1 Introduction

This blog or story if you like, is going to be about a little Czech girl, who started life protesting against communism, becoming ill and disabled, becoming a refugee, moving from one country to another but in the end finding a home, only to be emotionally torn, as an adult, when the Prague spring liberated her country and she could suddenly return. Who was she then? Where did she belong?

This is a true story, both funny and sad at times. Both a story and a reflection at times. I hope you will read it and feel free to comment.

The first part are the early years, from baby to end of education.

Please note that the latest chapter is first in the list, while the first chapter is last in the list. So if you want to start at the beginning, you have to scroll down to the start. when all chapters will be published I will change the order.

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Chapter 11 Sussex

There are three main occurrences that in my later years have influenced my life enormously. All in a positive way and all have contributed to me not feeling so inadequate, so helpless, so ugly and a “mistake” that should have been eradicated the moment that my disability started to take form. There were times that I could not see myself going on, times when the fact that I was going to die, and that all this would end made me feel happy. These feeling were most apparent at the time I left home to go to Oxford and reached a peak when I was in Sussex during the studies for my first degree.

I have written about the years at Oxford and they were, most of the time very happy, but sometimes dark moods would overtake me and then I would go out for long drives, miss classes and be no fun to be with. Fortunately, my teachers and friends were very understanding and helpful. But as I grew older and more aware of my physical ‘difference’ from other people, especially when it came to having a loving relationship, it became more and more difficult to live with the fact that I  could not do all the things able bodied people can, and that I had a large ( to my eyes truly gross) deformity of my spine. My protected years at Oxford ended, and my next step in life was that of an undergraduate student in Sussex.

Sussex didn’t start well and neither did it end very well, after three very turbulent years of my life there. I had to start my first term at Sussex bound to a wheelchair as I just had an operation on my right foot to straighten my large toe. This operation, performed only under local anaesthetic, was an ordeal I never want to go through again: it was extremely painful. After the operation I didn’t have the strength in my left leg to be able to walk, even with my crutches at first and was therefore wheelchair-bound. On the one hand it was an advantage, as it made meeting people and thus making friends easier, because many people on my course or in my hall of residence wanted to help and so many friendships were started. My friends also had a great time wheeling me around the very hilly campus with great speed or racing round the corridors in our hall in my wheelchair. I particularly remember one harrowing trip after a disco in one of the halls of residence which was situated on top of a very steep hill. We had a bit too much to drink, especially Graham, a friend, who decided he would wheel me back to our hall. On top of the hill he suddenly had a bright idea! He stood on the back of the wheelchair leaning forward and let both of us go, hurtling down the hill. Thank God, we somehow managed to both keep the wheelchair  from overturning, and ended quite gently on the grass verge alongside the hill. I then asked someone else to be so kind and help me to get home.

 

On the other hand, being in a wheelchair for most of the time, caused me endless trouble convincing some of the lectures that I was quite able to do my work and to especially to participate in laboratory work that was so important in my biochemistry course. The worst of such occasions was when I had to get the permission to start working on the first year practicals in the chemistry lab. I had to prove to the chemistry lecturer taking our course that I wouldn’t be a hazard to the others in the lab.  He wouldn’t allow me in the lab at all until I could walk using only one crutch. Meanwhile my chemistry teacher from Oxford wrote a letter to him saying that I was quite safe in the laboratory environment. To no avail.  At last I could walk about using one crutch for short distances. Already I had missed precious weeks of laboratory work when most of my co‑students learned the basics of chemistry practical-work. I came into the lab expecting to be allowed to work and prepared to work extra hard to catch up. The lecturer, however, refused to let me in. I begged him and he ordered me to show him how well I could walk, and there, in front of the whole class I had to walk to and fro. I felt very humiliated by this, walking and being scrutinized like cattle for sale in a market. In addition the lecturer decided I could not work in his lab and made me leave. This caused me great problems later on, when I was allowed to partake in lab‑work in chemistry: I had no grounding in the basics, and I got totally lost trying to do the more advanced chemical experiments. Worst of all, when I went wrong, the people helping us would say how come I didn’t remember how to do a particular thing that I was supposed to have learned earlier in the year! Thus one of my favourite subjects, chemistry, turned into a horrific nightmare.

   In those days, although Sussex University claimed to be set up to cater for disabled students, and to their credit they have special accommodation for students in a wheelchair, (I never used this accommodation) they really only catered for students who never needed to enter a lab. Also as it is built on hills, it was difficult to get to places like the library, where you had to wait by the goods lift until someone would come and take you up. The ramps  to various building were also very narrow and steep and difficult to manage. Thankfully for me after the first term I could get around on my crutches and could leave the hated wheelchair behind  in Holland.

Nevertheless, all this made me feel worthless, and I had trouble in keeping up with all my studies. To contribute to all that misery I was extremely shy and all to often I could hardly speak and would only squeak when I was asked a question. Soon I was getting grades below those required for the degree. The dean and my personal adviser tried at first to find out what the problem was but I was too shy to say and they then tried to persuade me instead that maybe I should leave, that University was too much for me; but I was too  pigheaded and determined to continue so I did. It was, however, a vicious circle and although my grades did improve I felt that I was a failure and that therefore I shouldn’t be alive. This feeling got worse as time went by.

In my second year I and some of my friends moved off the campus and hired a house in the sea‑side town of Hove, about half an hour drive from the University. I enjoyed the drive as it went through the beautiful Sussex Downs. The first months of the second year were wonderful for me because I fell in love with one of the boys sharing our house. We were good friends and we spent a lot of time together. I knew that he didn’t love me but then it was okay, as long as we were friends. However, after Christmas, during the second term things got worse. I just turned down a place in Medical school in Holland (medicine was and always will be my first love) as I didn’t want to leave Sussex just then, I had too many friends and things to go back to. When I got back, however, I had to undergo a slight operation and this had a depressing effect on me. Work was going very badly and more and more a feeling of worthlessness crept over me. On top of that, but not unexpectedly, my ‘love‑of‑my‑life’ fell  in love in his turn with another girl and understandably spent most of his free time with her. Putting it down on paper now I have to smile at the naivety and futility of it all, but at that time it seemed to me that the world was coming to an end. I was a failure, I failed in my academic work, and I failed in love. I felt terribly alone. I wanted to be with people and yet at the same time I wanted to be alone. I hated the world and all things living, and at the same time I loved and admired the beauty of all creation that felt so out of reach. I saw myself as some kind of horrible creature, a dark‑black‑creepy insect that should hide away in a corner or creep down a deep black hole never to emerge. And crawl away I did, into my icy‑cold room (we had icicles forming inside the rooms in winter). Feeling  and feeding on my anger.

In this darkness of mind, where reality and imagination blended into one, where I could not make one simple decision without agonizing over it for hours or days, where I wanted to lash out and destroy myself and others, I suddenly one sunny Sunday, early afternoon, saw a light at the end of this darkness. I made a decision; I knew what to do, my heart filled with joy! I have had enough and would go and find out, at last, what was at the other side of life. I would know what comes after death.  Having made that decision, I was inexplicably happy: even today I remember that happiness, that feeling of total freedom as nothing and no one mattered any more.

