Burn My Clothes, Ma!: 2003

This is a great story by Julia Keller from the Chicago Tribune which features Ms. S in Part II.

The link to the source is www.chicagotribune.com/brain

Part One:

part one

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'They are shadows'
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Underreported and misunderstood, brain injury not only devastates victims' bodies, it also changes who they are

By Julia Keller
Tribune staff reporter

December 17, 2003

Kane's brain would work the way it was designed to work, with the perfect synchronicity of idea and action, of intention and gesture. If he wanted to scratch his left ear, he did; if he wanted to ponder the existence of a higher power governing human affairs, he did that too. Everything meshed.

And then, at about 1:10 a.m. on June 23, Kane lost control of his Honda Gold Wing motorcycle along Interstate Highway 290 near Itasca. His head smashed into a concrete barricade.

At that moment, Kane's brain -- the approximately 3-pound pinkish-gray mass suspended inside his skull, that he, like most people, largely took for granted as long as it did its job -- was ripped from its moorings like a sailboat in a hurricane.

Whatever Kane was contemplating in the seconds before the accident -- his wife, Jill, his son, Jimmy, his ambitions or his memories or simply how pleasant the night air felt on his face -- it was the final time his brain would function the way it had functioned throughout the 48 years of his life.

In less time than it takes to say "Jim Kane," he was no longer Jim Kane.

"With brain injury," said Dr. Ghada Ahmed, "you are reborn. You are not the same person you were."

Ahmed would meet Kane 49 days later, when he was taken from an acute-care hospital to the Brain Injury Medicine Unit on the 10th floor of the Rehabilitation Institute of Chicago, which, after its recent renovation, is now the newest and among the most innovative units in the nation.

In the United States, a traumatic brain injury occurs at least every 21 seconds, making it the No. 1 cause of death and disability for people under 44.

So prevalent is brain injury, and so little does the public seem to be aware of it, that earlier this year the Centers for Disease Control dubbed traumatic brain injury a "silent epidemic."

An estimated 1.5 million Americans annually suffer a traumatic brain injury. The exact number is a murky unknown because of significant underreporting and misdiagnosis. Even mild traumatic brain injury, including sports-related concussions, can result in physical and emotional problems. Some 5.3 million Americans are living with disabilities from brain injury.

Yet it is through brain injury that researchers have gleaned much of their knowledge about the brain, from a new understanding of consciousness to a realization that undiagnosed brain injury among children may be complicit in violent behavior later in life.

Scientists have discovered more about the brain in the past 10 years than in the previous 10 centuries -- yet by all accounts, are still at the threshold of understanding the brain's deepest secrets.

"The brain is the last bastion of science," said Dr. Ricardo G. Senno, medical director of RIC's brain injury unit. "Brain injury medicine is where cardiology was 50 years ago."

Had his accident occurred in 1993 instead of 2003, Kane most likely would have died. In the past several years, however, better emergency care at accident scenes and improved neurosurgical techniques in trauma centers mean that more people than ever before survive severe brain injury.

Yet they face excruciating ordeals. Dr. Jeff Frank, director of the Neurosurgical Intensive Care Unit at the University of Chicago Hospital, said, "In critical care, the decisions are life and death decisions. In neuro intensive care, it's a more complicated dynamic. It's not, `Will the patient live or die?' but, `What does the patient want to live with?'

"Brain injury is unique," he added, "because it affects personhood."

Most people think of themselves as unalterably unique. They may change their opinions about their political affiliation or their favorite novel, but their fundamental essence is inviolate. Yet with brain injury, that sturdy self seems to drop away like an elevator in free fall, which is what makes brain injury uncannily devastating, even among other life-changing calamities such as spinal cord injury.

Christopher Reeve made that point when he titled his 1998 autobiography "Still Me." Even without the use of his limbs, the paraplegic actor and advocate for the disabled was still himself. He didn't suffer a brain injury, so his personality was intact.

The families of people with brain injury, however, know another reality. For them, "it's like there is a new family member," said Dinh To, one of two social workers on RIC's brain injury unit. "That's the hard part. It's like they are bringing home a new baby. Or an adopted child."

During stays that average 26 days, patients on the 10th floor begin the second half of their lives: That was then; this is now. The 10th floor is the place where they first become aware of the difference -- the difference between a brain that did their bidding to a brain that has turned into an "enemy," as Kane would later describe it.

"Families always ask, `Will he be the same?' The answer is no," said Tom Wolf, To's colleague on the unit. "With severe brain injury, they are the shadows of the former person."

