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The man inside: on the frontier of consciousness
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For three decades, after a devastating car crash, Ian Jordan was unable to move, speak or care for himself, but his family and caregivers say he showed signs that he could still feel and respond. Adriana Barton reports on what medical science knows about the state of 'minimal consciousness'
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By ADRIANA BARTON
  
  

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Saturday, August 18, 2018 – Page A10

On a rainy Saturday in early April, Hilary Jordan walked into Room 339 at Glengarry Hospital in Victoria holding a card and potted plant bursting with yellow flowers. It was a special day, she reminded her husband.

Forty-five years earlier, she and Ian Jordan had tied the knot, back when she was a rosy-cheeked brunette and he a strapping young man with a passion for bagpipes.

Married in Victoria, both at 21, they had honeymooned in California at the Disneyland Hotel.

"Ian, can you believe we're this old?" she said, touching him gently on the forearm.

She didn't expect a reply.

For two-thirds of their marriage - more than 30 years - her husband was unable to speak. But his eyes brightened when she talked, and at times he would smile or groan as if he had something to say.

Constable Jordan, 66, suffered a traumatic brain injury in a car accident on Sept.

22, 1987, at the end of his night shift as a Victoria police officer.

Day after day, Hilary visited him in Room 339. The small private room where he had lived since 2002 had a window overlooking treed streets and just enough space for a porcelain sink, a chair and a hospital bed.

Hilary had covered the walls with framed photographs of their son, Mark, a toddler around the time of the accident, all the way up to his graduation from law school.

On their 45th wedding anniversary, Hilary kept the mood upbeat. But as she gazed at her husband, unable to walk, feed himself or communicate, she felt pangs of sadness and guilt. Trim and healthy at 66, she would spend the afternoon doing chores and then go out with a friend. But her husband, greying and thin, had no life outside Room 339.

Nevertheless, he had survived for more than three decades in a barely conscious state - a longevity neurologists described as "extremely rare."

Her husband, she said, had a "strong will to live."

But did Constable Jordan choose, on some level, to stick around for all those years? Was he conscious enough to recognize his son's voice, or understand the things his wife said?

Patients such as Constable Jordan fall into a medical mystery zone, at a time when neuroscientists are still cracking the code of human consciousness.

Consciousness, it turns out, is not a light bulb that switches on or off. It's more like a dimmer switch - bright and dazzling in a fully wired brain, ebbing down to a dull flickering that's nearly indistinguishable from darkness.

Some patients who show no signs of awareness may have active minds, such as the case of Jean-Dominique Bauby, the French journalist whose "locked-in syndrome" inspired the film The Diving Bell and the Butterfly. But in other cases, a patient's smiles, tears, moans and groans may prove to be reflexes - random and meaningless.

When it comes to diagnosing disorders of consciousness, "we're learning that we're making mistakes," said Jeanne Teitelbaum, program director for neurocritical care at the Montreal Neurological Institute.

She added that even if brain-injured patients regain a degree of consciousness, fleeting awareness of their handicaps "might be a total torture." Such cases raise ethical questions around measures to maintain life no matter the cost. For others, hearing the voice of a loved one now and then might be enough to make life worth fighting for. But unless they can communicate, "we don't know."

No one could say for sure what was going on inside Constable Jordan's head. But over the years, he left clues.

Both his wife and a friend from the police department, Ole Jorgensen, said his eyes widened in what seemed like recognition when they talked. Health-care aides said he moaned when he felt pain, and responded to light and sound. One of his music therapists said he would turn toward his favourite music, especially Simon & Garfunkel's Bridge Over Troubled Waters.

The question is, just how much of the ambitious, fun-loving police officer people knew as Ian Jordan was still inside?

'HE WANTED TO BE WHERE THE ACTION WAS' Constable Jordan was a tall man with soft blue eyes, a broad forehead and a playful bent. Once, for a lark, he filled out a university application for one of the family cats.

Months later, the couple received an acceptance letter addressed to "Bruce Le Chat."

He was born on March 5, 1952, in Arcola, Sask., the son of a homemaker and an RCMP officer.

