Memoir ~ Henriette von Trapp ~ Chapter Two
The Memoir of a Survivor
by
Henriette von Trapp (1927-2013)
edited with an introduction by
Paul M. Levitt
Narrated by Kelly Riordan
Published by LeRoy Chatfield
2021
Chapter Two
Polio Hits Home
Two days after my return from the hospital, I woke up feeling under the weather. I ascribed it to over exertion the previous day, and proceeded to care for Monique, George, and our home. As the day progressed, I felt more and more tired and my neck felt stiff. I figured I had probably strained it ironing the day before and I convinced myself that there was nothing seriously wrong. By nightfall, I had a fever, and by ten o’clock that night, Rupert was alarmed enough to ask a doctor from Fall River to examine me. He diagnosed a virus and tried to allay our fears. I passed a miserable night, getting up with great difficulty to feed the baby, and by morning I was horribly dizzy. Rupert felt I had to go back to the hospital for more extensive tests, and called for the local ambulance, a glorified station wagon. I insisted on walking down the front stairs into the ambulance. Little did I realize that it would be thirteen months before I returned home, and that I would never walk again. The day: September 17th, my second wedding anniversary.
With the hospital full, I was put in a room in the maternity section and a spinal tap performed. My dizziness increased; the diagnosis was meningitis. In the evening, I was moved to a makeshift room on the second floor, a sun parlor, where I had no buzzer to call for a nurse. I spent the most horrible night of my life, so dizzy that I thought I was falling out of bed. The following day, to relieve the extreme pressure on the brain and to verify the diagnosis another spinal tap was done. Again, the verdict was meningitis.
Moved to a third room, I faced a stream of doctors concerned I was not improving. That night, Rupert hired a private nurse to stay with me. The next morning, my sister Marie-Claire, beginning her nursing training, sat with me for a half-hour and managed to understand what I was mumbling: “My legs are heavy, I can’t move them.” She was alarmed because polio had been rampant that summer; there still was no vaccine. In fact, Rupert had treated a 13-year-old girl with polio just about three weeks before. One can be a carrier without contracting the disease. Being pregnant at the time, I was extremely vulnerable. Claire went to find Rupert. When I was finally diagnosed with polio and the staff realized that I, to say nothing of Rupert, had been carrying the germ throughout the hospital, all hell broke loose.
By afternoon, my intercostal muscles were becoming involved and my breathing deteriorating. An iron lung was an immediate necessity. The closest place with a functioning iron lung, however, was Chapin Hospital in Providence, which treated contagious diseases. An ambulance was quickly summoned, and as I was being put into it, my father’s face appeared at the window. I heard him say, as he sadly shook his head, “I cannot take anymore, I cannot take anymore.” He had a daughter dying of leukemia and now one with polio who might not survive.
I barely remember the trip to Providence. Rupert and my nurse rode in the ambulance with me. I am sure it must have been a nightmare for Rupert. The minute we arrived, I was put into the iron lung and given the last rites of the Catholic Church. All that was left to do was to hope and pray. The next two weeks are a blur in my memory. I constantly ran a high fever, which was not good as it meant the polio virus was still very actively doing damage. All I remember is that I cried constantly. Can one possibly imagine what it is like to be 22 years old, happily married with two babies, and a rather bright future ahead, to suddenly find yourself unable to move a muscle or breathe without a machine? I cannot find the words to describe the horror of that experience. In a large room alone with a student nurse in attendance at all times, I did not see another patient for the six weeks I remained in the iron lung.
Until a year later, I did not know that my ten-day-old baby, Monique, had been a patient in the floor above me for two weeks because she had also contracted polio. In order to avoid a slip by one of the nurses, she was called baby T. No one knew her full name.
Thank God she did not experience as much involvement as her mother, but enough to greatly affect her ability to walk.
When you are in an iron lung, you can see your visitors through a mirror above your head, not a terribly pleasant way to communicate. When I had company, all I could do was cry. The horrible doctors complained to my husband that I would never recover because my morale was so low. But they did absolutely nothing to help. I never had hot packs, which would have relieved the excruciating muscle spasms, because they could not be applied inside the lung. I was never given pain pills because at that hospital, unlike in Boston, they felt it was detrimental. I don’t remember being washed; they never combed my long hair, which had become completely matted with the cotton batting around my neck.