At the moment of impact, Jim Kane's brain went through a biological Armageddon. The attack by the concrete barricade -- and to the brain, it was an attack, a vicious, world-ending assault on its frontiers -- initiated a series of responses by the brain that would bring cataclysmic consequences. The battle was joined.

The brain, which floats in a pearly sea inside the skull, is both superbly well-defended and pathetically vulnerable, Senno said. "It's protected not only by the skull and the cerebral spinal fluid, which acts as a kind of shock absorber, but also by our eyes and ears, which alert us to danger, and by our hands, which we can hold out and protect ourselves with, and by muscle layers. The brain is protected -- but it's not protected from going 80 miles an hour and hitting the windshield or falling 20 feet."

When the brain is struck, its first response is edema: swelling. Just as other areas of the body swell if injured, brain tissue also swells. But unlike an ankle or arm, brain tissue has nowhere to go. It is blocked by the skull, which usually protects the brain but in the event of injury becomes its worst enemy.

Unable to go out, the swelling tissue begins to go in, pressing relentlessly on the capillaries threading their way through the brain, causing their collapse. That, in turn, cuts off the oxygen supply to the brain. The brain is an oxygen hog: It typically comprises less than 5 percent of an average woman or man's weight, but sucks up more than 25 percent of the body's oxygen. Without it, cells quickly begin to perish.

The wallop sustained by Kane's brain savaged its basic metabolism, the exquisitely balanced chemical and electrical system by which his 100 billion or so neurons went about their business of regularly making some 1,000 trillion connections to other neurons. As cells die -- some instantly, some over the next 24 hours or so -- from a traumatic blow, their death throes trigger the release of chemicals that destroy other neurons.

That is why, even though blows to different areas of the brain can result in different impairments -- a concept known as localization -- a brain injury anywhere affects the brain everywhere.

In the minutes following impact, the brain continues to swell, heading desperately for the only exit it can find: the foramen magnum, the hole at the base of the skull through which the spinal cord rises. Nestled next to the foramen magnum is the midbrain, home to the respiratory center -- which means that, as brain tissue squeezes its way down through the foramen magnum, it cuts off breathing.

As Kane lay by the highway, his brain was in chaos. The pressure was building, the cells screaming for oxygen, toxic chemicals flooding his neurons. He was unconscious, which occurs, researchers now believe, when the electrochemical signals passing between cells are disrupted by the lightning-storm of injury unleashed across the brain.

He was dying.

"For a brain-injured person," Senno said, "time is standing still." To Jim Kane, the world had ceased to exist; it flew away from him, ever fainter, ever further, and with it went the fundamental essence of a man unique in history -- just as every person is unique -- known as Jim Kane.

Once he was ferried by helicopter to Loyola Hospital's emergency room in Maywood, however, the world rushed back in. It descended with the bustle and din of modern trauma medicine: the formidable array of knowledge and technology that enables physicians to treat brain injury more effectively than ever before. This is the so-called "golden hour," the crucial interval just after injury during which severely brain-injured patients, once written off, now can be saved.

Incoming patients with brain injury are quickly evaluated according to the Glascow Coma Scale. It measures the depth of unconsciousness by assigning 1 to 4 points to responses such as eye opening and reactions to pain and to commands. Tallies of 3-8 indicate severe brain injury; 9-12, moderate; and 13-15, mild. The lowest possible score is 3.

Kane was judged at 3. The rankings are important because studies generally agree that the longer and deeper the coma, the less promising the recovery.

Within minutes, Kane's brain underwent a CT (computerized tomography) scan, a specialized X-ray that can reveal the location of bleeding and other damage.

Kane's injury was closed, meaning that the protective covering around the brain called the dura mater (Latin for "hard mother") had not been pierced, despite his fractured skull. Open injuries typically result from bullets or other penetrating wounds.

His brain was swelling so rapidly, with such dire consequences for brain tissue and its delicate filigree of neurons, that physicians made a drastic decision. They put Kane in a barbiturate coma, effectively anesthetizing his brain so that it would require less oxygen, a contingency employed in less than 5 percent of brain-injury cases. With the blood supply to Kane's brain already so catastrophically curtailed by the swelling, his brain would suffer less, physicians reasoned, if its requirements for blood also were reduced.

Brains are injured in two general ways. In one scenario, linear forces -- such as Kane's head striking the concrete barricade -- cause a coup-contrecoup injury, in which the brain hurtles forward against the skull, then hits the skull again in the opposite direction when the brain bounces backward. Often, the second injury -- the "contrecoup" -- is more damaging than the initial impact.

