Into the gray zone, p.21
Into the Gray Zone,
p.21
The conversation moved back to Juan’s memories and experiences.
“What do you remember about the first time we scanned you?” I asked him.
“I was afraid.” Again Juan’s words were imbued with feeling. I started to wonder whether Juan had returned from the gray zone in parts, bit by bit. When he’d come to London for his memory test a year earlier, some parts of him were definitely there—his body, his memory, his physical being. But some parts were definitely missing, and only now was it clear what they were. Juan the person had returned; Juan the personality. The essence of Juan was finally back from the gray zone, perhaps not completely, but enough to know that he was going to make it eventually. All of him.
Thousands of people, both patients and healthy volunteers, have been through our scanners. Although occasionally someone gets anxious, it’s rare.
“Why were you afraid?”
“I didn’t know what was going on.”
I had to ask the next question: “Would you say that when we put you into the scanner that first time, we didn’t tell you enough about what was happening?”
He looked directly at me. “Definitely.”
I was horrified. Although we go to great lengths to tell our patients, whether they appear to be vegetative or not, what the scanning session involves, sometimes I guess we’re not thorough enough.
It was worse. Juan continued, “I was so scared that I cried.”
We routinely film our patients’ faces through a tiny camera mounted in the bore of the magnet, and my team monitors patients closely. No notes suggested that Juan had cried during the scan.
“Did you cry tears?”
“I couldn’t produce tears. But I still cried.”
I shall always remember this heartbreaking moment when I prepare a patient—or anyone else—for the scanner. I probed more deeply: “Do you feel that you remember everything from that first visit?”
“Yes, everything.”
I had little doubt that Juan was cognitively back to his former self. His answers were short—mostly single words—but they were efficient and complete. He was giving me just enough information to answer the questions, but never more than I requested. Occasionally, he’d let something slip. Some little nugget of information that would tell me that his worldview—his perspective on life and all that had happened to him—was entirely normal for someone in his position.
Over the next hour or so, Juan told me and showed me many incredible things. He pulled himself up from his wheelchair and shuffled, one step at a time, along the path created by a set of parallel bars that his parents had set up in a room off the kitchen.
I noticed that his left foot wasn’t moving as smoothly as his right. “What does it feel like when you try to move your left foot?”
“Like I’m pulling it through.”
“You mean it doesn’t do what you want it to do?”
“That’s exactly it.”
“What about your right leg?”
“My right leg does what I want.”
Juan painstakingly shuffled from one end of the parallel bars to the other and back again, slowly turned himself around, and dropped down into his wheelchair.
“Fantastic, Juan!” I said, then felt immediately foolish. My superlatives paled beside his achievements.
Prior to his injury, Juan had been a budding DJ. He was back at the mixing deck. He played us some of his tunes, slowly but surely moving the computer mouse to push notes in and out of the mix. His fine motor skills were fully restored, albeit a bit slow.
I asked him if he noticed cognitive deficits.
“Thinking. I’m slower than the other kids. But I get there.”
Cognitive slowing (bradyphrenia) is common after brain injury and also in some neurodegenerative conditions such as Parkinson’s disease, but I had never had a patient with a brain injury tell me about it before.
In Parkinson’s disease, it occurs as part and parcel of the patients’ main symptoms. Parkinson’s patients move slowly, but they also think slowly, even after you’ve taken their slowed movement into account. Back in my PhD days we’d shown that when you give Parkinson’s patients a simple problem-solving task, they take far longer than healthy elderly people to find the solution, although they do get there in the end. No one knows quite why this is—possibly the lack of dopamine in their brains that causes slowed movement also causes slowed thinking. As though every aspect of life is going along a little more slowly than before: there’s still gas in the tank, but the brake is permanently on.
Juan didn’t have Parkinson’s disease, but in some ways his symptoms were similar. Perhaps the damage to his globus pallidus was the reason for the similarity. Juan’s description “My left leg doesn’t do what I want it to do” reminded me of the comments made by some Parkinson’s patients. As though the leg no longer quite belonged to the patient. As though it has a life of its own.
I’d also heard something similar much more recently. Kate, the first brain-injury patient that we’d scanned in 1997, also described a sort of dissociation—or disconnection—between “her” the person and her brain when I saw her again in 2016. “My brain doesn’t like me anymore,” she had said. “It doesn’t do what I want it to do.”
Juan was also experiencing a dissociation, but in his case it was between him (Juan, the person) and part of him (Juan, the body). He didn’t feel in control of his leg anymore. Despite his extraordinary recovery, Juan still felt that some part of him was somewhere else, outside his sphere of control, trapped in the gray zone.
Juan was not the first person to have made a seemingly miraculous recovery, emerging from the gray zone and reentering the world. Jan Grzebski, a sixty-five-year-old Polish railway worker, made headlines when he “woke up” in 2007 after nineteen years in a coma, which he had entered as the result of a brain tumor. His world had changed beyond recognition. He remembered shops during the Communist regime that only had “tea and vinegar . . . meat was rationed and huge petrol queues were everywhere. Now I see people on the streets with cell phones, and there are so many goods in the shops it makes my head spin,” he said on Polish television. He had also gained eleven grandchildren while in the gray zone.
