Thoughtless

I forgot the beginning line of this essay.

I was upstairs, changing my clothes, multitasking as I often do. I planned the first couple of paragraphs, intending to get started when I got back downstairs. By the time I got there two minutes later, I could remember that I’d thought of something, remember the general shape and feel of it (it was going to be a lot lighter than this), and absolutely not access it, no matter how much I tried backtracking through the marine layer of my thoughts.

This is called brain fog, and it’s my least favorite symptom of my chronic illness.

Brain fog comes with a host of diseases, and very rudely, some treatments and therapies. It can manifest in forgotten words, fumbled processes (almost especially ones one knows well), difficulty making decisions, confusion, and — my least favorite — disorganization. Before my disease, I was the kind of person who never wrote down appointments or instructions. I remembered. This week on Wednesday, I looked at my work schedule at two, saw clearly that I was scheduled to go to lunch at four, and went at three as though driven on autopilot.

Lunch wound up being no big deal. Other things have been worse, for me and for others, and there’s no amount of apology that makes up for what for all the world looks like thoughtlessness, but really comes down to a betrayal of the brain when it results in real world consequences past “hah, you said shit instead of shut”. (Did that too. At work.)

Honestly, nobody prepares or really helps you with losing physical aptitude, but there’s been at least a little understanding of that, in my experience. People very clearly understand my grief over losing my treasured ballet lessons to my spinal injury, and to a lesser but still present extent show patience when the old L-5 decides to team up with the ME/CFS and I need to take things slow. There’s a lot less support for “I was known for my perfectionism and organization and now I’ve temporarily forgotten the medical ID I use multiple times a day”.

Like — how do you cope when you’re not only vexed (or worse), but you’re struggling with your identity because of it (ever seen a tidy person (me) lose the ability to clean? It’s not pretty) and now people are annoyed (or worse), too. I am taking practical measures. Mostly a swarm of post it notes and cacophonies of alarms and several calendars. My phone rarely leaves my side, and true to my profession, if I don’t have it in my phone, I know how to find it. But forgetting an offhand conversation, or feeling stalled in the middle of a sentence, or making a less careful choice because of a leaden brain still happens. Falling back on old ways not realizing the new circumstances will impact the situation still happens. Ask my poor doctor, who had to tell me to stop doubling my medication because my brain deleted the portion of our conversation where she said to double the old dosage once and when the new came up, she would write it for the correct new amount. She was kind enough not to stare and ask me how I’m not dead. And now I take notes. Every appointment.

Basically: all this to say no, this never used to happen. Yes, this frustrates me as much as or more than the people around me. It’s seeped into every facet of my life. If you’re living with someone with brain fog, be patient. It’s more than simple carelessness, and it requires a monumental amount of effort that might be A Lot depending on what else is going on. If you’re living with it, you’re absolutely not alone and I wish we’d talk about it more. It’s so much more than “ha ha, I put the bread in the fridge and the milk in the pantry, isn’t that silly”.

It can be. Sometimes. Sometimes saying shit instead of shut is hilarious and what I need in the moment. And other times my doctor needs all the tact in the world to keep from asking what planet I was on when she gave her instructions, and did I know I could have murdered myself? (She has it. She’s lovely.)

There’s probably something also to be said for learning to navigate this or continuing to have to do so during a pandemic, but honestly, unpacking that sounds bitterly exhausting. All I know is that we need more support. Everybody could always use more support, but in this arena, it seems to be lost in the mist.

Photo is licensed under Creative Commons license by-nc-sa 3.0. Aram Bartholl 2021