I recommend neuroscientist Adrian Owen’s new book, Into the Gray Zone. The “gray zone” refers to patients who undergo such traumatic brain injury that they are diagnosed as vegetative, minimally conscious, comatose, or in other medical states where they aren’t fully present. Owen’s career has been devoted to getting full access to their brains through various forms of brain testing.
The author nimbly combines scientific, philosophical and personal approaches to brain injury. He repeatedly details the scientific means that allowed him to start and extend his career. We learn about his use of PET (positron-emission tomography) and then his move to fMRI (functional magnetic resonance imaging).
Kate was the first patient whose consciousness he recognized through PET scans. Kate—surprisingly—recovered, and later wrote to Owen, asking him to use her case to show others that they too could be discovered despite their illness. Owen “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” (p. 37).
Kate is followed by Debbie, Kevin, Carol, Scott, and Juan. Although some patients may appear completely unconscious, studies show their brains are doing many things that their medical staff hadn’t spotted. Carol’s terrible looks, for example, show the devastating effects of brain trauma, which might horrify new scientists. Nonetheless, Carol was able to demonstrate that she was conscious in Owen’s testing.
Over time, fMRI changed the nature of the testing. Moreover, Owen gradually figured out that his patients needed instructions so he could fully test their intent. He ordered them to think of playing tennis or walking around their house. Once again, surprisingly, many apparently vegetative patients’ brain activity matched that of healthy human beings.
Owen also shrewdly includes philosophical approaches to consciousness throughout the book. It is, after all, what he is searching for. But he acknowledges that who has it, and who doesn’t, remains a perplexing inquiry. A six-month old? A four-year old? A teenager? One of his patients? From age to brain injury, we see the repeated philosophical difficulty of defining the scientists’ goal of finding people whose brains are really working.
Unlike some scientists, Owen also includes a personal approach to the story, including his own life and a caring attitude toward his patients. We learn two moving life events. First, he was very sick as a child and needed extensive help from numerous medical people to get his health back.
Second, we learn of his girlfriend and fiancée, Maureen. They lived together until they had a somewhat unpleasant break-up. Maureen then suffered a serious brain injury, from which she suffered until her death. Over the years he stayed in contact with her brother and studied her scans while her parents oversaw her care. Perhaps another surprise—at the end he feels that he is looking at scans of the woman he loved, not the one he fought and broke up with.
When Maureen was healthy she had urged Owen to acknowledge that medicine was about caring for people, not simply uncovering scientific insights. By the end of the book, she had won him over: “What began as a scientific journey more than twenty years ago, a quest to unlock the mysteries of the human brain, evolved over time into a different kind of journey altogether: a quest to pull people out of the void, to ferry them back from the gray zone, so they can once again take their place among us in the land of the living” (p. 258).
These two experiences are reflected in the caring attitude Owen conveys toward his patients, starting with Kate and continuing throughout the book. There is also the frustration that some subjects do well and others don’t. For that reason, Owen has stopped using the word recovery because “[f]ew of the patients that I have seen return to anything resembling a ‘normal’ life. Indeed, most don’t recover at all” (p. 223).
There is the contrast, for example, of Scott and Juan. Scott told the doctors through their testing that he was present and not in pain. The doctors were surprised, but not his mother, who said, “I knew he wasn’t in pain. If he was, he would have told me!” (p. 161). Scott, however, was not as lucky as Juan, who woke up one morning with a range of brain injuries that left him lying in his own vomit. Yet, seven months later, when Owen’s office called Juan’s family, they learned that he was doing well, and later went back to college and a full life. “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.” (pp. 223-24).
I read this book because I am a bioethics professor and, like Juan, one of the lucky ones. While I was out for a walk in October 2016, a stranger tried to murder me by throwing me on my head and kicking me. I was in the hospital for two months. My attacker was recently sentenced to 6-15 years.
Fewer people know my almost-secret injury—that in 1993, as a pedestrian, I was hit by a car, banged my head against the ground, and had two brain surgeries.
Both times, then and now, the doctors predicted I would either die or live institutionalized with permanent severe brain injury. Instead, after time in the hospital, I worked after 1993 and continue to work now, not needing any care.
To my own experience, I add the people I met who have struggled with one brain injury or another. Many remained in the hospital, still injured, while I left. Other people have—almost—recovered from strokes, and yet still have aphasia or dementia.
Both hospitalized and non-hospitalized brain injury victims continue to suffer from some aspects of their ordeal. Our shared experiences leave me curious why doctors don’t pay more attention to their healthy or almost-healthy patients. The well or almost-well would add to our scientific understanding of the brain. Yet many doctors remain unaware of their patients’ post-injury, out-of-hospital brain conditions.
Similar to the lives of many patients in this book, across the country numerous family members have stepped in to guide their relatives through their differing losses. It was relatives, not doctors, who ultimately helped Maureen, Kate, Debbie, Kevin, Carol, Scott, and Juan live the best lives they could.
Many doctors and scientists need to be more like Adrian Owen. They could learn that medicine and science improve when they reach beyond pure science to include philosophy and personal interest so that patients in the gray zone “can once again take their place among us in the land of the living” (p. 258).