When I was diagnosed with chronic lymphocytic leukemia, I had already had a number of chronic diseases for ages. However, none of them had ever become part of me, of my personality and my self-image. I had asthma, but I was not “an asthmatic”. With my new diagnosis everything changed. Leukemia meant cancer meant death, I thought. You don’t just have cancer – in the eyes of others as well as your own eyes you somehow seem to become the personification of cancer. And even though I should have known better it still felt like that for a while. The heart rules your head, they say. How true. Luckily, I found out that I had become part of the ”spoonie club”, a community I had never heard of before. I adapted my self-image slowly: Teresita, professional, wife, mother, stepmother, friend, globetrotter, scientist, journalist, philanthropist, adventurous, passionate, elegant, witty, moody, energetic, active, fun-loving,…….ahm, yes…..and suffering from chronic diseases, cancer patient – spoonie.
But would it be possible to be an adventurous spoonie? An elegant spoonie? I have always mastered thousands of contradictions within myself, I can wine & dine in pearls one evening and have a ball in the mud on the next day. But somehow I felt it was impossible to successfully integrate “spoonie” into my personality. I could either be a spoonie, focusing on health issues, being overly cautious, passive and pessimistic or I could be myself, I thought. It was terrifying.
Being informed about those cancerous cells in my blood divided my life into two halves: a pre-cancer and a post-cancer one. I was bound to change and I knew it. Nevertheless, I refused to become the sort of “spoonie” I had originally had in mind. Instead, I changed my perceptions about spoonies. I caught up with the wonderfully heterogonous spoonie community. Thank you so much for all the inspiration you gave me, guys.
By then, I had realized that it was up to me to mold my personal way of being a spoonie. Fortunately, I can stay true to myself by trying to reconcile my health issues and my lifestyle. Setting priorities and actively searching for practical solutions enables me to remain an active person who gets things done. I have managed to become the kind of adventurous and elegant spoonie used to dream of.
My advice: re-think and re-shape your own spoonie image regularly. It’s a real confidence booster and helps when dealing with people who decline to see anything else but your disease when you as a person have so much more to offer. Try it!