The Perpetual Now: A Story of Amnesia, Memory, and Love

by Michael D. Lemonick

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."

Genres: Nonfiction, Science, Psychology, Memoir, Biography, Medical, Medicine

304 pages, Hardcover

First published February 7, 2017

Reviews

[Petra X · Rating 5 out of 5]

I was thinking on the chapter of creation of false memories and it occurred to me that we are being gaslighted, fed fake news, having history rewritten, and now I find our own heads do it to us too. And we don't even suspect it. How come we know so little about our own selves?
__________

Review I was wrong about this book. It was much, much better than I thought it was going to be judged by the first 5 or so chapters. It didn't hang together until the very end, then I could see why the author had gone into such detail about the lives of the subject of the book, Lonnie Sue, her sister and parents. Where she was coming from, what she had lost.

Lonnie Sue had her hippocampi destroyed by encephalitis and had a functioning short term memory of about 60 seconds or less. The brain has lost it's ability to make memories. And how that works and how she comes to terms with it and builds a life - a very strange life composed of art, she had been a very successful graphic artist, and word search puzzles she compiled throughout her waking hours, and organising and re-organising her living space always following a schedule. The schedule detailed everything she needed to do, even eat, and served as her memory. Her personality changed, it seemed to me, to be very child-like but this was not explored.

There was one marvellous scene, beautifully written, where Lonnie Sue is part of her mother's funeral. She extemporises an alphabet song, upbeat and inspirational not Sesame St, and plays music - her taents for art and music had survived the brainstorm intact.

The discussions on memory were the best. Memory is spread throughout the brain according to its aspects, vision, sound, movement, perception of what is going on, etc. Procedural memory where by you learn to do something and it becomes automatic, like riding a bicycle, doesn't seem to be affected in either remembering or learning new skills.

The best chapter, an absolute 10 star for me and which elevated the book to a 5 star was the chapter on how false memories are formed. How to influence people to remember things that definitely never happened, how that could well affect court cases. The examples given were all of researchers, but it is obvious how other people, parents, teachers, policement, therapists etc could do the same unwittingly. Just by suggestions and nudging along the conversation.

One of the examples was to convince subjects that as young children they had shaken the hand of Bugs Bunny at a Disney theme park, and that Bugs had done something 'weird and icky - licking them on the ear for example'. It couldn't have happened, it was impossible. Bugs Bunny is a Warner Bros creation, not Disney. But not only can these false memories be 'recalled' with the right suggestions from a researcher, we do it to ourselves to, and incorporate other people's memories, what we hear, what we've been told, how we imagine it was, and become thoroughly unreliable narrators of our own stories.

I never did believe in past lives (everyone seems to have been Egyptian, there always seem to be memories of being high-born, no one ever seems to remember being a peasant for 40 years and dying of the plague) and every now and again you get accusations of Satanic sex cults where the children all remember terrible usually sexual rituals. These are dangerous falsely implanted memories, not necessarily deliberately, just as much as false testimony that the witness believes to be true, spoken in court many years later, after the crime has been discussed with others and much refined in the witness' head.

The book seemed to be almost as much about Henry Molaison, who was the first person with short-term memory loss to be studied scientifically. Permanent Present Tense: The Unforgettable Life of the Amnesic Patient, H. M.. If you haven't read this book, or any of the many other references or documentaries about H.M. this part would be much more interesting to you than it was to me.

There was one appalling story about H.M. The scientists wanted to examine Henry's brain, so they had a protocol that all who would be involved in preserving it after death could follow, it being so time-sensitive. Within 20 minutes of Henry's death, the process of getting possession of the corpse, cutting the brain out and preserving had started. It was gruesome. There was no mention of any of the scientists even those who had been involved with him for 40 years or more having any feelings at all, it was just get 'that' brain, there was no humanity in it. I wondered if the same would apply when Lonnie Sue passes on?

Right at the end of the book is the most mysterious sentence, Lonnie Sue is reciting words that end with y (she plays word games endlessly), "We never get through the alphabet, because Lonnie Sue notices the grid in front of her and remembers that she's supposed to be showing me how she makes a puzzle." Huh? 'Remembers'? It wasn't specifically written on her schedule so how come she's taking a visual clue and that brings up a memory of what she should be doing when she doesn't have the ability to form new memories?

