Patient H69: The Story of My Second Sight

by Vanessa Potter

In 2012, Vanessa Potter, a married advertising film producer with two young children, was stricken by Neuromyelitis Optica Spectrum Disorder (NMOSD), a rare illness that resulted in sudden blindness and paralysis. She was hospitalized for two weeks. Over the next five months at home, she regained mobility but recovering her sight was more problematic. At first what she saw was monochromatic. As color reappeared, she encountered synesthesia (experiencing odd responses to stimuli, such as hearing inanimate objects talk to her). While a multidisciplinary team of neurobiologists, psychologists, immunologists, and developmental biologists treated her, she blogged and kept audio-diaries, using the pen-name Patient H69.

In her own words, Potter reveals the terror and torment of her blindness. Supported by neuroscientists and Britain's National Health Service, Potter became a science sleuth, uncovering some of the innermost functions of the brain and our complex visual system, while learning meditation and self-hypnosis to help herself endure the ordeal and make a miraculous recovery.

Her case offered scientists an important, and previously inaccessible, window into the process of early visual development, as her own optic nerves self-repaired and her brain went into overdrive. Patient H69 is a gripping human story, made all the more real by the unique response of one patient and the science she uncovers.

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

272 pages, Hardcover

Published July 25, 2017

About the author

Curiosity is at the heart of everything I do — curiosity about my brain — the way in which I think — and how different "mind-training" tools might better improve my life.
There's good reason for that curiosity too. In 2012 when I woke up blind and paralysed, it was my own mind that saved me. Who would have guessed that meditating would be my most powerful ally?
Before all of this self-experimenting kicked off I was an award winning telly producer making all of those ads that you turn off. When fate conspired to turn the lights out on me, I decided to use my terrier producer skills to investigate the science of ME. What I found out changed the course of my life.

Finding My Right Mind: One Woman's Experiment to put Meditation to the Test is the latest instalment of my weird and enlightening journey. For three years I have been a "human guinea-pig" wearing an EEG headset daily as I meditated my way through 10 different "mind-training' techniques, from mindfulness to psychedelics. If you want to know what I discovered about myself (and how that relates to you!) and what science discovered about me; check it out.

"In Finding My Right Mind, Vanessa Potter, writes lucidly about the farther reaches of human experience. Her insatiable curiosity and hyper-awareness of the world around her makes for a compelling account. Personally, I found this book funny, comforting, honest, moving, and at times just so damn weird that I had to keep reading. It raises a glass to spiritual adventurers everywhere."
(Dr Roger Bretherton, Clinical Psychologist and Associate Lecturer, School of Psychology, University of Lincoln)

I'd be delighted to speak at your event or school on topics of inspiration, resilience, self-care and meditation. Please get in touch. patienth69 (at) live.com

TEDx Talk "The Art of Your Mind"https://www.youtube.com/watch?v=fSjr9...

Reviews

[Laura Lacey · Rating 5 out of 5]

This is an incredible book - part medical memoir, part scientific investigation. In the first half of the novel Potter describes a deeply personal and traumatic illness, starting with flu like symptoms and leading to near total sight loss. She reflects on what this was like for her and for her young family and friends, using notes she made at the time.
Potter is a highly intelligent woman and so is keen to better understand the science of what happened to her. The second half of the novel presents her discoveries - interviews with all kinds of doctor and her efforts to turn this knowledge into an exhibition to better explain her experience.
I have really fallen in love with these medical memoirs recently. Stories such as hers are as fascinating as they are horrifying. Thank you to Vanessa for sharing her experiences and thank you to Netgalley and the publisher for the ARC.

[Mike Eccles · Rating 3 out of 5]

I was intrigued by the title and the promotion by a national bookstore chain. Previously I had enjoyed and been educated by "My Stroke of Insight" and "When Breath becomes Air", books which seemed to be of a similar genre. I think the genre alignment was correct, but I found this volume to be much more difficult to engage with. I liked the idea of splitting the book into a description of the experience and then an explanation of the potentially-related brain science. Somehow the first section didn't flow despite describing an extraordinary personal experience. The second ended with an apparent transcript of a lengthy conversation which left me rather cold. It was an anti-climax.

