The Little Knights Page 14

group of ten to twelve each year. It will be slow, but the best we can do. But what to do with the first group? As nicely tuned to each other as we have became, it will not be easy to say goodby. Can we just say: now we are through and good luck to you? Impossible, since we now know the advantage of these meetings. We were convinced that somehow we ought to continue. And again, a »good fairy» came to rescue. I spoke about our experience at a meeting and a colleague, balneologist, stood up: «I would like to help these youngsters. Let us talk about them continuing their rehabilitation at our spa«. And so it happened. They went to the spa, all twelve of them voted »yes« at the last meeting, but all could not make it, a wife was sick, another trip was planned before, so the group was incomplete. Nevertheless, it was a success. Mary, for instance, had never before been on vacation, much less in a disco. Everybody was happy with the program, swimming, cycling, dancing and generally having a good time. We met back at the Institute after they returned and could register their satisfaction. Together we concluded thet the goal has been met, that the meetings were of considerable help and that the best of all was the group vacation at the spa, where they became much closer to each other, real friends. After this year a lot has changed in the lives of these youngsters. Their self-esteem rose, they helped each other in many ways, they coped better. They now knew very well, that in us and with us they will always find friends, willing to help. We decided to continue with the routine group meetings through the year and wrap it up with a vacation in a spa for ten days of rehabilitation and consorting. That would be our future »model«.

  Each year a new group is »formed«. Up to twelve youngsters are invited, mainly

  those with whom we already broached the subject during their visits at the Institute of Oncology. Some, with jobs already, living far from Ljubljana, were skeptical, even as they expressed the wish to participate. Others were prevented by their school. There were also some, who said, up front, «I am not interested«. Unfortunately, those were sometimes the very ones who could benefit most, or so we reasoned. This was especially likely to be the case in those, who did not wish to be included in the follow-up program. Sometimes this was refused by their mothers who did not wish for either themselves or their »child« to be aggravated by visits to the Institute of Oncology. They wanted to forget, but, as I have said before, it is not so simple to just forget whatever was bad or painful in early childhood, it is our reality, our experience. These wounds heal better in company, even if sometimes they heal on their own as well. Nevertheless, each year a new group has been formed, this year we are organizing the eleventh one. We are convinced now that these meetings benefit us as well as our young friends. We still get surprised by the wisdom of someone's reflections concerning his experience with the disease, treatment and the everyday life afterwards.

  Some of the youngsters from afar are still driven in by their mothers, who may also provide us with insights. The mother of our Branka, for instance, said: «Branka is another person since she is going to your meetings. Before, she did not budge from home. Now, she has friends and a job«. Branka is quite handicapped by the disease. Extensive surgery has left her without one eye and with an asymetrical face. She acquired friends within our group and truly changed her life. She is abroad at the moment for plastic surgery which in the past few attempts was not very successful. Let us hope it works this time and that her improved appearance will help her to lift her low self-esteem.

  A letter from a mother: »What I have learned from my daughter«.

  Since the success of our meetings is not easy to evaluate (with tests, numbers and diagrams) other than subjectively – and prone to bias – here is a letter by a mother about the effects of our meetings:

  »Addressed to you, but aimed at all of you who took part in yesterday's meeting and conversation.

  What I have learned at the side of my daughter is that improvement comes in small steps and that one may have to wait for years. You probably didn´t think that yesterday's yield was great, but in my opinion the change in Jana was such that it outweighed the quantity. We, Jana and I, talked late into night and she was happy and smiling just as before her illness. You need time, lots of time, to muddle through this and to see something ripen within yourself. We have been talking for two years, angry at times, disgusted at others, with her under the impression that nobody likes her. Finally, that doctors are human, that a fresh outlook is necessary and mainly, that nobody wishes ill to anyone else.

  Perhaps we go through different stages at certain ages. This can cause doubt and difficulty all around us, yet we overcome these once we mature within ourselves, sooner or later, when we cease forcing the issues and become tolerant. Jana will still need me at times, to listen to her and to exchange some ideas, but she has struck out on her own path which is agreeable to both sides. Children can never learn as much from us as we can from them and you, having to do with so many children, will come to know many wonderful worlds. I wish you all pleasant and fruitful conversations and to each of you a pleasant and nice day, full of small joys. What you are doing is right and worth the effort.«

  We continue to meet ...

  Each meeting opened some new »topic«. The experiences conveyed by these young people were doubtless unique. Some of them have been emotionally enriched for life by their growing up during their illness, their relations to doctors and nurses, to their families and their new outlook on life itself. Others have been suppressed in their ambitions. It is up to us, the »experts« to sort these things out.

  We have discussed on several occasions the relations between brothers and sisters. It was mentioned, that their siblings felt, well into adulthood, to have been »sold short«. They say »You always get more«. Ana, a twin, spoke about the problems with her mother and her twin sister Jana. This sister enjoyed quite a bit of attention from the doctors since, as a twin, she had to undergo a series of tests herself«and all that on account of you«. The twins are unlike each other, Ana is more subdued and has always been in the shadow of the more vivacious Jana. She didn´t want to go to the same high school as Jana »just to be rid of me«. They also pursued different courses at the university. Still, they are good friends now and Jana says she knows she was dominant and »horrible« towards her sister.

  Iva and Lina. In one of the groups we have had long talks about »being different«. Two young women took part. Both have had an eye removed because of a tumor, one at two years of age, the other at six. Here it began: Iva, the first one, maintained that the loss of an eye is actually of little bother to her, she has been like that since she remembers and cannot imagine herself any other way. She has never permitted it to be said that she is somewhat inferior. Her being different she blames more on her family circumstances than on her illness. She was unwilling to talk about her family, but she refers to herself as «being different» when talking about her voluntary social work and people she meets there. Through this she also received a scholarship to a summer school in the USA. The candidates had to write an essay about themselves and she turned in a rather good one. On her returning from the States she had a lot to tell about the school, colleagues, teachers. She continued to be good at her studies, though, when in difficulty, some emotional problems could be perceived.

  Lina is totally diferent from Iva; depressed, shy, lonely, unhappy and very angry. She is bothered by her looks, saying that people are «pointing their fingers at me«. When quarreling at her work, she remains angry the whole day and night. When they have forgotten it all, she is still angry with her co-workers. «I could bite through their neck«. At times, she withdraws for a whole month. To-day she is cross with her father, who mentioned that he might not be able to pick her up after our meeting. Her father lets her use his car though she is shy of driving ever since she almost caused an accident. She is sure she will never be a good driver. It was like that in the school, too;she did pass the tests but was convinced that she knows nothing and relied on cheating.

  She is past twenty now, has not been able to ent
er into closer relationships with boys, who, on the other hand, seem to be quite interested in her. She cannot accept her altered looks and would not believe that a man can accept her as she is. She does not dance, does not like »the crowd«. She did go to a dancing school for a while, but »was always afraid that somebody would actually ask me to dance with him. So I quit«. She hopes never to fall in love, if she is physically attracted to somebody, she does not want to see him any more. «How can I believe that somebody would like me when I myself think I am ugly? «. Iva, on the contrary, is quite pretty, the artificial eye is hardly noticeable.

  Iva has always cheered her up at our meetings and Lina still admires her for it. Several years have passed since these meetings, we see Iva only rarely while Lina still takes part in our activities, has friends from their rehabiltation time at the spa. We have met a few days ago. «How are you, Lina? « »Better, thanks, since I have made friends in the group meetings and camps my life has turned around 85%«. Who would not be glad at such an answer?

  The problem of infertility, which we have found in over