My friends and I were having Sunday lunch together and I happily helped in the kitchen. My friends were surprised but pleased at my sudden change of mood. The sun was streaming into the kitchen through the window and the birds were singing in the early spring sunshine in tune to my happiness. As I was helping out I would sneak off and drink any alcohol I could find in the house; Gin, Whisky and so on. I took all the drugs I  could lay my hands on; Vallium, Megadon and Paracetamol. I took all I had, but slowly, not all at once. On a very high note I managed to get through lunch and then said I was going to have a rest. I made it to my room and took whatever was still left. I lay down on my bed to sleep for ever, but then I made just one mistake, a mistake that would save my life; I decided, in my bemused state of mind, to write a letter explaining why I was ending my life.  Suddenly I wasn’t happy any more, not that I wanted to live, but because all that build up anger poured out of me onto this piece of paper. Anger that had slowly been building up over many years, frustrations and disappointments. Unfortunately I poured all that fury onto one person. The person I thought I had loved so much, but who wouldn’t return that love. I blamed him for everything and I am deeply sorry for that as it was not him, it was in reality the anger at my disability and failure to excel at my work.

At last I fell into unconscious sleep. The next thing I remember was being in a white hospital room somewhere in Brighton. Apparently what had happened was that someone came into my room to ask me whether I wanted to go out, and happened to see my letter, tried to wake me up and couldn’t and so my friends took me to the university health centre from where I was taken to the hospital.

I woke up, alone in a room, white all around me, and I wasn’t dead! A sense of deep disappointment came over me; what more did I have to do to kill myself? I looked around. I tried to get up and gingerly got out of the bed, and started to walk out of the room and hospital. A nurse stopped me and led me back to my room. I then saw something that looked like an anaesthetizing mask (it was Oxygen), and tried to turn it on to put myself to sleep. Another nurse saw me and told me patronizingly that I shouldn’t play with that and led me back to my bed. Again I failed. Then I searched through my beauty‑case that my friends had brought over. I found a shaving razor. With great difficulty I managed to get the blade out, nearly cutting my thumb off in the process. With the razor I slashed at my wrist. All this was done in a dream‑like state, all I knew was that I had to succeed. As the blood started to pour out I thought I ought to hide it somehow from the hospital staff. I found a handkerchief, and tied it loosely round my wrist, and as I started on my other wrist I fell again into a comatose sleep.

I woke to find myself, alive, in a sick‑room at the University Health Centre. How I got there I didn’t know. Sitting opposite me was one of my friends, Jacky, and I could see she had been crying. I had no concept of time or of how much time had gone by since that sunny Sunday afternoon. It was dark outside when I woke up. My friend asked me why had I done it and was very upset. It was for the first time that I seemed to be starting to be able to think more clearly. Slowly my desire to end it all started to fade, all this going to sleep in one place and finding myself alive and waking up somewhere else was beginning to be too much for me. How was it possible that I was still alive on this earth? Surely I had even cut my wrists, on TV. it seemed so easy? I looked at my wrists, one was uncut, but the thumb looked a real mess,  and to the other was stuck a handkerchief which had stopped the bleeding. I peeled it off, and my wrist started to bleed again. Horrified, my friend called the doctor that was on duty at the health centre that night. It was his first night on duty at that particular place. He had the sister stop the bleeding and give me a tetanus jab, then proceeded to have a long chat with me.  It was the start of a long climb back to ‘normality’. But it was a long road, and a long time before I totally recovered. I had many self‑destructive fall backs during the remaining time in Sussex and even when I moved to London for my further studies. My self‑destructiveness stopped only, when I met my new G.P., in London, but my self destructive thoughts didn’t stop until one of the three things happened that I mentioned earlier. That is until I started practicing martial arts in the “Budokan” way.

The recovery took many years, but the worst was the remaining time that I spent at Sussex.  While I was still in the health centre I was forced to see a psychiatrist. He tried to put me at ease at first, talking about Prague, and other interesting subjects, then, suddenly, he maintained that all my problems had to have originated with my parents and family. I got very indignant. Then he insisted that I would have to go into a ‘resting home’ for a couple of weeks. I was absolutely horrified, I saw myself shut in a psychiatric hospital, branded for life! I started to cry uncontrollably while muttering that he had no right to put me in any hospital and that I could leave the country as I wasn’t English anyway etc, etc. I was quite prepared to  take off there and then and run as far as I had to from this man and his ‘resting‑home’. He couldn’t talk to me any more and left. My G.P. was called in to talk to me, the same person that only stared his duty that week. He calmed me down and extracted a promise that I would never try to kill myself again. And although there were times that I felt desperate, and there were times that I hurt myself on purpose I never again tried to kill myself, so far I have kept my promise, a promise that kept me out of hospitals and made it possible for me to somehow get through my first degree and go on to other things.

When I was allowed to leave the health centre, my mother had arrived, and asked me whether I wanted to leave Sussex. Or to take a year off. I didn’t, I wanted to finish as soon as possible. I remember that when in those days I was outside, in the sun, or the rain, it all felt very unreal. I was going through life as if in a dream. I also felt cleansed as if coming so near to death I cleansed myself from my previous life. I could make a fresh start, or at least that is how I felt in the first few weeks. However, problems do not go away and are not solved by turning towards escape in death, and friends are not prepared to make a fresh start. The weeks of feeling cleansed and fresh to start again were quickly wiped away, by friends continuously accusing me of being selfish for what I had done, by being branded as if trying to get attention, and by normal day to day life. I realize now that the act of suicide is a selfish act, however, so are many other acts that people perform in their daily lives, and if anyone was entitled to blame me for being selfish it should have been my family. But they were wonderfully patient and understanding. I shall never forget the pain my attempted suicide brought to my parents and only for that alone would I never consider it again. I would also like to state that I definitely did  not want to bring attention to myself, I did as I do now hate too much attention given to me. It is embarrassing and I try and avoid it as far as possible. Maybe, as some say, it was a cry for help, as I was too shy to ask for it normally, but all I know and remember was the happiness when I decided to finish with life. And also the incredible happiness that now I would at last know what comes after death.

After the first weeks of this wonderful feeling of freshness  and after I returned from a visit to my sister Katerina and her newborn daughter Natasha in Canada, depression set in with a vengeance. I had failed at everything, work was still difficult, and I even failed to kill my self. All the people around me tried to help, my G.P. my friends and my family. But it was very difficult to respond, partly, I think now because half of me did not want to be helped, it was in a way an escape to be depressed. Not to have to cope with life. I wrote after I at last started to come out of this long lasting state of depression a little “thought” that I include below, maybe that can explain somewhat what it felt like and why it took so long for me to get back to be able to face life as it is again.