I don't really know how to rate the book. The chapter on false memories elevated it to a 10 star, but say 3 star for enjoyment but overall 5 star because I learned so much.
__________

Reading Notes Bait and switch. I was looking for a neurological book on people who cannot form memories. I wanted to read of advances in research and perhaps treatment of this devastating condition. This is where short term memory is 60 seconds or less and no new memories can be formed.

So far, the book has been a very detailed biography of Lonnie-Sue Johnson. And her mother. And more of the family. Lonnie Sue was a successful artist and a good musician who liked flying her planes and lived on a farm. I didn't need to go back to her mother's home life and education.Why it was supposed to be interesting I don't know. There is no need for that much background. It feels like I'm not getting what the title promises.

The neurology so far, is mostly about the very well known case H.M. (I read a book about him), who had his hippocampus removed to cure his intractible epilepsy but left him with a present memory of about 60 seconds or less. Several other cases are discussed, so well-known are they that the author even says that they have become staples of neurology (books? teaching? I forget).

Two more chapters (I've just started chapter 9) and if it doesn't give me what the title promises, then it's going to be a dnf.

[Allison · Rating 3 out of 5]

I love books about how the brain functions, and this true story about an amnesiac whose hippocampus was destroyed by a life threatening bout of encephalitis had all the elements of a great read. Unfortunately the writing hovered between textbook and pedestrian with none of the elegance of Oliver Sacks' books about brain function. Lonni Sue sounds like a fascinating person, but the stories soon become as repetitive as her own daily grappling with memories must be. The sections more focused on brain research were also repetitive, not truly academic but not particularly illuminating. Near the end I found one good paragraph that summmed up the author's thesis as well as the many chapters that came before:
"... hippocampus is highly specialized at creating associations among objects, spaces, and experiences. It helps the brain link all of these elements into networks that help us transform the chaotic jumble of sensory impressions that pour into our brains at every minute into a comprehensible whole. Neuroscientists call this linking capability “relational processing,” and while it’s crucial to our having rich memories of the past, it’s also crucial to integrating experience into the present, and for using it to think about the future."
This story would have made a great extended profile in The New Yorker but as a book, it does not get high marks

[Marty · Rating 4 out of 5]

Received this in exchange for review
There were parts I really loved about this book, the scientific discussions on brain and function, memory and how memories are made, how injury or illness can change everything.
The book is primarily about one women who lost her memory due to illness. Also thrown into the mix is a the famous cases from the 1950's, the case of Henry Molaison who had part of his brain removed.
Lots of in depth medical information which I found informative and of interest.
What I did not care about were the endless retelling of stories related to the main subject, Lonni Sue Johnson, and her family history going back to her grandparents. It just seemed like filler
I would have liked to have read more about other case histories, and cases where people did over come amnesia, or who did return to full function with or without regaining lost memories.

[Kisså · Rating 3 out of 5]

Aside from the crippling fear of viral encephalitis that it's given me, this book was very good. It was an easy read, but taught me a lot about how the brain works to create and store our memories, and also how the ability to form and recall different types of memories affects our daily (minute-to-minute, even) lives. Lemonick's writing is concise and informative while also remaining clear and entertaining, which can be tough to achieve in science journalism. Overall a fascinating read. One of those books that I greatly enjoyed and also feel smarter for having read.

[Anderson · Rating 4 out of 5]

This clearly seemed like a shill for the New Yorker. My opinion aside, It [the book] was a fantastic read. You must want to pick it up if you have some neuroscience to do later.

[Olivia · Rating 4 out of 5]

In "The Perpetual Now" Lemonick explores what we know about memory through the case of Lonni Sue, a woman who had viral encephalitis which was cured after severe brain damage, primarily in the temporal lobe (hippocampus). She lives in a "perpetual now" as she cannot retain or make memories. Lemonick discusses what we have learned about memory from her and other famous cases, primarily HM or Henry Molaison. Through these cases he describes that we've learned about "types" of memories and where they are created/how they are stored, etc.

Although I am not a lay person, I think this book is written rather accessibly to the average reader and it accurately sums up what we know from these specific medical cases. The field of memory research is much larger than clinical cases, but these individuals did give many of the clues and information about what we know about how the brain handles memories today. As a psychology and neuroscience major, I have read about these cases throughout my education. I still find more in-depth explorations, such as through this book, fascinating, but I did not learn anything new from this book. For the scholar, this is a summary, but I think this book is targeted for and will be more informational to the lay person (someone with limited knowledge about these clinical cases/memory).

