A car accident left 19-year-old Dylan Rizzo in a coma.
This is the story of the long, perilous crawl to recovery.
Dylan Rizzo, April 2015. Photo: Dylan Coulter for New York Magazine
Despite its encircling fortress of bone, the human brain is especially vulnerable to physical insult.
There are approximately 1.7 million traumatic brain injuries in the United States each year, and although most of them are mild or moderate, thousands result in severe brain damage.
Those injuries always happen on the same day: day zero, a day that marks the start of a fateful and often flawed prognostic calendar.
For 19-year-old Dylan Rizzo, day zero was December 28, 2010.
Tall and slender, with dark hair and a sly sense of humor, Dylan possessed bright eyes and a wry arch to his smile, like a younger James Franco. In word and deed, he was a sports nut. He played hockey and high-jumped at his high school in Lynnfield, Massachusetts, just north of Boston, and rooted passionately for the Bruins.
During the normal part of day zero, Dylan and his father, Steve, watched a local hockey tournament, then went to a family dinner at his grandmother’s house.
Around 8:30 p.m., Dylan left in his car, stopping to drop his sister off at home. Before heading to play video games at his friend Ryan’s house, he called his mother to complain. He couldn’t find his Xbox controller.
“You always move my stuff!” he said.
“No, I don’t,” Tracy Rizzo replied firmly. After hanging up, Tracy found the controller in the backseat of her car. “I called Dylan,” she recalled. “He didn’t answer. So I called him again.” Still no answer.
So she texted Ryan: “When Dylan gets there, just tell him I got the controller.”
A few moments later, Ryan called back. He said there had been an accident.
When emergency responders arrived, they found the driver’s-side door of Dylan’s SUV crunched into a telephone pole.
Dylan was slumped in his seat, unconscious. His breathing sounded like the gurgling of a straw in a near-empty cup. Dylan had traveled barely 200 yards before striking the pole, possibly after hitting a patch of black ice. He wasn’t wearing a seat belt.
It took emergency responders eight minutes to pull him out of the car. There was so much blood and lacerated flesh that medics could not insert a breathing tube during the 29-minute ambulance ride into Boston.
Some of the responders doubted Dylan would be alive by the time he reached Massachusetts General Hospital.
At the hospital, Dylan had a CT scan to assess the damage and was then rushed into surgery, where neurosurgeons removed the left side of his skull and part of the right in an effort to stop multiple brain hemorrhages.
By the time he was transferred to the neuro intensive-care unit, he was a swollen-faced sphinx, eyes closed, head wrapped in bandages, pin-cushioned with needles, and on a ventilator. His face had been shattered; his left leg was broken.
And he was in a deep coma.
To gauge Dylan’s chances of regaining consciousness and achieving a meaningful recovery, doctors would rely on standard time lines, and their prognosis would inform treatment options.
At each critical juncture of Dylan’s journey — the first three days, the first two weeks, the next two months — they would struggle to balance intervention with compassion, while trying to discern the fine and shifting line between hope and hopelessness.
But as neurologists acknowledge, early prognosis is extremely difficult, diagnosis is often flawed, and the time lines that guide recovery predictions are increasingly defied by patients who don’t obey the statistics.
For severe brain injuries, these early decisions are particularly fraught, haunted as they are by the legacies of Karen Ann Quinlan and Terri Schiavo, two young women whose prolonged vegetative [debatable] states became legal and symbolic battles for the right to die rather than be kept alive in a state of unconsciousness by machines.
Complicating this situation is a wave of new neurological research that suggests many seemingly unconscious patients have more consciousness than previously believed and, despite the severity of their injuries, a significant chance of meaningful recovery.
Put simply, neuroscience is changing the meaning of “hopeless.”
68 days before the accident (October 21, 2010): Celebrating his 19th birthday at home. Photo: Courtesy of Steve Rizzo
Dylan came from a small town and a big family. One of the first Fire Department responders was the father of Ryan, the friend with whom he had planned to play video games, so word quickly spread about the accident.
