The life of an amnesiac

amnesia

In the New Yorker, my friend Dan Zalewski reports on Lonni Sue Johnson, a 64-year-old with profound amnesia—and new research into how her brain, and memory, works.

The piece is filled with fascinating meditations on how memory works, not just in the mind of a deep amnesiac, but in typical brains. Here's one of my favorite passages, in which Johnson and her sister Aline—who helps Johnson navigate daily life—visit the lab of neuroscientist Nicholas Turk-Browne:

The first time that Turk-Browne met the Johnson sisters, in the parking lot outside the laboratory, it took him a little while before he could tell which woman had amnesia. Johnson chats brightly about the weather, and at a family lunch she politely requests more fruit salad. Because Aline supplies a daily schedule as unobtrusively as a personal assistant, Johnson can seem like an executive gliding through a series of meetings. From moment to moment, she basically knows what to do. Our personal memories seem so essential that one might expect to be paralyzed without them. But our waking life may involve less conscious reflection than we suppose. In 1999, the psychologists John Bargh and Tanya Chartrand published a paper, “The Unbearable Automaticity of Being,” arguing that our default state is reacting to the latest stimuli. We adopt the roles that our immediate environment provokes. Studies indicate that people are more attentive observers when wearing a lab coat; a taxi-driver’s surliness arouses a mirroring anger in ourselves. Because so much of our behavior is not mindful, it isn’t really stored away. After a busy workweek, we can’t recall locking the front door or what we hummed while washing our hair. Maggi told me that when she asks Lonni Sue, “How was your day today?,” she says, “I have to look at my schedule.” This is extreme, but all of us have noticed a novel on our bookshelf and realized that we can’t recall reading it, let alone its plot. This may explain why forgetfulness seldom dismays Johnson: it is an ingrained state of being.

That striking photo of Lonni Sue Johnson is by Phillip Toledano, whose pictures illustrate the piece.

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  1. Memory is fucked up and fun stuff. I have an extreme version of prosopagnosia and may have always had, but the way memory works I didn't precisely know it for most of my life and considered people who could connect such information as particularly gifted, on a good day. On bad days I simply considered myself particularly stupid and self-centred.

    Eventually I figured it out, stopped trying and thanks to that got marginally better at it, not much but some. Mostly now I accept it and have tools to help and people who know/know to help me with that sort of thing.

    People in my family (the worse ones) would have fun at my expense. If they encountered me in public they would do things like walk up and ask me for directions or something as a stranger would, then go about their business, grinning at their knowledge that I had no idea who they were. This was before I knew but could still occur today.

    That was deliberate cruel stuff, but minor. It was far more problematic in that if someone I knew encountered me, but didn't know me well enough to know I couldn't easily recognize people, they'd think I was snubbing/a jerk/self-centred/all of the above. It cost me much over the years.

  2. This is striking me frightfully close to home.

    When I was a teenager (a couple of decades ago), I had a malignant tumour in my left temporal lobe. After two surgeries, chemo and radiation, I came out of it cured and seemingly unscathed. My memory and cognitive functions were intact, the seizures that had been happening prior to the last surgery came to a full stop, and other than a badass physical scar and some inconspicuous bald spots, I came out pretty much unharmed.

    Now fast forward a couple of decades. One day in 2013, I suddenly couldn't form new memories. My long term memory was fully intact, but my brain was not recording any new information. I of course have no direct recollection of this. My first distinct memory was about an hour after it started, sitting in the back of a taxi on the way to the hospital. I was asking my wife what was happening and I remember her saying that she could answer, but I'd just forget it again in a minute anyway. Slowly over the next hour or two, my memory started to function again properly. After a few hours I was back to my normal self.

    The first diagnosis was that there was another growth happening, and that had us freaked out for a few weeks. Thankfully the MRI came up negative there. The next one was Transient Global Amnesia, the symptoms of which were identical. That diagnosis was dropped a couple of months later when the event repeated a couple of times on a lesser scale. Finally we settled on them being seizures, although quite unlike the ones I had as a teenager.

    So now I'm dealing with those seizures (more frequently, but on a lesser scale), and trying to find the correct medication/dosage to stop them. In the mean time though, even the slightest mental difficulties (name or word recall mainly), are starting to freak me out. Reading this article brings to mind horrible futures that may be mine.

    Now... what was I writing about?...

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