Do Our Memories Make Us Who We Are? One Artist’s Memory Loss Suggests Maybe Not

“When the neuroscientists discovered that Lonni Sue existed, they realized that she had all of these skills that don’t necessarily fit into our idea of memory.”

Michael Lemonick is the opinion editor at Scientific American and the author of multiple books on science and astrophysics, including Echo of the Big Bang, Mirror Earth, and The Georgian Star. His newest book, The Perpetual Now, covers a story closer to home—that of Lonni Sue Johnson, a successful artist with a unique case of memory loss. Michael recently joined Jeffrey Kluger, senior science writer at Time magazine, for a conversation on what Lonni Sue’s life has revealed about the nuances of human memory.

This conversation has been edited and condensed. To view the full conversation, click the video below. 

Michael: The story I’m telling is of an amnesia victim, [Lonni Sue Johnson], who was hit with viral encephalitis that destroyed the structures in her brain that allow her to form and retain memories. As a result of this, she cannot remember most of her past, and she can’t form new memories, so she’s in this perpetual now.

Jeffrey: [And] you came to it through a much more personal connection.

Michael: Yes, I was walking down the street in Princeton, New Jersey one day—where I live and grew up—and a woman approached me. I recognized her immediately because we’d gone to middle school together and played in the high school orchestra together. She introduced herself as Aline Johnson. I was like, “I know who you are. Come on.”

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She knew I was a science journalist, and she said, “Have you heard about what happened to my sister?” [Her sister had been] a very successful commercial illustrator who did covers for The New Yorker and illustrations for the New York Times and book covers and corporate clients. [Aline] started telling me the story of her sister’s memory loss and how she was now being studied by neuroscientists. [Aline] wanted me to write about it. I was immediately interested because it sounded so familiar.

Anybody who’s taken an introductory psych or neuroscience course knows about HM, the guy whose memory apparatus, his hippocampus and some surrounding tissues, were deliberately destroyed in 1953 in an operation. They were trying to cure epilepsy, which actually they mostly did.

Jeffrey: They did, but the unintended consequences…

Michael: Yes, because they didn’t know what the hippocampus did. [After] HM came out of the surgery, the doctors and nurses would come see him every couple of hours and even when he’d seen them 10, 15, 20 times before, he had no idea who they were. It was like, “I’ve never seen you before.” “You saw me 10 minutes ago.” “Nope, sorry. Don’t recognize you.” They realized, with a shock, “Oh. That’s what the hippocampus does.” They stopped doing those surgeries, but he’s this classic case. He launched the modern study of memory.

Jeffrey: And that was the part of the brain, the hippocampus, that was destroyed by Lonni Sue’s encephalitis.

Michael: Exactly. There have been very few cases, if any, beyond this guy, of deliberate destruction of the hippocampus, but it can be damaged by head trauma and for some reason this HSV-2 virus, when it goes into your brain, loves the hippocampus. It goes right for it and it starts eating it. It’s happened to a number of people. As soon as Aline said, “She has this particular kind of damage,” I thought, “Oh, another HM.” He was so pivotal because by studying him, neuroscientists began to understand how memory actually works in the brain.

Jeffrey: This story began as a story for Time magazine. One of the things you described in [it] was that experience of walking in, meeting Lonni Sue, having her say hello, looking very happy, saying, “Oh, have I shown you my drawings?” And she shows you some drawings.

Then a couple of minutes later, you walk back in and she says, “Oh, hello. Nice to meet you, have you seen my drawings?” On the one hand, that’s a very real and very stark phenomenon. On the other hand, [while] her art is radically different, it’s still better than what you and I can do. It clearly is still the skill of a professional artist.

“The kinds of memories that you might use in playing a viola—or, more typically, riding a bicycle—you don’t remember intellectually. You can’t say, ‘Well, then you lean one degree to the left.’”