Grzebski’s case was a real-life rendition of Good Bye, Lenin, a German film that was an international hit. His remarkable story was reported around the world. The Fox News headline read, “Living Corpse Wakes.”
Grzebski credited his wife, Gertruda, with his awakening. She would not give up on him, although doctors said he would never recover and gave him only two or three years to live. She moved him every hour for nineteen years to keep him from getting bedsores.
What an extraordinary act of love.
The tumor that had put him into a coma killed him in 2008, only a year after his “awakening.”
In another well-documented case, Terry Wallis, an Arkansas man, suffered an acute brain injury when his truck skidded off a bridge in 1984. He was comatose after the accident and then minimally conscious. The prognosis was grim: doctors said he would never recover. Yet, mysteriously, in 2003 he went through a remarkable three-day period, an arc of “awakening,” in which he gradually emerged from the gray zone. He thought it was still 1984 and that he was twenty! Nineteen years had passed in the blink of an eye. Where had “he” been all this time? What was going on in his brain?
Wallis’s body had aged. The body continues to age in the gray zone, sometimes in an accelerated way from atrophying muscles. Wallis remained physically disabled and his short-term memory was shot, although he clearly recalled his life before the accident. As is the case with Juan, we have no idea what prompted his awakening. Or why he wasn’t able to retain new information or experiences.
Juan has given us an entirely new perspective on the gray zone. His recovery is singular—zero to hero, just like that. It doesn’t get much worse than 3 out of 15 on the Glasgow Coma Scale, yet when I last saw him, he was mixing tunes like a professional DJ.
Margarita emphasized that the family’s proactive, positive attitude had contributed to Juan’s recovery. She had left her job for six months to focus on him and the extra therapies he received. They fund-raised through a website and collected $45,000.
It’s hard to escape the thought that anyone could achieve the same miraculous result with enough willpower, love, and family support, enough money, enough luck perhaps. But I don’t think so. Every brain is different, and every brain injury is different. The gray zone is an unpredictable place, mysterious and complex. We have learned a tremendous amount about it over the past twenty years and about the tenuous, fragile nature of consciousness, yet we still know so little about how and why some people recover and some don’t. And even for those who do, the word recovery does not mean the same thing.
For the lucky few, recovery is like Juan. Back to college, riding the bus, hanging with friends. For others, recovery looks more like Kate, definitely back from the gray zone, reflecting on the hand that she’s been dealt, coming to terms with what she’s lost, little by little, day by day. But for most, the hard truth is that they gain a few extra points on the Coma Recovery Scale, a little bit more responsiveness. They move a few steps up the ladder, out of the abyss.
Several years ago, I stopped using the word recovery when I spoke to journalists. Not because I don’t think anyone ever “recovers,” but because the term is so strongly loaded for those of us who are relatively healthy. The word simply fails to reflect the expectations and achievements of those who are trying to “recover.”
I “recovered” from cancer in 1981. I have a few residual health issues, but I’m essentially healthy and live a normal life. Recovery after serious brain injury is another matter. Few of the patients that I have seen return to anything resembling a “normal” life. Indeed, most don’t recover at all. Juan, the best “recovery” story that I can tell after twenty years in this field, is the rare, rare exception that tells us that there is always some hope, however small. Juan has come almost all the way back from the gray zone, yet his experience there will have undoubtedly endowed him with a perspective and qualities that he didn’t have before. Juan has seen things that most of us will never see in our lifetimes. Nor ever should.
Any sort of brain injury will likely have long-lasting pervasive effects. It’s not the same for any other organ of the body. We can replace kidneys, lungs, hearts, and livers and essentially we are still ourselves—a little wobbly for a while perhaps, but the same person. Many of us return to live full and complete lives. Perhaps the same lives we would have lived had we not fallen ill, notwithstanding the emotional scars we inevitably carry when our lives have been threatened.
But serious brain injury is fundamentally different. It changes us, it alters our ability to move, react, interact, and respond. And recovery is far harder, if it occurs at all. We can’t transplant brains (at least not yet), but even if we could, it wouldn’t help us to recover in the way that transplanting a heart or a kidney helps us to recover. Because after a brain transplant, “we” would not recover; “we” would be someone else. We might look the same, but with someone else’s brain in our heads we would be an entirely different person. Conversely, transplant your brain into another body and you would still be you—not that other person. You’d look different, and it’s tantalizing to think that you might even feel different in ways both subtle and apparent. But you would be essentially the same person living in another body. The same thoughts, the same memories, the same personality. Your sense of being, the cascade of thoughts, feelings, and emotions that comprise our conscious experience of the world, would be largely identical. Like a perfect disguise, the appearance is different, but underneath the person is unchanged.
Kate told me that although her capacities have diminished, she is at her core the same person she was, deserving of the same love, attention, and respect that healthy people expect. Juan too, I’m sure, feels he is the same person, altered perhaps in ways that are beyond the measurable diminishment of physical and cognitive functions that are so hard to define. It amazes me that who we are, our very being, the very stuff that makes me, me and you, you, is phenomenally resistant to alteration, even by catastrophic brain damage.
