Because Kate didn’t respond to the sights and sounds around her, or any of the numerous attempts to attract her attention, clinically the conclusion had been that she lacked consciousness. Her sense of self had been obliterated. A bit like an Alzheimer’s patient, late in the course of the disease, who no longer has any sense of who or where she is. But Kate’s predicament seemed even worse. Alzheimer’s patients (at least until the very last stages of the disease, when they might enter a form of vegetative state) still retain a sense of being something, even after the sense of somewhere or someone is long gone. A connection exists with the outside world, although it is woefully weak and distorted. We had assumed Kate’s connections were severed, utterly and entirely. That she had no sense of being anything.

  Now we had new information. Our imperfect little experiment told us something vitally important. When Kate was shown pictures of people she knew, her brain responded just as if she was awake and aware, just as if she was a perfectly healthy person. What were we to make of this brain response? Could we equate it with the experience that she, as a person, might be having at the time? Did Kate experience the memories and emotions that we all typically experience when presented with a photo of someone we know and love? Did she know she was lying in a PET scanner, viewing photos of family and friends? Or was her brain responding automatically, as if on “autopilot” while she lay blissfully in “wakeful unawareness”?

  Many types of stimuli—including faces, speech, and pain—produce automatic brain responses, echoes indicating that the message has been received though not necessarily consciously experienced. At a noisy party, we might be entirely unaware of a conversation going on over our right shoulder until the moment we hear our name. This grabs our attention. That we hear it at all must mean that despite having no conscious knowledge of our doing so, our brain has been monitoring that conversation just in case something important, such as our name, crops up. This doesn’t mean that, because we perceive our names, our brains will remember the conversations in which they occurred. Memory and perception are entirely different. Perceiving a conversation doesn’t mean that you’ll remember it. Why would you? What’s the point? What the brain is doing is scoping around, trolling for relevant information. It’s not trying to remember everything.

  The same thing happens with faces. As we walk through a crowded street, the familiar faces of our friends and acquaintances literally hijack our consciousness from whatever we were thinking about at the time. We notice, or as psychologists say, we divert our attention. That this happens tells us that our brains must be monitoring all the other faces, deciding which are worth attention and which can be happily ignored. But we’re not conscious of doing this. It just happens. Our brain unconsciously sorts through the crowd, only alerting us to those people we might want to know are there—those that we recognize. Even if we try to control this process, we will fail; we cannot decide not to recognize a familiar face, no more than we can decide not to hear our own name at a party.

  This phenomenon depends on where we are and what we’re doing. On a street crowded with strangers, the faces of our friends grab our attention. But at a party full of friends, it’s the stranger—the unfamiliar face—that we notice. This has to do with context and expectation and likely relates to the evolutionary advantage of being able to spot what is important from the barrage of information constantly hitting our retinas. On a crowded street, we don’t expect to see people we know; it’s a violation of expectancy and causes the brain to jump. This is fortunate. Running into friends among strangers is a good thing. It’s adaptive. It might lead to a conversation, a date, a love affair, a partner for life.

  Conversely, at a party full of familiar people, the stranger is the most interesting. We expect to see our friends there; an unfamiliar face violates that expectancy. We know all about our friends. But the stranger in the room? That could lead to something new. Again, it’s adaptive. In every context, it’s important to spot the different and unexpected. Our brains are highly efficient at spotting the odd one out, and most of the time they do this without our even knowing it.

  Many of our brains’ most sophisticated processes are like this. As adults we can’t decide not to understand something that is being said to us. We can’t decide not to learn how to get home from work if we travel that route every day, and we can’t decide not to like a particular piece of music or art. We can decide not to say that we like it or even to declare that we hate it; but that doesn’t change the underlying emotion, which is not our choice to experience.

  In other words, many aspects of how we think and feel occur despite our having absolutely no awareness that these things are happening. By the same token, “normal” neural responses to events in people in the vegetative state do not necessarily mean that these people have any conscious experience associated with those events. This doesn’t mean that they are not conscious either—conscious people also generate those same responses. All it means is that we just don’t know. As revolutionary and exciting as Kate’s response in the PET scanner had been, we just didn’t know about her either.

  None of this stopped us from thinking about it and talking about it. When our paper describing Kate’s extraordinary case came out in the Lancet, one of the world’s oldest (1823) and best-known medical journals, there was a flurry of media attention.

  My colleague David Menon and I appeared on BBC morning television. I sat nervously in the studio, pointing at a life-size plastic model of the human brain and explaining the function of the fusiform gyrus. David added, “Imagine what would happen if an injury to the brain, or a disease that affected the brain, was [such that] not even eye movements were possible. If we didn’t get a response from the patient, we wouldn’t know if they were not responding or were not able to respond. It’s truly a nightmare scenario.”