Michael: Not only that, it retains some of the character. Some of her signature visual elements and approach are the same. That’s why I was persuaded that this case was worth writing about, even though we had HM. Because he was the first case, they had to ask the most basic questions about how his memory operated, rough outlines. One thing they discovered with him which nobody had proven before was that the kinds of memories that you might use in playing a viola—or, more typically, riding a bicycle—you don’t remember intellectually. You can’t say, “Well, then you lean one degree to the left.” Colloquially, we call it muscle memory. They did some experiments with HM that showed that he could actually acquire new memories of that kind.

They put him at some simple tasks, like drawing. They had him trace an image of a star with a pencil, but not looking at his hand, looking at a mirror. That’s very difficult to do, but if you practice you can get better at it. Sure enough, even though he didn’t know who the doctor was after seeing the doctor 15 or 20 times, they had him practice this over several days and he got better at it. Somewhere in his brain, he was acquiring new knowledge that he remembered, at least with muscle memory. Evidently, the fourth or fifth time they had him do it, he commented to the scientist, “This is very strange. I’m not so bad at this, but I’ve never done it before.”

That basic division—between explicit memories that you can talk about and implicit memories that are in there somewhere but don’t manifest themselves—they learned that those were two separate memory systems. You needed the hippocampus for one but not for the other. That was already one crude division, but as neuroscientists have looked at other patients and performed more complex experiments, they’ve learned a couple of things.

One is that memory takes very many forms in the brain. There’s something called statistical learning, where you learn that certain images, situations, or sounds are associated with each other more often than others. Some people think it’s how language is learned. Babies hear this sound with this sound and learn that these are associated, but they don’t explicitly know this. It’s somewhere deep inside. That’s a whole different kind of memory, so there are many things to test that [they] hadn’t even thought to test with HM.

Jeffrey: There’s some thinking that the common mispronunciation of nuclear as “nucular” is less a function of people not knowing the word than it is a function of that pronunciation defies certain rules about how words structured like that are typically pronounced. Similarly, “ask” comes out “axe” sometimes. It’s because those letters aren’t supposed to be in the S-K order. They’re supposed to be in the K-S order.

Michael: Interesting… Well, when the neuroscientists discovered that Lonni Sue existed, they realized that she had all of these other skills and accomplishments and experiences that don’t necessarily fit into our idea of memory. How to play a viola, well, it’s like riding a bike. You can’t really say, “You move the bow three inches up and then to this angle with 10 pounds per square inch of pressure.” You just internalize it.

The fact that she could do these things, that she could still draw, that she could still talk about the rules of aviation, that blew their minds. But if you show her a dozen famous paintings—she studied art history—and say, “Who painted those?” She has no idea.

It’s way more complex than the simple story of HM. I knew very little of this when her sister first approached me on the street, but I thought, “This is an update of a very well-known story in neuroscience,” and that’s why I said, “I’d love to write this story up for Time.” In fact, I’d even written about HM in Time, in passing. HM was this remote character that nobody got to interview, nobody got to interact with, except the scientists. I wanted to bring readers into the room and say, “This is what it’s actually like to be with a person like this.”

Jeffrey: Expanding a story from 4,000 word piece to a 120,000 word book—30 times as big—the scales are radically different. Does the first story feel like a haiku, and it’s not part of your thinking anymore?

Michael: Basically, it’s an outline. In the space I had available in Time, I introduced what it’s like to meet her, very brief outlines of her background and of what the scientists are doing, the history of memory research, and I was done. Ran out of words. I could give you the slightest flavor of what she was like as a person. I mentioned that her neighbor found her incoherent in her kitchen.

He comes across her and she’s digging in the flowerpot with her fork and looking at the mouse on her computer like, “What is this thing?” He says, “Are you okay?” “Oh, I’m fine,” but she’s clearly not fine. How’d they get her to the hospital? It turns out they had to convince her. She didn’t want to go. “Well, we’ll let you wear your favorite pilot’s hat if you get in the car.” “Oh, okay. I’ll do that.” All of that rich detail that brings her to life I couldn’t include.