Overall, I think it's an informative exploration of clinical cases that taught us about memory written in an accessible way. Please note that I received an ARC through a goodreads giveaway. All opinions are my own.

[Donna Barney · Rating 5 out of 5]

Lonnie Sue became alive to me as I read this story.

[K.N. Tristan · Rating 3 out of 5]

I was expecting a lot more science. This was almost purely biography.

[Summer · Rating 2 out of 5]

The title of this book caught my eye because I like to read about meditation. This has nothing to do with that.

I saw it was about a woman with amnesia so I thought it might be interesting anyway. I have a terrible "episodic memory" (a term I learned from the book) so I'm often interested in learning more about what makes memory work.

If you want to learn more about how memory exists neurologically, this isn't the book for you. Scientists are just scraping the surface of the that question and this book doesn't attempt to tell you more than you've read in the latest issue of Psychology Today. It's written for the casual reader.

Lonni Sue led a very interesting life before her illness and her case is certainly worth studying. Lemonick is a skilled writer. The book flows well.

I dunno, I guess I was in the mood for a more academic book. It's really a perfectly serviceable book, it just didn't exactly light me on fire.

[Karen Miles · Rating 3 out of 5]

I read this as a book club selection. It was a fascinating premise regarding the illness and recovery of Lonnie Sue Johnson who suffered from encephalitis which resulted in damage to her brain's hippocampus. Lonnie Sue was both a musician and an artist prior to her illness. The studies done on her after her recovery. showed what aspects of her former life were retained after such a devastating and debilitating illness. It was intriguing to learn more about how the brain works and how memories are formed & stored. I was also enthralled to read about other similar cases such as H.M.

Overall, I liked the book and enjoyed reading more about the science of the brain. However, I often times found that the writing was repetitive and long winded. I would have liked there to have been more in depth of Lonnie's life and creativity.

[Ann Woodbury Moore · Rating 4 out of 5]

This is an unusual story, combined with scientific information, about a talented artist, pilot and musician who unexpectedly suffered from encephalitis in her late 50's and ended up an amnesiac, with no short or long-term memory. Lemonick describes Lonni Sue Johnson's life both pre- and post- illness, her treatments, and how she copes. The "love" part of the subtitle is key--Johnson received intense attention, love and care from her mother and sister, which clearly made a huge difference in her recovery. Lemonick alternates his biography of Johnson with chapters detailing the function and study of memory, including several other famous cases. A fascinating look at a crucial part of our bodies and minds that we often take for granted. (And it led to a lengthy discussion with my husband--normally we're poles apart on what we read and listen to!)

[Linda · Rating 5 out of 5]

I went to school with Lonnie Sue and was horrified when I heard of her illness and the fact that visiting her now would mean nothing to her. Lemonick writes of people and places that I know and expounds upon the circumstances of her brain’s inability to form any new memories in words that are easy for a layman to understand. Particularly interesting is the serendipitous way the specialists who study her condition came together - there was the wife of a shopkeeper, a personal trainer, a friend of a friend of a friend type of situations that one doesn’t expect in scientific circles. Altogether a satisfying read.

[Robin · Rating 3 out of 5]

I had expected a better thread of the history of the research of Lonni Sue's condition. What they tried first, what they probed second based on the first. There was too much ancillary information, such as the bios of some of the researchers. It was less a story than I had hoped. I read Left Neglected and Still Alice which were more satisfying and still provided the important scientific information. The authors were able to toggle between the story and science better than this one. It just felt a little too academic for my taste.

[Eric · Rating 4 out of 5]

I would say that the subtitle, "A Story of Amnesia, Memory, and Love," about says it all, although the sister's love for the afflicted is not quite brought out as well as the amnesia and memory parts. Lonnie Su Johnson suffered a brain infection that wiped out what had been a promising career in art, and her love for flying, along with a marriage that lasted ten years. Now, in remarkable fashion she carries on, and her willingness to share her story will likely keep neurologists busy for years to come. Well told even if for one with little science knowledge in this area.

[Trina · Rating 3 out of 5]

While I found this slow going (definitely not a quick read for me), I also found it quite interesting. It left with as many questions as answers, but not in a frustrating way. I think I was most interested because I have a very weak episodic memory (and expect to be labelled as SDAM at some point) and also have aphantasia which adds a whole other layer to the puzzle. I actually hope to get chosen for testing someday so they can compare people like myself who have had the gaps from birth, to those who had injuries or illnesses that caused the issues.