Polio affects only the motor nerves; the sensory nerves become more sensitive and to this day I am hyper-sensitive. At first, I could not even bear the weight of a sheet on my body. Fortunately, it was a warm September so I was not cold. I lay on a wool blanket to prevent bed sores. How I itched! The nurses spent most of their time trying to scratch my back with back scratchers through the portholes.
After a few weeks of this misery, the doctors thought that my intercostal muscles were flickering, a good sign. Maybe I would eventually be able to breathe on my own. In 1949, rocking beds did not exist so you had no help with the transition to living outside a machine. Every day, they would open the lung, and each day I would try to stay out longer. I reached four hours but could not go beyond that. There was a regular bed in the room, and thinking it would help me to try harder, I begged them to transfer me to the bed. They refused, saying I had to stay out for four days, lying on that narrow slab with my head still in the casing, before they would bother to completely remove me from the lung.
I was at a standstill, no treatment was being done. Rupert consulted with his colleagues in Fall River. The iron lung at the Fall River Contagious Hospital had been repaired. So, in early November, Rupert transferred me there. In fact, the Fall River Hospital was gradually being phased out. I was the only patient in a 40-bed facility, staffed with a skeletal crew. This state of affairs did not help my spirit. The move to Fall River, though, did make it easier for my family to visit. At the onset of my illness, Rupert would visit twice a day, all the way from Adamsville. A local physician and good friend offered to take on Rupert’s evening hours. But after two weeks, Rupert felt the need to be on call and he limited his visits to noontime. My parents came in the evening, and my mother trying to raise my spirits would constantly repeat, “Henriette, the day will come when you will never even think of this terrible time.” I raged at her insensitivity. How could I ever forget this agony? Do you know, she was absolutely right. I have gone years without ever giving it a thought.
By the time I reached Fall River, I was able to remain out of the lung all day, but I never fell asleep. I was convinced that if I slept, I would stop breathing. I felt I had to make a conscious effort to breathe. I was under the care of a local orthopedic doctor. His wife had had polio, but without paralysis. Like leukemia, there are different kinds of polio, non-paralytic and the kind I contracted. Thank God, most victims contracted the former and recovered without any residual effects. This doctor really did not know how to treat severe cases, especially how to stretch the atrophied muscles resulting from paralysis and weeks of inactivity. Every two or three days, he would visit, and put me through agony as he tried to move me. I would lie in fear of his visit, listening to the cars stopping by my window. One day, he decided it was time to sit me in a chair. I could not breathe. The doctor left in disgust, blaming me for not trying. Weeks later, when I was transferred to Lakeville hospital, I discovered the right method to do things. Polio patients do not sit up until they are fitted with a corset, because their abdominal muscles have been paralyzed. The stretching of muscles is done in such a way that it does not hurt. You are put into a Hubbard tank and the hot water does a lot to loosen you up. Hot packs are also applied. But I am getting ahead of myself.
I could not be transferred to Lakeville, which was a rehabilitation hospital for polio victims, a Warm Springs without the glamour, until I was completely weaned of the lung. There were just two lungs there and they were both in use at night, the same time I needed the mechanical support. So, I had to be made to sleep without it. For three days, during the day, they gave me a sleeping pill. Finally, I knew I had slept when I had a dream. The next night they did not put me in the lung, and I managed, after several hours, to fall asleep. I was on my way to Lakeville. At this juncture, I was able to hold a book to read, and I was starting to feed myself, obviously some motion was coming back in my upper torso.
On December 8, the feast of the Immaculate Conception, I was moved to Lakeville, in the company of other polio patients, 50 in fact, ranging in age from 5 years to 50, 25 men and 25 women. To my astonishment, they laughed. Overnight, I stopped crying and I have never cried again because of the polio.
By the end of January, the doctors realized that I was not making much progress with sitting up. As soon as I was elevated, I could not breathe. They had to convince me to return to the iron lung an hour a day to enable my intercostal muscles to rest and improve. I had had such a difficult time weaning myself off the lung that it took a lot of talking to make me agree. They would put me in the lung at 11:00 a.m. In the noisy treatment room where the lungs were kept, I would immediately fall asleep for the entire hour. After one month of this therapy, my breathing improved markedly and with the help of a corset, I was finally able to sit up. This enabled me to spend most of the day in the female ward and, in good weather, on a sort of terrace. My gluteal muscles, or rear end, were still so tight that at first, I lasted only 15 minutes in the chair and then begged to go back to bed. Hot packs had to be applied, and gradually I could spend all day in the wheelchair.
