Out of the Fog
It occurred to me that living with disability is a state that requires living with permanent and unreconcilable states of cognitive dissonance. Externally, society demands that you have to ask for accommodations while insisting that requiring an accommodation is an unreasonable demand. Society also demands that you integrate, while any measure of integration is deemed proof that you are not, in fact, disabled. There are more, but you get what I mean, I am sure.
For me, the internal dissonance comes from knowing that I have reduced capacities from my disability and chronic health conditions, meeting my expectations of daily life and activities. I have the capability in technical terms; I don’t have the ability to deploy my technical abilities. I am capable and incapable at the same time, which gets frustrating and demoralising. With my recent uptick in well being, the difference between what I am motivated to do and what I can actually do has become strikingly apparent.
The fact that my body and health stubbornly refuse to undergo the miracle recovery they are told continues to vex me; to paraphrase Khan’s paraphrase, “it tasks me, and I shall have it”. For the non-Trekkies among you, the character Khan then destroys himself and the ship trying to capture the Starship Enterprise. I may not experience the fiery end of Khan and the Reliant, but I am limping and incapacitated when I try to push my luck. This is a battle I am never going to win however many times I run it back.
As is often the case, physical health is my rate limiting step. However, unlike before, I am now able to read much more regularly. I didn’t realise how much I was missing winding down before bed with some chill tunes and a book. While I may lament the lack of health transformation, the cumulative effect of small changes, like being able to read more often, being able to listen to music and even enjoying the taste of food, makes for a big net effect. My capacities are more unreliable and unpredictable than they were before because back then I could do very little all of the time; now, sometimes I can do something. I have been able to go back to my old approach of doing little parts of little things a little at a time, building into one job. So, its wipe the taps on one trip to the loo, wipe the lid on another, wipe the seat on another, maybe put something in the bin on the way back. Luckily, it’s just me and my backlog of things not done, so plenty of things to get on with and only me to moan about what needs to be done.
This week is about celebrating the little wins; it's recognising I wrote a poem, not lamenting I didn’t write thirty. Moreover, it is celebrating the stability and peace in my life, which means I don’t have much to write about. I am out here living life the best I can, without self-inflicted drama, unless a parking ticket counts, and appreciating the qualitative difference in my day to day. I might not be doing much differently on paper, but I feel less sick and deathly while I am doing it. That is winning right now.
I am holding on to this because I want to move on from the overwhelming feelings of futility and despair that take hold when I stop and think of the world I am in. Which is perhaps the biggest cognitive dissonance I am facing: the peaceful and rewarding life I get to live while the world burns with the flames reaching further and higher every day. This is what it is to be human.
