Chapter 7 Holland Part 2

The Mytilschool in Leiden, as I mentioned earlier, put much more importance on the physical side of things than on the academic. In many aspects this was good, yet in my case even this was not enough to prevent my back from developing a pronounced kyphoscoliosis. Although I had physiotherapy three times a week, not much was demanded of me, by far not as much as in America by Mr  Bebs. I had a very easy time; it seemed that it was more important for the child to enjoy itself rather than to get better. There was a prevailing attitude of; “The poor child has no meaningful life, why bother, let the child enjoy the short and little life it has”. I suppose that in some cases this kind of attitude is justified, but many disabled people live for a considerable length of time, and many are miserable because they know they are not using their full potential as a human being.  This, I must stress, is my point of view gained from my personal experience.

Well, the physiotherapy was insufficient and the curvature of my spine continued to get worse, at the same time my left foot started to bend inwards. After many persuasions from my parents, my orthopedic surgeon was prodded into some action. I was to get a brace for my foot and a sitting corset‑chair would be made for me.

I hated the idea of wearing a brace, and it did not help that my able bodied friends thought it looked stupid. There was also an inherent fault with the foot‑brace as my   foot kept slipping out of it and very soon I abandoned wearing the brace, to the distress of my parents.

The corset‑chair, was an even greater failure. It took so long to make, more than a year, so that by the time I got it I had outgrown it and sitting in it would be detrimental rather that corrective. Also by that time I was in the ‘normal school’ and would have refused to use it in the classroom. At that time I tried very much to be as normal as the other children and hated anything that made my handicap more obvious.

Thus my back got worse and worse as I grew on. And my orthopedic surgeon would not budge and did not demand a second opinion.

Meanwhile, I enjoyed my newfound friendship with Ellis to the full; after the first three steps that I took in Switzerland, I started to improve very slowly, I didn’t become so easily tired and could enjoy my life more. Ellis would take me anywhere and everywhere, either in the wheelchair, or on the back of her bike, or on a cart we made from old baby‑pram wheels (with the help of my neighbour). We travelled many miles like this and enjoyed many adventures. For example, grass had not been cut on a council field that was open for the kids to play on. The field was very large and the grass has remained uncut for a very long time. It was about a meter high.

We got there via the wheelchair, and then crawled through the grass, so that no one could see us, and we could not see each other either. The only communication we had with each other was through a pair of  walky‑talkies I had from America. Another time in the same field we had a real adventure. Ellis and I, and some other friends, decided to climb over a fence into the field with cows, I do not remember why. Although I could not walk more than a few steps with crutches at that time, I could climb very well, and so, not to be left behind, let myself into this prohibited land as well. Then to our great distress and horror, the cows took offence in us invading their privacy, and all the large animals turned round to face us. For a while we and the cows (some had horns!) stood still and faced each other. Then charge! The cows ran towards us. In panic my friends ran to the gate, apart from Ellis, who stayed with me. We knew I could not make it to the gate before the stampeding horde of black and white cows would be upon us; there was only one thing left to do, Ellis half dragged me to the nearest canal, and we jumped into this green  dirty, stinking, still‑standing muddy water, and made our murky way across to the other side. The cows did not follow; they were not stupid. They stopped near the canal and mockingly mooed at us.

As I became stronger and stronger, Ellis and I got up to more and more mischief. Although I still used the wheelchair, for I could not walk for long, I relearned to bike on a normal two‑wheel bike and nothing and nobody could stop me from doing  daring things, like climbing out of the first‑floor window, that I would not dare to do today. But then it was a new found freedom and it compensated for the fact that I could not walk let alone run about like my friends.

One day I declared that I wanted the same bike as Ellis and that I would bike again. My parents were willing to let me try and the bike‑shop in Wassenaar allowed them to take a nice new bike home, so that I could learn, before my parents would buy it. Full of anticipation but at the same time trepidation I sat on the back‑carrier part of the bike as from there my feet could reach the ground easily. From this position I could bike with ease, but if I got up on the saddle it all seemed too high and I felt very unsafe. But my parents said that they would only buy the bike on the condition that I would learn to bike normally, sitting on the seat else the bike would go back. I was left alone in tears thinking that the beautiful bike would never be mine. But Ellis and her mother came to the rescue, and with the threat that my beautiful Peugeot bike would  have to go back in my mind, and with the support from Ellis and her mother I quickly mastered my fear and how to get from the backcarrier to the saddle and paddle around happily. I was allowed to keep my bike. And later used it as my main transport to school.

But before I even could bike or walk, my parents decided to take up their favourite sport, skiing, and saw no reason why I should be left out. After all I skied before, and if it did not work I could always be taken around on the sledge. So we went of with our good friends to Austria to a lovely skiing resort called Zell am See. I was very excited. We arrived on a train and stayed in a pension near the cable cars going to the two main mountain skiing “pistes” (runs). One mountain was 2014 meters high called Schimmtenhohe, and it always had beautiful powder snow. The other mountain top was less high, called Sonnealm but it had, as the name implies, lots of sunshine. At that time the pension was small, and fairly basic. We became friends with the owner and my parents, the Czech friends and Frou Renate would spend many happy evenings drinking a bottle of wine in the hall‑way, while we children were asleep. Nowadays this small pension has developed into a five‑star hotel with such amenities like a swimming pool and a sauna. But the nicest thing is that the owner has stayed as friendly as ever, although there is now no time for a leisurely evening in the hall‑way.