 

Enter if you dare

I fall……………………………………………………………..

I found myself in a deep ravine, a very deep gorge, so deep that not a twinkle of light penetrated the darkness surrounding me. All around me a dense darkness engulfed me. I felt I could reach out and grasp the darkness. But when I reached out I felt nothing. I was frightened yet at the same time I knew it was what I expected all along. I took some uncertain steps and reached out again, this time I felt a cold stone wall, it was totally smooth, not a cleft, crack or crevice could be felt. I started walking along the wall, and all the time my hand slid along the smooth, sleek surface. So I walked for a long time until I got too tired to continue, not once did I feel any change in the surface of my prison.

I felt fear, I wanted to get out, I cried for help, but no one heard, no one understood. I cried. I started clawing at the wall, I longed for light, but the wall only seemed to become smoother the harder I clawed, and the darkness thicker the more I strained my eyes. I felt blood, I knew I had to give up, to accept my fate, but I knew I should not. I wanted to leave yet I wanted to stay. The darkness became comforting, I had no need to see anymore, the walls became my friends, no one could penetrate them, no one could come to me. I was alone I did not want any one to come. I hated everyone and here I was safe. The darkness became thicker, the wall smoother. I felt blood.

Then my solitude was disturbed, some one was trying to reach out to me, I felt anger and relief at the same time. But I did not want to respond, I felt safe where I was.

Then a rope was thrown down to me, but it was not strong enough, I did not want to leave, I felt safe where I was.

Then a ladder was lowered down to me, but it was too weak, I did not want to leave, I felt safe where I was.

But they would not leave me alone, they fed me comfort and guilt. I had to try to get out of the deep, deep dark ravine. The darkness become thinner, the walls not as smooth, I felt fear. More rope, more ladders, but still they were not strong enough, not long enough.

Then, when walking round my walls, I felt a cold iron bar hit my hand, I let my hand slide along, it was a ladder, a rusty ladder, so rusty that my hands were cut when I touched it. But I knew it was the only ladder that would let me escape, I knew it would be a hard journey and a painful one. I recoiled from the ladder, I did not want to leave. But I knew I must. I knew that ladder was my own formation, my very own.

It took a long time before I started the long, painful climb, each forced step that I took, I wanted to sink back into the darkness. But I could not anymore, and they would not let me. I cried, and fought against myself, while climbing on. It become lighter, and I once again could see. What I saw I did not like, I saw myself. But it was too late to return I had reached the edge. Now I had to learn not to fall back into the comforting darkness that all of us can reach, so far below.

 

In this semi depressive state I ended my time at Sussex, I had to take my finals in the health centre and although that helped in one way on another it was worse because there was no one else there doing the exams and I felt I could stop when I felt like it. One particular exam on a subject I detested and had not revised for, I just signed my name, put the date and the question on it, and left it at that. When that particularly offending paper was taken away, I burst into tears, but it was too late.

        Then came the idyllic weeks of waiting for the results. I say idyllic because there was no more work, it was pointless to worry about the exams and it was summer time. We criss‑crossed  Sussex in my little car, spent days on the beach and walking on the Downs, stuffing ourselves with cream-teas in cosy little tea shops.. However, all good things come to an end and so also did the weeks of waiting, the day of judgement came. I asked my friend to get my result and write it on a piece of paper, then handed to me through the car window and leave me to drive away so that I could find out what I had all on my own. I couldn’t face to find out I had failed with lots of people around. For I was sure I had failed. I knew what I had to get to be able to do a Ph.D in London at Birkbeck college. I wanted to go on to do a Ph.D, although all my lecturers as well as the dean tried to persuade me that the academic life was not for me, that obviously I couldn’t cope and that I would never succeed if I tried to earn a doctorate. Nevertheless, I applied, and I got a provisional place. The big question now was did I have a good enough exam result. I drove off; the peace of paper on which my degree result was written was neatly folded and laying on the dashboard. It kept staring at me willing me to open it. I drove on and prayed. I drove all the way to Beachy Head and there, with the waves breaking onto the cliffs below me, the sun shining and people strolling about, I at last with shaking hands opened the tightly folded piece of white paper.

Shaking like a leaf in strong winds I ran to the nearest phone booth, placed a collect call to Holland to my parents and told them that I could go to London next November and start on my Ph.D!  What followed was the most wonderfully long holiday of all my life, and  the last one that long!

In November, refreshed and scared stiff of whether I would be able to go through with this difficult part of my study, all those warnings from my lecturers suddenly creeping endlessly into my mind I left for London and I left for what was to become over the next few years the truly turning points in my life.

END OF PART 1

Chapter 10 Oxford…again

January 1st 1979. The first day  of a new year ending a decade that was mainly spent in Holland. A year that  was going  to bring  a number of important and some far‑reaching changes   in my life.   However, the first event of that year was not very auspicious.  We were spending that Christmas and New Year skiing but not as usually in Zell am See in Austria but in France in a skiing resort called Les Arcs. I had come a long way since the first tentative short slides. I loved skiing for it  gave me an opportunity to move that little bit faster and it also gave me a feeling  of  self-respect each time  I changed my crutches for skiing poles. That day, the first day of that year, my Lebanese skiing instructor,  Kamal, promised to take me  on a whole day run from the very  top  of the skiing resort down  to our hotel. I woke   up  with a swollen  left leg, but after some debate I decided I could not skip such an opportunity. As I cannot feel that leg at all I could never know if something was wrong with it or not. I still had three day of  skiing left.  It was a beautiful  sunny day, the sky was the dark blue which is so particular to the snow-covered Alps. Kamal decided we should first have a warm‑up  run on the beginners slope. Sitting on the chair‑lift going up Kamal, pointed out to me his other private students and their various faults and idiosyncrasies. We laughed about these poor people. The first half of the slope I skied down with no problems, accompanied by the usual encouragement from Kamal  to go faster. Then I made a beautiful turn on a mogul, but too fast for me, and had  fallen down,  sideways. As  I softly lowered myself into the snow I heard an ominous crack, ” No, it can’t be!” I thought   to myself. And I tried to stand up. However, it was! My leg moved in an abnormal circular motion above my skiing boot. I sat down again. Then I started  gesticulating and shouting to Kamal, who was further down telling me to get up, that I thought I broke my “ham”! That is, I was trying to say; ” I broke my leg” in French but instead  of saying “jambe” I said ” jambon”. Once I convinced Kamal that it was indeed broken he told me to wait  and  went  of to  get the stretcher people. Meanwhile I saw my parents going up on the chair lift  and I started frantically to wave to them. However, before they could arrive my brother Marek,   got to me first. As I was explaining to him what had happened I realised that I had a three‑day skiing pass left, which was more than likely not going to be used up. This struck me as very tragic, and for the first time the tears arrived. Meanwhile, during all the commotion  among the parents, myself and my brother, the stretcher‑skiers arrived. My leg was immobilized in an air‑filled ‘plaster’ and I was gently taken down to the first aid station, where I told the doctor again that my “ham” was broken but that I could not feel my “ham”. My brother  at that point informed me what I was actually saying, and I broke out into uncontrollable giggling which started off Marek telling me jokes and to the utter astonishment of curious onlookers around, kept me laughing all the way to the hospital.