[Carissa · Rating 3 out of 5]

She went through a similar trauma I did with suddenly losing her sight along with a lot of neurological function at the same time overnight and doctors not having a clue what was wrong after so much testing. And her drive to keep track of everything in hopes of figuring out what could be wrong is also similar. I think that’s what attracted me to this book. It was interesting...it was interesting to read about her experience and to learn more about the brain/vision connection and how there may not be a problem with the eyes, but instead the brain causing vision loss, or a combo of both as in my case with optic neuropathy. As my eyesight did improve, amazing doctors because it was not expected, hers did too and it was expected. She had that hope and saw it improving over time, while mine would get worse, better, worse...then it was almost normal all of a sudden. It was interesting to read about her experiences. I was fascinated by his she was able to portray her vision loss through various images and technology. I could relate to some extent to the images, including the seeing all black and white. However, in spite of all the good comments, I think I was looking for something different. It was interesting to learn more about the science behind her problems to an extent, and I also think it was important, but I think I wanted to read more about the process of diagnosis, recovery, more personal insight, more impact on family...I think so much of the medical outweighed the impact of her feelings and the impact it had on her life. I understood the medical and I know a lot don’t...but that part fascinated me still, but I think I wanted to feel like I could connect a bit more with her inner feelings...as a person who lived for seeing (me as an artist) and just having it taken away...and she seemed to do pretty well functioning in spite of it. I tried to keep going, but all I could do was listen to audiobooks. I had no way to get around, never got to spend time with friends, I felt stupid in stores because I couldn’t count out money or read the credit card machine, and things like that...how demoralizing it is to be blind and the challenges of trying to explain that you may not look blind, but you are...you just barely have enough vision to see shapes, sometimes color, but how everything blends together and ppl think the craziest things about how you act, don’t understand the great burdens or needs, and more along that side...

[Kelly Swingler · Rating 5 out of 5]

I met Vanessa when she was completing her Executive Coaching qualification and was astounded by her fascination with metaphors and visualisation, little did I know at the time the bravery she was displaying and the courage it took to complete the course.
This book had me in tears. It's a first hand count of Vanessa's challenges, struggles and achievements with something that so many of us take for granted each day.
The book is honest, heartwarming, funny and a must read for everyone.
Being slightly obsessed with Neuroscience myself the 'sciencey' stuff at the end was fascinating - even if you're not into science, you must read this - it's always great to understand how we work in a bit more detail and Vanessa asks the questions of the experts that I'm sure any of us would like to know the answers to.

[Michele Benchouk · Rating 2 out of 5]

I received a free copy of this book from NetGalley in exchange for an honest review. Thank you NetGalley!

This book was an interesting and personal account of a devastating event in which the author becomes blind for an extended but somewhat temporary period of time, as well as losing feeling in her hands and feet. The situation was harrowing, and the author displays incredible courage and strength. The sequence of events was detailed and engaging. The second half of the book, regarding research into NMO, was less interesting to me, and I did skip through some of that last 40%. Overall, this glimpse into a rare condition was thought-provoking. How insensitive some people can be without thinking about it gives me something to try to avoid in my interactions with others. Maybe if I had read it at a different time or situation in my life, I would have given it a higher rating, but it can only say it was ok for now.

[Carla · Rating 2 out of 5]

Rating this book two stars because I probably wouldn't recommend it to someone to read - but that doesn't mean it was terrible. The story of the patient losing her sight was interesting, scary, well-written and kept me reading. I actually wanted to hear more about this, even though it wasn't what initially drew me to the book. I think it is fantastic that she took such a terrible experience and turned it into something so positive (and was able to produce a book out of it).

It was the investigation into the science behind the author's illness that l was first interested in... and it was this that let me down. Stuck together in the back end of the book it quickly becomes dry and hard to follow. It's the kind of thing that needs some pictures or video to help you along and doesn't work as well as text in a novel. I started struggling to want to finish the book, so I admit I read the first half of this and then just skimmed. Sorry.

[Donna Luu · Rating 3 out of 5]

The first part was quite good; I'm glad I read it sequentially to get how lost she felt as her disease was developing. The second part was pretty slow and technical ... I admittedly skipped most of it.

[Dan Read · Rating 5 out of 5]

This is a highly personal account that mixes a personal illness and sight loss experience with the underlying visual science to give us insights into something that many of take for granted, the unconscious act of seeing. A really engaging read.

