Patient H69: The Story of My Second Sight

by Vanessa Potter

Overview

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.

Product Details

ISBN-13:	9781472936103
Publisher:	Bloomsbury USA
Publication date:	07/25/2017
Pages:	272
Product dimensions:	5.50(w) x 8.60(h) x 1.20(d)

About the Author

Vanessa Potter was an award-winning broadcast producer in the London advertising industry before falling ill with a mysterious neurologic illness. After recovering her sight and mobility, she collaborated with Dr. Tristan Bekinschtein to launch an interactive EEG experience called The Beach that allows people to see and hear their own meditative brainwaves. The project debuted at the Cambridge Science Festival in March 2016. This is her first book and she lives in London, England.

Table of Contents

Foreword 9

Introduction: The Story of Patient H69 13

Part 1 Diary of Events

Chapter 1 MMXII 19

Chapter 2 Snake Bite 45

Chapter 3 The Pillow 61

Chapter 4 D-Day 93

Chapter 5 Home 103

Chapter 6 Mowbray Road 129

Chapter 7 Painting Project 1 147

Part 2 Diary of The Science

Chapter 8 The Science of My Sight 173

Chapter 9 The Art of Seeing 185

Chapter 10 Synaesthesia 203

Chapter 11 Memory 219

Chapter 12 Making No Sense 225

Chapter 13 Cambridge Science Festival 2015 233

Chapter 14 20/200 241

Chapter 15 Time Traveller 251

Appendix I The beach A visualised sanctuary 263

Appendix II Visualisation guide 275

Further Reading 277

Acknowledgements 280

Index 282

Editorial Reviews

04/10/2017
Potter, a former U.K. television producer, recounts her frightening and sudden loss of vision in 2012—and the slow return to sight, albeit altered—after an episode of neuromyelitis optica, or optic neuritis. In meticulous detail, Potter chronicles the journey from a “black hole” to the point a year later when she realized “that life just normal again.” While keeping track of every slow step to regaining sight—and the loss of sensation in her hands and feet—she approached her sight loss like she used to do her television job, “except this time it was to be the biggest production of my life,” a replication of “my journey in a far more immersive and large-scale way.” Potter began writing a blog and created meditation tools that she used based on “the visualized mental sanctuary that I now call the beach.” She also constructed art installations and explored the science of the “blind sight” she experienced when she first began to “feel” colors. Potter’s work records an indomitable spirit that righted a world that had turned upside down. “How an illness changes you is actually your choice,” Potter writes. “The way I see it is that if those choices are not obvious, then you just have to carve them out for yourself.” (July)

Publishers Weekly

"A stunning account." - Kirkus

"Potter’s work records an indomitable spirit that righted a world that had turned upside down." - Publishers Weekly

". . . an enthralling personal chronicle . . . A compelling firsthand medical account—it’s as if an Oliver Sachs patient were to tell her own story—sure to appeal to memoir fans as well as those interested in the science of the brain." - starred review, Library Journal

"Patient H69 is more than a memoir. It is a journey toward understanding the brain told through the harrowing story of an intensely curious woman with the foresight to track her progress, and the compassion to use her experience to help others." - Patricia Smith, Booklist

"There truly is an art in seeing—and Potter’s evocative chronicle of what it’s like to lose, then find, a sense reveals just how complicated sight can be." - Erin Blakemore, The Washington Post

From the Publisher

★ 05/15/2017
Potter thought she was recovering from a simple flulike virus when, over a period of 72 hours, she lost her vision completely as well as her sense of touch (making it difficult to walk). Her world came crashing to a halt; she was no longer the competent television producer she had been the week before. Eventually diagnosed with Neuromyelitis Optica Spectrum Disorder, an autoimmune neurological condition affecting the optic nerve, spinal cord, and brain, Potter had to relearn how to see, feel, and walk. Her intense desire to recover and her insatiable curiosity to understand what was happening to her propelled her to keep meticulous records of her months-long journey to recovery. Drawing on journal entries and audio recordings, Potter divides the book into two parts. The first is an enthralling personal chronicle of her illness, and the second is a more clinical yet immensely readable retelling of her discoveries as she talked with neurologists and psychologists in an attempt to comprehend the science behind her health issues. VERDICT A compelling firsthand medical account—it's as if an Oliver Sachs patient were to tell her own story—sure to appeal to memoir fans as well as those interested in the science of the brain.—Ragan O'Malley, Saint Ann's Sch., Brooklyn

Library Journal

2017-04-30
A stunning account of the onset of a form of neuromyelitis optica spectrum disorder, a rare autoimmune disorder that can cause sudden blindness and paralysis.Broadcast producer Potter developed her illness after a bout of flu that left her feeling strange. The weirdness turned terrifying as her visual world shrank to a brown haze and then total blackness while her extremities developed a spreading numbness and her feet turned ice-cold. In the span of a couple days, she was hospitalized (H69 is the beginning of her insurance ID) and subject to multiple tests, but the doctors could find nothing wrong with her eyes. The problem was damage to the optic nerve and the spinal cord by her immune system. Treatment included injections of steroids and cleansing her blood of the destructive antibodies. Doctors assured her that she would recover, albeit slowly. Here, Potter's personality as a go-getter, a fighter, a creative producer, and a meditator comes into play, as she delivers well-written daily recordings of her fears and frustrations caused by her total dependence on others. As promised, however, there was progress, and that story is fascinating. First, Potter began to see vertical lines and edges but only in black and white and in two dimensions; colors were the last to appear, with, in her case, some odd crossing over with the sense of touch. Though she left the hospital after two weeks, it was another year before she was back to reasonable mobility—and she still suffered from somewhat hazy vision. Potter used this time to ask scientists to explain vision but also to develop an idea for a science fair exhibit in which participants are wired to record their brain waves and have them translated into color patterns and musical sounds. Patient narratives are a growing genre, and not all end happily. Potter's has that positive aspect as well as illustrating one woman's way of coping with a disease that touches on universal fears: blindness and paralysis.

Kirkus Reviews

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