“I’m writing an entry about my cognitive dysfunction, and I thought I’d ask you about whether there’s anything about it you notice. Wait, I asked you this last week, didn’t I?”
“Yes. And I suppose that’s an anecdote in itself.”
Perhaps unsurprisingly, a neuro-immune illness affects the functioning of one’s brain.
I was still well enough to be working at the office – which was the first two years I was ill – when I realized that I was gradually but very noticeably (at least to me) getting dimmer. It first became obvious because of a particular co-worker who was lovely to interact with, but usually a touch slower on the uptake on new concepts than I was. The longer I was sick, the more I realized that our comprehension speed was drawing nearer and nearer to being the same. And as I found us on a more level playing field, I regretted my previous impatience with her, which I’d always done my best to conceal, and felt a greater sympathy for her frustration when people (which had included me in the past!) ran through things too fast for her.
When I look back at work I did in those early years, before my illness got so severe, I almost can’t comprehend that that it was once something I was able to do. As I tipped toward the ditch of the crash that ended my career at the end of 2007, tasks that were once effortless went more slowly. Technical materials that were difficult but understandable became a confusing morass. Things that were a challenge came to be nearly impossible.
Among other things, I was an Excel specialist at my last job, and I had been forever trying to encourage my colleagues to learn about the wonders of data analysis. It was something I loved, but not generally something that many others thought was fun. When I look at old workbooks now, I can’t even begin to get my head around their complexity. Some of this, admittedly, is just being out of practice, but some of it is that when I try to suss out an involved formula, my cognitive dysfunction means I lose my hold on element one before I get a grip on element four.
On top of that, I had long been a natural editor, and that’d been a sideline of mine in every job I’d ever had. When I read, errors would just pop out at me from the page, as if they were in 3D. As I got sicker, I had to read with effort to find errors, and now, I’ve lost the ability to see some types almost entirely. My eyes just skim right over them pretty often, and they don’t even register. These days, there are times when I’m reading that very basic errors of English – things like there/their/they’re – are something I have to think deliberately about. And my spelling skills have become terrible – I am constantly inserting the wrong vowels when I type, or unable to remember which silent letters are involved in a word, or I unconsciously I type a homonym with an entirely different meaning and then stare at it, trying to figure out why it doesn’t look right.
I also have a terrible time with aphasia, specifically word-finding. Aphasia is a funny thing – I have different problems with different parts of speech. Verbs are not generally a problem. With nouns, it’s like my search function is just slow, and even if the object is right in front of me, it takes my brain five or ten seconds to reach it in the mental lexicon. So I’ll say to Chimp, while holding an empty pill bottle, “Would you please bring me a new bottle of……betaine?” Even if he realizes what noun I’m searching for, he’s mostly kind enough to wait for my brain to try to come up with it, so that I don’t feel like an utter failure.
My uncommon-but-not-obscure adjective bank, on the other hand, seems to have almost entirely evaporated. If it’s not a word I use everyday, sometimes I’ll find myself saying to Chimp, “It’s an adjective that means so and so, and it’s sort of like such and such, but not this.” He can usually supply it, but if he’s not around, I might sit there for three minutes trying to think of it, and the odds are pretty even on whether I’ll eventually come up with it or not before resorting to an online thesaurus in total frustration.
My writing has also suffered, not least because of the language issues. I used to write a vegetarian food blog, She Spills the Beans (I moved it over from TypePad to WordPress, and I’ve never had the extra energy to go back and add in all the photos…apologies…they were not really very good anyway, so your mental images are probably better, honestly), and when I read those entries, I can both hardly understand them and hardly believe that I was the one who wrote things that complex and creative. I feel like I’m banging two rocks together over here by comparison.
Besides all the language issues, my long-term memory has gone totally to pot. I do sort of try to live in the present because of the illness, but the memory loss enforces it. There are so many times when Chimp will bring up some episode in our 16 years of shared history, and what he describes will sound familiar, as if it’s plausible that it did happen to me, but I can’t bring up an active memory of it – like it’s equally likely it could be a real memory or a created one. Just recently, I mentioned that my hairbrush was wearing out, and the next day he came home from the store with one. When I picked it up, he said, “Remember that we used to have one just like that?” I looked at it and – well – if he hadn’t said so, I don’t think I ever would have remembered that it was the case, but it gave the brush a definite feeling of familiarity. However, without prompting, I think that would have remained utterly lost to me – and how many other things are?
But all of these issues are subjective, right? What about measuring all of this objectively? I’ve made an attempt at that. I had neuropsychological testing done during my absolute worst year, the year I couldn’t get out of bed at all, in hopes of validating how bad things had gotten, as part of my disability application. As the test proceeded, I could tell I was performing utterly terribly as compared to how I used to function, but frustratingly, I came out within normal ranges according to the tests. As Chimp has said, flatteringly, “The thing is, you were batting .400, and now you’re batting .300, which is no slack, but you’re constantly comparing yourself to all those years of .400.” My identity did use to be significantly tied up with my smarts. But thankfully, I have something else to focus my identity around now!
Not all of this is the illness, I know. Some of it is just getting a little older and thus having a longer period of memory, and some of it is that I’m loaded down, nightly, with a few soporifics that have psychological effects, and one of those has an especially bad reputation for turning one’s brain into cotton balls. I so wish I could drop that one especially, and see what my function is really like, but it’s keeping me alive. Cotton balls, unfortunately, for now, are the order of the day.
As symptoms go, though, the brain fog and memory issues, for me, are honestly some of the least bothersome. I do feel like I’m trying to cut the world around me with a butter knife a lot of the time, but it’s like that – annoying but not crippling. I would rather not have these problems, but there are a lot of other things I’d put on the list to get rid of first – with insomnia, cardiac output, fatigue, sensory sensitivity, and temperature intolerance at the top of the list.
If you’re wondering about measuring your own cognitive function, there’s a pretty-manageable test to be found right here. Let me know what your cognitive frustrations are, or how you did, in the comments, if you’d like.