More than 10 years ago I felt the strong urge to change my life. I was 15, quite unsatisfied and felt deeply, that I wasn’t living my life in line with my principles and values. I remember walking home from school when the puzzle got solved and my thoughts turned around 180 degrees. Suddenly I was able to stand up for the things I believed, gained self-confidence, decided to stop watching television and started to do all the things I wished for (mostly not very responsible things like sleeping under stars, party a lot, getting tattooed, Hitchhike – basically seeing life as an adventure). I was very happy.
Now at the age of 26 I know that this radical change was probably called “Puberty”. But still I wish for it to happen again. This time in relationship with my chronic illnesses. Having Endometriosis and Depression for several years and finally being diagnosed with Fibromyalgia has changed my life drastically in the last years and months – and it was not an intentional, happy change like when I refused to wear shoes in school. Many times, it felt like I was robbed and that the stolen time and energy was gone forever.
I definitely did some steps in direction of acceptance, but it’s a long way to go. And I feel like I’m somehow stuck: I have good days, difficult days and bad days. On the good days I’m only in little pain and exhaustion. I’m able to go to university, write, be more or less active and see myself in a political context of capitalism, sexism, ableism etc. that I am challenging through the way I live my life. On the difficult days, I’m in middle to severe pain and I’m in ‘surviving program’, which means: distracting myself from the pain, the frustration, the sadness that come with stabbing pain, exhaustion and the longing for a life I have no energy for. I zoom out and stare into displays, watch YouTube and television even on bathroom breaks because I do not want to confront myself with these nasty feelings. On the very bad days everything breaks. The constant stimulations I had during the preceding difficult days are too much for my nervous system and the increased pain makes me so sensitive against noise that very depressive thoughts get triggered. I’m in deep sadness wishing to dissolve.
I know my conduct on the difficult days (which are the most frequent) triggers the very bad days. It’s because I am depriving myself – due to the angst and uncanniness of pain – from the quietness and peace I would need.
Distraction is a normal coping mechanism and, in some situations, very healthy. It is a normal reaction facing an overstraining new situation. And I know, that the fears I’m distracting myself from are the horrible social product, which arise when your embodiment turns away from a normalized abled-body. It’s scary process, challenging to talk about and a Million times more difficult than I imagined when I was healthy. But for some weeks now I feel like a shift of thought, like when I was 15, is possible again. I’m not sure yet about the methods but there is an idea of a new perspective, a new pace of life, new practices which can finally empower myself. It’s a radical perspective. Radical in the sense that they challenge ableist/capitalist assumptions about efficiency, the “value” of a life, the ideas about aspired goals and the concept of “work”.
I hope that this new perspective can manifest itself in new practices and help me to gain self-confidence once more. My first step is probably going to be examining the different ways I distract myself and trying out some silence in the moments I don’t really want to. All the way keeping in mind that distraction can be a very valuable tool in many situations and that it is going to accompany me forever. And of course: That there is always a certain kind of pain that you can do nothing but distract yourself from, waiting for the meds to kick in. But I think there is a lot to gain for me at this stage in my life in trying not to distance myself from the feelings and thoughts that my pain brings me ALL THE TIME. Not because I believe in an inherent meaning of the pain or see it as a message from something/someone, not because I believe it has “some sense” or it is some form of “test”. But because an unprivileged position (like the one of being chronically sick) can enable new perspectives about the system we’re living in and about the thoughts we collectively share.
If this all turns out not to be the case – at least it would help me not to get over-stimulated even more.
But I strongly believe that it could bring me a buffet of new thoughts, new ideas, new understandings and maybe a way to sometimes even enjoy the strange perceptions my sick body provides (Because let’s face it, having a full-on Fatigue while walking through a train station can be quite trippy). I believe it could help me to achieve a new way of being with radical potential and I’m looking forward to letting it evolve.
Is someone of you is facing similar questions/topics? I would love to hear your thoughts! <3