By the time Tracy and Steve reached Mass General that first night, there were nearly two dozen family members already in the waiting room.
To keep everyone informed, the Rizzos issued daily updates on the website CarePages. Their online diary became a kind of parallel chart. “Dylan was recently involved in a car accident,”
the initial entry began. “He is currently stable, but still in critical condition … The next 3 days will be tough, but he is fighting hard to get through this.”
Neuroscientists and philosophers still can’t agree on the essence of consciousness, but in the neuro ICU, it boils down to two necessary conditions: being awake (or aroused) and being aware.
A coma is the loss of both these qualities. One of the revelations of the last decade is that disorders of consciousness are dynamic — patients can travel back from a coma through a series of way stations that are increasingly well marked, though still contested, by doctors and researchers.
“He is having some issues today but the doctors and nurses are taking great care of him.”
On their visits to the ICU, the Rizzos tried to connect with Dylan by playing an iPod filled by his friends with his favorite music.
“We had that music playing right from the very beginning,” said Steve. “His music.”
Some of the nurses thought the last thing Dylan needed was more stimulation, but it probably didn’t matter. In order to hear, the brain needs to be aware.
At the neurological level, a coma is like a deep sleep or anesthesia. The unaroused brain is a dormant circuit awaiting a kick from an internal generator. That generator resides in several “arousal nuclei,” small clusters of cells barely bigger than grains of salt, in the brain stem; these clusters send minimal pulses of activity from the basement of the brain to the lobby and penthouse.
When we’re conscious, the clusters are our neural pacemaker, keeping the lights on when we’re awake and shifting us down to sleep.
That same area of the brain stem also controls other autonomic functions of the body, such as breathing, heartbeat, and temperature regulation.
The gurgling sound Dylan made after the accident, known as “agonal breathing,” suggested that the accident had disrupted the function of his brain stem, which might even prevent him from waking up.
But his doctors wouldn’t know until they could do an MRI, and they couldn’t do that until he became more stable.
“Dylan is finally downstairs getting the MRI.”
On the same day as Dylan’s first brain scan, a neuropsychologist named Joseph Giacino walked into his room in the ICU and administered a bedside test known as the Coma Recovery Scale.
Giacino pried Dylan’s eyes open to see if there was any sign of visual tracking. There wasn’t. Dylan ended up scoring one out of 23.
Giacino is not a medical doctor, but as the director of rehabilitation neuropsychology at Spaulding Rehabilitation Hospital and an authority on disorders of consciousness, he had been called in to consult on Dylan’s case. (In 1991, Giacino and colleagues devised the Coma Recovery Scale.)
Lean and impeccably dressed, with a close-cropped beard, Giacino is among a growing number of experts warning of what he calls a “rush to judgment” in predicting an outcome for brain-trauma patients.
In a recent study of Canadian trauma centers, for example, researchers reported that one-third of the patients who came into the ER with severe traumatic brain injuries died.
Half died in the first 72 hours after injury. Nearly two-thirds of those early deaths had life support withdrawn, suggesting that many of these cases were deemed hopeless in the first couple of days.
According to Giacino, it can take much, much longer for a patient’s chances for recovery to become clear.
Some recent medical literature suggests that if a patient displays any form of conscious awareness within 60 days, regardless of the severity of the initial injury, his or her chances are considerably better.
As a realist, Giacino knows that hardly anyone — families, doctors, or insurers — can wait that long. “They’ve got to make decisions, you know, significant decisions, without letting another ten weeks go by,” he said.
As one of Dylan’s doctors put it:
“This idea that certain patients may not be given the chance to get better, that’s heartbreaking to think of that potential outcome. But it’s also heartbreaking to think of somebody ending up in a vegetative state who never would have wanted to be in that state. Either way, there can be unacceptable outcomes.”
In an effort to improve prognosis, researchers have been experimenting with new MRI techniques that reveal damage to the white matter — the microscopic neuronal wires that connect
distant parts of the brain. Brian Edlow, a neurologist at Mass General and a member of Dylan’s treatment team, applied some of these new techniques in his MRI.
