PAIN
Sometimes I have no pain at all, sometimes a lot, but luckily I never had as much pain as I was afraid I would have. They say pain is created by the body to protect against damage. The last couple of years I learnt a lot about my body and the different types of pain. I know when it is something associated with the disease and when it’s something that had nothing to do with it. I know when the pain will pass by itself and also when it’s something different and I need to go to the hospital. But luckily it isn’t there all the time. I sometimes have weeks without pain, doing sports, travelling, whatever I want.
Sometimes the pain is really strong. Whenever I am with Carolina we can relax and talk about nice things to try and take my mind off it, but when we are not together it is difficult because strong pain comes with bad feelings and thoughts. It’s hard to get distracted and makes me scared. There are so many things to think about, so many uncertainties.
Sometimes I dream about my own funeral. I have spent weeks in the hospital, surrounded by people who weren’t going to make it. I’ve seen and smelled so much, it’s crazy.
DEATH
I often think about the future. I imagine our house, my parents, and I’m not there. How will it be? Will they be happy? This is something you need to talk about, even though you’d rather forget the whole subject altogether. It helps to talk. I spoke a lot to the hospital’s psychologist, who I got along with really well. He told me that even when fighting and hoping for things to get better, I had to be prepared for death. He said: ‘Say what you want to say and do what you want to do, and do it now, before it’s too late.’
I always thought I would have plenty of time to spend with my parents after my windsurfing career, when I was done with all the travelling. With my illness, time became a totally different concept to me. I took my parents around the world with me and showed them the places I loved. I wanted them to see through my eyes why I loved windsurfing, travelling, filming. We went to Cape Town twice, we travelled to Sardinia and slept in the campervan, spent time in Jeri. I am so happy I got to do this, that I realised in time this was important. Just spending time together, talking. Making them part of my life.
I worry most about my mother. I think my dad will come to terms with my death eventually, in some kind of way. He always looks forward, is always motivated when I get a bad result from my doctors, he’s very positive. But my mother … I think she will be destroyed. Thinking about this makes me sad beyond belief.
