“I don’t really know what happened,” Juan Torres, a 21-year-old from the Toronto suburb of Oakville, tells Maclean’s. “But, one day, I just woke up.”
That Torres is speaking at all is astounding. Early one morning in July 2013, Torres, then 19, was discovered by his mother, face-down and unconscious on his bedroom floor, after choking on vomit in the night. He was left profoundly brain-damaged, and his doctors diagnosed him as vegetative: unable to speak, to eat, to deliberately control his movements, to follow basic commands. Vegetative patients retain their reflexes, and might grind their teeth or grimace; their eyes rove about the room but won’t fix on anything. They don’t demonstrate a glimmer of consciousness and can live that way for years, spending their days in hospitals, long-term-care facilities, or at home, unless families decide to end life support. The doctors who treated Torres didn’t think he’d be any different; they expected his status to be permanent, his mother says.
Today—contrary to expectations—Torres is back home with his family. He gets around in a wheelchair; supported by his parents, he can take halting steps forward. In September, he started the general arts and science program at Oakville’s Sheridan College.
If all this wasn’t unexpected enough, there’s something else about Juan Torres that has left neuroscientists stunned. Not only did he recover, but he claims to remember what happened while he was clinically vegetative—and he has memories to prove it. In those hazy months before anyone knew he was aware, Torres says he remembers a doctor telling him to squeeze his hand, even though he couldn’t. He remembers being asked to “follow a tennis ball” with his eyes. Scientists have tested his memories, asking Torres to identify a set of faces and objects he encountered while technically “vegetative.” And he was able to do it. “I felt sad, because I couldn’t communicate with my family,” Torres says. He felt scared and “emasculated” at his inability to respond to the doctor’s cues and commands. For Torres, it was a nightmare. “I felt trapped in my own body,” he says. “I couldn’t talk. I couldn’t react.” It was like being half-asleep and frozen, he says, unable to respond.
“His case is mind-blowing,” says Adrian Owen, a British neuroscientist at Western University who has been investigating one of the most mysterious, least understood phenomena: human consciousness. It’s often said that the brain is the most complex structure in the known universe. Torres’s case shows us how much we’ve yet to understand: the fact that he was creating memories suggests he wasn’t unconscious at all, despite his doctors’ best diagnosis. “It tells us there really was a person there,” Owen says, “and that person was experiencing the world.”
Vegetative patients have not been a high priority for researchers, some of whom doubtless see them as a “lost cause.” It’s hard even to say how many people live this way, or to compare their outcomes. The vegetative state can arise from all sorts of mishaps that lead to brain injury, from a car accident or stroke, to drowning, choking, a sports or military accident. There doesn’t seem to be much consensus on their treatment, either. With a growing focus on end-of-life care as our population ages, some patients have recently come into the spotlight—like Hassan Rasouli, an Iranian-born Toronto man who descended into a vegetative state after acquiring an infection during a brain operation. Doctors argued that Rasouli, kept alive by machines, had no quality of life. They wanted to withdraw life support, but his family adamantly said no. In 2013, the Supreme Court of Canada famously sided with his family, ruling that doctors could not unilaterally withdraw life support.
All neuroscientists, including Owen, agree that many—probably most—of the patients diagnosed as “vegetative” truly are so, with no hope of recovery. Certainly, the vast majority will never recover like Torres: there’s no doubt that this young man is an extraordinary case. “I’ve seen hundreds of patients over almost 20 years and he is completely unique,” Owen says. But the issue is, are we misdiagnosing a subset of patients as “vegetative,” and leaving these people to languish? It’s a chilling suggestion.
Today, Torres is a serious young man who speaks slowly and deliberately, seeming to plot out each word before uttering it—maybe the result of the speech therapy sessions that helped him relearn how to speak. If he could have expressed one thought while in hospital, he says it would be this: “Don’t count me out of the fight just because I’m in bed.”
Back in the summer of 2013, Juan Torres, who emigrated to Canada from Colombia with his family when he was nine years old, was on the brink of adulthood. He was about to enter the University of Toronto’s life sciences program, with the plan of eventually becoming a medical doctor.
On July 19, a Friday, he had worked his shift at the local Sobeys grocery store, then saw friends. That evening, he came home briefly to walk the two dogs, Yogi, a husky, and Cindy, a sheltie. “He loved the dogs and wouldn’t miss walking them, no matter what,” says his mother, Margarita Perez. Later he returned to his friend’s place.
Torres came home around midnight, chatted with his dad and ate some salad—his father didn’t notice anything unusual in his behaviour—before going to bed. Early the next morning, Perez awoke to strange noises coming from his room. At first she thought it was the dogs. She discovered her son lying on the floor in a puddle, in respiratory arrest. How long he’d gone without oxygen is impossible to say. She performed CPR, and her daughter, Laura, called 911. “At the hospital, they said, ‘Hold his hand, because he’s leaving us,’ ” Perez recalls. Her voice falters as she’s overcome by the memory. “They said he was going to die that day.”