The ridiculous regulations prohibited my going home for any length of time, even though I lived not far away, and small children were not allowed to visit. Consequently, I never saw my children for nine months, a cruel separation. One Sunday, Rupert decided to break the rule and sneak me out through a back path. We felt like criminals. In fact, we got caught and even though Rupert was a physician, we were severely admonished by the administrator. I thought: what harm could it do and how it would have boosted my outlook.
By the end of August, it was obvious that I would never walk again; the quadriceps in both legs, which are essential to walking, failed to improve and I was fitted for full-length braces and taught to use them. However, my upper torso, neck, back, and arms were so weak that I was never able to walk successfully with them or run my household, because my balance when standing was extremely precarious and my arms were busy holding the crutches. Just as I was about to return to my home after 12 long months, I caught a cold which developed into a pneumonia and pleurisy. Given that my breathing and my ability to cough were far from normal, I remained in the hospital.
In early October, I returned to Adamsville to learn how to manage my life with what I had left. It was going to be a grueling task, as my whole body was involved, but I was determined to live a good life, as normal as I possibly could. At this stage, Rupert was entirely supportive. The mistake he made, and I was probably partially to blame, was to discontinue totally any sort of treatment. From the day I left Lakeville, I never saw a physiotherapist again. I felt that they had done what they could during a whole year and now it was up to me to cope. Rupert was busy with a growing practice and found it too complicated to get me to therapy; therefore, I did not insist.
When I first came home, I concentrated on becoming reacquainted with George and discovering this new baby that I had left when she was ten days old. I noticed the odd way that Monique lifted her legs and wondered why she did not walk yet or even crawl. I finally asked so many questions that they had to tell me the truth: she had had polio. I was devastated. The thought that I had two healthy babies had kept me going for months, and I now had to accept the fact that my beautiful Monique would be handicapped like her mother. It really was a terrible blow. She had to learn to walk with tiny crutches, an effort that took a year. But her sunny disposition and gorgeous smile and determination never failed her. She was and still is a trouper.
On my own, helped only by a Haitian assistant, Julia, I found each day I was able to assume more of the chores of the household and care for the children. I did most of the cooking and washed dishes (we still did not have a dishwasher), and ironed Rupert’s shirts. It was not so much that the muscles improved or came back, I somehow found a way to do things in a different way with what I had. Busy and happy to be a wife and mother again, I became pregnant a year after my return home. It was very important for my psychological well-being that I could have children; it made me feel that I was a whole woman despite my severe handicaps. I knew I could care for them and, since I was always home, I needed to be busy. All went well until Christmas Eve, at Midnight Mass. I was in my third month and began to bleed. The next morning, we called the obstetrician who ordered bed rest. We had to cancel our planned Christmas dinner at my mother’s. My older sisters, who had devoted two years of their lives to help me function again, were not happy and they categorically let me know. I decided then that I had to be independent. I did not remain in bed as ordered—Julia could not manage without my help—and a week later I miscarried. Psychologically it was bad because I was convinced that it was due to the polio. I had never had trouble before with any pregnancy.
The future proved me wrong as I did have four more children, in spite of my handicap. Daily, I became more independent, eventually taking on the bookkeeping for Rupert’s practice. He bought me a portable Smith Corona which I used to send the monthly bills. It gave me enormous pleasure to participate in his life. The greatest problem was shopping for groceries and running errands, like buying clothes and household necessities. Rupert really had no time for such things, but there was no one else. Julia did not drive and the day that I once again got behind the wheel had not yet arrived. It was very difficult to have others grocery shop for me. They always seemed to buy the wrong brand or the wrong size. At such times, my frustration surfaced. and I would raise my voice at my poor husband, losing my temper and using expletives, but the bad moods never lasted long. There was no denying, however, that life was full of frustrations. Try looking at a crooked picture frame and not be able to straighten it; try sitting under the apple trees in Vermont and getting caught in a downpour unable to extricate yourself; try preventing your baby from falling out of her wicker basket and falling on top of her while trying to help her; try replacing a burnt light bulb or opening a window when it is hot or close or climbing into the bathtub. Twenty-four years would pass before I finally had a shower that I could use by myself. These conditions lessened my happiness and congeniality, but I kept reminding myself that no one, not even your own children, wants to keep company with a grouch.
