At this early stage in my disease, I sometimes feel embarrassed describing my symptoms. They feel so prosaic. I can’t mention a particular symptom without someone (often my wife Marja) saying, “I know what you mean; I have just the same thing.” What I want to say in return is, “Well, no … you don’t.” Usually, however, I hold my tongue.
The deficits I notice in my cognitive functioning are sometimes major, like getting lost or misestimating the church budget by $24,000, but more often they’re losing things or being slow on the computer or just plain confusion. The confusion isn’t necessarily obvious to anyone else, but I can feel myself getting lost in a process.
This morning, for instance, I got really confused just writing in my journal. A single page took me an hour and a half to write (without even going back much to edit). Ordinarily it would have taken me twenty minutes or less. But this morning I made several typos perhaps every line. I constantly left out words or phrases that I’d intended to write but didn’t. I’d go back to fix it and would shortly thereafter noticed that the way I fixed it was wrong, too. Sometimes it took me several minutes to finally fix a misplaced word or phrase.
I was sure that at one place in that journal entry, I’d written four bullet points onto the page. A few seconds later, though, I looked up and there were only three bullet points. I could have sworn there were four; apparently I’d gotten confused between deciding to write something and actually doing it. What I can’t describe very well is the sense of confusion, like living in a fog, not quite connecting with the world about me.
A couple of days ago, I wanted to insert some of the stories I’d written a few days earlier into the blogs I was currently writing. Because my memory is now so poor, I needed to make sure I hadn’t used those stories in previous posts. It meant reviewing a couple days worth of posts on the blog, several stories I was currently working on and several stories that were in my journal but not yet used.
I keep the journal, the working files and the posted files in three different folders. As I went back and forth between the three folders trying to compare the stories, I kept getting lost between the folders, getting confused about what I was trying to do, reading some files over and over and not reading others at all. There were only six or eight stories among eight or so short files, but I couldn’t remember which story was where. A ten-minute job took me at least half an hour. What was most difficult for me, again, was this sense of being lost in a familiar area. Why can’t I do this?
Another confusion: Some of the radio interviews scheduled for the coming weeks asked for Marja’s participation, too. When I’d written down the interviews on my calendar, however, I’d forgotten to indicate whether Marja had been invited. Only when Marja asked to which she should come did I realize I needed to keep track of it. So I went back and found the emails containing the requests; in one case I had to call the interviewer. Now I have to remember to write it down with future requests. It seems a little thing … and perhaps it is. But the little things build up.
And knowing that my cognitive functioning is impaired can create doubt about my thinking, for instance, did I lose my coat on the train coming back from Napa or was it stolen?
Nowadays, I lose things pretty often, for example, my sunglasses while in Napa or misplace things many times a day, so it no longer bothers me so much. But if I actually lost my coat (as opposed to having it taken), I’ve reached a much worse level of impairment than I was aware of. I remember taking the coat off the overhead rack exactly once on the trip, during a rest stop when it was drizzling. I specifically remember putting it back in its place, slightly damp. Then it was gone.
I searched for it everywhere, asked the conductors and at lost-and-found. So if I had lost it, it wasn’t in the train, which meant that I would have had to have taken it outside, taken it off, set it down, and left it there when I got up. I don’t remember doing anything like that. To lose something by misplacing it is one thing, but to have taken all those steps and not remember any of them is quite another.
I’d like to believe it was stolen. But it was an old coat, valuable only to an indigent person without a coat, and those folks don’t usually travel by train. More importantly, I’ve been on many 3-day Amtrak trips across the country and I’ve never even heard of any theft of any kind, despite the fact that computers, luggage, and other things are commonly left in plain view. Things just don’t get stolen on Amtrak.
It’s not so much the value of the coat that bothers me; I’ll get a new one from Value Village. It’s not that I don’t know this sort of thing will eventually be happening a lot. What bothers me is the uncertainty, the not knowing where I’m at. Did I blot the whole thing out? If I’m that far gone, what kind of precautions should I be taking? Should I be traveling alone? Should I be driving? Perhaps losing the coat shouldn’t matter, but it matters to me! How far along am I?