When I was writing this chapter, I was on my skiing holiday in Zell am See praying that I won’t break a leg again, especially as my “court jester” Marek,  was not present.  It took me sven years after breaking my leg in France to gather the courage to go skiing again. Now I once more go skiing whenever I can. Partly to boost my moral, self‑respect and to prove to myself and others that whatever happens I can and will ski. I  do enjoy skiing, I even love the activity but each time I   come of the slopes in one piece I breathe a sigh of relief.

When I returned to Holland and to school after our skiing trip, my whole leg in plaster and having to be back in the hated wheelchair, I became more and more unhappy about my situation in the school and with the problems at home. that were caused by a difficult time in the marriage of my parents.  I think that I was ready to set out on my own, to leave the protective environment of home. I was nearly 19, still at school with younger people, with no real goal in sight  regarding my future. The goals I had set myself before were achieved, I could walk, I could bike, I went to  a ‘normal’ school and I could take care of myself when I didn’t have a broken leg. So I begged my parents to enquire about the possibility of going to England. They  did and the  great day arrived when my mother and I left for England for an interview with the headmistress of St. Clare’s Hall in Oxford. I had visions of magnificent old buildings surrounded  by acres and acres of ground; these expectations were due to the   descriptions of English public school in the famous Enid Blyton  books that I used to devour. When we arrived at 139 Banbury  Rd., Oxford I was deeply disappointed by the way the school looked. It was (and is) a collection of buildings that used to be normal family houses, and the only surrounding grounds were the roads leading to and from Oxford centre. But the atmosphere of the school was from the very beginning very friendly and I liked the headmistress and all the other people I met. The headmistress, Miss Anne Dreydel OBE. was also disabled; she had suffered a spinal injury, during a bombing raid in the war, and she understood the problems that face a disabled person in this world who wants to lead a normal life and fit into our society. I convinced her that I would work hard and that I wanted to join her school very much. To my great happiness she accepted me. I was to start in October and  do the International Baccalaureate course instead of A levels.  We left Oxford to return to Holland, to finish my year there, and to prepare myself for leaving home. I  was happy that I got accepted but I was scared by the idea of being away from my parents. I did not know whether I  could cope on my own, yet another hurdle to overcome and to prove to myself that I could live without them.

Back in Holland I had to tell my best friend Ellis  that I would be leaving and going off to England. In retrospect it did our friendship a lot of good, for we were spending all our time together, at school and at home, and in the end we had nothing to talk about, and our friendship was entering a difficult stage.

The day dawned when I was at last leaving for Oxford, against the protests of my Dutch teachers who thought I would not be able to cope physically being on my own and would not succeed academically. Their motto was “better safe then sorry”, my motto had started to be “better to try and fail then be sorry for never trying”!

My mother was to accompany me all the way to Oxford and stay for a few days with our good friends there. We also were going via Cambridge to accompany my brother Marek back to his University. I was sad to leave Ellis behind, and scared of what was to come. With trepidation I waited in the car for us to leave to catch the night boat from Harwich. Suddenly Ellis ran out of her house (we already said goodbye many times) and stuck an envelope through the window, then she ran back in. On the envelope instructions were written that it could only be opened on the boat. Very well, I would do that (no, it wasn’t a bomb!).  The journey on the ferry was all but pleasant, we had a cabin deep down in the hull of the ship and there were force 9 winds blowing relentlessly.  The ship made her way through the waves with great crunching groaning and moaning noises and we were tossed about like tennis ball at Wimbledon. Marek couldn’t stay in the cabin and went up to the bar, how I wished I could have gone with him, but my mother forbade me, so instead I cowered in my bunk expecting the ship to keel over any minute. Then I remembered Ellis’s letter. I opened it, It was a poem about staying friends however far apart we may be. It put me into a much better mood, knowing that there always will be my friend Ellis whatever happens. And indeed, during all the years I have spent in England, during the years when Ellis got married, had a child, and led her life while I was and am leading mine, we always find time for each other, especially on special occasions like her marriage. This year it will be the 40th anniversary of our friendship.

We arrived at last to a sun-filled England. The next few days were spent in discovering the beauty and pleasures of Cambridge and then of Oxford; punting on the river Cam, and drinking my first Pimms. However, the fun ended and school started. My mother returned to Holland and I was left alone in one of the houses where pupils of St. Clares Hall resided. My house was run by a young French woman from Bordeaux who was married and had a little child. Later we became friends. There were about twenty other girls staying in our house from all walks of life and from all different parts of the world. At first, due to my extreme shyness, I didn’t talk to anyone and closed myself off in my room feeling utterly unhappy and having second thoughts about leaving Holland. Then I proceeded to get a flu with high temperatures. Suddenly all the girls in the house were there to help and would stay in my room chatting away. I made lot of friends and never wanted to leave again. When I returned home for the holiday after my first term I was very happy, I had succeeded in living alone away from home and I was beginning to stand on my own two feet (with crutches ). I had proven to myself and those people who tried to dissuade me  that I was capable of success.

         The mixture of people from all those countries provided a wonderful mixing pot of knowledge and experiences that all could share in. The most poignant example for me was when I became extremely good friends with a Chillian girl, called Adriana. She had to leave Chile because of the extreme right political movement in power at that time while her family were active in far‑left politics. Her Mother had indeed been arrested and tortured. Adriana was alone in England, sent away for her own safety. And there was I a refugee from Czechoslovakia, from the extreme left. Yet we managed to agree on many points, we managed to respect each other’s ideas when they differed and to overcame all our prejudices just to be friends. There was another example of this kind of friendship; two girls, one from Lebanon, a Muslim and another from Israel, they too became friends, only to have to hide their friendship from their respective families. Tolerance for all races, religions and political situations was indeed prevalent in that school.

My two years spent at Oxford were most of the time quite wonderful. I enjoyed most of my lessons, the teachers were good and seemed to really care whether their pupils did well or not and unlike in my school in Holland the pupils seemed to want to learn.  The two years passed  much too quickly and I was very sorry indeed reluctant to have to leave.

Also during my stay at St. Clares two other events occurred which had an effect on my life. Firstly I managed to get my driving licence. This had its funny and less funny moments. I had a good teacher, who used to be a racing car driver. The day of my first exam came and went, I failed for not looking into the mirror often enough, and for a few days I walked around feeling depressed and sorry for myself; it was the first time I had actually failed at anything ‑ and I didn’t like that feeling. My second test was only a week away, when my mother who had come to visit me had left the country (England) with the only pair of car keys I had. In panic I phoned her and she sent them back from Holland: would they arrive in time?  Every morning I checked the post; no keys. One day before the deadline, the keenly awaited envelope arrived. Relief! Quickly I had a few more lessons and then the dreaded Exam followed. During the exam while turning left and trying to avoid a car turning right I drove over the corner of a pavement. ‘That’s it!” I thought and before I could help myself I exclaimed  aloud “Shit!”  Full of horror I looked at my examiner, He sat there, face impassive, writing on a piece of paper. After the dreaded questions which seemed to go on forever,  in a voice of an undertaker he said, ” I have to tell you that…” he paused and continued in the same manner ” you have passed”. I couldn’t   believe my ears. I wanted him to leave the car quickly before he could change his mind.

