When I became a chronic illness patient after my diagnosis, it took me a while to realize I was part of the „spoonie community“. I found out that such diseases rarely come alone. Most of the patients seem to have a whole catalogue of afflictions. I don’t. I have CLL and my immune system does not really deserve its name, but that’s it. However, once you are a spoonie, chronic health issues seem to pop up everywhere.
I have always had a weak immune system. Antibiotics have often saved me. I never questioned those physicians who prescribed them generously to me over the course of the years. No wonder. Antibiotics have always worked for me – so far. But what if they don’t anymore? What if a patient develops resistance?
My chronic disease is an invisible one, which means that there will always be quite a lot of things you don’t see by just looking at me. In summer, I went to my home country where I wanted to meet up with each and everybody. I had a booming social life and was surprised by my own activity level. People who know about my CLL are usually disappointed when we meet, because there is not much to see. I will tell you about the things none of them could see while I was partying.
Twenty years ago, not only Princess Diana and Mother Teresa died. A few days before, my childhood friend Nathalie had been killed in a car accident. I remember watching endless reports about Diana and Dodi’s fatal crash thinking about Nathalie. She was the first to go…the first one of my generation.
Today, on my 43rd birthday, I would like to tell you about two amazing experiences I had when I recently traveled through India. Both of them were extremely physical. One of them made me aware of cultural differences in our attitude towards death. The other one gave me insights about the poorest of the poor – and how the other half dies.
No matter if you have a partner or you don’t, if you have children or you don’t, if you are surrounded by many friends or just a few – the battle against chronic disease and terminal illness will have to be fought alone mostly. Like Sisyphus, you are rolling your burden up the hill, but have to watch it going down again. And just like Sisyphus, you can find happiness…
I once went to a party where people had done their very best to dress up – and then they all had to take their shoes off. The hostess was wearing an extremely tight and short cocktail dress, but she combined it with scuffs and the overall effect was ridiculous. (Also for the guests in their hole-in-toe socks) If you do your very best to look good during those bedridden or homebound days, don’t forget to choose your shoes carefully. I have summed up the golden rules for spoonie shoes for you here.