In another, the brain undergoes a violent wrenching, in effect a whiplash, resulting in what is called diffuse axonal injury. The white matter coating the axons -- spidery conduits whisking information from neuron to neuron -- is sheared.

Because it happens deep within cells, diffuse axonal injury doesn't show up on scans. Yet it can be even more devastating than coup-countrecoup, since it affects memory and other crucial cognitive functions. Many people who endure traumatic brain injury demonstrate signs of both: Their heads have struck solid objects as well as been violently whirled about.

Most likely, trauma patients with brain injuries have sustained other injuries too -- torn skin, fractured limbs, ruptured organs. Which should be taken care of first?

As a young intern, Senno recalled, he approached a patient with a bewildering host of serious complications. Senno has never forgotten the words of a senior physician who made an instant case for priorities:

"Save the brain."

Modern neuroscience was born with a brain injury.

In 1848, a railroad worker named Phineas Gage was planting explosives to clear land in Vermont for new track for the Rutland & Burlington line. Tamping the powder with an iron rod, he accidentally set off the dynamite. The rod blasted into his left cheek, shooting through his brain and rocketing out the top of his skull.

Gage survived and later seemed to be physically normal, but his personality was permanently altered. The hard-working, considerate man had turned into a lazy, ill-tempered lout. It was, his friends said, as if he had become a different person.

Through Gage's ordeal, researchers confirmed for the first time that injury to specific areas of the brain -- in Gage's case, the prefrontal cortices -- could produce specific deficits, and that the brain affects the entire constellation of human behavior: not just reasoning skills, but also the ability to empathize, weigh the consequences of actions, plan for the future.

These days, exploring the brain is big business. In late September, Microsoft co-founder Paul Allen pledged $100 million to establish the Allen Institute for Brain Research in Seattle. It will capitalize on a growing fascination with neuroscience, an accelerating awe that has transcended the scientific world and moved into the general public. Oliver Sacks, Steven Pinker and Antonio Damasio are among the brain researchers who have written best-selling books.

Now the challengeis to transfer the new knowledge about the brain from the laboratory into the lives of brain-injured people.

That exchange has been under way for at least a decade in emergency rooms. Thanks to a new understanding of brain biochemistry and new, more detailed imaging techniques such as MRIs (magnetic resonance imaging) and CT scans, along with procedures to monitor pressure in the wounded brain, physicians have made tremendous strides in treating severe brain injuries in those first critical hours.

Brain injury continues to be one of the primary routes through which breakthroughs in neuroscience occur, said Dr. John D. Corrigan, director of the Ohio Valley Center for Brain Injury Prevention and Rehabilitation at Ohio State University. "There is always a resurgence of study after a war. The Vietnam War was a milestone in the study of brain injury," as battlefield surgeons figured out under fire how best to deal with head wounds.

Some 20 percent of injuries to American soldiers in recent conflicts in Iraq and Afghanistan have included injury to the brain, according to the Defense and Veterans Brain Injury Center, created by the U.S. Congress after the Gulf War in acknowledgment that brain injury is not like other injuries. With more soldiers surviving their brain injuries, just as more people in the general population now survive, the need for specialized brain injury rehabilitation was clear.

Despite those record rates of survival, severe brain injury still can be lethal, killing at least 50,000 people annually. Recent victims have included Dr. Robert Atkins of low-carb diet fame, who slipped on the ice, and Washington Post publisher Katharine Graham, who tripped on a stone patio. The most ordinary of events -- a trip, a slip, a slide, a stumble, a fall -- can, if the brain is injured, bring about the most devastating of fates, including but not limited to death.

Dr. Hunt Batjer, chairman of the department of neurological surgery at Northwestern, who has performed emergency brain surgeries for more than 25 years, said that possibility of lost selfhood torments families. "They always say, `Will he be a fireman again? Will he be a lawyer again?' I have to tell them that it is completely impossible to know."

Founded in 1954, the RIC building at 345 E. Superior St. rises in the midst of other rectangles, other gray-flanked structures that take their earnest places in the giant tic-tac-toe board of downtown Chicago.

Along with treating patients for calamities such as spinal cord injury and amputation, the 20-story, 155-bed facility is a major research center, from the lab on the 14th floor where scientists study the complex mechanics of walking, to the 17th floor, where prosthetics and orthotics are created.

