The Little Knights

talk over the usefulness of our meetings, about the participants´ point of view, their numerous comments. Some were of the opinion that there is not enough talk about their disease, that too much attention has been paid to their general problems in life. Other than that, they were mostly positive. Evidently the year has been too short, a lot of topics were discussed only superficially. Still, meetings for this group had to come to an end, they were invited for the last meeting after their 10 days group rehabilitation at the spa. We were interested in the effect of this sojourn, would like to hear what they had to say, we were still accumulating experience.

  At this meeting, one month later, we wanted to hear their opinions about the rehabilitation program at the spa, what was wrong, what they liked, what could be made better. Right from the beginning we sensed that some strong bonds had created among them, to the extent that they would hardly need our professional help any more. Which was exactly what we had wanted to achieve. Though they had invited us, at their departure, to pay them a visit at the spa they now said it was better we didn´t. They were able to be much more relaxed. It would be more difficult for them if we were there »out of respect» for us. They were happy and full of plans for the new term at school.

  Late that summer, however, the news came that Rok died. We were afraid of how this would affect the members of »his« group. We invited them to meet and everybody came. How have they dealt with this? Would they again retreat into fear and anxiety?

  Many psychologists have lately studied fear and how to cope with it, as there are so many places nowadays where people live in constant fear for their lives. These studies show, that sharing one's fears is the most effective remedy, the other being to laugh!

  Some of them knew already of Rok´s death. Rado found out from our letter and thought it must have been an accident. Setka, of course, was depressed. She told us that Rok´s condition had turned worse in springtime, but had not been spoken about at home or with Rok´s parents. In spite of his being ill, Rok still studied, graduated from college and wrote a M.A.thesis. He liked to talk with Setka. She is sure that he was afraid of a recurrence all the time and she considered this wrong. Setka herself is not afraid of her disease, thinks more positively about it. But then she pauses and says: «Maybe he sensed what was going to happen«. And she also tells us that she had been »buried« by everybody when her leukemia became known. The belief is held in her region that those, »buried » this way, have a long life.

  Rado had shared the room with Rok at the spa. They got along very well, meditated together and also held parties in their room. Nobody can really accept

  Rok´s abscence, he was such a lively fellow, he was still dancing at his cousin's wedding in the spring, nobody had any thought of disaster. They all think of him as a happy guy, full of life and energy. Then they are suddenly silent, as if paralysed by the thought of his death, again seeing the ghosts.

  There was much talk about funerals, funeral orations, as if everybody had already thought through his own. Rado shared some thoughts on this: «Your whole life is about how stubborn you are deep in your roots, whether you swim against the current or let it take you with it. A time span always comes to an end. Birth, death and rebirth are connected. People tend to turn a blind eye to their lifes´s brief duration. I am often trying to talk about these things with my mother, who, however, refuses and shuts me out. «Rado is of the opinion that he has lived, ever since his birth, «on borrowed time«, that each day is a rare gift to him. He agrees with an idea he has read somewhere, about one´s mission on earth: »If you are still alive, you have not fulfilled your mission yet.«

  They all wanted to know about bone marrow transplants and, whether to tell the patient the full truth. So we spoke about that. The athmosphere was, I would say, natural all the time. I had the impression that these youngsters had already dealt with the idea of death and have accepted it in a more natural way than we, the »experts«, wh o preach that death is just a part of living.

  Before we parted, we even had a laugh, when Rado said: «We all want to go to heaven, but, faced with the opportunity, we would rather remain on this earth.«

  The friendships in the group are lasting, bound by the good and the bad that life brings to them.

  Who will bring me a time of laughter and joy ,

  Who will bring the spring for kisses,

  Who will caress my hair and give me a bunch of sunrays for my birthday

  When it won´t be worthwile any more

  To wake up to a new day?

  ( Mia Skvarča. A journey through a nightmare, 1992)

  Before there were group meetings and rehabilitation camps of the Little Knights, each of them was left to his own devices. Some have had a special talent, e.g. writing poetry. Mia had it and actually published a collection of poems. As an introduction, she wrote: »The birth of this collection marks the end of a long, dark period of living through a two-year tragedy, which at the time seemed to me invincible and hopeless. And yet, having changed my outlook on life and being totally prepared to face death, helped by the existential power of poetry, I was able somehow to extract from that Pandora´s box also a ray of hope, which has been waiting there for me. Victory followed, but not until recently has my ego been able to cope with the tempests of the soul, trapped in the chains of nightmares and bitter memories. Constantly encouraged by my friends I finally decided to let see the light of day the collection now in your hands. Enjoy it slowly and profoundly from the first poem, through depression to almost ridiculous agrresiveness of the following ones and to the final redemption of the last verses.«

  One of her friends (Jože Šmit) wrote these accompanying words: «Poetry has helped her and she wishes it would help others as well.«

  »Petra is a 18 years old girl to-day. At first sight she is like most other girls her age. Yet, Petra is enriched by a towering life experience – her struggle with cancer, which lasted over a year ». (Introduction to Petra´s Diary, 1998).

  Petra has written a diary about her illness. At her friends insistence, this became a book. Petra there tells her story and ponders about the dark and the bright moments, about her friends, her boyfriend and about love. This also takes some courage. Petra has gone through the bothersome process of »diagnosis and treatment« more than once. She has lived through metastatic spread of her bone cancer, asking herself: »how can I live without a leg? And, am I going to die?«, when the cancer has spread. And, sure «Why me?«. Thus she frankly thought about most of the questions which plague most young people afflicted with cancer. I do believe that her »confession« helped her to get rid of the burden of her past and gave her the strength to go on living. I also believe, that she has conveyed this strength to many a youngster reading her booklet.

  During the final meetings, they mostly talked about their own deliberations.

  Here are some of those.

  More than 80% of them feel different from their peers. Of these, about two thirds think they are better off, about one third that that they are worse off than their »normal« fellows of the same age. «Because of my cancer I am different from those who have not had this experience. I appreciate life better. I am a happy person, have no need of alcohol or drugs.«

  »I understand better what is essential in life and am taking nothing for granted. I want to live my life in full. Having faced death made me look at life in a different way. I appreciate life and what it has to offer, day by day. I think it is most important to live to-day since nobody can promise me a to-morrow.«

  One of the survivors has described his experience as »a lightning bolt during a storm. The stark light shows everything clearly, trees, roads, houses. «This sudden clear, quiet moment is ingrained in his memory.

  Most of them are asking »Why me?«, another is saying: «instead of asking why me, you can ask yourself: «Why am I the lucky one, who is cured?« This fellow thinks of himself as the chosen one, who has fought to a great victory, is born anew and must be grateful for that.

  »Something
good can always emerge from all the bad, not only for us, who survived, but also for those around us.«

  Have the group meetings been useful?

  How have we summarized and evaluated our meetings? In one of our reports we wrote among other things:

  One of the most often discussed topics was stigmatization, indicating the sensitivity and vulnerability of the young patient as well as prejudice within the Society.

  Many former patients have problems in the job market. They are either considered unfit for work, or the employer is afraid of having to grant numerous sick leaves, or even recurrent disease. Some find it diffcult to fulfil the norms as they tend to be slower, less concentrated, more easily tired.

  At times, friends and relatives avoid a former cancer patient, his family therefore feeling different. Most former patients are of the opinion that those who have not had their traumatic experience cannot understand their feelings.

  Some participants have avoided talkng about their disease at home as well as in the company of others and are still asking: «Why me?«Some have never spoken about their illness at home, thus never had a chance to rid themselves of anxiety and some other negative feelings. Others have talked about it and have had some success, may even consider it a positive experience.