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.
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.
“I take thee at thy word. Call me but love, and I’ll be new baptized” (Romeo & Juliet Act2, Scene2)
I love words. Nevertheless, I am often misunderstood. I might have studied so many foreign languages for the sole sake of expanding my verbal repertoire. Words don’t seem to be enough. I am lost in communication.
Hot blooded, coldblooded, blue blooded, full blooded, bloodless, … it all seems to be in our blood. Our blood is the source of a human being’s vitality and identity. We have music in our blood, the characteristics of our ancestors, some of us seem to have evil in their blood. I have leukemia in my blood.
On the surface, your life and mine might not seem that different. We get up, we work, we have lunch. Let me compare an average morning. But this time, I will describe what is really going on. Not just the things you see. I will let you have a look at what goes on beneath the tip of the iceberg and unveil my invisible life.