Martha had kept up a correspondence with some of our fellow students from Carnegie, and I would often add a note. One such friend was David Appleby, who had finished a two-year stint in the Navy, applied for and been granted a Fulbright scholarship, and wrote that he was planning to join us in Vienna to study conducting at the Academy. That was welcome news.
David was born into a Salvation Army family (both his mother and father were Salvation Army ministers), and had grown up with the concept of service to others, along with the idea that music could enrich the lives of disadvantaged youth. While still in college, he had volunteered a substantial chunk of his time to Salvation Army centers, where he taught youngsters to play brass instruments and sing. David had fallen in love with Martha during their freshman year at Carnegie, but she had already begun what was supposed to be a secret affair with a dashing English professor who gave brilliant classes for the music and arts students. By the time that affair had come to a tempestuous close, Martha and David had become close friends, and I had joined their circle.
At Carnegie, David and Martha had started a madrigal group, just for fun, and I had joined as their “pitch pipe” and as a serviceable second soprano. David had gotten dates for our group to sing at senior centers and at other places where we were most welcome. It was one of my favorite recreational activities during those years; but after polio and its effect on my core muscles, I never again thought about joining a singing group. I didn’t explain this to anyone; it was difficult enough having to acknowledge the damage to my shoulders, arms, and hands.
When David arrived in Vienna, he was shocked at my appearance and at some of the things I couldn’t do. In our letters, Martha and I had been presenting the aftereffects of my polio as problems I was rapidly leaving in the dust. David thought our living arrangements looked somewhat uncomfortable, especially for me, and started looking around for something that would accommodate the three of us. He discovered that real estate in Vienna was amazingly cheap by American standards and decided to use some of the funds he had saved from his Navy years to buy an old flat that needed some fixing up. It was a fifth-floor walk-up on a short street called the Köllnerhofgasse (Cologne-Court Alley). There was a handy Julius Meinl coffee shop right across the street, and it was just a short walk to the Staatsoper. If you leaned out of the living-room window, you could see the famed Stefansdom (St. Steven’s Cathedral).
David was determined to do his own renovations to the “Köllnerhof,” as we called the flat, and I offered to buy the furniture as my contribution, in addition to renting another piano. It wasn’t hard to find used furniture, and my favorite discovery was something called a Garten Sessel (garden chair) in which I could lean back comfortably, with back and arms well-supported, right in the living room. Being able to participate in conversations without having to excuse myself to go lie down from time to time was remarkably freeing.
David thought that our lives would improve with a means of transportation other than a streetcar or walking—in other words, a car. My parents, too, thought it a fine idea, and Dad used his automotive connections to help us acquire a little blue Volkswagen. David and Martha were both excellent drivers, and I was happy to leave the driving to them. The “Blue Bug” enabled us to move our belongings into the Köllnerhof flat and to take a few refreshing side trips out of town, during which I could be reasonably comfortable.
One of our first trips was to visit Sieghart and his family in Grieskirchen, a little town just west of Linz and north of Salzburg. When I had first met Sieghart, he told me that his father had been assassinated by the Nazis; but as our friendship blossomed, I noticed that he spoke of his father almost as if his beloved parent were still alive. One day he mentioned that he wanted me to meet his mother and father. I answered very gently and carefully that I would love to meet his mother, but was under the impression that his father had been assassinated by the Nazis. “Oh yes,” he said, “he was assassinated, but he escaped.” Once we determined that his father, who had been part of the Austrian resistance movement, was alive and well, I explained to Sieghart, with enormous relief, that in English you would call that an attempted assassination.
David registered at the Academy, where he found the musical activities he had been anticipating with great excitement. He was interested in studying harpsichord in addition to conducting, so I introduced him to Harich-Schneider; and he signed up for both harpsichord lessons and Baroque seminar. And now, instead of volunteering for the Salvation Army in his spare time, he could attend the Staatsoper and explore Vienna. He was in heaven.
There were also times when David and I had the opportunity to talk seriously about personal matters, especially about troubling things he had observed. David had a way of joking, or making lighthearted comments, to relieve but not interfere with a serious atmosphere. This manner had probably developed from childhood, when he was sometimes brought into a serious rescue mission. He had developed a selflessness of service and an awareness of what would lift another person’s spirit to help in coping with major loss.
David’s earnestness in wanting to talk about what things he observed helped me to get through such discussions with fewer breakdowns into uncontrollable sobbing. He was distressed that in addition to the normal things I couldn’t do, my manner and way of speaking had become much altered since he had known me at Carnegie. This observation forced me to admit that I still had to take more frequent breaths because of my weakened abdominal muscles and that I must still be using more head tone than I had pre-polio just to make myself heard. He also noticed the way I moved my head. He demonstrated how I would jerk it up and down, or to one side, rather than moving it smoothly. David and I held practice sessions in which we moved our heads up and down, or from side to side, slowly and smoothly.