We started taking our yearly family vacation at the Trapp Lodge in Stowe. As soon as school was out, we headed north for a week. The children enjoyed everything the Lodge had to offer: the horses, the extensive woodland paths for hikes, and in later years the lovely swimming pool where they swam for hours, and the folk dancing on Saturday night. I enjoyed not having to cook for a week and looking at the gorgeous scenery. Of course, this was the old Lodge, before the fire of 1980, when there were rooms for only 50 guests and the tempo was much slower. Although my mother-in-law was sometimes difficult—she insisted that the children all take naps, no matter what age they were—I was as stubborn as she. And since I preferred an early bedtime to free hours in the afternoon, we did things my way.
Rupert and I would take a vacation, just the two of us, in October. We traveled up and down the east coast, using motels, even visiting Washington, D.C., where he pulled me up the Capitol steps in my wheelchair. One year, we went to Nova Scotia to view the 40-foot tides in the Bay of Fundi. But the best vacation of all was the trip to St. John’s in the Caribbean where we stayed at Caneel Bay. In 1968, it cost $45.00 a day; but we could afford only four days of heaven. I never did go again.
The major obstacle on these trips was the inevitable narrow bathroom doorway that could not accommodate a wheelchair. I always had to wait to relieve myself until Rupert had checked in and helped me out of the car. We did not discover the existence of reducing gear, a marvelous gadget that reduces the width of a wheelchair, until our trip to Europe in 1971 when a Vietnam veteran flying in the same plane told us about it. For all future trips, it made a big difference.
During those years, in fact for 22 years, I felt we could go anywhere as nothing seemed to faze Rupert. Once when we were interviewed by the Providence Journal in conjunction with a campaign to promote the newly discovered polio vaccine, I remarked to the journalist: “With Rupert’s help, I can do anything.” How sad to think that all that changed. In the spring of 1952, about three months after my miscarriage, I became pregnant again. I spent nine months worrying that my baby would be born with all sorts of handicaps. How could a wreck like me produce a perfect baby? Well, Elizabeth, nicknamed Tizzy by her siblings, was born January 29, 1953, a beautiful, normal baby, although somewhat prone to colic, probably as a result of my useless worrying. I did not have a difficult pregnancy because I used from the outset a Spencer Maternity garment; this support took the place of my non-existent abdominal muscles. As the uterus was never affected by the polio, I was able to deliver normally, though I must admit that towards the end, bending over to pick up the children’s toys became an impossibility and Rupert had to elevate the head of the bed to help with my breathing.
To wheel my chair and not drop my babies, I invented, with the help of an employee at E. F. Mahady’s, a big medical supply house, a panel made of the same fabric as the upholstery of the wheelchair, to which I attached hooks that clasped onto the front section of the armrests, thus closing up my lap. When small, the babies could lie safely on the panel, and when older, sit up and lean against it. Freeing my arms for wheeling, it worked beautifully for all four babies.
Just before Tizzy’s birth, Rupert and I realized we were running out of space on the first floor. His office took up three of the rooms, so we had only three to actually live in: a living room, a kitchen, and a combination family room and bedroom. It was ridiculous to add on when there were five unused rooms upstairs. The answer lay in our discovering a way for me to reach them. We inquired into installing an elevator, and luckily found a kind man who happened to know of a 10-year-old home elevator that was on sale for $700, including installation. So, we became proud owners of an elevator. You cannot imagine my joy at seeing the upstairs for the first time in three years; nothing had changed. Forty-four years later, the elevator is still in use. Someone recently told me it belongs in the Smithsonian.
At long last, I was able to put my children to bed myself and read them a story as they drifted off to sleep. Having had the elevator installed in what was then the waiting room for Rupert’s patients, I would come wheeling in, preceded by the children in pajamas, squeaky clean after their baths; then we would all pile into the elevator and rise to the second floor. The patients loved it. Although this elevator made a tremendous difference in my life, my poor mother did not see it that way. She refused to accept the fact that I would never walk again, perhaps because many well-meaning but unenlightened people told her that they knew many paraplegics who eventually walked after having crawled on their hands and knees. They did not realize that paralysis owing to polio is different from paralysis resulting from spinal cord injuries. I lacked the muscle power in my arms and upper torso even to crawl. Sad to say, my mother unwittingly gave the impression to her friends that I was lazy and content to sit in my chair. How far from the truth! She felt that with the elevator, I had lost the will to persevere. It hurt me that she believed this, but who can blame her? What I dreaded most was the children being sick. I just couldn’t cope when they struggled to take their medicine or had a stomach upset. Fearful of what would happen if my children contracted a serious illness, I had Rupert give them antibiotics at the first sign of a cold.