[Kate · Rating 4 out of 5]

I am drawn to books that deal with the mysteries of memory. Maybe because I work with residents with cognitive impairment, or maybe because I grew up watching soap operas where amnesia plots often figured into to everyday life. The Perpetual Now is the story of artist Lonni Sue Johnson, a brilliant woman suddenly struck by illness that destroys her ability to hold on to new memories. Lemonick worked alongside the family to tell her story- part medical, part biography- and it's a compelling one.

[Pam Mooney · Rating 5 out of 5]

I enjoyed this book very much. It is the perfect mix of history, biography and, of course, science. I loved the story behind the science - the persons discussed were remembered and written about with fondness and compassion. I found the research on how the brain/memory works fascinating. While I am educated it is not in this field, yet, as a relative layperson on the subject I found the book to be entertaining, well researched, and educational. A good read.

[Phyllis Cole-Dai · Rating 5 out of 5]

Fascinating. Lemonick brings the reader up-close-and-personal with Lonni Sue Johnson, an artist with profound amnesia, and her family. But he also leads the reader into a compelling history and contemporary status of relevant neuroscience. He thoughtfully probes questions about the mysteries of memory and identity. A book that both moved and taught me. A great resource as I'm researching my latest novel-in-progress.

[Lynn · Rating 4 out of 5]

A terrible, rare disease causes Lonni Sue to lose most of her memory, and prevents her from even imagining a future. And yet she finds ways to engage with life through art and word play, and seems content and even joyful. How much of our brain, neurons, etc. is really who we are? When we lose communication in the brain, do we lose our essence? Studying this remarkable woman has helped shine some light on just what goes on in that head of ours!

[Kim · Rating 4 out of 5]

Having seen the devastating effects of neural damage on close loved ones, I am terrified of one day dealing with similar consequences myself. Not that I'm going to stop wearing my bike helmet, but this book made me realize there could be positives associated with brain injury. And discovering how little is known about the brain's ability to function and heal gave me hope that some day there will be more ways to prevent negative outcomes.

[Dawn · Rating 4 out of 5]

Very well-written story about the case and science behind a recent amnesic. The author is a very good science writer who weaves the story and the science very well. I learned some things about the neuroscience of memory through his descriptions of the studies done with Lonnie Sue and reports of his discussions with neuroscientists as he researched the book.

[Connie · Rating 3 out of 5]

I really liked this book although I got lost and bored a lot. I thought it was really going to focus on one person's journey, but it was way more. I love learning about the brain and how it functions and makes us function, but this was almost too much for casual reading. I'm looking forward to doing my own research on Lonnie Sue, her art, and her life.

[Jeff · Rating 4 out of 5]

The information about how memory works was fascinating, and definitely worth a read. I do think that there was far too much background story on the main person in the book. Most of it was not really relevant and could easily have been condensed. I kept wanting it to get back to the memory studies and when it did, they were incredibly interesting.

[Cindy · Rating 4 out of 5]

While the focus of the book was Lonni Sue Johnson, there was a lot of information about Henry Molaison, as well, which I'd previously been exposed to--and was delighted to find I remembered! This is an interesting book for those wanting to better understand memory and how it works.

[Laura Moon · Rating 4 out of 5]

I thought it was super super interesting! I feel like I should have been a scientist or doctor to understand some of it, but other than that, I loved it. You fall in love with Lonnie Sue at the end of book and it feels like you actually know her!

[Nancy · Rating 3 out of 5]

I won this in a Goodreads giveaway.
Fascinating book. It did have some spots that bogged down but very interesting and tragic.

[Kristina Shiroma · Rating 1 out of 5]

Literally had to fight myself to stay with the last twenty pages. Interesting story, TERRIBLE writing.Thank God that's over.

[Beth Kressel Itkin · Rating 4 out of 5]

Fascinating story and well told though no groundbreaking thesis.

[Sandra · Rating 4 out of 5]

Amazing read with a lot of information about memory and the brain. The subject is very interesting, but the writing is dry and pretty dull.

Thank you Netgalley for this book.

[Bernice Rizor · Rating 3 out of 5]

I really like this story time I feel would not like not lose my memory because you can lose out of everything and miss