What If These Are My Good Days?

Lately I have been sitting with the sinking feeling of what if I never get better. What if these are my good days. What if I am supposed to make the best of this with this level of pain and discomfort. Am I supposed to push through, or rest, or somehow do both? How do I experience joy when I am so exhausted and my body is burning with pain?

This has taken so much from me and I am still grieving. I am too exhausted to do most of the things I love and then pay the price when I do manage to do them. I have become a shell of who I once was, pushing through each day just to go through the motions of work and life and stay afloat while drowning. There is so much effort that goes into simply existing now that I sometimes wonder how I am supposed to find the energy to actually live.

I am not really sure where to go from here, but I have to find some kind of forward momentum because I cannot stay here. I hear people talk about disabled joy and I wonder where I am supposed to tap into that. How do I find that when my community is made up of fellow neurodivergent and disabled humans who are just as exhausted as me? No one has extra energy to show up for each other. Sometimes we do, but most of the time I am sure we are experiencing the same frequency of silence. It isn't because we don't care about each other. It is because we are all trying to make it through our own days, and sometimes there just isn't anything left to give.

I am not the hopeful type. I am actually, honestly, quite bitter to be honest. I cannot stand a certain level of positivity and I loathe questions like "what are your long term goals?" Surviving is the only sort of long term goal that feels realistic right now. "What are you most proud of?" Still being here. But we cannot always respond honestly to questions like that because it would cause discomfort for other people. There is this expectation that we should be able to find something hopeful in all of this, some lesson or purpose or silver lining, and I don't have one. I don't want to turn what has happened to me into something beautiful just so other people can feel better about it.

I don't know if I am ever going to get better. I don't know if this is as good as it gets. I don't know what my life is supposed to look like if this is the body and the amount of energy I have to work with. I don't know how to reconcile wanting a life with knowing that so much of what I want takes energy I don't have, or that doing the things I love can sometimes mean spending the next day or several days recovering from them.

Maybe this is the part I am still trying to figure out. I don't think I need to suddenly become hopeful or convince myself that everything is going to get better. I don't think I need another person telling me to focus on the positive or reminding me that I have survived hard things before. I know I have survived hard things. I am tired of surviving hard things. What I want is to have a life that feels like more than surviving them.

Maybe finding disabled joy doesn't have to mean finding some huge source of happiness that makes all of this easier. Maybe it is going to be much smaller and much more ordinary than that. Maybe it is finding the things that still feel good without demanding that they make up for everything I have lost. Maybe it is letting myself enjoy something without immediately calculating the energy cost. Maybe it is making something, sitting outside, laughing with someone, being curious about something, or having a day where I don't spend every minute thinking about what my body can and cannot handle. Maybe it is allowing myself to have some pleasure without requiring myself to be grateful for the pain that surrounds it.

I don't know if any of that is enough yet, and I don't know if that is what disabled joy is supposed to look like. I am still grieving too much to pretend that I have figured it out. I am still angry about what has been taken from me, and I am still trying to understand what kind of life I can build with what I have left. I think maybe that is where I am going to have to start, not with hope and not with some grand vision of the future, but with being honest about where I am and asking myself what is still possible from here.

I don't know what comes next, and for once I am trying not to force myself to have an answer. Maybe forward momentum does not have to mean getting better. Maybe it can just mean continuing to look for the pieces of a life that still feel like mine, even when I am angry that the life I have now is not the one I wanted. Maybe I can be bitter and exhausted and grieving and still be curious about what might be possible. I don't have to call that hope if I don't want to. I think for now I can just call it continuing.