When doctors pored over the images afterward, they were shocked by the amount of damage. “The MRI findings that we observed on day eight were devastating,” recalled Edlow, “and were far beyond what one would expect just from the trauma.”
Most sobering was the carnage done to the white matter. In a car accident, the impact sends the brain banging and twisting inside the skull.
“It’s really those acceleration-deceleration forces that are most harmful to the brain,” Edlow said, “because they shear or literally tear the axons, which are the wires that send signals from one part of the brain to the other.”
Dylan’s MRI showed evidence of these frayed wires everywhere.
In his case notes, Giacino wrote that “the probability of recovery of functional, vocational, and social independence is low.”
He thought the best-case scenario was that Dylan would be severely disabled, but even that outcome would defy the odds. His team agreed it was a “highly unfavorable prognosis.”
That view would inform what one of Dylan’s doctors, Ron Hirschberg, recalled as “some very frank conversations with the family.”
31 days after the accident (January 28, 2011): Incisions show where parts of his skull were removed during surgery. Photo: Courtesy of Steve Rizzo
“We are waiting for our meeting with a team of doctors who will give us more information about Dylan’s injuries and rehab. We are so nervous and anxious about this meeting but know we need to hear it.”
Dylan’s family sat with his doctors in a small hospital conference room. “They showed us his scans — not that we knew what we were looking at,” said Tracy, who asked her sister to sit in and take notes.
“They said, ‘See this area, this area, this grayish-whitish area? It shouldn’t be that color.’ ”
Steve added, “They kept saying — it was like 90 percent of what we were looking at — ‘This will never recover, this will never recover.’ ”
When the doctors asked if Dylan could accept a life of limited function and severe disability, the Rizzos heard an invitation to consider discontinuing aggressive care.
“They told us they didn’t think he would ever be able to live at home, that he would probably be institutionalized, and have moments of clarity where he would recognize us,” Tracy recalled as tears welled up in her eyes. “But they didn’t think he would even have that.”
These are impossible conversations, and doctors who treat severe traumatic brain injuries plan them carefully before walking into the room — how to navigate between realistic hope and frank assessment.
They lay out possible scenarios and try to ascertain from the family what degree of disability would be acceptable to the patient.
But 19-year-olds don’t make living wills, and about the only factor in Dylan’s favor was his youth.
“They walked out of the room,” Steve said, “and we all looked at each other and said, ‘What just happened?’ ” Dylan’s father jumped up, ran out into the hallway, and buttonholed one of the doctors.
“Lookit,” he said, “we don’t need time to think. You need to do whatever you can do … What would you do if it were your kid?”
Rizzo got no disagreement from the doctor, who replied, “We want to do everything.”
After the doctors left, Tracy and her sister sat in the conference room and cried for half an hour. Then Tracy said to the other two, “ ‘When we go out there, we’re not going to tell anybody this.’ And we didn’t.
We came out, and they said, ‘How did the meeting go?’ We said, ‘It was good. And we’re going to do everything we can do for Dylan.’ ”
That night, Tracy posted to their CarePage: “It breaks our heart to tell you the MRI results were not what we hoped for. There is a lot of damage to Dylan’s brain … We have to tell you that he looks really good — you would never know how severe his injuries are.”
The family went on to report plans for his recovery — plastic surgeries to repair his face, new “bone flaps” to replace the missing skull, and eventually rehab. “I wasn’t ready to just give up,” Tracy said later. “And I didn’t want anyone else to, either. So I didn’t give them the opportunity.”
Dylan wore a hair net of electrodes to monitor brain activity. No poke or prod penetrated the neural darkness, but that didn’t prevent “storming.”
Disruption to the brain stem can cause what is known as “paroxysmal sympathetic hyperactivity.”
Brain-injury patients often sweat profusely, spike fevers, and move their limbs spastically.
Another disorder called diabetes insipidus causes extreme thirst and urination.
Dylan had facial twitches and seizures and needed a cooling blanket for his fevers. His parents tried to keep him comfortable, reading him messages from well-wishers and informing him that the Boston Bruins had sent him a signed jersey.