Happily I drove myself back to the school and celebrations. The next morning was Saturday and I persuaded a friend of mine to go out very early for a drive, that way we would avoid any traffic. We set out a six in the morning driving happily through the pretty and winding country lanes around Oxford. Time went by very quickly and I had to get back if I wanted to avoid most of the busy Saturday‑shopping traffic. However, we got lost! And when  at last we came back to Oxford I found myself right in the centre of Oxford at ten in the morning peak shopping time!. Quickly I had to learn to cope with irritated drives who couldn’t find a parking space and with window‑shopping pedestrians crossing the road ignoring any traffic that might happen to be there. But we arrived back at school safely, the car still in one piece, tired and very hungry.  Maybe I became too blasé about driving, and only a few months later I was involved in a minor accident that, however minor, taught me a valuable lesson: that the car is a potential murder weapon! It was after my final exams at the school but I had decided to stay for a few weeks more as my friends were also staying  and I was helping with the production of the first year‑book of our school.  One early morning I was driving into town to get some photographic paper for the year‑book  photos. My mind was on other things, and as I was turning left a cyclist hit my car from the side. I managed to stop and see the cyclist fall of her bike and slid on the road. Shaking like a leaf, I parked the car off the road and got out. Thankfully, the cyclist had only very minor injuries and torn jeans. But all day long and during the police enquiries on the same day I was in a shock, and couldn’t stop crying. In the evening, however, my friends forced me to drive them around, so that I would get over the fear of sitting behind the steering wheel. I think it was a lesson needed and I was happy that it wasn’t a more serious accident.

Early during my stay in St. Clare’s I came into contact with “soft drugs”. Up to that point, in my protective home environment I had only heard of drugs occasionally and then only when it was being stressed that these were extremely dangerous substances that would kill and destroy you immediately. When at first I met a Swedish girl, who blissfully told me she was using drugs  and growing the drug plant at home I was shocked to the core. But as time went by curiosity and inquisitiveness overcame the shock. But it was not until I met and befriended B. that I ventured to try some of it for myself. What a disappointment the first time turned out to be! We managed to “smuggle” a minute amount of marihuana over from her boyfriend at the University. I remember walking through the dark streets of Oxford with the offending substance wrapped in a tiny piece of paper in my pocket. I was positive that everyone could see that I was doing something illegal and that I would be stopped and searched by a policeman and the he would take me away and lock me up in jail.  Of course no one stopped us, no policeman was interested in the slightest about us and we got back safely into our house. Then, full of anticipation and nervousness of being discovered during this illegal activity, I watched as B. put some of the brown powder into a rolled cigarette. There were, however, some minor problems: I did not smoke and thus found inhaling the smoke from the cigarette an extremely unpleasant experience. The amount of the actual drug in the cigarette was so tiny that it had no effect on me whatsoever as I tried bravely to puff my way through the tobacco.  B. found this all highly amusing in her state of drug intoxication; she was high on her previous intake at her boyfriend’s hall. I did not find it at all amusing but only managed to get more frustrated as coughing I tried to inhale the cigarette smoke. But to no avail; in desperation I thought of trying some glue‑sniffing but gave up that idea because I knew that could be really dangerous. So in disappointment I went to bed.

Only once during the few time that I took “soft drugs” did I actually really enjoy the experience.  Another friend of ours who had her own flat, managed to obtain some fresh “grass”. We could just roll it into a cigarette paper and inhale the drug without the need to inhale the tobacco. I experienced an instant high. And we fell about the place giggling like fools. Suddenly the phone rang. As our friend answered, her giggling stopped, and she went white as a sheet. It was the police! They wanted to talk to her about her bike that she had previously reported stolen and were sending a couple of officers  to her place. They would be there in about ten minutes. Frantically we cleaned up, threw all the windows open to get rid of the treacherous smell, and B. and I disappeared into my car parked round the corner. However, we could not drive away for I felt in no state to drive as yet. We saw the two officers of the law come and go up to our friends flat. We half expected to see them leave with our friend handcuffed and taken to the police station. But after what seemed like a long time they left alone. We were safe!

From time to time up until my second year at University I would occasionally indulge in this vice, but in reality the effects on me were no more like drinking a couple of glasses of good wine, which I found much more to my taste. Also, at the University I saw a girl who lived in my hall-of-residence, a friend of mine, progress from “soft‑drugs”, to “speed” to finally and ultimately end up using heroin. She was addicted and could not stop. Her mental and physical deterioration was horrible to see. I resolved never ever to even touch that stuff again. I do not know what happened to her but I doubt that she became the lawyer that she wanted to become.

Sadly, I had to leave Oxford and the school I learned to love so much. Sadly and tearfully we said goodbye to people that, by the very fact that they came from different parts of the world, we knew we would never see again. These friends who had shared for two years all the happiness and sadness that accompanies life and who had become part of a family.

I had to wait much longer to find out whether I had passed my final exams and even more worrying whether I had managed to get the grades that the University of my choice, Sussex, wanted of me. On the day that my Chemistry/Physics teacher Mr. L. and his family came to visit me in Holland on their way through that country, the envelope containing the answer to my immediate future dropped through the mailbox.  I had passed and I could go to Sussex, to study Biochemistry.  It was the happiest summer that I had had for a long time.

I had managed against all odds to finish my two years at Oxford, and against all predictions of my Dutch teachers I got the grades to enable me go to University. Towards the end of the summer I went to visit my old school in Holland and told my teacher the good news. Only one teacher, my old chemistry teacher, seemed happy for me, the other teachers went as far as to say that it was a mistake for me to go to University at all; that due to my disability I would not be able to cope academically. I shrugged off their pessimism and went off to Sussex. If up to then I had had listened to all those who said I could not do this or that I would in all probability be now in an institution unable to move at all. I wasn’t supposed to have lived, then, to be able to sit, let alone to walk, albeit with crutches.  Now I could take care of myself for most things. I was more or less independent. Not that it was always easy and the next years proved to be a trial that I nearly failed to come through.

Chapter 8 – Bye de byes Holland

Still dependent on a wheelchair for most of the day, I was positively sure that I never wanted to go to a special school again. In fact I didn’t want to have any contact what so ever with any other disabled people anymore. This unfortunate shying away from people afflicted by physical disability I keep, to some extent, to this day. So nearing the end of the 6th and last class of the elementary school, I had to decide where to go next. There was never any question about me having a good education and although never verbally expressed I was expected to go to a university or to follow some kind of higher education after my schooling.