My first skiing attempt did not meet with much success; with trembling legs I stood on tiny skis holding tightly to the poles which were deeply implanted in the snow. With encouraging words from my parents I at last carefully lifted the poles out of the snow and tried to slide down a small bump, which seemed enormous to me, but I soon fell into the soft snow. As I found that it did not hurt too much to fall into soft white snow I became more daring but that year, I must admit, I did not ski much, although it did give me a good feeling to be able to slide down a few meters on my own two feet before sitting down. And we all decided to keep returning to Zell am See to ski. Later skiing became one way to enjoy some speed and freedom on my own two legs.

At the time we were in Zell am See, the World Cup in skiing was held. Some members of the world teams stayed in the same hotel as we did.  I and the children of our Czech friends, got reasonably acquainted with the Canadian team. I became friends especially with David Murrey and Ken Reed They were very nice, we used to tease them and they used to tease us; I remember we used to play practical jokes on each other.

It was with great sadness that we returned ‘home’ to Holland. I loved Austria, as it reminded me very much of my ‘real home’, Czechoslovakia. The food is very similar, and apart from the many Czechs living there, the Austrian people have many similar traits, both bad and good, with the Czechs. I also loved the mountains and the cosy cottages comfortably nestled on the slopes protected by the huge mountains. So, with the promise to return to Austria, I was taken back to Holland.

For our summer holidays we started going to France. The first year we went to Brittany. We were there longer than we anticipated, for our new car, we had switched from the nearly traditional Skoda  to a Citroen,  broke down and the spare part we needed was difficult to get even in France! Thus we were in Brittany for the feast of St. Anna. This was celebrated by a huge procession in local traditional costumes and a fair. At the fair, I liked the look of a toy and wanted to buy it, but, rightly so, my parents would not give me the money. Suddenly, while I was trying to persuade my parents to buy it for me, a stranger brought it, turned round, and with very few words in French, thrust it in to my hands and walked off.

This was the first, but not the last time, that complete strangers would give me small presents or buy me drinks. On occasions they would explain their action; and usually it was a sad story of someone having a child that was disabled as well and more often than not had died.

Another wonderful part of holidaying in France was that as I was so terribly thin, the managers of the restaurants we dined in, assumed I would not eat much and proceeded to give me free meals; anything I liked. The best meal was provided for me in Saumur, where I had a five‑course dinner for nothing. Unfortunately, although I am not exactly fat, this does not happen anymore. When we recently returned to Saumur, we tried hard to find the same restaurant; but it had gone out of business, probably because of this exceptional hospitality. A great pity.

That year was a very exciting summer anyway, as my sister was getting married. She was about to marry  an Englishman, and I promptly fell in love with him as well (I was 11). I was the bridesmaid on this grand occasion. And a beautiful marriage it indeed turned out to be. The weather was absolutely marvellous, not a cloud in the English sky. She married into a fairly large family and I was very happy with this extension of our family, as I gained four sisters‑in‑law and a brother‑in‑law. One of the sisters was an ardent horse‑rider and the family owned some horses. I was allowed to sit on a beautiful large brown mare, and decided that I was going to start horse riding, for then I could move fast and go nearly anywhere I liked. I would go to places where one could not get with a wheelchair; I would be free of the dependence on wheels that had the tendency to get stuck in sand and mud. I dreamt of galloping on the long beach along the North Sea in the place we lived  in Holland, in  Wassenaar. I dreamt of going through the endless dunes that line the coast of Holland and I dreamt that ultimately I would go and ride a horse in the wild mountains of Canada. But all this was not to be, because my surgeon and other doctors absolutely forbade me to even mount a horse. It would be apparently very dangerous for the structure of my spine. Even to this day I am not allowed to ride a horse.

So, I was still stuck in the wheelchair, depending on other people to wheel me around, unless it was a short distance. I hated to be so dependent on other people to get from one place to another, and especially when we went shopping, it was sheer torture. I would want to see one particular shop, and ask to be wheeled there, but usually my parents would be talking to each other, way above me and not hear me. I would have to repeat the request, then by the time they would have heard me and registered what I said, we would have long passed the shop and I did not bother anymore. Also if the shops and street were busy, it would happen that my “pusher” would not be concentrating on where he was going and on the pedestrian traffic and drive into a person, who then could not help but sit unexpectedly on my lap. After one such harrowing Saturday (the national shopping day in Holland), when a very large lady ended up in  my lap, I decided that this wheel‑chair business had to end. I would have to get up and walk. Thus to the great amazement and against all medical predictions I started walking, just like that!

Well, it did take some time and a great amount of effort, but for someone who was told she might not live and let alone ever be able to walk, it seemed extraordinary easy once I made up my mind. For a long time the wheelchair had to accompany us on our journeys for I still could not walk long distances, but that improved with time and now I hardly ever use a wheelchair unless one of my legs is in plaster, as indeed did happen a few times. I was told that I  might not survive, that I might never be able to move my legs, that I would definitely not walk again…now on good days I can walk quite some distance and ten years ago or so I could do a long hike in the Scottish hills or the Pyrenees.