They kept playing music, put hockey games on the TV, and waited. “We knew that he was not likely to stay in a coma much longer,” Giacino said, “because hardly anybody stays in a coma after 14 days. And then the question is: What do we have at that point?”
45 days after the accident (February 11, 2011): Taking steps toward his mom, his first post-accident, with the help of two therapists. Photo: Courtesy of Steve Rizzo
Dylan opened his eyes.
He’d passed from a coma into a vegetative state, a condition of wakeful unconsciousness — eyes wide open but mind still shut down. His brain stem had begun sending those pulses of arousal to the rest of the brain, but he still lacked awareness.
The moment he entered this vegetative state, he also entered a new prognosis timetable, which, unlikely as it seems, is more generous to trauma injuries than to brains damaged during heart attack or stroke.
Lack of oxygen to the brain during a heart attack causes global damage; virtually every brain cell is affected, and in these patients, the vegetative state is considered permanent after three months.
Patients with traumatic injury, on the other hand, are considered permanently vegetative after 12 months.
Once a traumatic brain-injury patient is labeled “vegetative,” all sorts of doors begin to shut — therapy, rehabilitation, insurance reimbursement, the hope held out by family and friends.
For decades, researchers, including Giacino, have found evidence that subtle signs of consciousness are often missed in supposedly vegetative patients.
In 2002, Giacino co-led a task force that proposed a new diagnostic category, the minimally conscious state, which quickly became a contested border region.
“These are individuals who are sort of between conscious and unconscious,” said Giacino. “They clearly show some signs of consciousness, some of the time.”
Many clinicians didn’t know how to identify it and others deemed the distinction of practical insignificance, regarding both vegetative and minimally conscious patients as “hopelessly brain damaged.”
That view is beginning to change, as imaging technology has allowed researchers to detect conscious activity in people who show no outward signs of awareness.
In a famous 2006 study in the journal Science, Adrian Owen, now at the University of Western Ontario, asked a supposedly vegetative patient to imagine playing a tennis game and walking through the rooms of her house while in the imaging machine; the machine picked up brain activity similar to that of healthy people performing the same task.
This and similar experiments have underscored just how blurry the border was between unconsciousness and minimal consciousness and how easy it was to mistake one for the other.
That there are such mistakes is not in dispute.
Minimally conscious patients are mistakenly diagnosed as vegetative in roughly a third of all cases, according to two separate studies.
“Thirty to 40 percent of people who are believed to be unconscious actually retain some conscious awareness,” Giacino said.
No one knows precisely how many people are minimally conscious, because the diagnosis is not officially tracked, but there may be as many as 280,000 minimally conscious patients in the U.S., according to a 2000 study.
(Diagnosis is further complicated by a rare condition called locked-in syndrome, in which a patient is fully conscious but the neural hardware for movement and communication is completely disabled, creating the appearance of unconsciousness.)
Misdiagnosis begets what some ethicists have begun to call “therapeutic nihilism.”
Joseph J. Fins, head of medical ethics at Weill Cornell Medical College and a collaborator with Giacino, argues that many patients with disorders of consciousness have been deprived of adequate care.
In his forthcoming book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness, Fins says the health-care system tends to sequester patients with severe brain injuries from aggressive medical treatment, even as new research suggests that 68 percent of traumatic-brain-injury patients who receive inpatient rehabilitation regain consciousness and that 21 percent of those achieve functional independence.
“I think the key thing is that we don’t erroneously put somebody in the permanent-vegetative camp who shouldn’t be there,” he said.
“Because then they’re labeled for life.”
That label has consequences: Those patients are less likely to receive rehabilitation, less likely to receive drugs that may speed up recovery, more likely to be considered hopeless and warehoused in nursing homes.
When Giacino and colleagues first proposed the minimally conscious state, Fins recalled, critics complained that it would conflate vegetative patients with people who are conscious.
“But it did precisely the opposite,” he said.
