Living with pain brings with it a set of new knowledges that I would not have expected. Until I began this life of living with the daily pain of this illness, I did not know how many different types of pain there really were. I think the language of pain is so much dominated by the medical model of illness and disability and all things bodily. Pain is acute, chronic, sharp, dull, sever, mild etcā¦ Ā but pain is not viewed in the holistic way that I experience it. Pain for me is often mixed up with emotional pain, or emotional states, with spiritual pain, or existential pain; pain can be pleasant, pain can be reassuring, pain can feel political, pain can feel social, pain can feel like warfare, pain can feel like your body sending you a message, pain can be protective. Saying that pain is holistic is not to say it is not real and does not have a real physical base, but I am more than organs, blood, tissue, and our physical pain is filtered through our context. So here are a few pains that I experience some on a daily basis some less often, some very rarely:
Thereās the oh no I did it to my self pain ā this pain comes with a lot of self blaming, and recalling all the things I have done to deserve this - I walked too far, too fast, too long, I picked up that bag, I did not sleep in the right position, I should have been better in my youth, I took my body for granted, Iām too much of a perfectionist, I need to shake myself out of this, itās because of not enough exercise as a child, itās because of too much exercise as a child, itās because I did not eat well, itās because I eat too well, itās because I am causing it myself, itās because Iām crazy, itās because I had a hard childhood, itās because Iām a woman, itās because Iām queer, itās because I did not pray enough, itās because Iām not motivated enough, itās because I canāt accept it, itās because I canāt accept my limitations, itās because I do accept it, itās because Iāve stopped believing I will get better, itās because I did too much of something or too little of something, ITāS JUST ALL MY FAULT!
Whining achy all over pain - that makes me feel like whining, maybe making noises like a puppy itās not a strong pain but I just canāt ignore it is so uncomfortable.
Then thereās the Oh my goodness I am so ill this is so real pain. The truth of the fact I have a real physical illness that I canāt just make go away really hits me. This pain sometimes empowers me, makes me feel like I deserve to be treated with respect, that my care of my body is important and that anyone that threatens my ability to look after my body can f*** off.
This is the kind of pain that feels like its stealing my soul its deep inside my back and it feels like it will never go away itās slowly killing my spirit, leaking away my fight, my energy.
Then thereās the where on earth did that come from pain ā the kind of pain that is like a big surprise, itās in a place that I just donāt expect, I've done nothing to cause it, it makes no sense in the light of the fact that I have been good in everyway to my body. Itās the kind of pain that can be reassuring because I eventually conclude well clearly there is nothing I can do, this is just random, I can not control this illness so I might as well just respond to it the best I can.
Then there is the weird indescribable pain ā where I try to explain to someone what it is and then I suddenly realise that I sound like I might not be human.
Then thereās the pain that feels political, that reminds me of all the needless pain in my life how hard I have had to fight to survive, how the politics surrounding my disease has had such an impact on my life, my body and my sense of self. It reminds me of all the ways in which I am silenced and oppressed. Thereās the pain of my powerlessness to change things, and my hopelessness that things will change.
Then thereās the angry pain, the kind of pain that fills me with rage and my body and at the world, angry at how inaccessible the world really is. Angry about capitalism and the pressure for me to push through the pain and go to work, to push through the pain and keep smiling, pretending that I feel fine to protect all the insecure people in the world who can not bear to see public pain, or want to look after me, or send me home.
Then there is the pain that canāt be hidden ā this is the pain that I can not pretend is not there because itās too sever or because I just have not got the energy to pretend it is not present.
Then thereās the pain that can not exist ā sometimes the constant messages about my illness that dismiss it, psychobabble it, and render it not real get inside my pain and make me feel like I must be imagining the pain if only I could just imagine it away.
The pain that makes me feel so alone like there is no one on earth who could ever know about how Iām feeling. Like there are no words to describe it, like I wish I could just share it just to feel not so alone just for a minute.
Then thereās the collective pain the pain that makes me think about how many people there must be out there who are in pain and how badly we are treated and how much strength we have. It makes me feel sad angry and tearful that so many amazing people are fighting such huge battles and so often fighting against people and systems, which are unjust and need to change.
origamiaround
blakekathryn
romaincrisis
