Into the Gray Zone Read online

  More Praise for

  INTO the GRAY ZONE

  “An unforgettable book. Owen weaves together stories of human resilience in the face of extraordinary adversity with an account of his own groundbreaking research, and in so doing takes us on a deeply moving journey to the very frontiers of consciousness. I couldn’t put it down.”

  —Tim Bayne, author of The Unity of Consciousness

  “An amazing book that challenges basic assumptions about what it means to be a person! What’s on display here is a curious branch of brain research that is both fascinating and, frankly, terrifying. . . . It should be required reading for anyone interested in the brain, and especially for all those who care for patients thought to be in a vegetative state.”

  —Katrina Firlik, author of Another Day in the Frontal Lobe: A Brain Surgeon Exposes Life on the Inside

  “Provides fascinating insight into cutting-edge neuroscience and the power of the human psyche. Owen’s impressive scientific credentials and remarkable personal experiences make him the perfect host as we attempt to discover the truth about patients thought to be in a vegetative state. Time and again, we are taken to the edge of our seats, reflecting on what it means to be alive and how hope can triumph in the most tragic of circumstances.”

  —Richard Wiseman, bestselling author of The Luck Factor and 59 Seconds: Think a Little, Change a Lot

  “Truly moving and inspirational . . . an uplifting testament to the power of scientific curiosity and the extraordinary resilience of the human spirit. This book delivers an eloquent message: even in the most desperate circumstances, there can be hope.”

  —Roger Highfield, former editor of New Scientist and coauthor of SuperCooperators and The Arrow of Time

  “Simply unputdownable . . . Taking my evening bath while dipping into the opening pages of Into the Gray Zone, I finished three hours later, with the water cold. What kept me in the bathtub is Owen’s account of communicating with the most impaired neurological patients—those unfortunate individuals whose damaged bodies and brains often put them at a greater distance from us than an astronaut lost in space.”

  —Christof Koch, PhD, president and chief scientific officer, Allen Institute for Brain Science

  “An amazing read! Adrian Owen takes us on a personal and scientific journey, which leads to the discovery of lost minds hidden within the damaged brains of patients in a vegetative state. The book is a real page-turner, both because it unpacks the complexities of modern neuroscience in an accessible way and because it directly confronts profound ethical questions.”

  —Melvyn Goodale, PhD, coauthor of Sight Unseen: An Exploration of Conscious and Unconscious Vision

  “Captivating . . . In this book, which will bring new hope to many, we see Owen explore new realms of consciousness—ones experienced by patients who are devastated by brain injury yet surprisingly endowed with thought, feeling, and memory.”

  —Kevin Nelson, author of The Spiritual Doorway in the Brain: A Neurologist’s Search for the God Experience

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  CONTENTS

  Epigraph

  Prologue

  Chapter One

  The Ghost That Haunts Me

  Chapter Two

  First Contact

  Chapter Three

  The Unit

  Chapter Four

  Half-Life

  Chapter Five

  Scaffolds of Consciousness

  Chapter Six

  Psychobabble

  Chapter Seven

  The World as Will

  Chapter Eight

  Tennis, Anyone?

  Chapter Nine

  Yes and No

  Chapter Ten

  Are You in Pain?

  Chapter Eleven

  Live or Let Die?

  Chapter Twelve

  Alfred Hitchcock Presents

  Chapter Thirteen

  Back from the Dead

  Chapter Fourteen

  Take Me Home

  Chapter Fifteen

  Reading Minds

  Epilogue

  Acknowledgments

  About the Author

  Notes

  Index

  For Jackson

  In case I’m not here to tell you the story myself

  That you may see the meaning of within

  It is being

  It is being

  —John Lennon and Paul McCartney

  PROLOGUE

  I’d been watching Amy for almost an hour when she finally moved. She had been sleeping when I arrived at her bedside in a small Canadian hospital a few miles from Niagara Falls. It seemed unnecessary, even a little rude, to wake her. I knew there was little point in trying to assess vegetative-state patients when they are half-asleep.

  It wasn’t much of a movement. Amy’s eyes flicked open; her head came up off the pillow. She stayed that way, rigid and unblinking, her eyes roving around the ceiling. Her thick dark hair was cropped short, but perfectly styled, as though someone had been working on it only moments earlier. Was this sudden movement simply the result of automatic firing of the neural circuitry in her brain?

  I peered into Amy’s eyes. All I saw was emptiness. That same deep well of emptiness that I had seen countless times before in people who, like Amy, were thought to be “awake but unaware.” Amy gave nothing back. She yawned. A big openmouthed yawn, followed by an almost mournful sigh as her head collapsed back onto the pillow.