“It distinguished them from the vegetative state, and it said these people make a moral claim on us because they are conscious, in some minimal way, but definitely conscious. I think it’s had tremendous instrumental value in identifying people who have a degree of personhood that needs to be valued and embraced and integrated into society.”
“He did open his eyes several times and they stayed open for a good amount of time. Not sure what he can see or understand yet, but we know he feels us, as he had some reactions and responses to our voices and touch.”
One of the great tensions in monitoring a patient’s struggle to regain consciousness is the gap between the expertise of doctors, who observe the patient intermittently, and the observations of the family, who hover by the bedside for hours on end, seeing everything without necessarily knowing how to interpret what they’re seeing.
In Dylan’s case, there was always a Rizzo-family member at his side.
Tracy quit her job at an insurance company to spend nights in Dylan’s room; Steve, a contractor who installs tile and marble, would leave work early.
At one time or another, three grandparents and some 70 family members helped maintain a round-the-clock vigil.
“He was never left alone, ever, for a second,” said Tracy.
At first, there wasn’t much to observe. The family noticed occasional eye movement, but when a doctor or nurse would conduct the Coma Recovery Scale assessment — moving a mirror in front of Dylan to see if his eyes tracked the mirror or rolling a pencil across his nail bed to see if he responded to the pressure — Dylan still remained in a vegetative state.
“He has been sweating a lot over the past few days. It could be caused by medication or his brain.”
Dylan was “storming” again, had been for several days. Tracy and her mother sat at his side, while Tracy wiped the sweat off Dylan’s forehead.
Then, something remarkable happened:
Tracy went to wipe his forehead, and Dylan raised his hand. When he did it a second time, she put the cloth in his hand and said, “Dylan, wipe it yourself.” He began to wipe his mouth and nose.
Tracy and her mother were shocked. “I try not to read into his responses,” she later posted on the family blog. “His body is moving on its own but how could we not think he was really trying to do it.”
The doctors remained cautious. The Coma Recovery Scale was designed to rule out false positives.
254 days after the accident (September 8, 2011): At the Crotched Mountain center in New Hampshire on a therapy bike. Photo: Courtesy of Steve Rizzo
“Today we hit a bizarre milestone. [We] have been at MGH for 30 consecutive days. This now entitles us to a parking pass for only $3 per day. We will consider this a positive thing. Trying to make everything as positive as we can to get through this horrible journey.”
It took a month of up-beat, good-humored missives before the Rizzos finally conceded that Dylan’s situation was “horrible.”
Their son had been treated with sedatives and painkillers; undergone plastic surgery for all the facial fractures; had a shunt inserted to drain off cerebral-spinal fluid; had a feeding tube and a tracheal tube surgically implanted; had a skullcap of Gore-Tex placed over his exposed brain; and battled fevers, seizures, pneumonia, urinary-tract infections, sweats, plunging blood pressure, fluctuating electrolytes, and a racing heart.
During his fifth week in the hospital, Dylan began to show signs to his doctors that he was becoming aware of the outside world. His eyes followed the moving mirror.
When a doctor pinched his fingernails, he tried to push away his hand. Both reactions indicated that he had passed into the minimally conscious state, which instantly increased his chances of meaningful recovery.
As Hirschberg likes to say, only patients in movies leap out of unconsciousness and stay there. Brain-injury patients more typically fluctuate — up and down, in and out, aware and then unaware.
The minimally conscious state can last days, weeks, months, years, the rest of one’s life.
How did Dylan’s brain, or any brain, make the momentous transition from vegetative, unconscious wakefulness to conscious awareness?
The exact process remains mysterious, in part because every traumatic injury inflicts a unique pattern of damage on the cells and circuitry of the brain.
Research by Nicholas Schiff at Weill Cornell suggests that consciousness begins to reemerge when the parts of the brain that receive sensory information reestablish contact with the frontal lobes, which interpret and act on this information.
That latent circuitry still needs to be reactivated and coordinated.
Schiff argues that that part of the healing process is driven by a small region of the thalamus, deep in the brain.
“It’s like a power station that supports organized behavior in the frontal lobes,” he said.
