I have been dark for a long time.
I couldn’t talk to you, I couldn’t even look at you.
For the first 6 years of my illness the Internet was an amazing place where I could still interact with the world, but then I fell too far into the dark and the experience of being online changed. All of my experiences changed. Life was too much to deal with and I couldn’t think clearly anymore. I could hardly think at all. It was too much pain, too much loss and too entirely overwhelming for hope to glimmer through.
When you were sad, I started to feel like the world was ending, as though everybody was as wretched and miserable as me and that just made me feel sadder. When you were happy, I felt a sense of separation from the world that stabbed like a dagger to the gut, I felt jealous and angry and disappointed, as though everybody had chances and choices that I could only ever watch.
I have been stuck in a season of injury. A stumble here, a bump there and infections that take far too long to clear. My body stores these afflictions like trophies, keeping physical remnants of pain that are used to perpetually torment me and send me screaming into further incapacitation. When I can scream, that is.
All of my physical capabilities were suddenly gone. The pain grew and expanded through more of me, increasing in severity through my knees and elbows, shoulders and face. I couldn’t walk, I couldn’t sit up, I couldn’t hold anything in my hands, I couldn’t read, I couldn’t write, I couldn’t talk, I couldn’t smile… And then I couldn’t walk again. As soon as one symptom abated in the slightest, another angrily rose to take its place. I felt so utterly defeated.
Near the end of last year, I received my last income protection payment from the insurance company. I’d always held onto a sense of hope that by the time the money ran out, I’d have found some way to support myself. That maybe I’d be able to work again, or write, or study. I was so determined to not let chronic pain beat me that I’ve been living in denial about the reality of what I can and can’t overcome through sheer determination. I’ve failed to acknowledge just how much this disease has progressed since its beginning. It’s hard for me to recognise this without giving up. It’s hard to both accept reality and also keep trying to improve it.
All of me is affected by CRPS, all of me. I can’t simply learn to do something with the other hand, or learn to do something around the use of crutches or a cane because I can’t use crutches or a cane like I could when CRPS was just in my lower limbs. I can’t even push myself in a wheelchair. When I can’t stand on my legs, I just can’t stand. When I can’t use my arms, I just can’t touch anything. When I can’t use my mouth, I just can’t communicate. When the pain soars beyond believable levels of intensity, there is no working through it, there is just survival.
When the insurance money ran out, I lost another piece of me. I lost the ability to have any sort of independent choice, at all. I am not married, however, living with someone who loves me strips me of any rights to independent disability support. My increased incapacitation means that he doesn’t just have to support me financially, he has to do absolutely everything for me.
Every part of my being is burden on the people that I love. I might not have asked to live like this, but that doesn’t mean that I don’t feel guilty and useless and like I should be able to offer somebody something in return.
When I could no longer type, I lost another piece of me. A really big piece. I can only write to you now because my hands are finally allowing me to click a few times on the keyboard, which I need to be able to do in order to get around errors between myself and this dictation software. It’s not the same though, writing by talking is not the same as writing by writing. My words have always been my way of understanding things, my way of working through problems. Writing by talking might not be my way, but I have to believe that it can become so. It is a “way” after all, I have to believe that practise will help to make it “mine”.
I have felt bound and gagged for so long that I started to forget who I am. I have been waiting desperately for these days to come, for these days that bring enough physical function for me to be able to try to practise this other way of writing. It was such a long wait that I wondered if I was even a writer anymore, if I had ever been one to begin with.
Given enough time alone in her head, a girl can wonder about just about anything. I can’t trust most of the things that run through my mind because thoughts are the biggest and fattest of liars. If I pay too much attention to them, I end up spiralling further into depression. Instead, I must keep recognising thoughts as thoughts and not as facts. I must keep tricking my mind into focusing on other things, which can get rather complicated when I can’t move, can only feel pain and there really seem to be no “other things”.
Every day that I could, I pushed myself through the motions of performing the physical and psychological pain rehabilitation techniques that I have learnt over the years. Most days, I was barely capable of anything, I’d have to settle for simply breathing calmly because no matter what, there is always breathing calmly. Breathe and let go, breathe and let go…
Being able to function is dependent on faith. Sometimes, faith is also reliant on being able to function, as misguided as that may be. I had a lot of faith in the things that I used to be able to do before stumbling into this ridiculous rough patch of life cabbages. I could find happiness in a day if I was simply able to cook, or clean, or write, or exercise, or plan ways that I could use these abilities to improve my future existence. When all of those things fell apart, so did my faith that life would ever improve.
The sensation of hope seeping away is like a smothering of the heart. I could recognise that I was suffocating, but I couldn’t figure out how to gasp again. The will to fight burns inside a person; passion, faith and motivation are things of fire. Where once my flames had flickered, I could only find dull glowing embers. I continue to take some solace in their light, embers are not ashes. If I continue to focus, I might yet feel that fire once more.
I have been lost and I have been grieving, but I hope to find my way again. Where I am today is just where I am for now. Tomorrow could still be different.
Love & Hiccups of Hope,