What Do I Do All Day?

Sadly, “philosopher with brain injury” does not appear in this book, so I didn’t get to cite it on my forms

On May 29, I received two questionnaires in the mail from the Social Security Disability office - one titled ‘Work History’ and the other titled ‘Function Report - Adult’. Both forms were at least ten pages long, mixed ‘yes/no’ questions with open-ended inquiries, and had to be filled out by hand. Both forms also stated that they must be returned by June 1 (three days later), or I risked being denied benefits for ‘insufficient information’. (Huh. It’s almost like the system is broken and they don’t want to give people benefits.)

It took me two days of frustration (with lots of breaks) to fill out the forms, which asked for a surprising amount of detail about a number of personal topics. It’s often a challenge for me to play it straight when I get frustrated, too - which won’t be a surprise to anyone who’s ever met me. When asked, for example, “How have your shaving habits changed since your illnesses, injuries, or conditions began?” I had to mentally bite my tongue to refrain from writing “I go full Brazilian now”, reminding myself that whatever underpaid SSD worker has the thankless task of entering these answers into some byzantine database was not likely to appreciate my sarcasm. I thus stuck to the script and felt quite virtuous about it. (I did include “people-watching at doctors’ offices” in my list of ‘current hobbies’, though. I’d entered “people-watching at coffee shops” in the list of ‘previous hobbies’, and they asked how those hobbies had changed. I’m not made of STONE, people!)

To be fair, forms like this have always been my kryptonite. At this point, I sometimes can’t tell whether things are the result of my brain injury, or if I would have done that/been like that anyway. It’s often the frequency and the intensity that tip me off, rather than the experience itself. I had a hard time remembering things during the pandemic, for example (as did most of the people I know), and the peri-and-then solidly-menopausal hormonal stew my brain was marinating in didn’t help. But now my words go missing so frequently I can feel my brain buffering like a bad internet connection, and they hide when I look for them.

The intensity of the experiences is what really gives them a noticeably different ‘TBI’ flavor. A friend recently told me she’s suffering from hormonal memory lapses, where she’ll start cooking an egg and then go to send an email or whatnot, and only remember the egg when she smells something burning. She asked if that’s what it’s like for me all the time, and I had to think for a moment. [buffering…buffering…] “Sort of?” I said. “Only I’d be more likely to smell smoke and think, ‘What’s burning?’ and not remember that I’d started cooking an egg in the first place until I saw it.” (Fire-safety-conscious friends, worry not! A culinary triumph for me these days involves boiling water, which is quite forgiving about timing, and then putting in fresh pasta that cooks while I watch.) My current relation to cooking is also something I got to report on the ‘Function’ form, which included an entire section on making meals, although “sandwiches, frozen dinners, or complete meals with several courses” were the only examples they provided for the sorts of meals I might be regularly preparing. Some day, I’d love to meet the person who came up with the options they list as examples on these questionnaires, because they are so random.

In any event, the Work Report was relatively straightforward and felt not unlike filling out one of those annoying ‘How Do You Allocate Time During Your Work Day?’ surveys that university administrators love sending out. The only tricky bit was figuring out whether I should tick the box for ‘was a Lead Person in my former job’, mostly because I don’t have any idea what a Lead Person is except in the context of factory work. (I decided I was, because I’ve chaired so many things and run so many grants and such. Why not?)

It was the ‘Function - Adult’ form that fried my synapses and tried my patience. Here is a photo of my favorite page:

First off, “describe what you do from the time you wake up until going to bed” is a horribly written sentence. Why not just use the parallel construction that’s RIGHT THERE, namely “from the time you wake up until the time you go to bed”? You might think it’s petty of me to mention this, given the bigger picture, but that sort of grammatical unevenness is exactly the sort of thing that catches me up when I read now: I have to sit there and puzzle out what the sentence means to make sure I’m really understanding it.

Second, are other people’s lives really so consistent that they can give one single, six-line answer to that question? I did my best, but it was the question I saved until almost last to answer, because it was so baffling to me - especially since my days differ radically depending on whether I’m having a flare-up or not. Trying to err on the side of ‘flare-up’ and fit my answer in the space, here is what I wrote:

“I wake up around 8:30am, have coffee and breakfast, and check my phone to see how my friends and family are doing. I usually have to rest around 10:30 until 1:30pm or so, and then I have lunch. I try to read every day, but I listen to audiobooks a lot because they’re easier to understand than written text. I do my cognitive therapy exercises, and often I have doctor’s appointments. I talk to my husband, care for my plants, and chat with family and friends via text. We usually eat around 6pm, and sometimes watch a show. I go to bed around 8pm.”

Now, I don’t want to brag, but I feel like this would be a strong contender for the world’s worst ‘What Did You Do for Summer Vacation?’ essay. What on earth was I thinking when I wrote that? You’d think I have brain damage or something: “I talk to my husband and care for my plants”?? Dear Lord. “And sometimes watch a show” - what century am I from?!

I believe I made up for it in my answer to the “What were you able to do before your illnesses, injuries, or conditions that you can’t do now?”, however. I was so indignant at the idea that I could describe what I’ve lost in the past year in the space of ONE LINE that I basically turned into Roy Batty from Bladerunner in the “Remarks” section of the form.

“I’ve done things you people wouldn’t believe…I had an active social life and a marriage in which my husband and I shared equally in caring for attack ships on fire off the shoulder of Orion…I’ve organized international workshops and watched C beams glitter in the dark near Newark Gate 127…Now it’s taken me two days of concentrated effort just to fill out this form, and information in my working memory disappears like tears in the rain.”

Time to give me Social Security Disability Benefits.

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That’s all for now! Until next week, be nice to your noggins.