children-invalids of war and their human rights. The story was told by a psychologist, talking to Bosnian children about the horrors of the civil war there. There was this 12 years old girl, both her parents, a brother and two sisters were killed. She refused to talk at all, after several weeks of gentle persuasion. She was quiet, depressed, hovering in a corner of the room, never went to school or even out on the street. When she was finally able to describe the bloody events she has witnessed, she said: »Only now I know, that these things really happened. «After a few more days, she was back at school.
We have to walk through the fire,
be wounded somewhere and bleed,
to reach the murky bottom,
to grasp the essence of it.
(Ivanka Glazer, Glitters in the Twilight, 2002)
Notes from our group meetings.
I am leafing through the notes of our first group meetings. Eight years have passed since then. We had invited 13 youngsters, 10 accepted and came rather regularly from then on. I know all of them well and we have become good friends. We first introduced ourselves, who we are, what we are doing and they all told, briefly, something about their experience with their disease and with the treatment. Here, at the first meeting some of the issues surfaced already, we later debated in more detail. Naturally, some of the attendies were more talkative than others. They were evidently pleased with our first meeting and I don´t think only with the snack, provided by the Institute of Oncology and organized by our nurse Janja. They all came back next month, they were waiting in front of the building, talking animatedly among themselves though they had not known each other before. Good mood and curiosity was in the air, expectations of what to-day's meeting would bring. It struck me that they are looking forward to seeing each other because it may have been the first time for many of them that somebody listened to what they had to say. The first time that somebody showed interest in their experience, troubles and thoughts. And, they have already overcome something, at the first meeting: the fear of public appearance. Clearly, most have been somewhat embarrassed, when their turn came to tell their story. At the second meeting we discussed several problems, «labelling«, as one of them called it, among others. Mostly, labelling has been a negative experience for them, people avoiding their company, some of them being forced to repeat the driver's test each year. Dragica was refused a driver's licence, she didn´t know why. We agreed that our psychologist would make inquiries and, hopefully, clear the matter. For some of them it was something positive, it translated into «favoritism«. For instance, they were freed from gymnastics at school. But they all were of the opinion that »labelling« is unjust and wrong. Bojan had no such problems. He surprised us all: «I think my inner development (here he poins to his heart) is retarded, I am not grown-up in that respect. «He admits to some problems even before he fell ill, has always loathed shopping or asking for assistance, has always avoided people as well as public places, but thinks that this weakness of his has got much worse with his disease.
He also told us that he would like to join the army, since »otherwise I am not a man«. Jaka protested strongly to that and gave a short lecture on the subject: «Manliness is not just physical strengths. Jaka mostly held the podium. He lectured us on his opinion that »nobody is perfect and we all need more education«, was greatly admired by his male peers, and also told us about his successful job »selling vacations«, trying to sell some to us on the spot.
We had some words about possible partners. Tomi confided to us that he has a serious girlfriend. We asked whether the girl knows about his childhood brain tumor. Yes, he had told her and it did not influence their relationship, but he had been a bit shy in the beginning to talk about his disease. He had had an unpleasant experience with his first girlfriend, who left him after being told the story. In his opinion, that girl was too young and not serious enough and he heard from us that such a thing can happen to anybody, any time. «Without unfortunate love, there can hardly be a true love« was Jaka´s comment.
Everything looked rosy at first, especially with Jaka, who, however, was the first in trouble. He really staged a drama for us.
Jaka is a wild duck. He was 13 when first treated for a brain tumor and was 26 when he joined us, was already divorced but had a son. Our psychologist wrote after first interview. «He shows a pronounced wish to be noted and, especially, to be warmly accepted«. Five years later, he added: «He is also sly, hostile and aggressive«.
Jaka was obviously comfortable in our group. He asked for help with his small attic apartment, which he had obtained with our help to begin with, but was in need of painting and heating. We promised.
At our fourth friendly meeting we were talking freely and friendly, when Jaka burst in, waving a newspaper that accused him of a crime. Naturally, he was again the center of everybody´s attention. He explained that there was a fire in his apartemnt and that the whole house burned down. The paper also reported that Jaka had behaved aggressively and was conducted to the police station in cuffs. His former wife testified that Jaka poured gasoline around the apartment and set it on fire. Then Jaka vividly told his side of the story: «alien powers were at work«, he spoke about rays, light, voices, less and less coherent or convincing, which he finally realized himself. Finally he asked for help in being admitted to the psychiatric hospital. ´While our psychologist considered him basically sane and responsible for his actions, we others all took Jaka´s side. All the youngsters expressed a strong wish to help him. We were all asking ourselves to what degree Jaka´s tumor contributed to the events and to his losing control of himself. We were sure that even though he might be responsible, there were certainly mitigating circumstances. I promised to have a talk with the psychiatrist on call at the hospital. He was examined the same evening, admitted to the psychiatric ward and treated there for several weeks.
At our next meeting Jaka once again dominated the conversation, naturally, telling us all about how he has been »in custody« in the closed ward, which he, naturally, didn´t like at all. He now lives with his mother so that his sister »has to sleep on the floor«. He would like our help with another apartment. He is on five different pills because of his nerves, the case in court against him is still pending and he would prefer going back to the hospital. Three apartments had been ruined by the fire, but Jaka doesn´t feel guilty, though he had a few beers that night and »lost his compass«. His wife has promised to testify, that he could not have set the house on fire because the matches had been taken from him before that. He would not be able to stand the prison and would rather take his life. Surely he is in dire straits now, also without a place to live. Again he would like an attest that he needs a place with heating and warm water.
In spite of all this Jaka still came to our meetings that year, silent and depressed, explaining that he is »full of pills«. He is still in the closed ward of the psychiatric hospital, feeling »lousy«, not seeing any sense in living on. He is still due to appear in the court of law. Well, finally, with some help from our side, things have settled down a bit, he even moved into a new apartment and calmed down a lot.
Alas, other problems emerged. During the past few years he had to undergo three surgical interventions for recurring tumors on the membranes of the brain, the consequences of previous irradiation. Even if the tumora are not of the malignant variety like was his »original« one, operations are not entirely harmless. Furthermore, there was also a tumor in his thyroid gland that had to be removed, not cancer but still. Thus, Jaka was busy with his health and treatment, seeking also our help and support. Each year he took part in our rehabilitation program in a spa, with a group of our youngsters. We have been quite busy with Jaka. He certainly needs our help with all his problems, including those with his health. I have to add here, that we are not doing this out of pity alone, Jaka can be quite charming in his way. In spite of his poverty and his problems, he has always appeared with flowers for me, or for nurse Janja or for whoever was on duty at the time. He is somewhat special, als
o holds a special place in our group, not only as a patient, but as an old friend. In spite of everything he has our respect and this is his doing more than ours. If he is sly when necessary, we don´t feel it when he brings flowers, we are always glad. Undoubtedly he needs us. Can you imagine how he would fare without us, doctors and friends and fellows encouraging him at every crisis, of which he has had several each year. Certainly he is better understood here than in his own milieu, no doubt that here people are more tolerant of him. Jaka is a personality. Knowing him and living with him we, as well, have changed a little bit, are perhaps a little more tolerant, uderstanding, positive, because of his experience. And this is one of the aims of our meetings. As always, Jaka has played the main role also in this report about our meetings.
And how to go on from here?
After ten meetings of our first group and when the year was nearing its end, questions arose again. What now? We cannot just continue with this small group, when we have about five hundred others, also in need of such meetings. We cannot invite all at the same time, either. It will have to be done gradually, a new