Since David had a clearer comparison between Carol BP and Carol AP than anyone else among those close to me, he began to question the path I had taken. He took Martha aside for some private discussions that prompted her to look back at my trajectory since the onset of the polio. One evening at the Köllnerhof, they suggested that the three of us have a glass of wine and a serious talk. We started at the kitchen table, over supper, and during the long talk, moved to the living room where I could sit in the Garten-Sessel.
“Carol, you seem to be having more and more coat-wearing problems,” Martha began. “That just hasn’t seemed to improve and probably has even gotten worse.”
“I don’t have the history that Martha has with all this,” David said, “but I can certainly see that you’ve been having increasing pain and stiffness in your neck and shoulders. At this point it just seems constant!”
Then they looked at each other and back at me. “We’ve been talking about it,” Martha said, with her characteristic frown of concern, “and it’s beginning to look as if you’re not progressing at all anymore. In some ways, you even seem to be going backwards.”
I will never forget that milestone conversation and how Martha and David confronted me as only close friends could have done. Up until that moment, I had managed to pretend to myself that I was making slow-and-steady progress. But when pressed by both of my friends—one with a fresh view, and one who had witnessed all the steps along the way—I couldn’t back it up.
We discussed openly the enormous differences in my personality post-polio and pre-polio. We even talked about my “keep trying” work on the upright piano. I admitted to them both that I was willing to let my body scream at me, or at least moan and groan, to make any kind of progress. But David’s gentle objectivity made me look at the whole and admit that I seemed to have come to a standstill.
“Carol, I think it’s time for you to start looking for some help,” David said, and Martha agreed. We had some more wine and began to discuss a change of direction.
First, I wrote a frank letter to Webster Aitken and his wife, Lilian, a respected physician in New York City. I figured she would have some perspective on my true situation once I presented an accurate picture. T
his time, it would not be my usual fantasy letter describing Vienna’s music scene to my revered former teacher, but rather a communication that would address my current realities.
I told Webster and Lilian that I needed help, and summed up what Martha and David had said. I went on to describe far more honestly my actual condition, which I had been trying to hide, even from my family and myself. I told them that despite all the exercises I had attempted at the keyboard, most movements still felt “incredibly stiff and frozen, even when the muscles are trying—like there are two hundred-pound weights holding back the movement. . . . Some of the sounds (thumps) are conceivably raw material. Aber wohin?” (But where to?)
It was usually Webster who answered my letters. This time it was Lilian, who wrote back almost immediately. Since she was a department head at Bellevue Hospital in New York City, I had assumed that if she made a recommendation, it would be a doctor or a medical group in the United States. But after speaking with some of her colleagues who had up-to-date information about advances in physical medicine and physical therapy, she suggested a consultation with Dr. H. C. A. Lassen, a top specialist at Blegdam Hospital in Copenhagen.
Chapter Nine
Clarity in Copenhagen
Lilian Aitken’s research had ascertained that Dr. H. C. A. Lassen, professor of epidemiology at the University of Copenhagen and chief physician of the Department of Communicable Diseases at Blegdamshospitalet (Blegdam Hospital), was acknowledged in medical circles worldwide as uniquely qualified in the treatment of polio and “post-polio effects.” I had never heard of the term “post-polio effects,” nor had I known there were specialists who treated them.
Lassen and his team had come to international prominence for their quick thinking and innovative treatments during a record polio epidemic in Copenhagen in 1952. The team had refined a treatment for the acute stage of the disease and developed an outstanding physical therapy program. The many patients with lingering post-polio effects from that epidemic, and subsequent outbreaks in Copenhagen, were all treated with loving care by the Blegdam Hospital Physical Therapy Unit under Dr. Lassen’s supervision.
Dr. Lassen himself welcomed me warmly when I arrived in early August of 1958. A tall, composed, kindly, but no-nonsense person, he spoke excellent British-accented English. We discussed various details of my medical history and general background, and he suggested checking me into the hospital for two or three days—partly because I had developed a slight cold on the journey from Vienna and partly to facilitate tests and follow-up. Also, staying in the hospital meant that I could delay looking for a place to live until I’d gone through my entire series of tests.
After we had talked for a while, Lassen brought in another specialist on his team, Dr. Snorrason. They put me through an extensive range of muscle tests, carefully noting neuromuscular responses to a variety of commands such as “push,” “pull,” “hold,” “don’t let me push,” and “don’t let me pull.” It was the most detailed version of such tests that I had ever encountered.
Lassen and Snorrason also noted those places where they found severely over-contracted muscles, called contractures. They explained the side effects of my “keep trying” motto. I had evidently gone into daily emergency mode—an adrenalized effort that had allowed my muscles to perform almost beyond their true capacity for short periods. But since the damaged muscles were too weak to perform like that, my emergency-mode pattern had built up contractures, bringing additional fatigue and pain. This explained my increasingly unhappy “coat-wearing” muscles, for example, since they had clearly developed such contractures. Lassen and Snorrason were describing with eye-opening accuracy my pattern since the acute attack.
