Chapter 6 Back to Europe

From the U.S.A. we first flew to England to visit my sister. I was extremely excited at the prospect of seeing Katja again, and could hardly wait to get off the plane. However, the procedure of going through customs, with a large amount of luggage and an American green card, with a name like Zvelebil was very time‑consuming.

In the process we left our lluggage on a trolley, with on top of the suitcases one of my dolls sitting in a carry‑cot. The doll looked remarkably like a real baby, and was called  Illya after Illya Kuryagin, the hero of the television series  Man from UNCLE of which I was a great fan. Suddenly a ground‑stewardess rushed to us, and voiced her opinion in no uncertain terms about parents who leave their babies unattended on luggage trolleys. My parents were stupefied before they realized what was going on. The poor stewardess was then in her turn extremely embarrassed when she found out that poor old Illya  (for he was about 10 years old) was just a baby doll. Already, on one earlier occasion during our trip Illya caused a funny escapade. It was on the plane itself; we were sitting in our seats and Illya was deposited on the floor by my mother’s feet, a stewardess came and told us that it was extremely dangerous for children to be on the floor and that it would not cost us anything if we put the baby on the seat. Again we had to explain that Illya was not a real live baby.

At last we got through all the red tape and there was my sister impatiently waiting for us. It was great to see her again. When  out of necessity a larger family becomes separated, like ours of  which more than half the members were left in Czechoslovakia, and we were not sure whether we would see any of them again, then the family that is left together usually becomes very close. Therefore not to see my sister for over a year was very difficult for me.

Back in England we stayed again with our good friends in Oxford. But this time not for long. It did feel nice to be back in Europe again. After a couple of weeks in England we left for Holland where we were met by my godparents, who managed to get out just after the Soviet occupation, and now lived in Holland. My father would be starting a job at the University in Leiden, but first he had  a teaching appointment at the College de France. So we didn’t stay in Holland for long and moved on to France. From the first visit to our next country of residence my main impression was of green flat meadows and a very large amount of cows.

Paris, what a beautiful city! I liked it straight away.  We however lived in Versailles. We were renting an apartment from an old aristocratic family, whose son Philippe became my friend. We were living not far off from the famous gardens and often took a walk there, well, I was wheeled around, for I could not walk at all any more. In Paris it was decided that I would undergo radiation treatment at the Institute Curie; this has very probably saved my life. My doctor there was Professor Ennuyer, which translates roughly as boring, but he was all but that. He was an elderly Monsieur, very gentle and caring, although adamant about any treatment regardless of my protestations. I was still in much pain and hated anyone touching my back, which however, had to be done. The radiation itself was not painful, but the marking of where it was supposed to occur was   extremely agonising. I also hated the three times weekly blood tests that had to be done to check my white blood cell count which can diminish rapidly with radiation treatment. I was under very strong pain killer since my operation and that might account for a very strange phenomenon that happened to me while we were living in that old aristocratic house in Versailles.

At that time it was my mother’s custom to look in on me a number of times during the night. I had a bed‑side lamp burning with a soft glow all night. One night I went to sleep as usual. I did wake up frequently during those nights for I had to sit up to turn on to my other side, as I could in no way roll over on my painful back. I woke up and there in the corner of the room stood a lady dressed in white and blue gowns.  She then started slowly to walk over to me. I thought at first it was my mother in my sleep‑confused brain, as she approached my bed, I said “mummy” and stuck out my hand to touch hers. My hand went straight through hers. I was then fully awake and screamed very loudly, the Lady disappeared slowly, and my mother came rushing in.

It could have been a hallucination due to my drugs; or a ghost, perhaps Marie‑Antoinette, who knows; but I can remember it very clearly to this day, every feature of this lady is engraved into my memory.