Once Dylan moved out of the ICU and into a regular room, the Rizzos began tuning the TV to programs they knew Dylan would like, usually a Bruins hockey game or a Celtics basketball game.
On an evening in early February, the Bruins were playing Montreal on the hospital-room television when, in the second period, the two goalies got into a fight.
Dylan perked up. “He hasn’t taken his eyes off the TV,” the family reported. “He’s moving his mouth trying to say something.”
Six weeks after the accident, Dylan’s doctors performed a second MRI.
Remarkably, and unexpectedly, the brain scan suggested that some of Dylan’s damaged wiring had begun to mend.
“To our knowledge,” the doctors noted later, “this type of reversal has not been previously described with serial neuroimaging or in a case with such a widespread extent of axonal injury.”
Dylan’s doctors couldn’t say if the repairs reflected the healing of injured cells or the ability of surviving cells to make new connections.
The process, which people refer to as “plasticity,” is much more robust in a young brain than in an old brain, Edlow explained.
One of the revelations of recent research is evidence that severe injury can activate mechanisms of neural development that normally deploy during childhood.
Dylan was still in and out. Sometimes he seemed to pay attention, other times he seemed lost. One Friday in mid-February, the Rizzos brought in his Xbox controller.
When they placed it in his hands, he stared at it for a few minutes. Then he started to push the buttons and move the joystick.
A nurse handed him a Chapstick. He lifted it to his lips.
But the biggest breakthrough from the family’s point of view, the clearest sign that Dylan was regaining consciousness, arose from the spontaneous confluence of medical equipment and juvenile humor.
Dylan had been tugging at the plastic tubing that connected to his trachea. To keep his hands distracted, the family had given him a short length of ribbed plastic tubing to play with.
At one point, Steve reached for the other end of the tube, brought it to his mouth, and began to blow into it.
The noise that came out sounded like a fart. Dylan laughed.
“Steve kept making the sounds,” the family reported, “and Dylan kept laughing.”
To Tracy, this was not only a glimmer of consciousness but of personality: “He’s still in there!”
Later, physical therapists came into the room to get Dylan on his feet and help him to move. Steadied by the therapists, he took a few halting steps toward Steve.
When father and son were face to face, Dylan reached out and the two hugged. “Dylan was stroking Dad’s back, up and down, and then patted him on the shoulder,” the family blogged.
“You could hear a tear drop.”
Emotional responses are another early clue of emerging consciousness, according to Giacino.
He once consulted on a case where the wife of a supposedly vegetative patient claimed that her husband would cry when she read a letter from his sister.
Giacino was skeptical; the man had shown no sign of consciousness. But when the wife read the letter in his presence, the patient began to cry.
To make sure, Giacino pulled a physical-therapy manual off a nightstand and instructed the wife to read a passage. She did, and the patient did not cry.
“Emotional things,” he said, “I take that very seriously when families tell me that.”
The following day, Dylan crashed and stormed so badly that there was talk of moving him back into intensive care.
392 days after the accident (January 24, 2012): Back at home, using his walker with the help of his father, Steve. Photo: Courtesy of Steve Rizzo
Late in February, Steve brought in another familiar toy: a cell phone. Dylan poked at the touchscreen, tried to open apps and check email.
By this point, he recognized people and tried to utter sounds, but nothing was comprehensible; sometimes he would high-five the nurses, other times he gave them the finger. After either gesture, he would always smile.
As an experiment, a family friend visiting dialed the number of the phone Dylan was holding to see what he would do. At first, he just looked at the ringing phone.
The friend redialed the number. This time Dylan picked up the phone and held it to his ear. But he still couldn’t speak.
Unbeknownst to the Rizzos, this was an impromptu variation on the “telephone effect,” which has fascinated neurologists since it was first reported in 1983.
A patient who has shown no ability to communicate is exposed to a ringing telephone, picks it up, and begins to talk. “The idea is that the stimulus is so well ingrained that it doesn’t require any cognitive control,” Giacino said.
