Sometimes I really despair of doing anything with my life in the face of the constancy of chronic illness. This past 2 months have been one of those times. So was the 3 months of post-vaccine reaction (yes, I would get it again, again a hundred times – cause I’m still not over covid proper, and because it’s our civic duty to protect each other if we possibly can), so was post-covid, so was post 3-cancer-surgeries, so was post-medication-reaction that nearly put me in the hospital.
Every time I feel like I make a little headway, I get my ass kicked by yet something else.
A good friend of mine jokes that this is clearly because the universe is saving everyone from what my powers would be if I were unleashed! Which makes me laugh, for a while.
Sometimes it’s my body, sometimes it’s my mind, sometimes it’s internally generated by whatever weirdness my genetic structure contains, sometimes it’s a susceptibility to some external stressor – but whatever the kick off is for any given crash, the result is an inability to function for one reason or another.
I have a beautiful supportive family and dear friends and I’d be dead without them and am endlessly thankful they exist and love me no matter what (which always makes me go ??? but I believe them when they tell me I have value no matter what). But I so so so very much want to be able to CREATE, to make beautiful things for people to hear! To imbue words with meaning that make people pause in silence, or cry, or laugh, or just feel like the world is a better place for a few minutes. I want to be able to do this without collapsing physically or mentally, I want to be able to do this without having to choose between ‘have 1 spoon – I can make a meal, or I can record a chapter’ [lets be clear, recording a chapter always wins, because playing in front of the microphone is FUN, whereas cooking food is infinitely boring to me]
I just went through 6 weeks of bad medication interactions. This is always a risk, no matter how carefully my doctors and I approach medication changes, because my physiology is utterly unpredictable about this kind of thing. What means ‘bad interaction’ in this instance? Well, for a month my vocal chords swelled shut, and it took that long for us to figure out that it was the medication and not some random cold (or another long-covid symptom, I mean it just never gives up!). Then came a couple weeks of utterly crippling anxiety, again it took time to figure out that this was a medication issue, because lets be real hear LIFE IN THE TIME OF COVID IS FULL OF SITUATIONAL ANXIETY.
So I record and edit when I can, as much as I can, and I fight for every inch of it. I make sure ‘body might fall apart’ cushion time is built into every audiobook recording schedule, and I almost always have to use it. Now that covid has rendered my hands almost unusable, we have hired someone to help around the house, and that has turned out to be a blessing of an extra spoon here and there, since basic cleaning that would be taxing, I can literally now no longer do…
I just….I just want to be able to live a life where I have access to the agency to choose what I do each day, rather than having my choices crushed in a constant vise of all I cannot manage to do.