[Kathleen Gray · Rating 5 out of 5]

An admirable woman and an incredible journey. This is a well written memoir that heads more toward thriller than medical research documentary as Potter tracks and works her own disease. She's one determined woman. This is grueling at the start as she loses her sight and struggles with her disease but there's always hope - largely because Potter uses all her resources to figure out what's going on and how to move forward. You wouldn't think this is beach book but it's a wonderful read for those who have an interested in medicine. Thanks to net galley for the ARC, I'd like to see more from Potter, who has a terrific voice I was glad to hear.

[Heather · Rating 2 out of 5]

Oh my goodness, this book should have been half/third the length - the author just went on and on and on and on and I thought it would never end! My friend is very nearly blind so I thought it would be a great book to read to get some sense of how she copes, but the author was so incredibly self indulgent that she never spent any time talking about the rest of the blind population - her story was the only one that mattered, and I got so fed up that I had to skim the second half. The most powerful memoirs are often the strongest, and it was such a pity that Potter just kept writing and sharing insignificant memories with her readers.

[Shana Yates · Rating 4 out of 5]

3.5 stars. This is a book in two parts. The first part is memoir of a catastrophic medical event. The author, Vanessa Potter, rapidly loses her vision in the matter of 72 hours following what felt like a prolonged cold. Along with her vision, other cognitive function is hampered, including degradation of feeling in her hands and feet. This first part of the book, vividly written and meticulously detailed, is very good indeed. Potter, a producer, immediately endeavored to record her sensations (both via her family taking notes and her own recordings of her thoughts). As a result, there is an immediacy to the sensations and fear, the ignorance and groping for a diagnosis, the halting steps toward recovery.

The second part of the book is an exploration of the science behind what happened to her and how she managed a partial recovery. This part of the book, while solid, is not nearly as engrossing as the first part of the book. This is largely because she has presented much of the explanation in dialog between her and various specialists. This ends up feeling a bit stilted at time and may have been better presented without constant direct quotes (in many ways, it can feel like a transcript, made a bit unbelievable because of the constant affirmation of whoever she is talking to in a given dialog). Despite these shortcomings, it is still very interesting to learn what may have triggered her loss of vision (a condition related to her immune system) and how her brain attempted to regain some of that vision, as helped by not only neuroplasticity, but also a number of daily projects and activities that Potter engaged in that helped rebuild her sight. In the end, there is no fully rosy picture, as her recovered sight is not the same as her original sight -- she perceives muted colors, reds are mostly lost, and she describes her sight as like looking through a dirty window or in washed out sepia tones like an old photograph. But her recovery at all is amazing and her exploration of the brain and how it can heal is uplifting.

[Judy Pope · Rating 5 out of 5]

A totally compelling read. A vivid and very personal story of Vanessa’s sight loss and the strategies she employed to get through those very dark days. The distress and fear are so apparent, yet accompanied perpetually with an undeterred resolve to overcome it and seemingly not to lose her sharp sense of humour! The science is fascinating and will appeal to all. This a great story; a chance to learn, be fascinated, laugh and cry all at once. A bold tale of human resilience and empowering to read.

[Dana · Rating 4 out of 5]

This is a fascinating true story told by Vanessa who suddenly and totally unexpectedly became blind and had numbness in her extremities. At first, her condition was a mystery to the doctors as well and was very frightening to Vanessa and her family. After quite a few tests, the doctors realized that she had Neuromyelitis Optica Spectrum Disorder (NMOSD), a rare illness that can cause sudden blindness and paralysis. Vanessa explains in detail how her sight disappeared and how it gradually reappeared. The first half of the book is her story of her illness and in the second half she explores the medical condition and what exactly happened to her vision and how vision works.

[Dave · Rating 2 out of 5]

This curious comeback had me seeing red. H69 leaves out most of the details surrounding her medical treatments, aside from a laundry list of clever doctor nicknames...sprinklings of meditation, and good old fashion TLC from Mom. Potter certainly had a colorful and pothole ridden road to recovery, and fortunately things worked out. It's a very unique story, one that no one else could cobble together. Insightful, even if clouded by British slang (forced off my roundabout, grain of sand day, pandora's laptop, post traumatic knitting?).

[Julie · Rating 3 out of 5]

In this memoir Vanessa Potter, who has a busy job as an advertising film executive and a wife and mother to two young children, describes her experience of becoming ill with a mystery illness. Over a period of a couple of days she loses her sight as well as becoming numb over her body. Doctors are not sure of the diagnosis and she spends two weeks in hospital having various tests and examinations.

