughed all evening, having of course fixed ourselves something else for supper.
Mrs. Buttrup came back to the Ryesgade flat in good shape, and we resumed our accustomed patterns. After our evening candlelight dinners, Marcel would settle down to do his homework and read, and I would retire to my room to lose myself in one of the books I’d brought from the library.
The books were a refuge from the reality that was emerging from the treatment program. That reality required constant adjustment, not only to the daily breakthrough-letdown patterns, but also to the physical fatigue. By the time I had done my exercises, including core exercises for the muscles involved in breathing and speaking, I was spent, emotionally and physically. It was more restful to avoid talking, and the reading allowed me to forget about my own journey for a while.
I found a way to prop up a book so that I didn’t have to hold it. My arms, of course, had to be supported so that I could turn a page without a repetitive strain on my shoulder. I had this technique down to a science, so that both elbows could be supported, and I could flick over a page with a relatively good finger. I just had to make sure that my back, shoulders, and neck were well supported and wouldn’t undergo any extra strain.
An excerpt from a letter to my family gives the picture of the refuge that had replaced Vienna’s Staatsoper, Baroque Seminar, and Schenker graphing. I could rave about what I was reading, instead of continuing to subject my family to the seesaw of the daily search for neuromuscular breakthroughs:
If I read something absorbing in the evening, it helps me to get to sleep at a decent hour. I’ve just discovered Karl Jung’s Modern Man in Search of a Soul—fascinating in the way a great psychologist blends Western and Eastern thought. Speaking of which, I’ve also been reading the Taoist philosophers (Laotse and Chuangtse) and wondering why I never read them before—so delightful, and of course helpful.
It’s not hard to understand why I was drawn to philosophical material at that time, at least to the authors whose writings I could interpret in a hopeful manner.
I was beginning to see my therapy goals in clearer perspective. In the first year or so after the polio attack, I thought that I was making good progress, and that I would surely keep on at that rate. I had no idea of the distance I had to travel. What appeared to me as, say, a distance of three miles, was really more like three thousand. Feeling that I was moving at a good pace along the first mile, I expected to reach my destination—where I would have full strength again—equally fast. That proved to be an extremely unrealistic vision.
When we began the Copenhagen program, I felt excited again after having gradually become discouraged in Vienna. I was thrilled over every minor breakthrough Nybo and I made. Each one felt major; and in reports home or to the Aitkens or to Martha and David, I would describe it as such. But after each breakthrough came a corresponding letdown, as that tiny gain would take its place in the larger picture. My excited “breakthrough” reporting was simmering down, as I began to glimpse a long road that was uncharted, even for Lassen.
It became ever clearer that we weren’t finding a magical path to my “real” reflexes: to the way my movements were supposed to produce sound. Instead we were finding artificially created “work-arounds” that allowed me to do similar movements through strenuous repetitions. In a sense, I had already given up looking for my former “real” pathways. I wanted to find some pathways, any pathways that would lead me back to the keyboard.
The only bearable outcome for me was based on this assumption: If I could get enough movement to return to my hands, arms, and supporting muscles, eventually I could find my way back to a more “real” partnership with the piano. For that transition to happen, though, Lassen thought I would need help from a professional pianist. He and I were both counting on Webster.
As my birthday drew near, I couldn’t resist reporting to Webster on one of my breakthrough moments, though I knew I should try to put it into the bigger picture:
“On Saturday I reach the quarter-century mark—had been dreading it—but now what a birthday present I’ve been given! A perceptible part of my left hand! The most precious thing to me is feeling the beginning of some life in both hands. I’ve been working with so much dead tissue that I hardly know what “life” in either hand feels like anymore. I’ve long since gotten used to their feeling like somebody else’s hands.
A few weeks later I wrote to my family:
Lassen and I have had another of our important talks. He has set January as the time we will estimate what is possible for me and what is not. He thinks there will always be certain deficiencies, at least in the left hand, which I’ll have to work around in some way, if a way can be devised. He isn’t sure about it yet, or about the fifth finger of my right hand, but that is the way it appears. He said again that he thinks I should start working with a pianist as soon as possible after leaving here, so I hope that I can work out something with Webster. I’ll want to do a few things back in Vienna, and then hopefully be on my way home!
Lassen’s original estimate had been for six months
of therapy, which would take us until the beginning of February 1959. But early in January he invited me to his office for a meeting with the team, to discuss everyone’s view of where we were. Lassen, Snorrason, and Nybo were all smiling warmly.
We discussed in detail the positive gains we had made together, and some of the attitudes they hoped I would always keep in mind. All three felt that they had done everything they could for me, and they held optimistic hopes for continued progress as I worked at the piano, hopefully with some professional help.
In Lassen’s opinion, backed up by his team, the next step should be his long-anticipated session with Webster Aitken, me, and a piano. Webster had let me know that he had reasons to come to Europe in early March, but that he could come a little earlier if necessary, and would adjust his schedule to accommodate Lassen.
I was surprised and grateful when Lassen said that he was willing to travel to Vienna, rather than asking Webster to come to Copenhagen. He felt that Vienna might be the best place for the three-way conference “at the piano.” That way, he said, I would have time to get my bearings first, back in Vienna, and then he and Webster could coordinate their time there.
Toward the end of the meeting, after Nybo and Snorrason had left the room, Lassen stated a conclusion that would echo in every corner of my consciousness for many years to come. He led up to it gently, but there was no way to cushion the words. “In my opinion,” he said, “whatever neuromuscular function hasn’t come back in another year’s time will probably not come back at all.”
Another year? Only a year? But how could my continuing effort and progress be restricted to such a short time, when there was still so far to go? Even as I was shaking inside, however, I knew that Lassen—with characteristic compassion—was humanely trying to protect me from a lifetime of disappointment.
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