Science writer Michael Lemonick interviews an old friend who lost the ability to form memories after an injury.

Michael D. Lemonick is chief opinion editor at Scientific American; previously, he was a senior science writer at Time magazine. He is also the author of seven books, including, most recently, “The Perpetual Now: A Story of Amnesia, Memory, and Love.” He also teaches at Princeton University, and lives in Princeton, New Jersey, where he grew up.

This story originally aired on Nov. 17, 2017, in an episode titled “Reflection.”

Story Transcript

A couple of years ago, a woman approached me on the street and introduced herself.  “I’m Aline Johnson,” she said.  “I don't know if you remember me, but have you happened to hear what happened to my sister?” 

It turns out this introduction was completely unnecessary because, even as she approached me, I started flashing back to middle school.  Aline Johnson and I played in the orchestra together and this middle-aged woman who was approaching me I began to visualize as a twelve-year-old girl lugging her cello into the orchestra room.  I could hear the voice of the director saying, “Aline Johnson, stop fooling around and tune up your cello.”  I mean, I could hear it.  And actually, listening back, the woman had a Midwestern accent.  I didn’t know it at the time. 

So I was having these two things going on at once, and I will tell you what happened to Aline Johnson’s sister, but I have to tell you that this experience of seeing her in both ways as the woman in front of me and the girl in middle school, that kind of stuff happens to me all the time. 

It happens for one reason, because I have a really good vivid memory of events in the past, very detailed memory, but it’s also because I live in the town where I grew up and so there are memory triggers everywhere.  I see the faces of people walking up the street that I knew in the 1960s, believe it or not.  You'll probably believe it.  And the ‘70s and the ‘80s and every decade since then.  And those trigger memories of my encounters with those people, like storefronts and sidewalks and street corners.  I go to the local shopping center and I see the place where I held a girl’s hand for the first time.  It just comes back to me so it’s very moving.  It’s an exciting thing. At the age of fourteen, I crossed the street at Washington Road and Nassau, and I flashed back to third grade when the crossing guard yelled at me for not following his instructions. 

These things, it happens all the time and you'd think it would be overwhelming, but it’s actually not.  It’s kind of comforting, in a way.  It’s like reading a diary that you've been keeping since before you could read and before you could write.  It’s the story of my life.  Of course, that’s the most important story in the world to me. 

I try not to regale people with these stories too often because it’s not that important to them.  It’s like telling people your dreams.  You know, “Last night I dreamt I was an ice cream cone except I was riding on a horse and I was wearing a tuxedo.”  That’s really intensely interesting to me, but, for other people, it just doesn’t have the same impact. 

But my memory is really important to me.  That’s what I’m trying to say to you and that is why Aline Johnson’s story, why it was so upsetting to me to hear, sort of profound. 

What happened to Aline Johnson’s sister was this.  A few years earlier, before we ran into each other, Lonni Sue Johnson had come down with a brain infection, viral encephalitis.  It’s a very serious infection and it might have killed her, but it didn’t.  Her friends got her to the hospital in time. 

But when she emerged from her fever, she had profound amnesia.  She was what neuroscientists called densely amnesic and that’s because the virus had attacked a part of her brain, the medial temporal lobes and, especially, the hippocampus, where memories are consolidated and kind of stored away. 

Without that functioning, she could no longer remember most of her past.  She couldn’t remember that she’d been married for ten years.  She could not remember that her father had died a couple of decades earlier.  In fact, when they told her about it, she grieved all over again for him even though she had at the time.  So it’s this terrible situation.  She cannot remember her past.

But it was even worse than that.  Lonni Sue Johnson could also not form new memories based on her experiences.  So they told her her father died and she grieved, and five minutes later she looked around the room and said, “Where’s Daddy?”  And they had to tell her all over again, and she grieved again.  So she could not form new memories. 

If you met her and left the room and came back, she would have no idea she’d ever seen you before.  You'd go out and come back a dozen times and she would still not know. 

So this just seemed terrible to me, but it was not unfamiliar because, when I was in college, when I was a freshman in college, in Introductory Psychology I had read about and heard the story of HM, this guy who, in the ‘50s, had his medial temporal lobe and his hippocampus destroyed through surgery, not through a brain infection. 

But he had exactly the same symptoms.  In fact, he was literally the textbook case of this kind of amnesia because before then nobody knew what that part of the brain did.  Afterwards, they knew unfortunately for him. 

I read about him and I was just haunted by this story.  What would it be like?  My memories are so important to me.  What would it be like not to be able to access them?  I mean, who I am is really based on my experiences, the people I knew, all the things that made me who I am today.  If I couldn’t access those, who would I be?  As a science journalist, I'd come back to that story a number of times and I'd always just wondered, what was that like? 

I never got a chance to interview HM.  He died before I could.  But now, here was Aline Johnson, standing in front of me, offering me the chance to do that with her sister.  She wanted me to write about her.  She wanted to publicize the case to draw attention to brain research. 

Of course, I wanted to do this.  It was an amazing opportunity.  So a few weeks later, I found myself at the family home, knocking on the door, very apprehensive. What would this person be like?  How do I talk to her?  It turns out I need not have worried. 

I knocked on the door, I walked in, and this woman sitting at a table, dining room table, looked up at me and her face beamed.  She gave the biggest smile you could imagine. 