Apart from the radiation and the finger pricking for blood tests, the stay in France was very pleasant, although my general situation did not improve; on the contrary, the radiation therapy made me generally physically weaker. One of the nicest things I remember from our stay in Versailles was the fact that first my maternal and then my paternal grand mother was allowed to visit us. It was a happy reunion, mixed with sadness, as were all such        reunions, for we never knew whether it would be the last time we  would see them, whether they would be allowed out again. I well remember the astonishment and delight of both my grandmothers when we went food shopping at the local markets, where everything was available, everything was fresh and in great quantities. And anybody was allowed to buy it! We enjoyed eating the wonderful meals my grandmother enjoyed cooking with all the available ingredients. We continued to take walks in the Versailles gardens but I was now even too weak to sit all the way and I had to have a wheelchair of which the back could collapse so that I could lie down. I hated it, I hated the feeling of weakness, of having to depend on others even in the performance of the most mundane of things. I could not get a book, I could not go and switch the light on or off as I pleased, I could not get myself a drink, I could not go out and play. I had to ask for all these things to be done for me or brought to me and as I used to get bored easily, the ‘Mummy’ or ‘Babicko’ (Czech for grandmother) calls were very frequent. And all and sundry were also getting fed up of waiting on me hand and foot. But there was nothing else that could be done, I needed more or less constant attention and could never be left totally alone. I remember when later I started being able to move around the joy of having the strength to put the TV on or to be able to get my own book. Little things that we do and never realize what kind of freedom it actually is to be able to do things for ourselves. Even today, I experience on occasions a fleeting moment of great happiness and a sense of freedom when I do some small task and actually think about the fact that I can do it.

We were in Versailles during the month of July and on the 14th of July there were great celebrations (Bastille day), and I was allowed to stay up and watch the fireworks from our balcony. The fireworks, which were set in the actual Versailles gardens, were indeed magnificent.

When my father finished his lecturing at the College we returned to Holland, but my mother and I had to go over to France to finish my second course of radiation. This time we lived with very good friends of my mother’s in Paris itself. On this trip I learned to play Monopoly in French. Towards the end of my radiation  course, I began to get a bit better, and one day, when I and my  parents were waiting to hear the medical results of the radiation therapy, I sat on the bench and unconsciously, in boredom, started to  swing both my legs. Doctor Ennuyer noticed it immediately and he and both my parents became very excited. It was then pointed out to me why.

I felt an incredible sensation of relief, joy and bafflement. I was able to move my legs again, and I could feel the right leg. The other leg I could now move a bit according to my will but could not feel at all. Professor Ennuyer, decided that this was indeed a cause for celebration, and immediately ordered and opened a bottle of Champagne. I also got some, although just a bit this time. It was indeed a very French way to end what seemed a successful radiation treatment. Of course, the usual course of five years had to pass before it would be certain whether the tumour would not reappear. To be absolutely certain that all the tumour was removed I would have to have undergone another arteriography test. But I nearly went into hysterics at the simple mention of that test and thank god my parents refused to let me undergo another one. I never have had that test again.

There still remained, however, many serious health problems. There was the problem of my kidney function. Another problem was the continually worsening posture of my spine; I was developing a rapidly increasing kyphoscoliosis. With these problems we left Paris and returned to Holland. I had now also to restart my education, which had suffered considerably.

In Holland we lived in a rented flat in a place called Wassenaar, which is situated on the coast of the North Sea between The Hague and Leiden. It was called the Beverley Hills of Holland for very rich Dutch people lived in its old part and around the village. We lived, however, in the new part, in a Dutch council flat.

       My parents were persuaded by doctors and friends to enrol me in a school for physically handicapped children in Leiden. This was the worst thing that could have happened to me as it had long lasting detrimental effects. Although the school had no mentally handicapped children many of the children there had problems learning but others had none. However, there was no emphasis on the academic side of education. I was put into the first class of the elementary  school because I did not  speak Dutch. I was ten years of age! I was of course extremely bored in that class, as apart from Dutch there was nothing new I was learning. I was therefore very unhappy. In the end, after many discussions between the teachers and my parents, I was promoted to the third class elementary school. But even there much more emphasis was given to teach the kids some kind of a trade, rather than to encourage them to develop the one thing that was not disabled; their mind! The school was very good in providing physiotherapy and teaching children to get about, but again there was no encouragement to learn to lead a normal life, and there were many children with slight disabilities who would have absolutely no problem in leading a completely normal and fully functional life. Of course there were children in the school, too, who could never live without some kind of help and attention, there were also sadly children in the school who got progressively worse and in the end one day would not come back to school any more. I remember a boy who when he first came to the school seemed quite healthy. He was about seven years old, a very nice looking boy, with eyes that used to sparkle with laughter and thick blond hair that used to fall over his forehead when he would race round the school grounds on a large tricycle. I cannot remember his name, now, but we were quite good friends despite our age difference. Then, it went all so quickly; he did not race on his  tricycle any more, he now used a wheel‑chair to race round the school corridors, then he did not race any more, then he had to be helped to eat and drink and then he did not come to school one day . My physiotherapist informed me of his death soon afterwards. But always through out all the time I knew him, he would laugh and make jokes and seemed to enjoy each and every day.