Because I was attending all my children from a wheelchair—the fourth, Christopher was born March 24, 1955—I sought help. But after a succession of live-in maids failed to work out, Rupert and I decided that with a few gadgets, such as a dishwasher, a clothes dryer, and a garbage disposal, I could manage. But to acquire these conveniences, we had to make room for them. The old kitchen was impractical and too small. I really needed one adapted to my needs, for example a lower cooking stove and oven. Why I never scalded myself all those years, I will never know. I also needed my cupboards lowered so I could reach my dishes. We therefore added on to our house a beautiful kitchen—my polio kitchen, as I called it—including a playroom-study room above for the children. The old kitchen we renovated into a lovely dining room, even restoring the original wainscotting. I was now virtually self-sufficient.
Life was good, the children were growing, and Rupert’s practice kept him very busy. But there was also a downside: he had very little time for his family. Sundays were especially difficult. I would stare out the kitchen window, looking for his car, hoping against hope he would return from his hospital rounds soon enough to allow us a little diversion with the children. But that seldom happened. It would be almost dinner time by the time he arrived, much too late for anything other than his taking a nap on the couch while I prepared dinner.
How many times I repeated: “Having polio and being a doctor’s wife are a bad combination.” Rupert’s practice was a seven-day a week job because he did not belong to a group and thus never had any sort of reciprocal coverage. He was also a very dedicated physician. His wife and children definitely took a back seat. I am sure it was during those years that George decided he would never follow in his father’s footsteps. How many times he would wait for Rupert to come home of a Sunday to play a game with him, checkers or chess or monopoly, only to cry tears of frustration when it was too late, or his father was too tired or tied up in the office with a patient or called away on a house call. My heart ached for him. I felt the same pain and frustration. That is why the three weeks of vacation he finally took in June, part of which we spent in Vermont, were so important to me. The children finally had a father and I a husband. I used to say: “I can’t wait till he retires.” Little did I know that that would never happen the way I envisioned it.
Even though I had a 12-room house to maintain, children to care for, and bookkeeping to do, I was becoming bored. As I never left the house much, and as the children were becoming more help and self-sufficient, I really had too much time on my hands. I therefore decided to have another baby, my one and only planned pregnancy. Stephanie was born July 15, 1959, a beautiful, blue-eyed child. But still the boredom persisted. So when Steffie was about two years old, I decided it was time to do something drastic to improve the quality of my life. I could not continue to have babies to relieve my boredom. The problem was that I never left the house. I had to find a way to get around without Rupert’s assistance; in short, I had to find a way to drive a car again. Lately, I had realized that I had enough strength in my legs to drive a car with power brakes and power steering and, of course, automatic drive. I never gave a thought to hand controls. Either I did not know about them or they did not exist at the time. When I sat by the hour in various driveways waiting for Rupert to complete a house call, I would slide into the driver’s seat and test myself, convinced that I could do it. The greatest hurdle, however, was my getting into the car without being lifted in by a man. My feeling was that if I needed a man to help me into the car, then he might as well drive. I had to find a way. With my upper torso and arms so weak, transferring with a board was not an option. When I was ready to maneuver into bed, Rupert would have me stand and I had just enough strength in my knees to pivot around on the stronger left leg and sit on the edge of the bed. I gradually convinced myself that I could do the same to get into a car. One day, even though I had a mortal fear of falling, I worked up the courage to grab the car door, stand, and pivot into it. My elation was unbounded. I felt as though I had climbed Mount Everest. Now, I had to convince Rupert to take me out on the road to test my driving. After my waiting several weeks, one Sunday he drove me to Route 88 that leads to Horseneck Beach, which in January is virtually deserted. I slid into the driver’s seat and after more than 13 years, I drove again. When we returned, I felt intoxicated, euphoric. Perhaps twice more I went out to practice, then one of Rupert’s patients, a good friend, the Registrar of Motor Vehicles for Rhode Island, came himself to test me. He had me drive to the beach and turn around in an empty parking lot. A few days later, he presented me with my driver’s license, saying that no action of his had ever given him more pleasure.