  Looking back at the grainy footage, I am struck by the strange set of coincidences and luck that had led us to that point. If Maureen hadn’t had her accident, I might not have had any interest in the vegetative state; I might not even have known what it really meant. But wondering what might be going on in the brains of people such as Maureen had sown a seed of interest, and Kate had given me an opportunity to start experimenting. And then, what if Kate’s brain hadn’t responded? What if she had fallen asleep? Our response to this “look and see” experiment might well have been “Oh, well, that’s not worth trying again. Let’s move on and do something else.” By some amazing stroke of luck, she was one of the few who was in there. It was she who gave us the impetus to look for others like her. I couldn’t help but wonder whether Maureen might be in there too.

  Some months later, Kate began to recover and was moved to a specialized rehabilitation facility in one of the villages outside Cambridge. I was kept apprised of her progress. She gradually began to answer questions, read books, and watch television. Her thinking and reasoning skills were within the normal range, although she remained severely physically disabled. Parts of her brain that controlled walking and talking had been damaged.

  Why did Kate recover? The medical thinking at that time was that patients diagnosed as vegetative for months on end never recovered. Did those people who cared for Kate change their behavior and attitudes toward her in light of our scan? Did they pay more attention, invest more time in her rehabilitation, and push her harder? Did this contribute to her recovery? Psychological studies have shown the devastating effects that social isolation can have on the brain. Imagine being ignored and treated like an object for days, weeks, and months on end. Surely that’s the worst kind of social isolation. How could anyone come back from that? What a relief it must been for Kate to be talked to, read to, and included in every conversation. We don’t know what effect that would have on the brain, but there’s little doubt that it would have been empowering.

  Kate’s recollections about her vegetative episode are harrowing. “They said I could not feel pain,” she has written about her ordeal. “They were so wrong.”

  She was terrified when mucus was removed from her lungs. “I can’t tell you how frightening it was, especially suction through the mouth.” A raging thirst often gripped her that she couldn’t signal. Sometimes she’d cry out. The nurses thought it was a reflex. They never explained what they were doing to her.

  Kate tried to take her own life by holding her breath, an all-too-common strategy for conscious people in the gray zone. “I could not stop my nose from breathing. My body did not seem to want to die.”

  Making first contact with Kate and her subsequent recovery generated more questions than it answered. When did she become aware? What parts of the brain are essential in that process? Which are ancillary?

  I felt as though we had ventured into the underworld and convinced someone there to follow us back out. It seemed Kate felt that way too. She wrote to me some years after we’d first scanned her, when she was back living with her parents in Cambridge:

  Dear Adrian,

  Please use my case to show people how important the scans are. I want more people to know about them. I am a big fan of them now. I was unresponsive and looked hopeless, but the scan showed people I was in there.

  It was like magic, it found me.

  Love from Kate

  Over the years, Kate and I stayed in touch, mostly by e-mail. Sometimes she’d write four or five times a week, and then there would be months without contact. I felt an enduring, close connection with Kate, something that had a profound influence on me and my work; she was always Patient #1, always the person I’d refer to when I gave lectures about how this journey began. We had each changed each other’s life.

  As I look back over those e-mails now, it’s clear that despite her miraculous “recovery” Kate’s life was far from easy. “Had a tough year, not nice at all. Had both big toes amputated and a really awful stay in hospital,” she once wrote. It shocked me to read that. Then: “Sorry I was so down in my last e-mail, I had a very bad Christmas time so was feeling low.”

  The e-mails reveal her shifting moods. Yet between bouts of despair a gritty determination emerged. Kate endured despite all she’d been through. “I think my determination was the main thing that helped me. I always have been determined.”

  Then, in June 2016, almost twenty years to the day after her brain injury, I visited Kate in Cambridge. It was raining hard when I got off the train from Heathrow Airport. It always seemed to rain hard in Cambridge. And it was a chilly rain, the plague of British summers, which reminded me of growing up and rainy family holidays spent on the beaches of southern England. My baggage had been delayed in Toronto, and all I had was my old Canon camera and the clothes that I’d flown in, which didn’t include a coat.

  As the taxi wound through the narrow country lanes, I was apprehensive. It had been more than seven years since I’d last seen Kate, a year or so before I left the UK to return to Canada more permanently. She’d been living with her parents, Gill and Bill, and we’d caught up over tea as I asked her questions about her life and she responded, slowly and methodically, by pointing to letters on a board. As remarkable as her recovery had been, her speech was still quite impaired, and I couldn’t make much sense of anything she said. I wasn’t looking forward to going through this process again, communicating letter by letter, sentence by sentence, and I was quite sure that she wasn’t either. But she’d agreed to meet me, and for that I was grateful and willing to do whatever it took to make it easy for her. Trying harder to understand her broken speech would be a good start, I thought.

  My mood lifted as the taxi turned into Kate’s street in a quiet, pleasant neighborhood on the outskirts of Cambridge, and it suddenly stopped raining. The sun burst through the clouds. A good sign? I noticed that Kate’s house, like all the houses around it, was single-story. Wheelchairs and stairs don’t mix. The house was what is called in the UK a council estate. Government-owned housing. Because Kate has no income and is on disability welfare, she doesn’t pay rent and her living expenses are covered.