Their first objectives, Lassen explained, would be 1) to get me out of emergency mode and 2) to ease the contractures. Only then could any systematic rebuilding and retraining begin. This was familiar territory to them, and they presented it to me in a gentle and reassuring manner. Their whole description made so much sense that for a while I sat there in stunned silence while they explained it all. Then, perhaps predictably, I burst into tears. Thankfully, the Blegdam doctors well understood the emotional side effects of post-polio syndrome and were not taken aback.
By the end of this revelatory discussion, I began to recognize that the treatment would be intensive and extensive, requiring a long-range plan on everyone’s part. I explained that my parents’ insurance policy still included some coverage for post-polio care, but that it would run out in a few months. My mother was planning to be in touch with Dr. Lassen about the treatment and the financial arrangements. He nodded and said he would look forward to communicating with her.
Then he smiled broadly and leaned forward to look straight into my eyes. “We can do things for you here,” he said emphatically, “that your own country will not do for you!” It suddenly dawned on me that Denmark had universal health care—the “socialized medicine” that had become a topic of debate in the United States. He wanted me to know that the cost to my family and me would be something we could handle.
Once I had settled into the hospital room for the evening, I wrote a report to Webster and Lilian Aitken:
Dr. Lassen was expecting me, and expended many kind words to make me feel at home. From the beginning, he had the idea—just from talking with me—that my breathing ability (“vital force,” as he called it) might be defective. So he put me through some breathing tests, and he was right. He said that alone could account for my lack of endurance. This breathing ability or “vital force” affects many things, of course.
We also had a discussion of the steps to be taken. The first step is heat—not the kind they use for bones and joints, which is evidently what I had in Vienna, but the kind they use for muscles—and massage.
The second step will be relaxation exercises—that is, learning the difference between contracting the muscles and relaxing them, and practicing same. That means isolating certain muscles, or groups of muscles, to contract-relax, while trying to keep the others entirely relaxed. They noticed random areas, especially throughout arms and hands, where there is a significant lack of connection between brain and muscle.
They have other exercises we will start once the muscles in the upper back, neck, shoulders, and arms, which have developed contractures, have become relaxed. No one is sure how long that’s going to take.
Toward the end of the letter, I wrote a paragraph especially for Webster:
The Professor suggested that the hospital piano be moved into a basement room in the physical therapy department, where I can use it every day if I wish. Also so that I can show them some of the things I can’t do at the keyboard. They want as complete a picture as possible. Having even these polio experts watch me try to play something at the keyboard instantly raises my fear level, of course. The fear of sitting down at the keyboard again in front of anyone, including you, has been increasing steadily. And of course you’re the only person alive who really knows what I had to work with before. . . .
I explained a few more details to my mother and father:
Lassen is the first doctor who has seemed interested in helping me to overcome the complex weaknesses or defects in the core muscles, shoulders, hands, and arms which keep me from keyboard work. Only after he does everything possible will we know what I can and can’t do. He said that this treatment should go on for about six months.
From my descriptions of the therapy I’ve had so far, he says that none of it was systematic. I had begun to think that no doctor would ever be interested in my special problem when they had life-threatening situations to deal with. But here is the man, supposedly, and he is interested. This could well be the difference between my being able to be a pianist and having to reorient myself. It looks as if this will be an all-out effort in every way.
The next day I met Lise Nybo, whom Lassen had described as the most experienced polio physical therapist on the team. She had twinkling eyes and a wide, expansive grin that turned out to be indicative of
her personality.
It was “Nybo,” as everyone called her, who explained that the first step would be “The Bath”—her amusing name for a good-sized, warm-water spa in the hospital basement. Eventually I would be doing exercises there, but for now I would be soaking and warming up every morning before Nybo began massage and stretching of the contracted muscles.
Nybo had a natural way of creating an atmosphere of ease and relaxation. When we first began working together, I asked her how to pronounce a couple of Danish words. She told me to be prepared to pronounce these words from the back of my throat, with the throat practically closed off. If I persisted, she said jokingly, I should be aware that many Danes had to go for regular speech therapy to alleviate the throat tightness brought on by speaking their own language.
It was easy to laugh with Nybo, and I immediately felt comfortable. She was not only familiar with the polio patient’s struggle to adapt to a post-polio persona, but she was also used to looking at the world from the damaged person’s point of view. And Nybo also knew her patients’ serious, all-day-long physical limitations. She spent her time with people like me, who had to work very hard to do little, everyday things, while they were aching constantly. In our time together, we were aiming to alleviate some of those problems; and it was an enormous relief to be with someone who understood, and could discuss with me, the journey I had taken so far.
With the help of the Blegdam team, I soon found a place to live, about a block and a half from the hospital, on a street called Ryesgade. Mrs. Buttrup, a widow who lived in a comfortable flat with her ten-year-old son, Marcel, was willing to take in a boarder for a few months at a very reasonable price. This would not only include room and board but also easy access to the upright piano in her living room. When I moved in, I found that friends of hers who lived downstairs, the Holm-Jensens, had a grand piano in their living room, which I was also welcome to use. As I wrote to my family: “Suddenly I have three piani available!”
To Play Again Page 12