Heavy

Deciding to live is not the same as wanting to live. This depression is thick and heavy, I feel immobilised. I understand that there are still good things and that there is still hope but that only sits in the part of my brain that deals with concepts, nothing feels good and I guess feelings are the stuff of motivation.

I had a moment of feeling good the other day. The helplessness had become unbearable and so I worked on my website for an hour. It felt… good. Yeah. Good. Because there I was, there was the person that I love to be.  I am so capable of the things I love to do, the stuff of my art, the thinking with my arms. How do I explain that I think with my arms? How do I explain how much it breaks my heart, every single day, to struggle to simply hold them up?

I know I sound like a broken record. I know I am wallowing in self-pity, tortured by the person stuck inside my crippled body. I know there are people who get on with things, no matter what and I fear I am not one of those people. I’m trying. God, I’m trying. I diligently attend my therapy, I try to make myself do things that will be good for me but without my arms to think with, it all feels like a shitty substitute for the life I want and it’s hard to muster up the positivity to feel like there is a point to this. I’m supposed to accept, to adapt, to move forward… and maybe maybe maybe I could actually do that if I knew where I was going but I’m still waiting for the big unknown of surgery.

And it’s two days later and I am still paying for that thinking with my arms for an hour. My body doesn’t allow for much of that anymore. Yesterday, my battle for the entire day was just continuing to sit up because my head felt too heavy and my arms were enormous weights pulling on my neck, stretching what can’t be stretched because it is trapped in spaces that are too small. Nerve pain is like when you lower your body into a bath that is far too hot, you just want to get out get out get out get out get out get out get out but you can’t you can’t you can’t you can’t can’t. You can’t.

I went on holiday recently, two weeks in New York and my body demanded my attention the whole time. I understood then that there really is no escape from the prison of my flesh. It was devastating and lonely. Crying on trains in New York was good though because nobody even cares. Why can’t the world be more like that? Why can’t we just cry when we’re in pain? Why do I put so much effort into concealing how I feel so that people won’t reject me? Is pretending to be ok a prerequisite of love? Life is hard and hurts and why do I feel so much fucking shame for feeling so weakened?

Fuck.

I’ve not been okay for a while now but there have been good days among that. I’m not feeling those good days anymore. I’m just waiting. Waiting for a medical system that is slow, indifferent, expensive and has almost entirely failed me so far. Waiting for the day when I have muscles and bones cut from one side of me. Then the six months of healing. Then, best case scenario, I get muscles and bones removed from my other side and spend another six months healing. And a year later, if I’m really lucky, I might be a little better.

See this is all I can reasonably hope for, is that I might be a little less crippled, or at the very least, that I don’t keep getting worse. Best case scenario, I can be a little better. But I’ve already watched my life grow smaller over the last seven years and I’m so tired and so bitter. I hate watching people do what they love, I see their freedom and it makes me feel so sick with jealousy. And I hate them for not knowing how free they are. And I hate myself for becoming this. I feel like I’m getting old and ugly. I guess I should be in my life, I guess I should be using what I do have and being grateful.

But I’m just not. I’m trying so hard to be. But sometimes the battle just to remain sitting upright, or to not cry in pain when I’m socialising because I want people to still love me and not grow tired of the tedium of my existence… that just depletes me of my mental and emotional energy. I’m so low on motivation. I am afraid that the smaller my life becomes, the harder things become, the less I will have to offer. I feel distant and disconnected. I fear becoming unlovable.

Talking to other disabled people helps sometimes. They understand. They know what a battle just getting through a day is. But nothing seems to stick. Deciding to live is not the same as wanting to live. I’m not ok but I really don’t know what to do about that. I’m doing things, I’m getting therapy, I’m taking on projects but everything hurts and I’m struggling to see the point.

I’m trying. I’m living for him but struggling to want to for me. I guess I still feel some hope but I don’t have anything like faith. Inside my head I observe myself screaming “help” but what the fuck does that even mean.