I hated this school, I wanted to get away. I used to think up all kinds of excuses to not to have to get into the minibus that would pick me up at home and take me to the school. I would pretend I was ill, I would say that my back hurt, anything not to have to make that bus ride and not to have to go to that horrible place! In the end my parents were persuaded to let me try a normal local elementary school, as my education was seriously lacking behind. I remember my last day at the school for the handicapped. I felt like I won a major battle, at last I was getting out of that ‘prison’! The head of the school, and my previous teacher, were very much against me leaving, saying that I would not be able to cope either with the academic and physical requirements of a normal school. And that I would be back. Yes I did come back, once, to say hello, after I finished my undergraduate studies at Sussex! However, I did at that time share some of his doubts, but wild horses would not have been able to drag me back to that school. I was very excited but also apprehensive on my first day at the new school, which was located just a few streets from our house in Wassenaar, and so I was able to wheel myself in the wheelchair there and back. What freedom I could go to school all by myself. I was put into the sixth and final class of the elementary school at the age of 14. So I was already much older than the other children. But neither that nor my disability seemed to matter. I was accepted, I could easily keep up with the work, and I tried my best to keep up with the sports. I tried and was allowed to try everything.

        For our gymnastics we had to go to the local sports centre. Everyone went on their bikes; at that time I was still in the wheelchair and could not ride a bike. So I used to sit on the back of someone’s bike (a normal practice in Holland) and was thus transported to the gym. There I could walk the short distance on my crutches and then participate in all possible sports in my own way and time. But I would join in all the games, as a goal keeper for example, as I could not run. And I would indeed put all my effort into being as good as the others. I think that this is so extremely important in anyone’s life; to be able to compete with those who are better. I enjoyed it and it gave me a will to live on. To show that I could do it as well and the incredible satisfaction that one felt when one managed to do as well or better than the others. I feel sorry that many people are still denied this experience. I truly believe that disabled people have to compete with able‑bodied people to gain self‑respect and confidence in themselves. In other words scrap the para-olympics, have only one Olympics for everyone You could be surprised.

I enjoyed that year of school very much, and had no difficulties in keeping up with the work as well as the play. That I had to be in a wheelchair caused no problems for me to be integrated in the way of things. After school I would make my way to, until this day, my best friend Ellis. We were friends for already three years and she has had a great deal of influence in my life. She was, for example, partly responsible for my decision to go to a normal school. She helped me to exit my cocoon, my shell  against the outside world that I had spun around me during the last two years of my illness and my years at the school for the disabled children. She sparked off the ridiculous and the mischievous in me. From very early on in our friendship I fulfilled my mothers wish for me; to be naughty sometimes. Before I met Ellis I would be usually in the company of adults as I had no inclination to be with children of my age, I especially had no energy to play with them. I was in too much pain all the time to really care. I loved reading or just sitting in the sun doing nothing. Ellis, slowly, made me do things, because for her the words ‘impossible to do’ did not exist. This is now my motto; nothing is impossible as long as you want to do it enough. I hope that many people, especially if they are in some way disabled, would think a bit about these words. I do realize that there are limits to everything, but to the individual persons best ability and a just bit above their ability try and do what you want to do! The physical efforts that I had to do to keep up with my friend Ellis, were better for me than all physiotherapy put together, than all medical help I could have had. She forced me to forget my pain, to stop feeling that I could not do anything, to stop totally relying on others to do things for me. She would tell me off when I used to call my mother to get us something to drink or to eat; she would say “stop bothering your mum, I’ll get it, or better still you go and get it!” So I would make the effort, and as I could not walk, I would crawl to the stairs, make my way down the stairs on my backside, one step at a time, then crawl back up the stairs with two glasses of cola. I would first put each glass on the next step one by one, then hoist myself up to the next step and repeat this till I got to the top. There Ellis would take the glasses from me. Quickly I got very handy at doing things without being able to walk. All this exercise made me very tired, but it made me stronger, it made me feel better mentally and I started having less pain.