The period that followed was devastating, a blur. Both Perez and her husband, Jorge Javier Torres, took several months off work, staying by their son’s hospital bed day and night. Laura, four years younger than her brother, struggled to cope. “It really affected her,” says Perez, a project manager with the Peel regional government. As the shock wore off, Perez and her husband started researching how to help Torres. “You cannot leave a boy that young,” Perez says. “Not alive, not dead; just lying there. Wouldn’t you try anything?”
They discovered hyperbaric oxygen therapy, in which patients breathe pure oxygen inside a pressurized chamber. HBOT, as it’s informally called, is offered at hospitals and clinics across Canada; it’s approved to treat a range of conditions, such as decompression sickness, air or gas embolism, and carbon monoxide poisoning, but not brain injury. “Some studies have shown it can help. Some show no effect,” says Dr. Rita Katznelson, head of the hyperbaric medicine unit at Toronto General Hospital.
Juan Torres’s parents had no idea whether it would benefit him, but they were desperate to try anything. So they signed him out of the hospital in Oakville on a series of day passes—itself a tricky endeavour, given all the equipment supporting him, including a feeding tube, IV and catheter—and took him by special medical transport to regular HBOT sessions at a private clinic in nearby Mississauga, Ont. Because Torres was unconscious, his parents had to enter the pressurized chamber with him, to keep him in position and guard against convulsions. Community fundraising helped cover the cost, which can run up to $200 per session at private clinics.
Hyperbaric oxygen was just part of their regimen. Torres’s parents assembled a collection of items they’d use to stimulate him daily: flashcards with “colours, words, pictures of the dogs, pictures of family members,” Perez says. She’d rub sandpaper and feathers along his toes. She’d bring in coffee beans to waft under his nose. “I remember that,” Torres says, as his mother tells the story, “the smells, like lemon, mint and hot sauce.” (They used Tabasco.) Once in a while, family members were sure they saw him respond. “The doctors would say, ‘Yes, but it’s just a reflex,’ ” Perez recalls. “It was difficult to keep hope, because there were so many days when you don’t see any signs.”
About a month into their new reality, Juan Torres’s parents took him to a little garden outside the hospital to get some fresh air. He was in a portable hospital bed, unable to sit up. “We put him in the nice sun, and started to massage him,” Perez says. “I was talking about how white he was getting.” His fair complexion has always been a running joke with his family members, who call him Snow White. “We are all kind of tan, and he’s the only one with white skin,” Perez says. Torres was “unconscious,” she continues, but he started laughing along at the joke.
They immediately reported this to doctors, who, once again, deemed it a reﬂex. “I couldn’t believe it. We were talking, it wasn’t random,” says Perez. Even so, vegetative patients do show automatic responses that can confuse and alarm loved ones. It’s not unusual for family members to interpret these as signs of consciousness, when it could just be wishful thinking. “I started to wonder if I was seeing something that wasn’t there,” Perez says.
In late August, Laura Gonzalez-Lara, research coordinator with Adrian Owen’s lab at Western, travelled to Oakville to examine Juan Torres. She’d heard about the young man from a hospital worker involved in his treatment. “He came out completely vegetative,” she says. “There were no signs of awareness, beyond some reflexive behaviour. It was actually pretty low,” she adds, “even for our vegetative-state patients.” A month later, he was brought to London, Ont., for further assessment, including with a functional magnetic resonance imaging (fMRI) machine, which measures and maps brain activity. Although the fMRI tests were inconclusive (Torres moved too much in the scanner), “we assessed him [behaviourally] several times that week,” says Damian Cruse, a former research scientist in Owen’s lab who is now a lecturer in psychology at the University of Birmingham. “Every time, he fulfilled the criteria for vegetative state.”
Not long after, on Thanksgiving, Torres’s family brought him home for a day visit, his first since leaving in an ambulance three months before. As his parents carefully wheeled him into the backyard, the family dogs, Yogi and Cindy, came bounding out to greet him. His father, somehow intuiting on behalf of his son, grabbed a dog whistle and stuck it between Torres’s lips. And Torres did what no one had thought possible: He started to blow.
Not long after, the team at Western phoned Perez. “As we were explaining the results,” Gonzalez-Lara says, telling Perez that tests indicated her son was clinically vegetative, “she told us, well, he just started talking.” Soon after Thanksgiving, Torres had begun mouthing words, then whispering. He gradually regained his voice. That November, he was discharged from hospital and sent to a rehabilitation centre.
His memories of these months are more indistinct, and surface in bits and pieces. He recalls a moment early on, it’s hard to say when, where he couldn’t see, but says he could hear words spoken by those around him. “It was like my eyes weren’t connected to my brain,” he says. “There were just voices.” He remembers trying to speak, thinking he was mouthing words, “but it wasn’t registering with people [around me].” He remembers a kind male nurse in London, whom he describes as tall and thin, with a shaved head. “He gave me my first shower since the injury,” Juan says. “I felt clean.” (Until then, he’d just had sponge baths.) He remembers the “relief” of coming home for Thanksgiving, and how happy he was to be with his dogs again.