  Seven months after her accident, it was hard to imagine the person Amy must once have been—a smart college-varsity basketball player with everything to live for. She’d left a bar late one night with a group of friends. The boyfriend she’d walked out on earlier that evening was waiting. He shoved her and she toppled, slamming her head on a concrete curb. Another person might have walked away with a few stitches or a concussion, but Amy was not so lucky. Her brain hit the inside of her skull. It pulled from its moorings. Axons stretched and blood vessels tore as ripples of shock waves lacerated and bruised critical regions far from the point of impact. Now Amy had a feeding tube surgically inserted into her stomach that supplied her with essential fluids and nutrients. A catheter drained her urine. She had no control over her bowels, and she was in diapers.

  Two male doctors breezed into the room. “What do you think?” said the more senior of the two, looking straight at me.

  “I won’t know unless we do the scans,” I replied.

  “Well, I’m not a betting man, but I’d say she’s in a vegetative state!” He was upbeat, almost jovial.

  I didn’t respond.

  The two doctors turned to Amy’s parents, Bill and Agnes, who’d been patiently sitting while I observed her. A good-looking couple in their late forties, they were clearly exhausted. Agnes gripped Bill’s hand as the doctors explained that Amy didn’t understand speech or have memories, thoughts, or feelings, and that she couldn’t feel pleasure or pain. They gently reminded Bill and Agnes that she would require round-the-clock care for as long as she lived. In the absence of an advanced directive stating otherwise, shouldn’t they consider taking Amy off life support and allowing her to die? After all, isn’t that what she would have wanted?

  Amy’s parents weren’t ready to take that step and signed a consent form to allow me to put
her in an fMRI scanner and search for signs that some part of the Amy they loved was still there. An ambulance shuttled Amy to Western University in London, Ontario, where I run a lab that specializes in the assessment of patients who have sustained acute brain injuries or suffer from the ravages of neurodegenerative diseases such as Alzheimer’s and Parkinson’s. Through incredible new scanning technology, we connect with these brains, visualizing their function and mapping their inner universe. In return, they reveal to us how we think and feel, the scaffolding of our consciousness, and the architecture of our sense of self—they illuminate the essence of what it means to be alive and human.

  Five days later I walked back into Amy’s room, where I found Bill and Agnes by her bedside. They looked up at me expectantly. I paused for a moment, took a deep breath, and then gave them the news that they hadn’t allowed themselves to hope for:

  “The scans have shown us that Amy is not in a vegetative state after all. In fact, she’s aware of everything.”

  After five days of intensive investigation we had found that Amy was more than just alive—she was entirely conscious. She had heard every conversation, recognized every visitor, and listened intently to every decision being made on her behalf. Yet she had been unable to move a muscle to tell the world, “I’m still here. I’m not dead yet!”

  Into the Gray Zone is the story of how we figured out how to make contact with people such as Amy, and the profound effects for science, medicine, philosophy, and law of what has become a new and rapidly evolving field of inquiry. Perhaps most important, we have discovered that 15 to 20 percent of people in the vegetative state who are assumed to have no more awareness than a head of broccoli are fully conscious, although they never respond to any form of external stimulation. They may open their eyes, grunt and groan, occasionally utter isolated words. Like zombies, they appear to live entirely in their own world, devoid of thoughts or feelings. Many really are as oblivious and incapable of thought as their doctors believe. But a sizable number are experiencing something quite different: intact minds adrift deep within damaged bodies and brains.

  The vegetative state is one realm in the shadowlands of the gray zone. Coma is another. Comatose people do not open their eyes and look completely unaware. In the Disney version of Sleeping Beauty (which most parents know all too well), Aurora’s condition resembles coma, akin to a bewitched slumber. In real life, the picture is far less romantic: disfiguring head injuries, contorted limbs, broken bones, and wasting illnesses are the norm.

  Some people in the gray zone can signal that they’re aware. Referred to as minimally conscious, they occasionally respond to requests to move a finger or track an object with their eyes. They seem to fade in and out of awareness, occasionally emerging from some deep pool of oblivion, breaking the surface and signaling their presence before sinking back into the murky depths.

  Locked-in syndrome is not technically a gray-zone state, but it is close enough to give us insight into what life might be like for some of the people we scan. Locked-in people are fully conscious and can typically blink or move their eyes. Jean-Dominique Bauby, French editor of Elle magazine, was a famous example of someone locked in. A massive stroke left him permanently paralyzed except for the ability to blink his left eye. With the help of an assistant and a writing board, he composed The Diving Bell and the Butterfly, a memoir, which took two hundred thousand blinks to complete.

  Bauby vividly recounted his experience: “My mind takes flight like a butterfly. There is so much to do. . . . You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.” Of course, this is Bauby’s “butterfly”: the mind unbound, unconstrained by physicality or responsibility, free to flit here and there. But Bauby was also locked inside the “diving bell,” an iron chamber from which there is no escape and which sinks ever deeper into the abyss.