In Holland the secondary school is divided roughly into three major branches; the Mavo, Havo and WVO. A pupil is put into one of these branches according to his or her ability. MAVO being the lowest, and lasting only 4 years. With a MAVO diploma there is not much the person can do further, apart from find menial work or being admitted to HAVO. HAVO is higher than MAVO, lasts 5 years and one can either continue in VWO or some higher education like a photography school. VWO is preparation for a university and is further divided into two streams; the Atheneum with emphases on art and language related subjects and the Gymnasium with emphasis on science. It was decided to send me to St. Adelbert College, in my home town. This was a Catholic school of sorts, but not strict in its religious stand. The first class of this school took all main streams and only would divide pupils after their first year.

At first my mother had to take me by car to and from the school where I still mainly moved around on the wheelchair. But  after a few months the big day came when I said I would go to school like all the other children on my own bike. The wheelchair was not necessary I declared for the short walks between the classes and biking didn’t tire me out as much as walking. My bike was now fitted with two crutch holders so taking these with me was no problem.  I cannot remember well the first day I biked to school, but I am sure that  I would have been excited and apprehensive, while my parent would have been worried.  I do remember the subsequent journeys, for I would enjoy the freedom and the feeling of being normal so much. It was relatively quiet at the time of morning that I went to school,    and the bike would softly and  smoothly glide over the tarmac, at a speed I could never manage walking. This feeling gave me a sense of freedom and power. However, I still biked slower than others and therefore when we had to, later, bike from one building of the school to another, on the other side of the village, I would always be late. This was accepted and I was even allowed to have one person accompany me. There were a lot of volunteers for this as almost every one wanted to be late for a class. Also somehow the journey between classes always took me longer than any other journeys!

My first year at St. Adelbert College, was a fairly happy one. I enjoyed the classes, well most  of them,  and I enjoyed the many little freedoms  I found as I realized that  I could do more and more thing myself and for myself.

I expected to be passed on to the VWO second class, as my grades were reasonably good throughout the year without me having to do too much work for them. The only subject that caused me any problems was Dutch, but I was not too worried for even that was improving and both I and my parents were confident that the teaching staff would take into account that Dutch was my third language. So it came as a great shock when my class‑teacher announced at the end of the year that I had been allowed to go to the second class of the HAVO. I sat in shock fighting back the tears not believing my ears. My parents could not believe it either and promptly queried the decision. They were told that my Dutch was not up to standard, when my parents pointed out that I was a foreigner and that my Dutch could not be expected to be as good as that of a native speaker but that it continued to improve, they repeated that Dutch was important and if I couldn’t write Dutch grammatically correct I  could not go to the VWO. Also they pointed out to my parents that being disabled I obviously get tired easily and that the VWO could prove too strenuous for me. My parents knowing very well that I never work harder than absolutely necessary asked if I could be allowed to go to the VWO for a test period and that if I couldn’t cope I could be put back to the HAVO. However the reply to that request was that I would be too disappointed if I had to go back and that it would be psychologically unhealthy for me. So there was nothing for me to do but for the time being go to the HAVO.

Apart from my chemistry classes and French I hated the HAVO, I didn’t like the atmosphere, where it seemed a crime if you got a good mark, or if you worked harder then others. Where the main sport used to   be to tease the teacher and disrupt the class as much as possible. Of the seven teachers I had for the seven subjects I took, two were ill most of the year with nervous related sicknesses, one, later, committed suicide by jumping in front of a train,  and one died. The three that survived ruled their class with an iron hand; my chemistry teacher, who although strict, had a good sense of humour and was always fair, my German teacher who caused many students to have nervous related illnesses in turn, and my Dutch teacher who was so nice and motherly that we all got on with her.

As  time  went  by  and   I was  finishing my third year  at the HAVO I was becoming extremely unhappy  at school. Though there was one redeeming factor in that year, and that was that my friend Ellis, joined me in St Adelbert. We spend a whole year in school together, which was great fun for us. But otherwise I felt that I was stuck in a pit with no obvious ways out. Something had to be done or I would end up working at a till in a village for the disabled somewhere in Holland.

I hated my school more and more. Therefore one day I asked whether I could not be sent to the school my brother went to in England, to finish his A levels. I too wanted to do A levels and go to University. And so a wheel was set in motion that yet again would change my life totally, a new chapter in yet another country.

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.

Chapter 5 America yet again.

New York.

There was my Aunt Katja waiting for us, it was an emotional reunion. We were all still shocked by what had happened so recently, and apprehensive of our future. Only my parents really knew English. We children were lost. We stayed in New York for a few days then we drove our car, the Škoda, which was shipped with us  from Europe to the USA, all the way to Chicago. The poor car had to bear the brunt of many jokes when we stopped at petrol stations on the way. The jokes were mostly about the shape and miniature size of our car compared to the American cars, about the weird number plates and about its ‘cute’ system of opening the gas‑ tank with a loud plop.

Thus we travelled to our new home, Chicago. As we passed through Gary Indiana, I felt again the old excitement and the familiar horror, but my brother declared loudly that he would never live in such pollution and mess. That night we stayed in a huge hotel, on one of the top floors, and I looked out with fondness over the city of Chicago, and was very hurt by the insensitive and derogatory remarks made by my brother and by the lack of enthusiasm of my sister. It was difficult for me to understand at that time what my older brother and sister must have been going through. They left much more behind than I did. A whole circle of friends and social life, their planned futures, boy‑friends and girl‑friends. And being older it would be much more difficult to adjust to an entirely new and different way of life. I at eight was not so aware of these things. Of course I missed my friends, my family, but I did not yet fully realize we would never go back. For me it was just another break in the USA, like we had done before. The only negative effect of the occupation at that time for me was that I had nightmares about the Russian tanks coming after me wherever I went. Otherwise I was excited by what was happening around me. Also having been to America and especially Chicago before, it was a bit like coming home after the months spent in Oxford. I knew this place, I recognized some of the streets, and buildings, whereas it was all very strange for Marek and Katerina; and they also realized fully what it would mean to be refugees. My brother, throughout his stay in America, wanted to return, and on many occasions caused my parents great worry in case he would run away and go back. Fortunately, all throughout this time my medical situation was fairly stable, waiting until calmer times to choose its moment to surface again with new problems.

