In 2007, viral encephalitis burned through the brain of Lonni Sue Johnson, a musician, amateur pilot, and successful illustrator for The New Yorker. Johnson lost most of her memories as well as the ability to make new ones. Today, she lives in what journalist Michael D. Lemonick calls The Perpetual Now, the title of his book about Johnson and the new discoveries about memory that her tragedy has made possible.
When National Geographic reached Lemonick at his office at Scientific American, in New York City, he explained why memory is so crucial to identity, how Lonni Sue Johnson fascinates neuroscientists, and why, despite her memory loss, she is filled with joy at the beauty of the world.
Introduce us to Lonni Sue Johnson—and tell us how her amnesia manifested itself.
She was a woman who had great success as a commercial artist, for the New Yorker and many other publications. She was also an amateur musician and a private pilot. At Christmas, in 2007, at her farm outside Cooperstown, New York, she got ill with fever and headaches. She became incoherent, and her neighbours rushed her to the hospital, where they found she had viral encephalitis, a very serious brain infection. Many people die from it. If you recover, you’re likely to have neurological impairments afterwards. In many cases, the virus attacks the memory-forming apparatus at the core of the brain, and that’s what happened to Lonni Sue.
After she recovered from the infection, it became clear that she had two manifestations of this problem. First, she had developed amnesia, as we conventionally think about it—an inability to remember the past. It’s not the case that she remembered nothing: She recognised her mother and her sister; she remembered she had been an artist and a pilot. And after 6-8 months she regained her ability to read music and play the viola.
But when it came to memories of major events in her life, like the death of her father 20 years earlier, whom she had been very close to, she was astonished. She asked where her father was and they said, “Well, he died.” “What do you mean he died? Why didn’t I know that? When did this happen?”
She didn’t recognise old friends and couldn’t supply any details about her life. She could say, “Yes, I was an artist.” Who did you work for? Where did you go to school for art? All of these details were gone. When they brought her back to the house in Cooperstown, she didn’t recognise it and had no memory of ever having been there before.
The other half is even more startling for most of us to contemplate. She also became almost entirely incapable of forming new memories. People would come and see her and say, “Don’t you remember me, I’m your next door neighbour?” She wouldn’t remember. When the person came back the next day, she would also not remember this new information.
When she realised that something was wrong, she would say, “What happened to me?” You had an infection. “I did? What kind of infection?” A brain infection. “Really? That sounds terrible!” She would ask these questions over and over again.
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Why is memory so important to identity—and losing it, so destructive?
In every situation I’m in, I am calling on my memory to tell me how to act appropriately, to say, “Who is this person I’m talking to? What is our history together? What sort of history do I have personally?” Not consciously, necessarily, but unconsciously. Everything I am today is based on what happened to me throughout my life. If somebody mentions my parents, I instantly have pictures in my mind of them. Both have died, but I remember their voices and the things they told me, the things I loved about them and the things that drove me crazy. All this context we operate in, all day, every day, is tied up with memory. In a sense, you are your memories.
Memory is directed by a region of the brain called the hippocampus. Today, neuroscientists are making revolutionary discoveries about its function. Give us some highlights.
Even before the modern ago of neuroscience, people wondered what memory is. Some people have good memories, some bad. And the sense that your memory is an essence of who you are has been with us for a long time. Early on, neuroscientists tried to figure out where memory is located in the brain. Some people thought it was in a specific region, so they would do experiments with animals and snip out different regions. But they had a hard time finding a region that was specifically devoted to memory.
Nobody had any idea what function the hippocampus, which is buried deep within the brain, had. The best guess was that it was somehow involved in the sense of smell. Now neuroscientists are beginning to appreciate that the hippocampus is vitally important for our ability to navigate through our mental and physical world, and keep track of all of our experiences and visual inputs. The neurones in the hippocampus seem to have this specialised function of tying together all the sights, sounds, sensations, and information we’ve gathered in coherent patterns, like a central switchboard. It’s what coordinates everything else.
One of the most important historical cases of memory loss was a man named Henry Molaison, or “H.M.” as he was known in the scientific literature. Tell us his story—and what scientists learned from him.
Johnson remembered how to read music and play the viola.
PHOTOGRAPH BY ILONA SZWARC
He grew up with severe epilepsy that got worse and worse as he got into his twenties. No medication would help; he couldn’t hold down a responsible job and had to live with his parents. So, in 1952, a neurosurgeon decided to try an experimental surgery, in which he cut out H.M.’s hippocampus, which seemed to be the focus of the seizures.