In May 2014, six months after Torres started speaking, Owen and his team brought him back to the lab. “There was a fair amount of disbelief,” says Cruse. “Everyone agreed it would be a good idea to test his memory, but is he really going to remember the faces of people he met six months ago?”
They showed Torres photos of people he’d met on his initial visit, when he was still clinically vegetative, mixed in with photos of others who looked similar, but whom he’d never encountered. They did the same with objects, including two hand mirrors, one framed in red, the other in white. Torres correctly identified all five faces, and three of the four objects. (Findings will be published in a future scientific paper.) Seeing a photo of Laura Gonzalez-Lara, the research coordinator whom he’d met while vegetative, he said: “That’s Laura.” About another person, he said, “I recognize her nose.” And in still another example, he described the voice of a person he’d met as “deep and monotonous,” a description so bang-on, it made the others laugh.
Recovery among vegetative patients is so rare, Owen hesitates to use the word. “People get the wrong idea,” he says. Some others have recovered, including the first vegetative patient he ever put into a brain scanner, in 1996. Kate Bainbridge, a young British woman, had acquired a viral infection that plunged her into a coma; she eventually emerged in a vegetative state. Owen showed Bainbridge photos of her family while she was in a scanner. Her brain lit up in response, just as it would in healthy subjects. Still, the brain responds automatically to certain stimuli, so this didn’t prove that Bainbridge was conscious—just that “the parts of her brain responsible for recognizing faces were still working,” Owen says now.
Over the course of several months, Bainbridge did regain consciousness. As of late 2013, when she conducted an email interview with Maclean’s, she was physically disabled, living with a full-time caregiver. In stark contrast to Torres, it took her 12 years to regain the ability to speak and, even then, she could “not [speak] well,” as she wrote. Her improvement is atypical of this group. “Until Juan, she was my best example of someone who had recovered,” Owen says. “Even in high-profile cases, the patient is barely able to mutter one or two words, or, occasionally, to move [his or her] hand when asked to do so.”
Much of Owen’s research has focused on single patients: outliers. In 2006, Owen (then at the University of Cambridge) published a study in the journal Science that, for the first time, definitively identified consciousness in a vegetative patient. He had asked the 23-year-old to either imagine playing tennis, or moving around her home, activating two different parts of her brain in the scanner. Just like a group of healthy volunteers, one part of her brain lit up, then the other, on command. “And that, I think, really changed things, because it opened the door to the possibility that there were many more of these people,” Owen says. “You only have to show it’s true in a single patient, to know that it can happen.”
The more patients he scans, the more he discovers about the wide variety who are labelled “vegetative”—and the possibility that some aren’t vegetative at all. Shortly after being recruited to Western in 2010 (Owen holds the Canada Excellence Research Chair in cognitive neuroscience and imaging), he met Scott Routley, who had been in a car accident 12 years before that left him in a vegetative state. In a brain scanner, Routley could answer “yes” and “no” by activating parts of his brain on command. Owen asked whether he was in pain, and Routley answered no, a first for any vegetative patient.
Juan Torres is another first. Whenever Owen discusses his work, he hears the same question. “Someone will put up his hand and say, ‘Do you have a patient who recovered and can tell you [what it was like]?’ ” Owen’s team has determined that one in five patients who appears to be vegetative retains some level of consciousness, which can’t be detected through standard clinical assessments. The number could go up, he argues, as detection methods improve—but even with a growing body of research, it remains controversial to claim consciousness among these patients. Some worry it could give families false hope, or cause feelings of guilt among those who do decide it’s best to end life support.
Many or most vegetative patients indeed have “no potential for recovery,” Owen emphasizes. But, he predicts, as we get better at communicating with non-responsive patients, we may discover others who are living their lives beyond the reaches of doctors and loved ones today.
Juan Torres’s recovery is impossible to explain, although his youth and physical strength must have helped. Medical reports on Torres’ rehabilitation, which Perez provided to Maclean’s, suggest that healthy parts of his brain may have been recruited to work on behalf of areas that were permanently damaged. Owen admits this is possible, but “his recovery was fairly swift for that to have been the case,” he says. “There’s not any clear neuroscientific explanation I can give.”
Torres says he feels pride at his recovery. “I learned a lot, actually,” he says. “I used to get mad. Now I’m more patient.” But a sense of loss hangs over him. A focused and determined young man—his recovery is no less a testament to his own resolve, and his family’s—his frustration can at times be palpable. His life has swerved down a path he never could have predicted. But he’s back in school. He’s playing sports, including wheelchair rugby. (He enjoys “the competition,” he smirks. “The violence.”) Torres spends spare hours making electronic music on a laptop at home. He dreams of becoming a platinum-selling record producer.
Every day, even now, Perez tells her son how grateful she is. The fact that Juan Torres was building memories as he lay in bed, by all accounts unconscious, is still a cause for marvel. “In a way, he was there,” Perez says, “even though he wasn’t. It’s like dying and coming back again.”