At 17, in Victoria, he fell head over heels for Hilary Lemon, a petite senior from a neighbouring high school who could pass as Sally Field. Soon after graduation, Ian followed his brother Pat to work in oil exploration in the Northwest Territories. Hilary, undeterred, travelled to Inuvik to spend a month with him. The smitten couple were engaged at 19, and married two years later.

Cosntable Jordan wore a Mickey Mouse watch, played bagpipes in the Canadian Scottish Regiment Pipe and Drum Band, and loved Disneyland rides, especially Pirates of the Caribbean. But he had a thing for dangerous jobs.

After a stint working at an ammunitions depot, he earned two degrees at the University of Victoria, in political science and criminal law. Then, in 1984, he landed a summer job at the Victoria Police Department, and got hooked.

Hilary remembers washing blood out of his shirt after he responded to a motorcycle fatality. Another night, he brought a service revolver home after receiving death threats. But she never tried talking him out of his new career. "He just loved it," she said. "It was in his blood."

The couple lived in a little stucco bungalow, watched Dallas on Fridays and celebrated the arrival, in 1986, of their son, Mark.

On Sept. 22, 1987, Constable Jordan was filling out paperwork at the end of his shift when an alarm went off in a downtown stereo shop. He had been injured earlier that night after falling down stairs in a night club scuffle. Nevertheless, he jumped into his squad car - without notifying the dispatcher - and raced toward the scene.

Constable Jordan was a go-getter, said his buddy, Constable Jorgensen, who was speeding toward the shop from another direction. "He wanted to be where the action was."

Constable Jorgensen spotted his friend at the intersection a split-second before their vehicles collided, but it was too late.

His police cruiser T-boned Cosntable Jordan's vehicle, sending him flying into the opposite car door.

Hilary Jordan will never forget the sight of a police officer standing outside her bungalow at 3 a.m., shining a flashlight under his face. "Is he dead?" she asked. "No," the officer replied, "but he's pretty bad - you'd better come with us."

Her husband, then 35, was knocked unconscious and rushed to Victoria General Hospital. After emergency neurosurgery that night, he was comatose and had partial paralysis below the waist.

Patients in a coma show no response to stimuli, including pain, and their eyes remain closed. After several weeks in this state, a comatose patient either becomes brain dead - the total cessation of all brain functions - or vegetative, the unfortunate term for a patient with sleep-wake cycles, but no awareness of themselves or the outside world.

Patients may remain in this state indefinitely, or begin to have elusive moments of awareness as they enter what's known as a "minimally conscious state." On a good day, a minimally conscious patient might smile in response to a familiar face, or even follow a simple instruction, such as "blink to say yes." But the same patient might show no awareness for days or weeks at a time.

Hilary had high hopes on Day 16 after the accident, when her husband opened his eyes for the first time. Doctors had observed lip and eye movements. "I didn't expect this so soon!" she wrote in her spiral notepad that night.

Now that her husband was awake, though unaware, Hilary set herself on a mission to stimulate his brain. On Day 22, she arranged to have a police scanner installed in his hospital room, thinking the radio alerts might spark recognition.

Around the same time, she began slathering her husband's face with his Old Spice aftershave and Royal Lyme cologne, hoping the familiar scents would trigger memories.

Hilary relied on friends and family to help her get to the hospital twice a day, since she had never learned to drive. She brought a cassette player from home and played her husband's bagpipe recordings in his hospital room. She had pictures of herself with little blonde "Markie" enlarged and suspended over Constable Jordan's bed. "I just wanted to try everything."

But after months of rehabilitation efforts, his condition did not improve. Constable Jordan ended up in long-term care, with few opportunities for reassessment using modern diagnostic tools.

Back then, the Berlin Wall was still up, big hair was all the rage and The Simpsons was making its debut as a series of shorts on the Tracey Ullman Show. Physicians lacked effective tools to detect the minimally conscious state, a medical term not formalized until 2002.