It just pops up as an automatic action. Sometimes patients begin speaking for the first time when they pick up the phone, only to lapse back into a non-communicative state.
At the end of February, Dylan Rizzo drew a breath of fresh air. That moment occurred as a medical team transferred him to Spaulding Rehabilitation Hospital, a Harvard-affiliated facility.
He was still considered minimally conscious but had graduated to more complex activity. He could sit up in bed with a little assistance from a therapist; he could nonverbally answer biographical questions with about 75 percent accuracy; he could follow one-step commands about 40 percent of the time.
“He has been slower and lacking energy for the past week. The move was stressful and he is more aware of where he is and that is also stressful.”
After the transfer to Spaulding, Dylan began to stall. He was agitated and restless. He had fierce bouts of “toning” — the muscles in his arms and feet would involuntarily clench until the pain became unbearable, which the family only realized when Dylan’s doctors attached a speaking valve to his trach tube, so he could begin to vocalize. The first thing he did was cry.
“He would cry all night,” Tracy recalled. “He was crying all night for a month. We just couldn’t hear it.”
“There was a lot of mystery as to what was impeding Dylan’s progress,” recalled Hirschberg, who oversaw some of his rehab at Spaulding.
“Was it an infection? Was it pain? Was it purely that his brain was rewiring and just wasn’t ready to come out?”
Tracy put it a different way. “Sometimes he was definitely there,” she said. “Then not.”
At the request of his parents, Dylan was transferred to the pediatric floor. He began to do better. Rehabilitating a minimally conscious brain is a bit like recapitulating childhood.
In daily sessions, Dylan relearned the most basic activities.
How to stand up. How to walk. How to swallow. How to match colors on a board. How to write his name. How to put on a shirt.
How to put on deodorant. How to shift his weight while taking a step. Some days he participated avidly; on others, he had no focus and tended to nap.
His parents would push him in a wheelchair to a nearby park, where they would throw bread to the fish in a pond.
The physical-therapy nurses at Spaulding stood Dylan in front of a mirror and proceeded to write “Dylan loves the Yankees” and “Bruins stink” with a marker on the mirror.
Dylan picked up an eraser and wiped away the insults — “very quick,” his parents reported, “even for Dylan.”
1,460 days after the accident (December 27, 2014): Shopping at a craft-beer specialty store. Photo: Courtesy of Steve Rizzo
By his third MRI, Dylan had entered the post-traumatic confusional state.
He could recognize his dog, Buddy, but he didn’t know the time or year. He could make wheelchair excursions outside, wearing a helmet, but he didn’t know where he was.
He could follow simple commands. He could play multiple-choice games on an iPad but struggled to keep up. The MRI showed that his white matter continued to heal, wiring up his brain, but he remained disoriented.
During this period, his parents screened an endless string of what Steve called “awful” movies they knew Dylan liked: Beerfest. Ace Ventura: Pet Detective. The Hangover. Anchorman.
Dylan always laughed at the right parts, just as he responded to hockey games when goals were scored, though he also often fell asleep in the middle of the movie.
Once, when Dylan appeared to be sleeping, one of his aunts told his mother a dirty joke. Dylan erupted in laughter.
“The morning buzz was all about Dylan leaving Spaulding.”
Nurses, patients, doctors, and other well-wishers gathered at the reception desk for a send-off party. In a family video, Dylan sits in his wheelchair at the center of all the attention, waving and smiling.
The smile has that megawatt quality, but the wave was on a two-second delay, almost slow motion. It’s the first thing Dylan remembers since the day of the accident.
“Coming out of it, it was like I was asleep, and I was just back alive,” he said. “The last day at Spaulding, that’s when I felt alive.”
Right before he left Spaulding, he hit another milestone: He said his first word since the accident.
“Dylan wheeled into the house smiling ear to ear, checking out all the rooms when he said ‘I’m home.’ ”
Dylan spent two months at another rehab center, in New Hampshire, before returning home to Lynnfield in September 2011.
He had begun to walk with a walker and climb a few steps but still struggled with cognitive tasks. Friends and family helped Steve build a wheelchair ramp to the back door of the Rizzo home, and the dining room was converted into a temporary bedroom.
