The Perpetual Now

A Story of Amnesia, Memory, and Love
Unabridged Compact Disc

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In the aftermath of a shattering illness, Lonni Sue Johnson lives in a "perpetual now," where she has almost no memories of the past and a nearly complete inability to form new ones. The Perpetual Now is the moving story of this exceptional woman, and the groundbreaking revelations about memory, learning, and consciousness her unique case has uncovered.

Lonni Sue Johnson was a renowned artist who regularly produced covers for The New Yorker, a gifted musician, a skilled amateur pilot, and a joyful presence to all who knew her. But in late 2007, she contracted encephalitis. The disease burned through her hippocampus like wildfire, leaving her severely amnesic, living in a present that rarely progresses beyond ten to fifteen minutes.
     Remarkably, she still retains much of the intellect and artistic skills from her previous life, but it's not at all clear how closely her consciousness resembles yours or mine. As such, Lonni Sue's story has become part of a much larger scientific narrative—one that is currently challenging traditional wisdom about how human memory and awareness are stored in the brain.
     In this probing, compassionate, and illuminating book, award-winning science journalist Michael D. Lemonick uses the unique drama of Lonni Sue Johnson's day-to-day life to give us a nuanced and intimate understanding of the science that lies at the very heart of human nature.


"A well-researched, engaging and accessible combination of brain science an biography... Lemonick brilliantly employs this lens, placing Lonni Sue’s story in a personal and scientific context that keeps the reader engaged throughout...At once smart and approachable, The Perpetual Now is an inspiring story of human resilience and scientific progress, a reminder that great triumphs are often borne of great tragedies. Expect an education in memory research, but also expect a gorgeous and memorable testament to the fact that we are far more than our memories."
--The Huffington Post

"Through sharing Johnson’s compelling story, Lemonick delivers a fascinating lesson that deepens our appreciation for our own memories."
--Real Simple

"Lemonick does an excellent job of explaining why Lonni Sue's 'enormous storehouse of knowledge' regarding visual art, music and aviation made her an especially rich research subject...[A] very diligent reporter...the story of Lonni Sue, one of the great experiments of nature, is intrinsically fascinating."
--Washington Post

"Watching Lonni Sue and her family reconstruct her life under nearly impossible circumstances is an enthralling story of patience, determination and love, and the bonus is that it's also a window into the emerging science of how the brain makes, stores and recalls memories. You'll never think about your own brain in the same way again."
--Dan Fagin, Pulitzer Prize-winning author of Tom's River

"The Perpetual Now is a fascinating and artful book that takes us deep into the most mysterious labyrinth in nature, the human brain. We meet Lonni Sue Johnson, an artist with profound amnesia, who lost her ability to form or recall memories, and we meet Johnson’s loving family and the scientists who have studied brain for many years, probing the mystery of memory."
 --Richard Preston, New York Times bestselling author of The Hot Zone and The Wild Trees



One day a couple of years ago, a woman about my own age approached me on the street in Princeton, New Jersey, where I live. “I’m Aline Johnson,” she said. “I’m not sure whether you remember me. Have you heard about what happened to my sister?”

No, I hadn’t heard, but I did remember Aline vividly. Even before she spoke, I knew exactly who she was. In her late fifties at the time, Aline had thick, wavy brown hair that fell to her shoulders. An image immediately came into my mind of this same face, the same hair, the same voice, but in my memory she was thirteen years old, dragging a cello case into the music room at the Valley Road middle school in Princeton, where we both played in the orchestra back in the 1960s. I could hear Mrs. Switten, the director, calling out Aline’s name—not just the words, but also the woman’s reedy, northern midwestern–accented voice as she spoke them. When she got really exasperated at one of her students, she’d say, “Jeeminy Christmas!”

That led immediately to another memory: the sinking feeling I would get in the pit of my stomach before every school assembly. Mrs. Switten insisted I play a bugle call on my trumpet as they brought in the American flag. I flubbed it every time. My classmates were unkind about it, every time. Some of them were unkind about my clothes, too, and my haircut, as I recall, which were both very uncool.

Simply seeing Aline Johnson’s face had instantly transported me back to middle school. Her reference to her sister, meanwhile, triggered a different set of memories. I remembered the sister’s name, for one, with no prompting: it was Lonni Sue. I knew that Lonni Sue and I had been in high school together, and that she was several years older. I remembered how peculiar her name had seemed to me, better suited to someone living in the backwoods of Kentucky than to a girl raised in an Ivy League college town. I remembered that Lonni Sue had played an instrument, as well, though I didn’t know which one. I vaguely remembered that she’d gone on to become some sort of artist. I couldn’t picture Lonni Sue’s face, since we’d never interacted. The only visual image that came to my mind was that odd name printed on a high school concert program. In the string section somewhere, I thought.

This rush of memories—visual, auditory, emotional—lasted just a fraction of a second, launched by the sight of a woman I’d encountered no more than once or twice since the Nixon administration. I barely knew her, even in middle school. We’d never had a single conversation, even though we were just one grade apart and had orchestra together several times a week. But somewhere in my brain, these different scraps of information had been sitting, waiting for some event to cause a small group of neurons—that is, brain cells—to fire with a simultaneous burst of electrochemical energy. I experienced that crackling of cellular activity as a series of sights, sounds, and feelings, brought immediately back to my consciousness a half century after these details first took hold.