Recently, however, researchers have discovered that patients with severe brain injuries may continue to show changes to their brains' white matter - areas of the central nervous system affecting brain functions including motor learning - over years and even decades, said Joseph Fins, a specialist in disorders of consciousness at Weill Cornell Medicine in New York.

Assuming Constable Jordan was minimally conscious, Dr. Fins said, "he almost certainly had a different brain 20 years after [the accident] than when he was injured."

LIFE IN ROOM 339 Some of the staff at Glengarry Hospital had their doubts about whether the police officer lying in Room 339 could grasp anything they said. But not Katherine Graham, one of his health-care aides for more than 15 years.

She and a friend from downstairs would crack jokes around Constable Jordan, telling him how handsome he was. She had a feeling he got the gist, because "his eyes would flicker."

Every second day or so, she would get him dressed and out of bed. Moving Constable Jordan was a two-person job. Working with another aide, she would secure him in a sling and raise his body using an

overhead lift attached to a ceiling track. After lowering him gently into a custommade wheelchair - designed like a chaise longue because his legs wouldn't bend - she would roll him outside for fresh air on the garden patio.

Lack of muscle movement had forced Constable Jordan into a contracted position, with his head twisted towards his right shoulder and his right arm outstretched. Sometimes he would moan in pain.

But Ms. Graham was convinced that despite his discomfort, he had a reason to live.

Constable Jordan would "light up" when friends and family came to see him, and "part of me thinks that he wanted to see what would happen with his son."

People who have never met a patient such as Constable Jordan might argue about the cost of keeping him in care. But, she asked, how do you put a price on a life?

FLEETING AWARENESS As profoundly disabled as theoretical physicist Stephen Hawking was, no one would say his life had no meaning. Most of us regard conscious thought as the be-all and end-all of human existence: "I think, therefore I am."

But when people think about disorders of consciousness, the conversation tends to shift to the right to die, Dr. Fins said: "There's a kind of nihilism about these patients."

This mindset has roots in the precedentsetting case of Karen Ann Quinlan, a patient in a vegetative state whose parents won a 1976 legal battle for the right to disconnect her from a ventilator.

But new research has shown that patients thought to be unaware are misdiagnosed at a "staggeringly high rate," Dr. Fins said. In a 2009 study of 44 patients diagnosed as vegetative, researchers found that 41 per cent of patients "were actually minimally conscious."

Minimal consciousness is tough to measure, since episodes of awareness may come and go. To increase the chances of an accurate diagnosis, the tool used in the study, called the Coma Recovery Scale - Revised, specifies the number of times its multiple tests must be repeated.

Using everyday items such as a mirror or comb, the medical examiner might gauge the patient's reaction to a moving object or a rattling sound, or the patient's response to a command such as "touch the toothbrush." Higher scores on each test indicate responses driven by conscious activity, as opposed to involuntary reflexes.

Another bedside assessment tool has sprung from the lab of Adrian Owen, a neuroscientist at the University of Western Ontario. Sensors placed on the scalp measure brainwaves using electroencephalograpy (EEG) in response to sounds, words and verbal instructions, such as "imagine yourself kicking a ball."

Constable Jordan's signs of awareness were too subtle for a doctor to recommend an exorbitantly expensive transfer to one of North America's few neuro-imaging facilities specializing in minimal consciousness. Hilary said she doubted her husband was ever assessed with either the experimental EEG diagnostic technique, or the 2004 Coma Recovery Scale - Revised. Very few Canadian physicians have training to use these tools.

Nevertheless, Dr. Fins argued, patients with disorders of consciousness should have the right to an accurate diagnosis - and regular reassessments as their brains change over time.

'DOES HE KNOW I'M NOT THERE?' Constable Jordan didn't leave a living will, and other than a feeding tube, he wasn't on life support. Hilary said she never considered having his feeding tube withdrawn, leaving her husband to die of thirst and starvation. He grew up with a strong Catholic faith, and "there was no way I was going to make that decision for his family, my family and our son."

Even the worst news would not change her mind. On Day 139 after the accident, she had a meeting in the office of her husband's neuropsychologist. As soon as the door was shut, five specialists in the room described the severe damage to her husband's mid-brain. His condition, they said, was unlikely to change. She broke down and wept.