  I rang the bell, and a cheerful care assistant opened the door, introduced herself as Maria, warmly shook my hand, and ushered me in. The National Health Service covers Kate’s round-the-clock care.

  Maria led me into the comfortable living room. There was Kate, ensconced in her electric wheelchair.

  “Hello again!” I took hold of both her hands. “I bought you flowers!” I gestured toward the bouquet of lilies I had picked up.

  “Thank you very much,” Kate replied without missing a beat. “They’re quite nice.”

  They’re quite nice. I was stunned. Kate had just spoken. No letter board, no broken speech. Kate could speak!

  “Your speech is amazing!” I blurted out.

  “I taught myself to speak again!” She broke into a winning smile that gave away exactly just how pleased she was with herself. “I love to talk.”

  “Do you mind if I record our conversation?”

  She gave me a glum look. “I hate hearing my voice.”

  After some playful back and forth, she capitulated.

  “How did it feel when you first woke up after your period of unconsciousness?” I asked.

  “I thought I was in prison. I had no idea where I was.”

  “What was the last thing you remember?”

  “I was at school, where I worked as a teacher, having lunch. When I woke up, I didn’t feel like I’d been asleep. I was just suddenly there.”

  “I thought you became gradually conscious.”

  “It was like that—just a short time in the beginning with a little bit more every day. Consciousness came back slowly. The very first time I was conscious all day I had an OT [occupational therapist] with me. She was called Jackie. She was the only person in those early days who told me her name and job. Very few people told me their names.”

  “Why do you think that was?”

  “They thought I wasn’t me; they thought I was just a body. It was horrendous. I still had feelings. I was still a person! I was incredibly angry inside. The main thing is I had no idea where I was or why I was there. I thought I’d forgotten how to walk.”

  “No one told you where you were?”

  “I couldn’t hear anyway. I could only hear noise. No words.”

  Kate’s story horrified me. I thought back to the time we’d scanned her, to the time we’d made first contact. With the benefit of hindsight it was now obvious that we’d stumbled upon something incredibly important all those years ago. Part of Kate was still there, and perhaps that’s what was reflected in our early scans. In the weeks and months that followed, she’d been subjected to so many awful experiences, it was hard not to think that we might have done more to prevent that. Should we have tried harder to make sure that everyone treated her as a person? Should we have been more aggressive and issued directives to the staff and carers of all patients like Kate? We didn’t know what we know now, and “sounding the alarm” in this way would have been premature; the result would have unrealistically raised the hopes and expectations of many thousands of families like Kate’s. All we had at the time was the slightest hint that some part of Kate’s brain was still working as it had done before her brain injury. Whether that meant she was aware we did not know, and to assume so would have been both unjustified and unscientific. Nevertheless, twenty years on, the thought that we could have done something more to alleviate Kate’s suffering troubled me greatly.

  Kate talked about the disease that had thrown her into the gray zone. “I’d love to know why I got it. I’m told I’ll never know. Sometimes I think it must be my fault. God was punishing me.”

  “Are you a religious person?”

  “No, but I have faith. I have faith in my head. I don’t go to church. I didn’t go to church before. I have never been religious. But I’ve found that faith has helped me a lot. It’s hard to keep going. I need a reason. My brain won’t give up. I can’t cry. I’ve lost my tears, the ability to cry. It’s horrendous. Really awful. One of the worst things.”

  I asked her what she meant by something she had said to me in one of her first e-mails: that the scan had “found” her.

  “The scan found me inside. I was unconscious. I think I really wanted to sleep because my brain had to work extra hard to see.” I thought, perhaps, Kate was referring to being directed by me to look at the photos in the scanner, and my impulse was to ask her about that, but I didn’t want to interrupt her train of thought. “Even now I find it’s really hard to watch films. I can watch the first hour or half an hour, and then I fall asleep. I can’t wait for the new Bridget Jones film. I love my Kindle. I’ve read loads of books. I don’t read modern books. I read old books. I love Jane Austen. Her heroes are lovely. Modern books remind me of what I’ve lost. My brain keeps going. My recovery is because of my brain. I thought I would just give up, but my brain won’t give up. I fight my brain every day. It won’t do what I want. It won’t do what I ask.”

  “What do you mean by that?”

  “My brain makes my body do things that I don’t want to do. Like when my leg spasms. It doesn’t like me. My brain doesn’t like me. It won’t give up. It got cross with me. Before this I felt like one person, now I feel like two. The old me, before I got ill, was a different person. I feel like I died. And now I’m alive again.”

  Kate spent quite a bit of time talking to me about this strange sense of duality: her feeling that the person she was now was not the person she used to be. In one sense she was quite right: many aspects of her life had changed beyond recognition; but for the most part these were physical changes. I wanted her to tell me that her mind, the part of her that defined who she was, was unchanged. That she had returned from the gray zone bruised, perhaps, but mostly intact. But for Kate, it seemed quite the opposite. Even her own brain, she felt, was working against her. Something about Kate had changed, something about her had been lost in the gray zone.