Another brain scan on day 366 confirmed both the extent of Dylan’s recovery and the permanence of other brain injuries. In the area of the left frontal lobe, which bore the brunt of the initial
trauma, some of the brain tissue had atrophied and would never come back.
Still, nine months after his return home, he was able to walk up the steps and reclaim his bedroom. At a fund-raiser that July, he danced.
Dylan went rock climbing, working his way up a climbing wall in Boston.
The Rizzos sent the video to Giacino, who now includes the clip when he gives talks about recovery in patients with grim prognoses.
It is the most vivid embodiment of his argument for patience.
Calling up a slide on his office computer, Giacino showed me the results of long-term follow-up of patients who, like Dylan, had reached the minimally conscious state within 60 days of a traumatic brain injury.
The graphs document the slow but steady reacquisition, over the course of three or four or even five years, of many of the same physical and cognitive abilities that Dylan relearned.
“What this tells us,” Giacino said, “is that the story doesn’t end at 12 months.”
Dylan is among a growing number of patients who defy the prognostic odds.
“It’s not an exceptional case,” Giacino insisted. “We just don’t know how many exceptions to the rule there are. So I don’t believe in the rule anymore.”
In December 2014, Dylan tried the high jump again.
He didn’t clear the bar, but the Rizzos sent the video to Giacino anyway.
His response: “Mind-boggling.”
“Remarkably and unexpectedly, the brain scan suggested that some of Dylan’s wiring had begun to mend.”
Photo: Dylan Coulter for New York Magazine
“It’s impeccable,” Dylan was saying. We were sitting around an island in the sunny kitchen of the Rizzo home in Lynnfield, and he was describing the condition of his bedroom.
His mother was talking about how Dylan had changed since the accident.
“His personality didn’t change at all,” Tracy said. “He’s still the same person. Just neater. He was a slob before the accident.”
He wore a baby-blue sweatshirt, jeans, and running shoes; the most conspicuous reminder of his encounter with the telephone pole was a slight indentation in his left temple and two shiny lanes of hairless skin that run back from the crown of his forehead, where surgeons inserted new bone flaps to replace the parts of his skull lost during the emergency surgeries.
Now 23, he is functionally independent. He volunteers as an assistant track coach at his old high school, occasionally helps his father on construction projects, and hopes to resume his studies at a local community college.
Once a week, he goes out with his old group of high-school friends. At the same time, he continues to need speech and cognitive therapy.
“Dylan still has memory issues, organization issues, and time-management issues,” Tracy said. He recently burned
his hands on a hot pot after putting on oven mitts improperly.
He does not remember a single thing about the six months prior to the accident or the seven months after.
He sometimes “recalls” that period with received memories, like the time a friend visited him at Spaulding and fainted. “It was pale white,” Dylan said, describing the face of his friend as he hit the floor. “Pale white.”
Now he’s not only conscious and functional, but functional in a red-blooded 20-something sort of way. When we went out for lunch, Dylan insisted on ordering a sampler of microbrews (“His neurologist says he can have one or two beers,” Tracy said). He peppered the waitress with questions — equal parts information-seeking and flirtation.
When she came back to check, he kidded her about one of her recommendations. “This one tastes like water,” he teased.
Back at home, I asked to see his room. Dylan effortlessly climbed the stairs, joked about the upkeep of his sister’s room, and led me to a bedroom in the front of the house.
There was a flat-screen TV, a lacrosse stick propped in one corner, and shelves lining two walls, on which dozens of empty microbrew beer bottles sat in neat rows. “There are 147 of them,” Dylan pointed out.
The bed was made, and Steve opened the closet door to reveal a row of T-shirts, each hung and color-sorted. “There was nothing in here before the accident. Everything was on the floor,” he said, then laughed. “Reprogramming the brain works.”
[*This article appears in the June 8, 2015 issue of New York Magazine, Stephen S. Hall, http://nymag.com/scienceofus/2015/06/dylan-rizzo-coma.html ]