        Ellis and I were horrors when we got together. We would generally play at being spies, and our secret club was called MASH. We made up horrible documents which stated that if one us betrayed the Society the deed was to be punished by death. This was duly signed in blood. Much later when I could ride a bike we would choose some unsuspecting stranger and follow him to his home, and later try and find out information about him from the phone book. I was ” Hawkeye” from MASH and Ellis was “Pepper” from a police series by the same name.

When I met Ellis I was still in a wheelchair, and I could not walk at all. Inside the house I would crawl around. And I remember my knees would get very sore. However, later Ellis and I developed a game where we would have to crawl around the house without touching the floor, over furniture and hanging onto anything that would take our weight and on occasion that would not take our weight to the anger of our respective parents.

Our first holiday we went on since we had arrived in Holland was to Switzerland. We hired a little flat in the town of Engleberg. The night we arrived there in our new Skoda car, I slept better then I had done for very many years. The fresh Alpine air worked wonders for me.

Very unfortunately, though, the Swiss were drilling the road just outside one of our windows, and that used to wake us up very early every morning.

Apart from the Swiss who I found out were not very friendly, Switzerland has a special place in my  life for it was in the Swiss Alps that after three years of not being able to walk at all I took the first steps, with the help of my crutches. I made three magnificent steps, and then I had to sit down again. The first three movements to my way of freedom. I have this event and the date marked in big red letters in the first diary I ever kept. It was August 1971. It would still be a very long time before I could walk more than three steps at a time, but it was a beginning. The other beautiful thing was that my father and brother found an Edelweiss flower for me. Ever since I saw ‘The Sound of Music’ I fell in love with this little flower. I had this particular Edelweiss, conserved between plastic sheets and stuck in my diary until many years later it was stolen from my car in London. I loved the Alps and was not too happy to return to flat Holland and the horrible school for the disabled.

Meanwhile, although the strength in my legs and generally my health was improving, my back was getting increasingly worse.  The Professor of orthopedics who treated me in Holland (in Leiden) was an over‑cautious man. He was not very prone to action if my actual life was not endangered. And although my kyphoscoliosis was worsening, he would not put me into any correcting‑aparatus or take any other preventive measure.

I was too young then to realize what was actually happening, and too tired and my back too painful to want anyone to touch it let alone to have to wear any corsets, to really care. My mother was the only one who could see where it would all lead to, and she tried to  force me to exercise and to stretch my back. This usually led to  screaming fits on my part and my mother shouting at me that I would later on in my life regret not to have done the exercises. How true that was! But even my mother’s energy had an end and I would be left alone after some time. My mother tried to persuade my orthopaedist to  send me to special camps run, for example, in France for patients with spinal problems, but he was too stubborn and too proud to let someone else have a try. To let someone else do what he did not dare to do. Even if nothing had not worked only if it just had been tried I would feel better now. Even had I died in the process I believe that something should have been attempted, for to be sentenced to a life with such a curvature of the spine as I suffer from, is not fair to anyone. A young woman does not want to go around with a hunchbacked back, does not want people to stare and children to point and laugh!

Often when that happened I wished I would be dead. And slowly over the years as I got older, and my friends started going out with girl‑ or boyfriends, my awareness of physical beauty developed and started to matter, my hate for my Dutch orthopaedist increased.

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9 Comments (+add yours?)

  1. marcatmm
    Jan 06, 2012 @ 04:28:51

    In the first pic, you remind me so much of Katherine Hepburn and her always regal air! Lovely!

    Reply

  2. Ellis
    Jan 06, 2012 @ 09:24:40

    I really enjoy reading this stories although there’s nothing there you didn’t already tell me yourself long ago. I know all the scenes so well as if they were part of my own life (and in a way they are). As a grown up I do now fully understand your urge of playing all those hospital scenes with our barbie dolls. Together we had a couple of magnicificent years being the kids we were and having found each other. I still don’t know: did you find me, or did I find you?

    Reply

  3. Ellis
    Jan 06, 2012 @ 10:34:51

    Yeah… totally different story! Heheheh 🙂
    I remember both of us falling off whilst making too sharp a turn going much too fast.

    Reply

  4. annepetzer
    Jan 28, 2012 @ 17:36:42

    You are so phtogenic Marketa 🙂

    Reply

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