The Little Knights

patients, seen and treated daily, these young people seemed a real luxury. Some colleagues reproached, quite loudly, that we are wasting our valuable time on healthy people. But soon they understood, how these »healthy people« are in need of help. Those colleagues, on the other hand, who have not had a closer look at our work, need persuading about its importance to this day. It did not help that we were among the first in our field. The data we at first surmised and later proved were not yet available in the »foreign litterature«.

  We have not relaxed ethical principles in our work, which had to be approved by our ethical commision. Among the ethical principles in work with cancer patients are: respect for the patient, commitment to do the best for him(her) and to minimize any possible damage, thus achieving the best result with as low a »cost« as possible. Selecting individuals for investigations has to be fair, based on the problem and not on, for instance, our ability to locate or persuade the patient to co-operate.

  We have learned a lot and were able to help many with what we learned. We continue to learn from these young people both how to cure their ailments and how to consider their emotions. Their experience is unique without doubt. Some have been enriched for life by their growing up with the disease, their relations with medical personnel, developments within their family, by their gaining perspective on the meaning of life. Others have become hampered in their strivings. It is our professional duty to understand the consequences left by the disease and its therapy in each individual.

  My first interview.

  Jernej was the first who answered my invitation in 1986. He still holds a special place in my mind. Not because he was the first, nor because he was so likable, but because he projected for me a lot of what I observed and learned in later years and could use in helping those in need of help. Admittedly, my impression is different today from that time, when I knew very little about what is going on in the minds of those who survived cancer in childhood.

  I am also a bit disappointed, I have not heard from him in years. Yet, at the time I fancied we were friends forever. Our interview from 1986 is 4 pages long and I shall print it as it was, perhaps you will understand.

  Jernej was 20 at the time. In 1973, when he was 7, he was treated for a tumor of the right palm, his right forearm was amputated. Three years later there was a suspicion of secondary tumor to the lung, but it turned out to be pneumonia only. He was followed regularly at the pediatric clinic, the tumor never recurred.

  Facing me is a handsome young man of 20. He is rather delicate and really pleasant to look at: open face, blue eyes, curly dark hair, a broad smile. He feels »perfect«. Apologies for not coming earlier, lots of work at the university. He is studying sociology and Slavic languages, has no problems with studies or with his health. No evidence of anything wrong on physical examination.

  My questions are not orderly, since Jernej is the first interviewee.

  Evidently he gave some thought to my first question before I asked: what was his reaction to the loss of his forearm? «When they took it, I was not aware of anything in particular, you know, because the feeling of having the limb remains in a way. Strange feeling came because I felt that I still had the arm. I remember clearly how I »carried« the spoon to my mouth and then it did not materialize. Obviously I just did it in my mind. But I soon learned to eat with my left hand. Another difficulty emerged at gymnastics. After the hospital I started grammar school, first class. And immediately joined gymnastics. When I slipped or lost balance I tried to catch myself with the right arm, which was not there, and so I fell repeatedly. But I got used to it soon enough. I also soon learned to write left-handed. It was a bit difficult when I had to push the pencil instead of pulling it, making smears. But I soon found out how to hold the pencil a bit obliquely and writing was no more a problem. Thus, physically, I hardly noticed anything wrong. Even in sports I could participate more or less as before, have been skiing since I was 4. In 1980 I applied for entry into a skiing competition among the handicapped. The organizer told me to be ready in 14 days, I was a bit worried, but at the contest, it was in slalom, I finished 4th in the field of 30. Once I became a champion among them, in the group using one pole only. I had a good time in that group. Mainly I was glad to see others, becoming totally different people after being some time in our company, talking about this and that and all the troubles. They began to enjoy the company of their equals, felt equal and were happy and delighted to join us next year again. It was very good to see how people can change for the better.

  I have never felt discrimnated against, never felt inferior. True, I was lucky in my class in school. It was a fine class, I enjoyed talking to my mates. They never made me feel different for my lack of an arm. There was a slight disappointment when the time came to go to high school. I always wanted to study something related to electronics. I went to the school on the »orientation day« and it went fine. Later, however, the director called me and asked what is the idea, you need both hands to work with us. I felt aggrieved, talked it over with my brother, who has an M. Sc. in electrotechnics, he talked to the director and the director changed his mind. But so did I, due to the director's previous attitude. I chose social sciences and, again, was lucky. A splendid class of six boys, mostly artists by inclination, music lovers, great for discussions, feeding my own artistic ambitions. I have been performing in the theater, since my second class of grammar school, was always attracted by poetry and beautiful prose, therefore I later studied Slavic languages. Once we decided we, all six of us, would write a poem, but then I thought, what if I do it on my own? Thus started my career as a poet. Tomorrow I am reciting a poem of mine at a festival of local cultural organizations, it will also be published in our local newspaper.

  As far as my puberty is concerned, I think it is done and over with. As far as I know it was not a difficult time for me. One of the problems I have, being one-armed, is, that I cannot always do what I would like to. I would like to help my parents, elderly farmers. During summer, I can run the tractor, but during the winter it gets more difficult, shovelling snow for instance is impossible and I am sorry for that too.

  I always got along well with my parents and my brothers We are a large family of six. My parents are religious, while I myself have not figured it out yet: I do not know whether I am religious or not, but I do like to attend religious instruction. I feel well there, it is both interesting and fun, it is easier to talk to my colleagues than at other meetings. Also, there is no pressure to talk about God or not, to believe or not.

  Asked about girls he says: »I cannot say I have a girl, though there is one with whom I get along very well, alone or in company of my friends. It is more difficult when we are with her friends. She is 17 and I think she might be ashamed of me in front of her friends. Perhaps they would reproach her for not being able to get a boyfriend with two arms. Yet I am not particularly unhappy about this. I was at a carnival dance yesterday and had a very good time, lots of conversation, not feeling inadequate, loving everybody. Everybody seemed good, friendly and interesting, I liked the company throughout the evening.

  It was only a short time that I felt hatred and envy. Whenever I felt that toward somebody, I tried to sit down with him or her, talk it over and telling what I do not like.

  Do I really love this girl I talked about? Hard to tell. I do not really know the difference between liking and loving somebody. About this girl I think I can say that I like her in a different way. I can write a song about her any time, without inducement. Just thinking about her, I write a poem. With other people, a poem comes to my mind if something interesting happens, yet I also like other people.«

  I ask him whether he was afraid of his illness, perhaps of death. «Afraid? Yes, I was afraid of needle biopsy of the lung in 1976, when they thought I might have metastasis. I have never thought of myself as being seriously ill; I have always felt healthy and normal. I remember always having a strong wish to live and enjoy life. I wanted to live, there are so many things yet to see an
d taste. Only once have I pondered about death, that was when a colleague of mine died of a similar disease. He was older than me; maybe five or six, but not more than ten years older. I was visiting him two days before his death. He was about to get married and he gave me a poem of his to read. It was a very short one, I assumed it was about his bride- to-be, but it struck me as a premonition of death. Just the two lines,«There are two of us, but you are one and only one« or something like that. That was when I thought about death, mainly of my friends. But I have never thought about death as a consequence of my own illness«. He would not talk easily about his illness or possible death. There will be further occasion for that, I think….

  After all this we became friends. He asked me to call him by his first name and I did. He also asked me for the address of his surgeon, to write to him and say thanks. I also gave him my address, he promised both to write and to visit again. I believed he could be of considerable help in our future work with former cancer patients. In a future group of parents or young patients facing amputation or similar surgery, he could contribute a lot in