Memories can be so vivid that the neuroscientific explanation for what they actually are—merely a discharge of energy, the synchronous firing of brain cells in patterns laid down minutes or hours or decades in the past—threatens to trivialize their power as we experience them, to downplay the essential role they play in our lives. Walking into a familiar room, or seeing a familiar face, or hearing a voice we know well triggers a rush of context, reminding us of who we are in relation to this person or place or object. Memories allow us to navigate the world—literally, but also cognitively and emotionally. Without a personal history to call on—without access to the events and people and experiences we’ve had over a lifetime— it’s hard to imagine having any sort of identity.

If we have no memories of the experiences that made us, how can we know who we are?

That’s why I was so appalled when Aline Johnson told me, as we stood on a street corner in Princeton that day, what had happened to her sister. Several years earlier, a virulent brain infection had wiped Lonni Sue’s memory nearly clean. She could no longer remember her past, except in vague generalities. She could no longer form new memories that she’d be able to rely on in the future, except in the most rudimentary way. Try to imagine what that might be like: a friend walks up to you—not a distant acquaintance, like Aline was for me, but someone you’ve shared your life with for many years—and you have no idea who she is. She tells you her name. Doesn’t ring a bell. She reminds you that you saw a movie together just the other day, and describes the actors and the plot. Nothing. She brings up the man who laughed so hard he spilled his popcorn all over your lap. You have no clue. That’s a trivial example, but now imagine that it happens every time you meet this person, and that you don’t forget just the silly stuff. You also forget that this person helped get you through your divorce, and that she stood by you when your father got cancer and died a long, painful death. You don’t even remember that you were divorced, or that you were ever married in the first place. You don’t know that your father died. If someone reminds you, you feel terrible grief, because your memory loss isn’t so complete that you’ve forgotten your immediate family. But you forget again right away, so that if someone reminds you of his death the next day—or even ten minutes later—you grieve again, as though for the first time.

It isn’t just this friend that you can’t recognize or recall. It’s pretty much every friend you ever made, and every memory you ever made with him or with her. You can’t recall your first kiss, or your first love, or your favorite vacation, or the teacher who inspired you, or the one who gave you a hard time in calculus. For most of us, walking down the street where we grew up or stepping into the apartment where we lived during some particularly exhilarating or challenging time in our lives brings back a flood of impressions so powerful it feels as though we’re reliving them. For Lonni Sue, visiting most of those places brought back . . . pretty much nothing at all. It’s like having Alzheimer’s disease, but worse: with Alzheimer’s, aside from the very last stages, you retain memories of the distant past. You remember your childhood, often vividly. Lonni Sue didn’t even have that.

It wasn’t just the past that Lonni Sue had lost, however.


In the typical Hollywood depiction of amnesia, the victim can’t look backward. That was true of Lonni Sue as well. But she also couldn’t look forward. It might not be immediately obvious, but thinking about the future—about what might happen tomorrow or next week or next year, and planning for what you might do, calls on memory. What do I enjoy doing? What things do I need to accomplish? Who haven’t I seen for a while? Without knowing what I’ve done in the past, or who my friends are, or what the options are, there’s no way to imagine the future. Memory is so central to learning, identity, purpose, decision-making, and relating in a meaningful way to others that it’s fundamental to who we are. Lonni Sue had lost an essential part of herself, and her doctors were convinced it would never return. What that actually meant for Lonni Sue as a person, however, wasn’t at all clear to me as Aline and I stood there talking. What could it be like to live without memory? What must it be like to be inside her head, to live your life in a perpetual “now”? If I were in this situation, I thought, I’d probably end up sitting in a dark room, profoundly depressed. How did Lonni Sue handle it?

Aline suggested I find out for myself. A few weeks later, I rang the front doorbell at the house Aline and Lonni Sue had grown up in, in a residential section of Princeton. The door opened directly into the dining room. Sitting at the head of the table, with papers strewn all around her, was a plump, attractive woman in her early sixties, with a round face and chin-length reddish hair, held in place by a headband. She was wearing a white turtleneck and a black fleece vest, and as I stepped through the door, she looked to see who had come in. Her face lit up with an enormous smile, as though she couldn’t imagine a nicer surprise. “Hello!” she said, her voice unexpectedly warm and rich and welcoming. “My name is Lonni Sue,” she said. “What’s yours?” I told her. Then she asked, “Would you like to see my drawings?”

The table was littered with them—sheets of paper decorated with figures of horses, cats, fruits, stars, suns, moons, and letters of the alphabet. She began pointing the images out one by one, then looked up at me. “Have you ever sung the alphabet?” she asked. “It’s really fun!” This woman clearly wasn’t depressed. She seemed childlike in her openness and enthusiasm, but the drawings were exquisitely executed, and the alphabet song she proceeded to demonstrate was something no child could have pulled off. This wasn’t the “A-B-C-D” song we all learned as kids. It was something, Aline later said, that Lonni Sue had come up with herself. She would start with a word beginning with the letter A, and sing her way through the alphabet, one word per letter, all the way to Z. The song was always precisely twenty-six words long. Both the tune and the words were improvised every time, and usually formed a sentence of sorts.

Here is what she sang for me that morning: “Artists beautifully creating delightful exquisite finery giving hospitable inspiration joining keen laughter’s monthly necessities openly preparing quiet refreshment sweetly turning under violet weathervane xylophones yearning zestfully.” It didn’t make a lot of sense, but she performed it without hesitation (although she did stretch out a word once or twice as she reached for the next).

By the time she was done singing the song, she’d forgotten that she wanted me to try it. This was the first obvious indication that something wasn’t quite right. The second indication came a few minutes later, after she’d excused herself to use the bathroom. When she returned to the dining room, Lonni Sue saw me standing there waiting for her. “Hello!” she said, brightly, smiling that same brilliant smile. “My name is Lonni Sue. What’s yours?”