When Henry came out of the surgery, it was immediately clear that something very bad had happened. He had the same symptoms as Lonni Sue Johnson has today: no memory of specific incidents and an inability to form new memories. The doctor would come in, introduce himself, and say, “How are you doing?” They would have a conversation, and then the doctor would leave. When he came back five minutes later, Henry would have no idea that he had ever seen this person before.
Suddenly, neuroscientists and neurologists realised, that’s what the hippocampus does! And it immediately became the focus of enormous attention. One of the things they learned was that knowing how to ride a bicycle or do something physical involves a different sort of memory than the memory of explicitly trying to recall something. This established the division of memory that had only been speculated about. And it was clear that the hippocampus was intimately involved in one but not particularly involved in the other.
One of the most remarkable things that happened as Lonni Sue recovered was that her voice changed. Why did this happen?
Many of the people who knew her when she lived in Cooperstown talked about her having a very constricted, almost breathy voice. But that is not how she spoke when she was younger. She spoke much more openly, with a rich voice. And that original mode of speaking came back after she had her brain infection.
Some of the people who knew her in Cooperstown said Lonni Sue had told them privately that she had suffered physical and emotional abuse and had, in fact, been choked by a man she had been in a relationship with prior to coming to Cooperstown. She was terrified he would come back. And they believed her constricted voice was the result of that terrible incident she was trying to forget. Once she lost her memory, she also lost all memory of that having happened to her, and that restriction was lifted from her voice and she began to speak freely again.
Neuroscientists and memory experts have postulated that there could be ways to erase specific memories. Not through brain surgery but through types of therapy that implant false memories in people or alter existing memories. This is not considered ethical at this point, but it’s clearly possible.
One of the most fascinating experiments about memory was conducted on London cabbies. What did the researchers find they had which Uber drivers don’t?
[Laughs] In New York, it’s very easy to get a job driving a taxi. In London, you have to memorise all the streets and pass a vigorous test, known as the Knowledge. Memory researchers realised this was an extraordinary act of memorization and wanted to know whether cabbies had any particular changes in their brains as a result.
We know that the brain can grow new neurones and connections even into adulthood. And what they found when they scanned these cabbies’ brains was that their hippocampi were larger than the hippocampi of normal people. In order to stuff this knowledge into their brains, they had to grow new connections and new cells in the hippocampus.
To make sure, they also looked at London bus drivers and found that their hippocampi had not grown. The speculation is that they don’t need to know every street in London, just their own route, so there is not a lot of memorization involved.
Lonni Sue is also the subject of intense scrutiny. Why is her case so important to neuroscience?
H.M., whom we talked about earlier, never went to college or had any particular skills or talents when, at the age of 27, he lost his hippocampus. So scientists were only able to test very basic functions of memory. But, unlike any amnesia patient before, Lonni Sue was an artist with an enormous intellectual knowledge. She knew how to play and read music and knew a lot about composers. She was also a pilot, which involves something similar to what London cabbies go through a great deal of memorization of the parts of the aeroplane, checklists, and rules of aviation.
That is one thing that makes her such an extraordinary research subject. She had so many skills, abilities, and talents that neuroscientists can look at and try and answer some of these questions. Where does something like this live in the brain? Where did her creativity come from? Why wasn’t that lost along with her memory? She is a treasure trove of things you can try out and ask new questions about.
Johnson is still able to draw and likes to make puzzles.
PHOTOGRAPH BY ILONA SZWARC
At the end of the book, you write, “Lonni Sue will be mostly unaware of all that she has lost. But most of the time, it doesn’t seem to matter at all.” Doesn’t that contradict what you have spent most of the book saying—that memory loss is devastating?
Yes! It does! [Laughs] Going into the book I didn’t know that much about Lonni Sue, and I assumed that without your memories you'd lost yourself. The working title for the book was “The Woman Who Lost Her Self.” Of course, it has been devastating. She cannot live on her own; she can’t function independently. But after meeting her several times, I got the impression everybody gets, which is that she is gregarious and welcoming and loves to engage. She is charming and jokes all the time. When the neuroscientists come to her house to test her, they spend half the time laughing. So she’s certainly got a personality and, from what others told me, it is very similar to the personality she had before her illness.
She seems genuinely happy most of the time, filled with joy at the beauty of the world and the delight of talking to people. She’s charmed by everything, and she charms everyone. So I had to change the title of the book because I came to understand, after this three-year journey with her, that while she has lost memories of specific things that happened to her, the essence of herself is absolutely unchanged.
This interview was edited for length and clarity.
Header: "Unlike any amnesia patient before, Lonnie Sue Johnson was an artist with an enormous intellectual knowledge," says author Michael Lemonick. She's shown here at her studio in her sister's house in Princeton, New Jersey.
PHOTOGRAPH BY ILONA SZWARC