your parts work
they just don't work well together
i know when the specialist says this, it is the most clarifying piece of information I have received since my named thing*. at some point she continues, you had that first break/triggerpoint/(side effect of the medication). however, your brain rewired; she trails off it rewired wrong I finish for her and continues to do so she ends. in moments of anger, I am angry at the version of me that kept pushing through this rewiring. the me that puked in bathrooms and went back to work, the me that popped eight pills to get through the day for months
***
someone I loved once told me I was miserable 90% of the time. at the time this statement stung for its obvious cruelty. over the years I have come back to it repeatedly trying to understand what about it has stuck with me. it is that so much of my life is masked by how much I can show face. no matter what people say, the world requires us to pull through to a certain degree. so for me - my home, my people that is where I can lay down. to be told this statement at a time when I was deeply fighting to be alive, fighting to find joy, to be a partner, business owner etc to be told this by the one person who should be in my corner was a truly shattering piece of safety I did not know I was looking for. I thought my sadness was safe, my hurt, my trying.
***
the thing about being chronically ill for me at this point is the battle to fight for a better life (health). in the last three years, I have diminished in health, but I am able to mask most of it and perform. I am plagued most days by how fast, focused etc I used to be. I wonder if the people I work with now get annoyed at the delays or capacity requests. I know some of this is a projection of fears. a built-in system of always flying and now finding myself running. but some of it is also very real ways people interact with you. last year I spent eight months with severe brain fog, how do you explain you have been underwater for eight months so every day you have to spend half the time adjusting your breath, and cleaning the water from your ears? your sick note runs out somewhere between the first week and the second month.
***
in 2018, I had not yet learnt my thing would cause me to hear my heartbeat in my ear constantly or my blood flowing. I was just going for all intents, crazy. the pharmacist I stumbled into see would advise me to drink chamomile tea after asking if I had anxiety. I called a guy I knew with percocets - it numbed it for a couple of hours.
***
in rare moments of brightness, i know I am unstoppable. i know there is no timeline no rush no thing that is mine that is not already happening. i know that the version of me did survival with the tools she had. i know i am removed from the idea that there is a wrong way for my brain to be designed and settled in a content knowledge i will spend the rest of my life working to be well and that well will never be the status quo.
there is hope though, you have one-off good days. your brain wants to find a way to well.