  Back at Amy’s bedside a few days after her fMRI scans, I again sat watching her closely, desperately wanting to know what she was thinking and feeling. All of those convulsive movements and spasmodic gurgles. Was her experience like Bauby’s? Had she entered Bauby’s imaginative realm of freedom and possibility? Or was her inner world an excruciating prison from which there was no escape?

  Following our scans, Amy’s life changed beyond recognition. Agnes would barely leave her bedside, reading to her more or less constantly. Bill popped in each morning, delivering the daily papers and updating Amy on the latest family gossip. A constant stream of friends and relatives visited. Amy went home on weekends, and parties were held on her birthdays. She was taken to the movies. The care staff always introduced themselves to her, explaining that they were going to wash or change her before approaching her bedside. Every intervention, every drug, every change of routine, was carefully explained. After seven months in the gray zone, Amy became a person again.

  I didn’t delve into this new field of science with anything resembling a clear idea in mind of what I wanted to do. The beginning felt like a fluke, an offhand coincidence. Yet as I look back, it’s clear that what set this story in motion points to the inner fabric that binds all of us together in ways that are monstrously complex and impossible to anticipate. My explorations into the gray zone emerged out of something dark and strange that happened in a leafy, genteel suburb of south London on a warm July day twenty years ago. . . .

  CHAPTER ONE

  THE GHOST THAT HAUNTS ME

  People don’t live or die, people just float

  She went with the man in the long black coat

  —Bob Dylan

  The scientific process works in mysterious ways.

  As a young neuropsychologist at the University of Cambridge, studying the relationship between behavior and the brain, I fell in love with Maureen, a Scottish woman who was also a neuropsychologist. We met in the fall of 1988 in Newcastle upon Tyne, an English city sixty miles from the Scottish border. I had been sent up to Newcastle University to solidify a collaborative relationship between my boss, Trevor Robbins, and Maureen’s boss, the improbably named Patrick Rabbitt, who was doing innovative work on how the brain ages. Maureen and I were thrust together. I was immediately charmed by her dry wit, amazing head of chestnut hair, and lovely eyes that would tightly close whenever she laughed, which she did all the time. I was soon returning to Newcastle upon Tyne for less academic reasons, driving six hours up and back through murderous weekend traffic in my ancient Ford Fiesta, a banged-up piece of junk that I’d picked up for £1,100 from my first paycheck.

  Maureen introduced me to music. Not the bland early-eighties glam rockers in eyeliner, hair spray, and jumpsuits such as Adam and the Ants, Culture Club, and Simple Minds that I’d been infatuated with through my adolescence, but the music that I still carry with me. Passionate music that told stories about land and history mixed with relationships and burning desire. The driving, soulful Celtic-based music of the Waterboys, Christy Moore, and Dick Gaughan. Maureen’s brother Phil, who lived in St. Albans, about forty-five miles from Cambridge, quickly persuaded me that a future without a guitar in hand was no future at all and took me to buy my first axe—a Yamaha that I still own and always will.

  After some months of commuting between Cambridge and Newcastle upon Tyne, I moved sixty miles south to London because that’s where the patients I was studying were being treated. I continued to work as a neuropsychologist, paid by my boss in Cambridge, and signed on for a PhD at the Institute of Psychiatry at the University of London, driving between the two cities several times a week to fulfill the obligations of both posts. It was a grueling schedule, but I loved the work. Maureen gave up her job in Newcastle, took a position in London, and we soon bought our own place—a small third-floor one-bedroom apartment that was a short walk from the Maudsley Hospital and the Institute of Psychiatry in South London, where we both were based.

  As a building, or set of buildings,
the institute is extremely disappointing—a sprawling jumble that lacks a physical presence to match its formidable academic reputation. My office was in a prefabricated building, or portacabin, as we call them in the UK. Freezing in winter, sweltering in summer, it shook each time the main door slammed. We were promised more permanent digs every year: the portacabins would be razed. But I would return decades later and discover, to my surprise and amusement, that there they were, probably still housing aspiring PhDs.

  The initial flush of excitement and romance that Maureen and I felt about moving in together was soon replaced with the more humdrum business of driving to see patients all over southern England, sitting in endless lines of stationary London traffic, searching in vain for vacant parking spots within walking distance of our home, and jump-starting my Fiesta when it decided not to start in the morning—which was all the time.

  Working at the institute and the Maudsley, it was impossible not to be moved by the patients: legions of depressives, schizophrenics, epileptics, and demented souls pacing the drafty corridors. Maureen, an empathic, caring person, was deeply affected by them. She soon decided to train as a psychiatric nurse. Despite the doubtless nobility of this calling, her decision struck me as an abnegation of what could have been a glittering academic career. She began spending long evenings out with her new colleagues while I stayed home, writing and rewriting my first scientific papers, describing the shifts in behavior of patients who had had pieces of their brains removed to alleviate epilepsy or eradicate aggressive tumors.