In Chicago, we soon got an apartment where each one of us had their own room; that at least was some improvement on our living standards. We also had our Czech Skoda car with us. This has caused many funny situations. On occasions we would be stopped on the street by some long lost Czech who would excitedly point to our car, and the licence plate and start stammering and stuttering  in half Czech half English about the incredible fact that here in America there was a Czech car!  We did make a few friends due to the car.  However, it was very difficult to repair and no self‑respecting American garagist was going to touch this alien car.  So very sadly one day we said goodbye to it and left it in a parking lot somewhere in Chicago, and bought an old Saab. Poor Skoda! I do wonder what became of it. There was also in a Chicago suburb a Czech quarter called Cicero. This included a Czech restaurant where one could have Czech beer and pancakes. Many of the people there were old Czech refugees; they crowded round us, especially amazed to hear a little girl speaking Czech. As I could not speak anything else but Czech at the time, it seemed all very silly to me and I was very embarrassed by all the attention. For them it was a small link with what they had left behind so many years ago. But we soon found out that it was not like Czechoslovakia at all because the manager refused to serve me brown beer because I was too young. My father got very annoyed at this, and we never went back there. Slowly we lost some of our Czech habits and acquired a few American customs.

Of course, English or no English, we all had to attend some kind of school. Marek had to find an equivalent of a sixth‑form in Czechoslovakia, which was impossible, and for my sister some kind of ballet school had to be found. I was the easiest one to accommodate.

I attended a Catholic primary school. This school was run by nuns; however, they did not wear their proper habits, and I remember telling my parents that these ladies could not be real nuns as they were not dressed as they should be, and I did not like it. However, I still had to go to school. My sister was the first who was obliged to leave Chicago, her education in classical ballet was suffering from the lack of good training. She was admitted to the prestigious Royal Ballet School in London, and at the tender age of sixteen, had to leave her family and cross the Atlantic to stay all alone in the big bad city of London. She survived.

Marek was also extremely unhappy in his school, there was no stimulating teaching but mostly violent trouble from the students who often clashed with the police patrolling the school grounds armed to the teeth. Coming from a well ordered country where the education of a child was taken very seriously, where it was no shame to be top of the class, as it seems to be in the Western world, he was not used to such kind of treatment. Also we were all very worried in case he was made to join the army and would have to go to Vietnam.

Only I (that is apart from the way the nuns dressed) was happy in my school. It was a Catholic school and therefore we had to have religious education. However, I got easily tired and still  could not go to school for a whole day, so I had a young priest,  Father Malcolm come to our home to teach me about being a good  Catholic. He was very nice, and mostly I remember that he loved my mother’s cooking and would often enjoy various cakes, or biscuits my mother made.

There were exciting things about America, new festivities to enjoy, such as “Trick or treat”. It was so exciting to get all dressed up, to look as horrible as humanly possible, and then in the dark to walk from house to house, ring the bell or knock on the door, and in a menacing voice demand ‘Trick or treat!’ And subsequently, compare the size of your sweet bag with the sweet bag of your friends. There were many devils, witches, monsters, ghosts and other horrors creeping around the streets on trick‑or‑treats night. On occasions there would be a little scared witch or ghost wandering around, a bit lost and frightened by the other ghostly things. It was also one of the few nights I was allowed to stay up late.

Another new cultural entry into our life was the introduction of Thanksgiving Day and the accompanying traditional meal of roast turkey. We spent our first Thanksgiving with friends who had a beautiful house in Wisconsin.

To my great pleasure, soon after we arrived in America, my parents decided to get a golden retriever puppy. We called her Jiskra, which in Czech means a sparkle; a sparkle of hope maybe? There were many hilarious occasions on which we tried to get the dog house‑trained. However, she took a great delight to relief herself on the carpet in my father’s study. We were advised to put newspapers on her favourite spot and then slowly move the paper toward the front door. This we did, and when we caught her ready to use the daily news we would move her and the newspaper toward the front door. We would then demonstrate how a dog should behave by scratching at the door and barking. We did not go as far as cocking our legs! After many weeks of these attempts, at last she got the idea and from then on behaved very well. Every morning she would wait patiently outside the door to my room, waiting until I would wake up, and then bounce up to me, greet me profusely and settle down comfortably on my bed. I loved taking her out for her walks, but as she grew stronger and bigger and I grew weaker, I had trouble controlling her. One day, I remember, we went out as usual, when she decided to chase another smaller dog; barking she set off, I refused to let go of the leash. I struggled after her, unable to stop her. Then I saw a lamp post, and as a desperate man clutches at straws, I caught a lamp‑post and hung on with all my might. Jiskra continued running and ended up winding the leash around the lamp‑post and me. By that time I was in tears and the skin of my wrist was raw from the leash.  Thankfully, my mother came out to look for me and rescued me and the dog from our predicament. That was the last time I took the dog out for a walk on my own.

Later, when we were returning to Europe, with great sadness and many tears I had to say goodbye to my good friend Jiskra, who had to stay behind in America.

I cannot remember whether I made many friends in Chicago or not. There was only this one girl, called Michiko, living next to our flat in a new building we moved to. But all I recollect was that I did not enjoy very much playing with her; I was more of a tom‑boy whereas she liked to play with dolls; she was Japanese, and I think that there were great cultural differences in our mannerisms. Also, I was getting progressively more ill and tended to enjoy the company of adults more and more as I was loosing energy to play with children my age, 9 years old.

I remember at that time being very much fond of Red Indians and everything that went with them. I wanted to be one and often dressed up as a Red Indian brave. I nearly always pretended to be Vinetou, the hero of Karl May’s novels about the brave Apaches. Vinetou, on the screen, was played by a good‑looking Frenchmen, Pierre Brice, tinted red, with whom many girls fell in love at first sight. Many a happy hour were spent with my sister browsing through accumulated pictures of Vinetou and day dreaming aloud. Well I wanted to be such an Indian, and especially while holidaying in the Adirondacks I spent all my energy on living out my dreams. It was quite a shock to see how real Red Indians lived in America, on their tiny reserves, like some animals on show. I felt even then that they were selling themselves and their culture. Where were the proud and fierce people all the writers of my childhood wrote and dreamt about?

While in Chicago another event that made a lasting impression on me took place. One day, to my surprise, while out on a walk, with my father, we entered a church. It was very nice and cool inside, there were a number of people present and in a corner a guitarist was playing religious folk music and a group of young people were singing. Then to my even greater surprise, my father told me that I was going to have my first communion. Because it was all so unexpected it had a much greater impact on me. It all made me feel very light headed and strange. I felt very happy. At home I received a beautiful golden cross, which I had worn since that day until 1982, only taking it off when absolutely necessary. In 1982 I lost it when I went swimming in Brighton with some university friends.

Such was the life we led in Chicago. I liked it there and did not understand why my parents were unhappy and my father talked of going back to Europe. I did not comprehend then how different, culturally and historically, America was from Europe. And how difficult it had to be for the older members of my family to adjust to the life there. I on the other hand, when my parents talked about going back to Europe, was scared that we were going nearer to the Soviet Union and that we would be occupied by them, I had many nightmares about Russian tanks rolling into whatever country we lived, and their soldiers locking us all up in jail, although I have never actually seen a Russian tank.

While all this was going on and we tried to live as normal life as possible, my condition was deteriorating quite alarmingly. I was losing sensation in parts of my body. But nothing was being done by the doctors apart from keeping an eye on me, and prescribing physiotherapy with a person for whom I acquired great respect, Mr. Bebs.

