Kacper has never wondered why he suffers from an incurable disease. He finds such questions silly and immature. He is what he is, and he just needs to deal with it. Simple as that! What he doesn’t find that simple however is dealing with thoughts related to his future. He is not that good at handling extreme pain either, perhaps not physically, but mentally. Physical pain can be dealt with: there are plenty of good drugs that can help. Although, he doesn’t like taking drugs too frequently, for a fear of possible addiction, when his muscles and back pain unbearably he applies a strong painkiller for a relief.
Unfortunately, there is no medicine for his thoughts. He just needs to work through them, and this always takes lots of energy, energy that he starts missing sometimes. What Kacper found helpful is a chance to talk about what is happening in his mind. Talking, writing… whatever, as long as his head was being emptied.
For last 5 – 6 years, Kacper has been becoming weaker. He is still not at stage, when he would need assistance from anyone. It will probably not be a case for some more years, but a fact is that he is weaker, and physically, he is able to do only a fraction of what he used to in the past. He has more pain attacks, and they are more severe too. Whenever his body is particularly sore, he tries finding a place, when he can be left alone, where he can lock himself up, without being bothered by anyone. He then screams, and sometimes bangs with his fists against a table, a wall, or something hard. The energy he releases this way strangely makes him feel better. It doesn’t reduce any of the pain; it just gives him a chance to react. This physical demonstration is calming and healing.
‘Not knowing, yes – not knowing, how I support myself, when I am less able is the worst fear, I have’, he once told Jeff, his therapist that looked after him, when he felt suicidal. Despite all odds, Kacper has always been independent, more than that; he managed to support many other people. His relative success has made him to be arrogant in some ways. What he couldn’t accept was a fact that one day he would not be able to influence what he was going to do, and would need to give in to recognise decisions of other people over his fate. People will need to look after him, gradually to the point of assisting him with basic life activities. He will need to be helped to go to toilets; he will need to be pushed around in his wheelchair... All of this is a reality that is hanging over Kacper. Reality that he will only avoid if he doesn’t live long enough to experience it, or if there is some sort of miracle that will happen…
His worries are also of financial nature. How will he support himself, when he is not able to move around? Will he ever be able to find work, which doesn’t involve travelling, but he is able to carry out, given his very specific professional experience – humanitarian work experience? Kacper so far refused acknowledging he would not be able to support himself, and do work that he is not interested in, or does not believe in its sense.
All these gloomy thoughts attack Kacper, whenever his pains increase. Then, on the other hand, Kacper knows that he is a fighter. Leaving modesty aside, he knows that there were many obstacles in his life that he managed to overcome in seemingly hopeless situations, and that much of it happened because of his hard work. Of course, there were people supporting him along the way, but at the end, it was Kacper’s own determination that helped. ‘Why should it be any different now?’ he questions himself, trying to steal some optimism from energy around him. ‘Things might be tough, but am I not going just to do fine again… against all the odds?’ he keeps on thinking. He doesn’t know the answers, but he egoistically wished so much that things work out well for him.
It was Kacper’s grandma – his beloved Babcia, who taught him how to walk. He started walking very late. He made his first steps when he was 5 years old. Kacper was born with his feet twisted around, and it took the doctors four years to bring them back to more or less normal position. They did it through keeping them in plasters. They were replaced every week to allow space for Kacper’s growing body and exercises that his mother needed to perform on his feet each time ‘between the plasters’.
When he was four, his feet were declared ‘fixed’! This is when Babcia started her miracles. She bathed Kacper twice a day in herbs she was collecting herself in the woods. She effortlessly did so for over a year. After bathing, she would massage his feet, and tried to make Kacper walk. When all, including the medics, lost their hope he would ever move on his own, Kacper brought his Babcia, and the rest family to tears. One day he got up from a chair, where he used to sit while eating, and simply did his first 3 steps. Kacper started WALKING! His mother jokes about it until today. ‘Kacper, you started with the three steps only when you were five, but you cannot stop until today, and you keep on walking the world over!’ she smiles proudly.
Another serious crisis came, when he was slightly older. Kacper’s muscles were too weak to keep his growing body in a proper position. As a result, his spine got so curved that Kacper’s nose was nearly touching his knees. He deformation was so serious that he could hardly move, and worse so, his heart didn’t have enough space to work properly. The doctors suggested the surgery. ‘We will probably not manage to save him, the operation is too complicated and complex, but if we don’t do anything, we will loose him anyway…’ they gave the choice to his parents. Mum and dad didn’t hesitate for a second. ‘Operate, and save our son’, they decided. The surgery lasted over 10 hours. Kacper woke up in a new body. Technically, within a few hours he grew by 12 centimetres! The doctors achieved the impossible – he was given another chance, chance to live! Soon, Kacper was learning how to walk for a second time in his life. It was a strange feeling to be ‘tall’ all over sudden, and learning to deal with his extended body. It was difficult to overcome his fears of falling down and hurting himself, but he did it, he learnt WALKING again.
Today, Kacper’s back is very sore again. His mind continues his usual war of feeling self-pity versus feeling a master of his own fate. Kacper doesn’t know how the fight will end, but once again is determined to feel optimistic about his future, when he wakes up tomorrow.
PS. Kacper is thinking of his interview, he will have tomorrow.