There’s no escaping it: we are our brains.
CHAPTER FOURTEEN
TAKE ME HOME
I’ve seen the nations rise and fall
I’ve heard their stories, heard them all
But love’s the only engine of survival
—Leonard Cohen
Juan’s return from the gray zone was a sobering reminder that consciousness has always been one step ahead of us. With Alfred Hitchcock, we thought we had it, the perfect measure, an infallible tool for tracking down consciousness in its deepest, darkest elemental lair. But it had escaped us again, slipping right through our fingers. It was there, in Juan’s experience, in its most elaborate of forms, yet we had failed to see it. fMRI is a tremendously powerful tool, and we were constantly refining what we could do with it. Increasing computer power had enabled us to ask questions of patients such as Scott and Jeff, moving us ever closer to the moment that we would be able to engage in a real-time two-way conversation with their inner selves. At the same time, our explorations into the gray zone were helping us to unravel the building blocks of consciousness—how brain processes like memory, attention, and reasoning relate to unitary concepts like “intelligence” and how they emerge from that three-pound lump of gray and white matter inside our heads (to see how we solved some of these questions, please visit www.cambridgebrainsciences.com). All around the world, we and others were using this extraordinary technology to map the architecture of our thoughts and feelings, identifying the crucial links between the way our brains function and how we experience our conscious world, how we develop a sense of identity, and how it is shaped by a lifetime of experience. Our adventures with the Master of Suspense had shown that our consciousness is tightly coupled to the consciousness of others experiencing the exact same event, to what we think others are thinking and feeling, to our theory of mind.
But fMRI was expensive to use, and moving patients to the scanner was difficult, limiting its potential to help people desperate to communicate with those near and dear to them who were marooned in the gray zone. A big part of the future of what we were doing clearly hinged on streamlining this cumbersome and expensive technology, making it portable and user-friendly, taking it out of the hands of scientists such as me and medical professionals and putting it into the hands of those who were so deeply invested in reclaiming the people who had been taken from them. And few people were as deeply invested as Winifred.
One night in May 2010 at around 3:30 a.m., Winifred was suddenly woken by what she thought was her husband, Leonard, snoring in bed beside her. She must have intuitively known something was wrong. “He never woke me with his snoring,” she said. “The joke was that the world could come apart and I would keep sleeping.”
That night the family’s world was, indeed, splintering. Somehow Winifred knew her husband was in trouble. She tried to rouse him, thinking he was having a nightmare. When she couldn’t, she called out to her son and daughter, sleeping in nearby rooms. Her son dialed 911. Winifred and her children were told to move Leonard down from the bed so he was lying flat on the floor. This was no easy feat. Leonard was a large man who had been a sailor in his youth in Bombay and had worked in the shipyards of Dubai.
The ambulance arrived ten to fifteen minutes later by Winifred’s calculation. “I’ve thought about how long it took for the ambulance to come, over and over and over in my head,” she said. Leonard had stopped breathing. The medics quickly determined that he was in the throes of a cardiac arrest, administered CPR, and got his heart beating again, but he was slipping away fast. They rushed him to Brantford General, the local hospital, where he was placed in a medically induced coma to reduce the chances of further damage to his brain. After injury, the metabolism of the brain has often been significantly altered, leaving some areas without an adequate blood supply. By reducing the amount of energy needed by the brain areas at risk, they can be protected during the healing.
Leonard underwent heart surgery to fix one artery that was completely blocked and another that was 80 percent obstructed. The heart surgeon was pleased with the result. “His body is in good shape right now. It’s just a matter of waiting to see how soon he’ll come out of the coma,” he told Winifred.
A day and a half later Leonard emerged from his coma and entered the gray zone. “The news is not good,” said the doctor. “Leonard’s brain is severely damaged. He’s in a vegetative state, and he’s probably not going to make it.”
The events of May 2010 set Leonard and Winifred on a collision course with my team at Western’s Brain and Mind Institute. It was only a matter of time. . . .
It was Damian Cruse, our resident EEG (electroencephalography) genius, who had the brilliant idea of buying a Jeep to go visit patients and, even more brilliantly, dubbed this mobile lab the EEJeep. It was the next step in our quest to plumb the depths of consciousness, and it was exactly what I’d been looking for: a mobile solution that would allow us to reach out to gray-zone patients everywhere and put them back into contact with their families. It was a way to bring humans and machines together, melding the organic with the artificial, bonding synapses with silicon. In a move that felt like a hangover from my whacky days at the Unit in Cambridge, I commissioned Wes Kinghorn, an artistic friend, to design a logo for the hood, the rear hatch, and the two front doors. “Make it look like Jurassic Park, but not so close that we get sued,” I said.
The result was fantastic! The unforgettable T. rex skeleton was replaced with a cartoon brain. The trademark red-on-yellow design was switched to purple and white—Western’s colors. And the jungle profile was cleverly switched to a profile of the university with its two majestic towers. Riding around town that summer, heads turned. “Is that . . . ? What is that?”