After her sight begins to return, she is allowed to go home, but this becomes a slow process as it doesn't return all at once. She then begins to investigate the scientific part of her illness. I did skim through the second part of the book, it got a bit too much for me.

[Madeleine Black · Rating 5 out of 5]

I found this beautifully written book so moving and a very honest account into the author's journey of losing her sight over 3 days. The first part of the book was the telling of her losing her sight which moved me to to tears and made me question how I would cope/ The second half was more of a scientific exploration of how we see which was fascinating.
The author dug deep inside of herself, guided at many times by her intuition but she never gave up. She saw that she had a choice in how she was going to react to her new circumstances, which we all have too.

[Naseera Beevi · Rating 2 out of 5]

This book is a memoir written by a former television producer turned science communicator Vanessa Potter.

Book is divided into 2 parts:

First part-
Here she narrates the traumatic experiences of a flu and its associated symptoms which then turns into a total sight loss. Memorizes the emotional roller coaster ride she went through.

Second part-
It’s all about scientific investigations, reports, treatments and doctors she met.

For me the book was quite interesting at first. But as the reading progress; at some point i was forced to take a break.

NEITHER BORING NOR FASCINATING !

[Niamh Seren · Rating 5 out of 5]

I have the same disease as Vanessa and I loved reading this. Innthe way she explained her sight, it was the first time I’ve managed to verbalise it because she describes it so well!!! I really love learning about the science of blindness. And the way she continued to do her creative work through the exhibition it sounds so cool I wish I could see that exhibition.

[Alyssa · Rating 3 out of 5]

This book provided great insights to better appreciate the complex processes behind the simple act of seeing. It was difficult to understand what Potter was struggling with in terms of this blind-yet-not-blind experience and the central plate really helped make sense of it all. Her isolation and confusion really came out.

[Martianflash · Rating 4 out of 5]

Beautifully written account of Vanessa's experiences. Especially loved how she dug deep into the field of neuroscience to understand what happened to her and how she found her own coping mechanisms.

[Sandy · Rating 4 out of 5]

I really enjoyed reading this book. Vanessa did an outstanding job of describing her feelings and situation.

[Sophie · Rating 5 out of 5]

One of the most fascinating things about this book is how Vanessa manages to have a sense of curiosity and wonder about her own condition, even when no one knows what's causing it or what is causing her to lose her sight and her sense of touch at such a rapid rate. Her descriptions of her regaining her senses, especially her vision are fascinating and explain so much better than most accounts of blindness we get faced with, that vision is more than seeing or not-seeing and how all the layers of our perception and vision work together to create our own unique way that we 'see' the world.
I finished this book in a few days, unable to put it down. Heartily recommend, 5 stars deserved.

[Aimee Sheldon · Rating 3 out of 5]

I'm unsure as to why but I found the narrative irritating and I didn't like the way she describes certain things.

[Emily · Rating 4 out of 5]

This book has two parts. The first details the author's (aka Patient H69's) loss of sight and feeling due to a rare autoimmune disease. It also details her road to recovery, focusing on how she experienced sight differently than before as it began to return.

The second part goes into her research into what happened in her brain. In this part she relays conversations with scientists regarding various brain functions during illness and recovery. This includes exploring topics such as proprioception, synaesthesia, memory, and unconscious sight. These conversations were in preparation for a science-art exhibit she created. Wrapping up the second part she also explains, as best as she can, how the world currently looks and feels to her.

I usually like my popular science books more about the science, even if it is dumbed down, and less about the author, but if I look at this as mostly memoir (which it is), that complaint goes away. This is a very detailed and honest look at a person's experience of a complicated and distressing medical event. Her coming to terms with that event not only involved her learning to see with her brain's new way of processing sight, but it also involved her taking notes, documenting her progress, talking to scientists, creating an art exhibit, and ultimately writing this book. The value of this book, as of most illness-related memoirs, is in going through that journey with her and learning something new about the ways humans (or at least one particular human) deal with these experiences.

(Thank you Bloomsbury and Goodreads for the advance copy.)

[Louise Donnelly · Rating 3 out of 5]

Amazing, incredible story, would have preferred a neurologist who specializes in sight to explain the science behind it. I found it confusing to read with the dialogue of what people said had happened. Rather than what had happened.... but a great read, and an amazing story!