Hilary left the hospital with a referral for grief counselling and a support group. But on the drive home in her new red Ford Topaz - purchased right after she passed her driver's test - Hilary made a promise to herself. She would agree to a few sessions of grief counselling, but would not wallow in her pain. She and her son would maintain their connection to Constable Jordan, but never allow the accident to ruin their lives.

"Ian wouldn't have wanted that."

Hilary scaled back her hospital visits to about once a week so she could focus on Mark, who was just beginning to talk. Each time she left her husband, though, she couldn't help but worry. "Does he miss me?" she wondered. "Does he know I'm not there?" Year after year, Hilary and Mark carried balloons to the hospital on March 5 to celebrate Ian's birthday. But Mark Jordan, 32, cannot remember a time when his father could walk, talk or give him a hug.

When he was younger, he would stand at his father's bedside, not knowing what to say. Sometimes his mother would give him a nudge. Then he would tell his father about his friends at school, or a trip to Disneyland with his mom, "hoping he could hear me."

Mark was used to people saying he was just like dad. He had the same broad forehead and a similar voice and height. Both studied political science, followed by criminal law.

But when he entered university, Mark grew quiet about his visits to Room 339. In Edmonton, where he works as a criminal lawyer, few of his friends and colleagues knew what his family had been through.

"I didn't want people to feel sorry for me," he said, "and also it made me sad to talk about it."

THE FLUTTER OF AN EYE Dramatic recoveries in patients such as Constable Jordan are exceptionally rare, but not unheard of. Dr. Fins, the medical ethicist at Weill Cornell, describes several cases in his 2015 book, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.

One patient, Margaret Worthen, gained the ability to communicate "yes" and "no" with a flutter of her left eye after spending six years in what doctors believed was a vegetative state. Neuro-imaging revealed that her brain had partly rewired itself.

Certain medications and surgeries may accelerate the return of consciousness, Dr.

Fins noted. In 2007, the journal Nature published a remarkable case study of a minimally conscious patient who had deep brain stimulation, using a pacemaker-like device that emits electrical charges. Within months, Dr. Fins said, the patient could answer simple questions, and "tell his mother he loved her."

But interventions such as these remain experimental. And the jury is still out on whether enhancing awareness in these patients is humane.

"I have a lot of ethical issues with this," said Dr. Teitelbaum at the Montreal Neurological Institute. Even if medical advances can stimulate consciousness, "are we right to keep people in a state where they cannot move - they can barely flicker?" she said. "I just hope they're not screaming inside."

Hilary Jordan said she would rather her husband be "in LaLaLand" than have him consciously suffer physical or emotional pain. She had no way of knowing, however, if he was aware of his state.

Nevertheless, Constable Jordan received a high level of care over the long haul. Visitors treated him as if he was aware - from his in-laws to his buddy Constable Jorgensen to Victoria's chief of police. His mother, Marion, would pull up a lawn chair to his bedside every day until shortly before her death in 2009. Whether this attentiveness contributed to his longevity is anyone's guess. But most patients in his state "are not that lucky," Dr. Teitelbaum said.

Members of the Victoria Police Department - including new recruits - would make their way to Room 339 to pay their respects. Constable Jordan's determination to respond to a burglar alarm, despite being injured earlier on the job, reflected the courage and sacrifice shown by the finest law-enforcement officers, said Victoria's Chief of Police, Del Manak.

"They will risk their own safety to help others," he said, "and that's exactly what he was doing that night."

MEANINGFUL COMMUNICATION Constable Jordan's sense of duty ran so deep that at times, Hilary wondered whether he lingered in the hospital for her sake. "He was the kind person who'd think, 'Oh, I can't leave, because what would become of her?' " But the deep loyalty ran both ways. Hilary credits her British parents for raising her with the inner fortitude to manage her husband's care, year after year, while supporting herself financially and looking after their son.