“The essence of who she was was exactly that same person. Before the illness and after the illness, that self I thought she had lost was actually completely intact. She’s missing memories, but whatever moment she’s inhabiting, she is fully there as the person she always was.”

We would talk to many of her friends who knew her in Cooperstown, New York, and they had a lot of stories about her. This allowed me to get a real sense of her as a person, and to change my entire thinking about this whole story. I went into it with a tentative title “The Woman Who Lost Herself,” because my argument was that our memories are so integral to who we are that if you have no memories, you don’t know who you are or where you came from.

Jeffrey: It’s the annihilation of the self.

Michael: [But as] I talked to all these people and found out who she was beforehand, and watched her in a number of current situations—including, most poignantly, with her mother, who was 90 when she was struck with encephalitis, and 97 when she died in 2015. She had been the co-caretaker. She was in possession of all her marbles. Lonni Sue performed at the memorial service. She read from a short bio she’d done of her mother before the illness, she played the viola, she sang a song. She totally charmed the audience. They just loved her.

I sat in on research sessions. The scientists who were studying her would crack up because she would just keep making puns and jokes and she was so full of joy. It was infectious. Literally they had to stop the experiments to laugh.

I came to understand, through those experiences, and from talking to people who knew her before, that the essence of who she was was exactly that same person. Before the illness and after the illness, that self I thought she had lost was actually completely intact. She’s missing memories, but whatever moment she’s inhabiting, she is fully there as the person she always was.

Jeffrey: Just this morning, I Googled “Lonni Sue Johnson magazine covers,” and there are a bunch of her New Yorker covers and a number of pictures of her art now. There’s one of a woman frolicking through this storm of words and letters, and so much of her art came back to her through what you call her hyper-graphic period, when she was working on word puzzles. Can you tell me how that happened and what that means about the way the mind works? Because her art is beautiful.

Michael: About a year after this illness struck her and she lost her memory, she was not interested in anything. She would play viola if you told her to, but she wasn’t into it. She wouldn’t initiate anything on her own. Her sister Aline was out for a walk and ran into an old friend just by chance, and this old friend was a puzzle writer. She wrote word search puzzles, where you have a grid of letters and you circle the words hidden there.

This friend said, “I write these puzzles. Maybe Lonni Sue would like them.” Aline was like, “Yeah, okay sure. Why not? We’ll try anything.” They gave her these puzzles and she went crazy. She loved them. She couldn’t stop working on them, and she’d fill out all the books. She had done all the books and was in despair because, “I’ve run out of books. I need more books,” and her mother wasn’t able to go and get some for her right away, so she started creating her own word search puzzles.

At first it was just words, and then the art started to appear surrounding the words. For reasons nobody fully understands, she has become fascinated, obsessed with words and wordplay and spelling and letters.

One theory that is pretty plausible is that the alphabet is something you learn before you are aware you’re learning it. Every three year-old can say or sing the alphabet song, and it’s ingrained in our minds the way numbers are. It’s one of the most fundamental patterns that we learn, almost to the point that it’s like muscle memory. You don’t think, “A… what comes after?” You just know. That is something she can hold onto and apply her creative impulse to—because she still has that creative impulse even though she doesn’t have the information.

Jeffrey: It provided an avenue back into the arts.

Michael: A scaffolding, you could call it, on which she can build. It’s like a playground where she can work out her mind, or what’s left of her cognitive abilities. She never did this before, but now her art is a sort of amalgamation of letters and words and drawings, and it all fits together in some way.

Jeffrey: You mention visiting Eric Kandel in his office at Columbia, and he is studying the Aplysia californica, a form of sea slug, because it has a very simple brain. He points to a picture of this completely grotesque creature and says, “Isn’t it beautiful?” How do you find those moments of delicious humanity in scientists?

Michael: The secret is, you don’t really find them. You don’t elicit them, you just keep your ear open, and when you hear something like that, you scribble furiously because those are the moments that really show you how passionate these people are about what they do.