She said, “Hello, hello.  Come on over.  Would you like to see my drawings?  Do you like music?”

She was just so engaging and so warm.  So I came over and I looked at her drawings and there were these elaborate, beautiful drawings of people and stars and moons and horses and airplanes interspersed with words and letters of the alphabet.  It was very, very strange kind of stuff.

But I didn’t have a chance to think about it because she said, “Do you like music?  Do you like to sing?  Do you like the alphabet?  Have you ever sung a song of the alphabet?” 

I said, “No, I don't know what that means.” 

She said, “I'll show you.”  So she launched into this song.  She sang and, forgive my voice, she sang, “Artist beautifully creating delightful experiences…”

And she went on to the end of the alphabet, one word for each letter of the alphabet.  She was improvising the tune and the words as she went.  It was amazing. 

So I was really beginning to understand that this woman had more going on in her head than I could have imagined. 

But I came back in and met with her again and met with the scientists who were studying her and met mostly with the sister and their mother, who has since died, to tell me her story because she couldn’t tell me her own story. 

What I realized was that the music and the artwork didn’t come from nowhere because Lonni Sue Johnson had been a very successful illustrator.  She had drawn covers for the New Yorker magazine and for stories in the New York Times and book covers and artwork for corporate clients.  She was really, really successful in her field. 

She was also a very talented amateur musician.  She played viola.  When she was a sophomore in high school, she would sit in with the Princeton University Orchestra.  She was good enough to do that.  She also, it turns out, was a private pilot, that’s why the planes were in the pictures.  She owned two planes and she flew all over the northeastern U.S.  And she was a writer.  She wrote a column for the local newspaper, of course down in New York, where she lived. She was a businesswoman, a small businesswoman.  She ran her art business. But also, as if she didn’t have enough to do, she ran an organic diary on the farm where she lived in Cooperstown. 

So she was this amazingly accomplished woman who had expertise in many, many different areas unrelated to her.  She spent a lot of them involved in creativity, as opposed to HM, who basically, because he suffered from severe epilepsy and had this operation when he was twenty-seven, he had no hobbies, he had no special areas of knowledge. 

So it became clear to me that this was an opportunity for neuroscientists to learn much more than they had.  They learned a lot of basic stuff from him, but with a patient like this, who they were now studying, they could delve much more deeply into the subtleties of memory and creativity. 

They were doing that, and so I went along to sessions of testing and talked to the scientists.  And it began to dawn on me as I did that that my initial idea that somebody with no memory would have lost herself.  In fact, the working title of this book I was deciding to work on was The Woman Who Lost Herself.  I thought that was very clever and, based on my own experience, that’s what must have happened. 

And my editor liked it so that was the working title.  Very important to make your editor happy. 

But as I went along, I realized there's something wrong with this conception.  Every time I met her, she told me the same jokes and sang the same songs, the alphabet song.  Once, she actually performed the alphabet.  So she formed her body, as best she could, into the letters as she sang the song.  So this was A and B.  I can’t even do it. 

And she would break up laughing because she was having so much fun. 

More than once I watched her end or temporarily halt a testing session because she cracked the scientists up.  She would make jokes in the middle of their tests and they would just have to stop because they were laughing too hard.  They put her in the FMRI and she was so happy she would, like, dance, lying on her back but sort of dance. 

They’re like, “Lonni Sue, keep still.  We need to take a picture of your brain.” 

So she was this delightful, engaging person. 

Once, I did an informal interview.  I tried to and it wasn’t very easy because the conversations were very circular and she kept asking if I liked music and so on.  But, every so often, she would come out with something out of left field that just blew me away. 

So once we were talking and she said, “You know, flying a plane is very much like playing the piano.” 

I said, “Why is that?” 

She said, “Well, when you fly a plane you have your hands on the wheel or the stick and you have your feet on the pedals operating the rudders.  And you sway back and forth with the wind in the sky. 

And when you play piano, your hands are on the keyboard and your feet are on the foot pedals and you sway back and forth with the music.” 

I’m thinking, “Where did that come from?  There's a poet inside there.” 

My idea about memory it was just so misguided, or it seemed to be. 

The situation now is that her memory has not gotten any better.  If you ask her about it, she’ll say, “Well, yeah.  Sometimes I forget things.  My memory is not too good.” 

The point is that she has no understanding of how profound her memory loss is and so she doesn’t miss it.  She does not miss her memory.  While her knowledge of her own experiences is gone, she doesn’t miss that either.  She doesn’t know what it feels like to have an intact memory. 

I happen to be color blind.  I had to be told that this is a green shirt this morning.  So you would think, “Oh, it’s terrible.  He has no experience of the richness of color in the world.”  But I've never seen it, so I don't miss it.  Things seem fine the way  they are.

I now think of Lonni Sue Johnson that way, that she's missing this huge part of her mental life, but she doesn’t know it’s gone and she doesn’t care that it’s gone and she's happy. 

So I had to change the title of the book and I had to change the way I think about my own memory, not that it’s not still important to me. 

The other day I was in the supermarket and this woman in her fifties or so waved hello.  This was somebody I had known when she was a seven-year-old girl and I was maybe ten years old.  We used to play hide-and-seek.  And I could see the young girl in my mind as I was looking at the not-so-young woman smiling at me, and it felt great.  I just love doing that.  But I think I now know that if I couldn’t do that, things would be okay. 

Thank you.