Constable Jordan's insurance policy helped cover expenses, but it was "a grain of sand" compared to what he would have earned, she said. Hilary worked in the promotions department at The Bay and as a fashion stylist, and later invested in a fitness gym.

Ever since Mark left home for university, she has lived alone in the pink-stucco house she purchased two years after the accident, in 1989. Hilary declined to discuss her private life, but said she had never wished to remarry. "My house is too girly to have a man living here," she said with a chuckle.

As their son matured, Hilary went back to visiting her husband daily. About two years ago, when a practitioner at Glengarry told her Jordan seemed to respond to music therapy, she secured funds to pay for extra sessions - one of which led to a breakthrough.

Constable Jordan had biweekly sessions, starting late last year, with Supriya Crocker, a neurologic music therapist who uses specific techniques to help re-establish brain pathways involved in speech, movement and cognition.

In Room 339, she would try to rouse him by singing and strumming her guitar. Constable Jordan was on potent pain medication, but often, he'd start to stir in his bed.

Sometimes he would smile and open his eyes.

Working with Constable Jordan reminded Ms. Crocker of her children when they were three or four months old. His smiles were not random, she said, but a response to human connection.

On April 5, two days before his 45th wedding anniversary, Constable Jordan became more alert than she had ever seen him. When she sang the words, "Ian, open your eyes," he opened his eyes. When she tried a different instruction - "Lift your finger, Ian!" - he did just that. She repeated each phrase several times, and concluded his responses were intentional.

Constable Jordan only wiggled his finger when she sang the instruction, she said.

The brain's response to the building blocks of music, such as melody, rhythm and pitch, is "very different than spoken language," she explained. "I think he was likely responding to the combination of sound and words."

She saw potential to work toward a system of yes-no responses with Constable Jordan. Significant rehabilitation remained unlikely, she added, but "I feel like there was opportunity to have meaningful interactions with Ian."

She never got a chance to build on his remarkable progress that day, however. Six days later, on April 11, Constable Jordan died from complications of a lung infection.

Ms. Crocker hesitated to tell his wife about the session soon after the funeral - a full-honours service that drew about 1,000 mourners to Victoria's Christ Church Cathedral. "I didn't want to cause pain."

Hilary didn't hear the details of her husband's last music-therapy session until three months later. His responsiveness that day didn't surprise her, she said. But the report from a trained practitioner "does provide more meaning and credibility to what we've been saying all along," Hilary said. "He still was there."

Constable Jordan's story continues to unfold. This September, the Victoria Police Department will hang a plaque for him in a hall at police headquarters dedicated to officers who have died in the line of duty. Interviews for new applicants will take place in the renamed Jordan Room. Constable Jordan's name will be engraved in a glass panel at the National Memorial in Ottawa, and added to the National Honour Roll.

Hilary, meanwhile, has found herself grieving twin losses: the life she had with Ian before the accident - and the brain-injured man she took care of for so many years. "Even though he was in that state, I miss him," she said. "It's like I miss two people."

On Jordan's last day, Hilary got a call from the hospital saying her husband had taken a turn for the worse. She rushed over, joined by her sister and brother-in-law.

Around dinner time, she told her husband she was going home to get something to eat and would be right back. Her sister and brother-in-law went for a bite, too. And in those brief moments of solitude in Room 339, Ian Jordan slipped away.

Hilary was just getting her shoes on to head back to the hospital when the phone rang.

"That's it," her sister said. "He's gone."

Associated Graphic

Hilary Jordan holds the hat of her husband, Constable Ian Jordan, who died in April after spending more than 30 years incapacitated by a brain injury, at home in Victoria on June 14.

Health-care aides Jacquie Green, left, and Katherine Graham talk in Ian Jordan's room at Glengarry Hospital, where they were involved in his daily care.

Above: Pallbearers carry the casket of Victoria Police Constable Ian Jordan during a funeral service at Christ Church Cathedral in Victoria on April 19. Left: Constable Jordan's son, Mark, centre, and Hilary Jordan attend the funeral.

The room at Glengarry Hospital in Victoria, where Constable Jordan spent the final 15 years of his life.


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