When a good friend of mine suggested to me to read this book, my very first reaction was „No, can’t do it“. Having been seriously ill for a few years now and having to learn to live with the possibility of dying younger than normal, ok, what is normal? – but anyway my first reaction was „Can’t do it!“, „Won’t do it!“. In her gentle way she didn’t push me just said: „Get it anyway and if you don’t read it, no worries.“
So I bought the book. And once I had started I didn’t put it down anymore. I didn’t feel any of those expected bad emotions. Right at the beginning, yes I was emotional, but not in a bad way. I let it happen and it changed into being curious, being open, being critical.
Overall, if somebody was asking me if I would recommend the book, I would say „Yes.“ I have been even thinking of getting it as a present for some very specific people, but it’s kind of a strange present.
For me writing this blog is a way of once more working my way through the book, critical looking at her ideas, her beliefs and finding out what the learning, what the essence is for me. And don’t get me wrong, the essence will be different for every reader. This book that has the potential of polarizing significantly.
„It was a late Friday afternoon…“ when Anita was told that she had „lymphoma, which is a form of cancer of the lymphatic system“. Also having been given my diagnosis on a Friday, it was the 19th December 2008, moved me. It created some feeling of understanding what she had gone through, nearly knowing her. When later she described how she behaved, I felt she talked about me. I also „put up a front. I laughed and smiled and made small talk, even when I didn’t want to, because it was important to me not to cause concern or worry anyone else with my condition. I didn’t want others to feel upset or uncomfortable because of my situation, … So many people remarked on how ‚brave‘ I was, and how they admired the way I was dealing with my illness. Many, many individuals also commented on how positive and happy I always was – but that’s not how I felt inside.“ This is one of the most difficult things, I experienced in all those years. Who do I talk to? Who can handle a conversation on this topic without being too much affected? I didn’t think my partner could handle it, he was worried enough. He didn’t allow himself to imagine the unimaginable. And my parents? My mum is so very emotional. Me being ill was her living nightmare. And she had soon after me getting ill also some health issues. So talking to her, worrying her, was also not really something I felt comfortable with. In German there are two words for feeling compassion: Mitgefühl and Mitleid. The first I needed, the second I got. So there was my dad left who I felt the closed to in those moments. He is very rational and calm. With him I could talk about my advance decision, he knew where all my papers where, just in case, he would drive me to the hospital before the operations and not talk, he was actually the one I told the diagnosis. I knew, well I thought, my mum couldn’t handle it, so I had him on the phone. There are a million small situations where when I thought who could be on my side for that, I came up with my dad’s name. Is it bad that it was never my partner? Or a friend? Or my mum? I don’t know. Looking back, my dad was my rock. My focal point. My rational safety net in an emotional turmoil.
It took me all together 5 years to find the courage to look for somebody specialized in psycho oncology. When I met her for the first time she asked me why I was coming and I said something like: “ I am looking for somebody I can tell all those frightening thoughts, all those worries, all those nightmares, and who is professional enough to be emphatic but not personally impacted. I am looking for somebody who get’s getting paid for listening to me.“ And we talked. We discussed all the unimaginable „What if-s“. And I felt free to talk about it with her. It was her competency, her skill to remain at a professional distance. I should have done this much earlier. This is one of my biggest leanings. There is more to healing than just cutting out, or radiation in my case, or whatever the doctors need doing. There is the soul part that gets in our society so easily forgotten. The soul needs attention and pampering. Maybe if I had been in the oncology department in the hospital, I would have been introduced to a psychologist. But I was in the neurological department. And I was never ever asked if I wanted to talk to somebody. Maybe I would have refused it in my arrogance, maybe not. Who knows. But we should learn, that if we are ill, we need to address our situation from different points with different methods. I did do art therapy along side of the standard treatment and it did me a lot of good. I choose art therapy because there I didn’t need to talk. It was what I felt I needed. But those thoughts, feelings, worries, anxieties that we feel in a life threatening situation, they also need to be heard. Well, and for them to be heard, one has to talk about them. I thought I was so self reflected, so strong, so clear that I wouldn’t need any of that therapy talk. But I was wrong. Had I done that earlier, maybe my partner and I would have started earlier to be truly open about how we felt and what we thought. We might have found a better way together during those years. We would have been a team. The way I did it – was that I did it all by myself. I felt I was the one being ill, I was the one having to handle it by myself and that I had to be strong for everybody else. How stupid of me. (to be continued)