Then one day, as my mother and I were coming back from shopping and I was slowly walking home, I collapsed on the street. My legs just simply gave way under me; I could not feel them or move them. It was as if I had no legs, as if the legs that were attached to my body were not mine. My mother asked what the matter was and when I tried to explain, in between sobs of fear, she did not understand and tried to haul me up. But as she tried to drag me on I  could still not move my legs, and my sobs of fear became screams of protest. She then realized that something was seriously wrong.

I was admitted to hospital very soon afterwards and an angiogram, among other tests, was performed. I do remember that one to this day very clearly, and I recall the terrible agony it produced, although I was told that there would be no pain and I should not be frightened. I learned very quickly to believe the opposite when doctors or nurses tell you that something will be painless. Occasionally even now I wake up in the night, dreaming about that particular test and actual waves of pain travel down my back.  Apart from the tests, the stay at that hospital was not unpleasant in the beginning.  The children’s ward in the University of Chicago hospital was very modern and quite luxurious. Each patient had his or her own room, a private bathroom, and a TV in the room. In each room was a comfortable chair that could be converted into a bed, so that one of the parents, usually the mother, could sleep there.  Each patient was assigned a nurse who looked specifically after the respective patient. My nurse was changed after she did not answer a call from me when I needed to go to the toilet and could not get up. The outcome of her ignoring my call was inevitable and I was very upset. Then I was assigned a very fat nurse who was extremely kind and always in good humour.

There was also a big playroom with the most advanced toys a child could dream of and one was allowed to spend most of the day in there. For those children that could not get out of bed a special lady would come once a day to play with and/or give them lessons.  At the beginning I was able to get around the ward in a wheelchair and I recall that one evening as I was rolling around the corridors, peeping into my friend’s rooms I arrived at my next‑door neighbour. In the room was a young girl, whom I got to know a bit, and who was connected to an electrocardiograph. I used to like to watch the regular electronic waves making their way across the screen. I stopped that one evening to watch again, when suddenly the regular movement of the waves stopped and the pretty waves turned into an ugly straight line. It had to be explained to me what had happened when the room was being prepared for a new patient the next day.

Thus, I spent my first few days in hospital, with tests, visits from Mr. Bebs and playing, and  asking all the time when I could go home.

Then my parents were told the results of the tests and the reason of why I could not walk or feel my legs. The hemangioma, which could not be removed in Prague, had grown, and was now pressing on my spinal column and the nerves in that region, cutting off any nerve‑ impulses to the part below that region. One more test was set out, for this one I would be under general anaesthetic because a microscope was to be used on my opened back. I remember the anaesthetic gas choking me and how I was trying to push the mask away. Then nothing. The supposedly fairly quick test, however, turned into a  ten and a half hour operation. The result of the test showed that it was best to operate and to remove the tumour as soon as possible. During the operation my parents were told not to be too optimistic that I would survive. Yet another time my poor parents had to grapple with the idea that one of their children was going to die.

I came to from my anaesthetic, my brain was in a hazy daze, and I had the impression I was in a room where the surgeons were changing, some were still in their bloodied gowns, others were stark naked. I doubt this was true, either I was hallucinating or had an out of body experience. I was lying on a trolley, on my stomach, not in any pain but totally confused. I did not know where I was, what had happened or who I was. Only when I was wheeled down the corridor to the  intensive care ward, and saw my parents, did it all come back and I started to cry out for my mother. I spent a number of days in intensive care, and I remember only two things from those days, one the intense pain I was in, and that there were no windows in the intensive care room and all I wanted to see was some daylight. The urge to see daylight was getting so strong that I was becoming hysterical, and no threats of more injections if I didn’t calm   down helped. At last my surgeon decided that I could return to my own room, I was happy at last there would be a window, and daylight. Where we were in the intensive care room one didn’t know whether it was day or night. As I was wheeled into my own room I looked out of the window in anticipation….. and it was night‑time,  a dark night, and absolutely no light. That was the last thing I could take, and I became very upset, so much so that they did have to start me on some kind of injected tranquilliser. To this day absolute darkness still makes me uneasy.

Until the second day in my own room I was connected to a saline  drip and  not allowed to eat or drink anything, The first thing, when I was asked what I wanted to eat and drink was a “7‑up” and  a hot‑dog. They did not have hot‑dogs on their menu that day, but one of the nurses went to a local hot‑dog vendor on the corner of a street and proudly brought me  my desired hot‑dog!

The days passed slowly, I had to be cajoled and forced to exercise by Mr. Bebs. I did not want to move for every move was hurting me. But my respect for Mr. Bebs and his patience got me moving a little. The other major disaster for me was when my stitches had to be removed. I could not stand anyone touching my back any more. I had to be pinned down so that they could remove the many stitches.

The tragedy of it all was, however, that although they tried hard and operated for a long time, the tumour had to remain. It was inaccessible to the techniques of those days. Present day surgical  technique would use a laser‑beam and had those techniques been  available then, my spine related problems might not have developed.  But in those days laser‑beam operations were not used.  All they could establish again was that the tumour was benign, and as time went by, more pressing medical situations developed, as I contracted infections, and the tumour was partly forgotten.

After many weeks I was allowed to go home at last, and to start up school again. However, I could not walk very well. It was at that time that my parents decided definitely to return to Europe. We were also supposed to go to Florida as our last trip in America. Meanwhile my tenth birthday came up, and I had a party. It is characteristic of the kind of life I was then leading when all my birthday‑party guests were adults. These consisted of my teacher, the Catholic priest, Father Malcolm, the nurses from my recent stay in hospital, and an old family friend, Uncle Lonjka. I was extremely fond of Champagne at that age  (and still am), and Uncle Lonjka, brought me as a present three crates of champagne, two white and one pink. He poured for me all the three different kinds  of the sparkling wine into three separate large glasses.  At that point my parents made one of their biggest mistakes. They told  me I would not be allowed to drink the three glasses of champagne, so, instead of sipping the wine slowly and over the period of the whole  evening, I gulped all three glasses down while my parents were not  looking. Walking was never so easy for me as that night! However, this escapade had dire consequences. My already malfunctioning kidneys could not cope with the sudden onslaught of alcohol; the next  day I woke up with high fever and a serious kidney infection. Our trip to Florida had to be cancelled.

While I was recovering from my first drinking bout, my parents  were getting ready for us to move back to Europe.  So in the summer of 1970 we moved yet again, this time to Holland. We flew to Holland, and it was my first flight. I still had some fever and was not fully recovered, but nevertheless I enjoyed my flight very much. We said goodbye to America, to my aunt, and to newly made friends. I was excited of going somewhere else but I was unhappy at leaving as well. Another home, another language to master. And although I didn’t know it then I am now certain that I left very good medical care to come to the worst medical treatment I have had. My parents haven not been back to America. I have since then returned for a few days to New York, and it was a little like coming back home.