When the elevator opens on the 10th floor, you step off, pass through a set of glass double doors and enter a bright, open space with a cool white floor. Therapists stride quickly through the halls to fetch patients for their sessions. Phones trill at the circular reception desk. Patients arrive and depart, sometimes showing up initially on gurneys with eyes closed and bodies motionless and then, if they are fortunate, leaving by walking out under their own power -- making way for another patient, and then another and another.

"Unfortunately, we've had tremendous growth in brain injury," Senno said. "I'd rather be put out of business. I always tell people, `I'm good at what I do, but you don't want my services.'"

In August, the brain injury medicine unit moved from the fourth floor to the 10th, the culmination of a two-year, $5 million renovation to create one of the most innovative such units in the nation. Everything on the 10th floor is geared toward therapy and research, toward stimulating the brain to get back to business as quickly and efficiently as possible -- and then figuring out what worked and why.

"The philosophy in rehabilitation used to be, `Let's wait and see what happens,' " said Senno. "Now, we're capturing people early. We're aggressive."

Upon admission, patients are evaluated according to the Rancho Los Amigos Cognitive Scale, a 10-step road map through traumatic brain injury. Each patient goes through all 10 steps -- from "No Response" at level 1 to "Purposeful and Appropriate" at level 10, with stops along the way at levels such as 4, "Confused-Agitated," and 5, "Confused-Nonagitated" -- but always at her or his unique pace, remaining at steps for wildly varying lengths of time.

"Show me 5,000 brain injuries," Senno said, "and I'll tell you 5,000 stories." Every patient is different, yet from those singular experiences Senno and his colleagues try to extrapolate general principles about the brain, principles that may be subsequently applied in the rehabilitation of the next wave of injured brains -- the brain of a Jim Kane and other patients whose stays at RIC intersected with his.

The brain of Sarah Conrad, 24, a new bride and high school English teacher who loved Ernest Hemingway and the Chicago Cubs -- and whose car was hit broadside by another motorist on Mother's Day just minutes after she left her Plainfield home.

The brain of Nick Contri, 52, a funny, sarcastic man who could do anything with his hands, from creating metal sculpture to building kitchen cabinets -- and who slipped off a ladder and fell 25 feet onto a concrete parking lot in Munster, Ind.

The brain of John Sanders, 28, a dark-eyed charmer who had just made an offer on a house in Wildwood, Ill., after asking his girlfriend to marry him -- and who was thrown from his motorcycle in downtown Chicago.

The brain of Patrick Welch, 18, a recent high school graduate who delivered pizzas for spending money and dreamed of being a detective -- and who was struck by lightning while stepping out of a summer-school class at Illinois Valley Community College in Oglesby, Ill.

On the 10th floor, people such as Kane, Conrad, Contri, Sanders and Welch, all of whom were assessed at level 4 when they arrived except Conrad, who was at 5, had awakened hours or days or weeks after their accidents. They were restless and baffled, blinking in the fierce sunlight of a permanently altered world.

A world in which everything they did -- the most casual gesture -- suddenly constituted an excruciating ordeal.

A world in which physical activities taken for granted throughout their adult lives -- eating, talking, reading, breathing, going to the bathroom by themselves, writing their own name -- suddenly represented astonishingly difficult tasks.

Yet brain injury is not just a crisis of the body. Bodies heal, and they heal in uniform ways. "A broken leg is a broken leg," Ahmed said. "But the brain -- it is different for everyone. A brain injury is a lifetime diagnosis."

In the first days after he was settled into Room 1046, Jim Kane babbled. He ranted. He muttered about what he called "the Greek Mafia" coming to kill him.

He was a man who, if you asked him where he lived, would rattle off, "1304 N. 32nd Street," the apartment in Melrose Park where he had hadn't lived since 1978.

A man who ate a bar of soap that somebody left overnight on his bedside table because he didn't know what it was.

A man who went from an attentive and loving husband to a stranger screaming profanities at wife Jill and his therapists but who, when informed of what he'd just said, would cringe with shame and disbelief: "No, no, no -- I would never say those things. It wasn't me."

And it wasn't Jim Kane -- not the same Jim Kane, anyway, he had been on June 22. That Jim Kane disappeared into the black folds of a summer night.

In years past, a Jim Kane might have been written off, his brain injuries too severe, his prognosis too bleak. But not at RIC.

Not at a facility overseen by Senno, who knew something about long shots, about the power of persistent effort.

The 42-year-old physician was 9 years old when his family left Argentina to settle in New York. Because Senno and his sister spoke little English, they felt isolated and lonely, he recalled. Perhaps it was that ordeal -- being an outsider in an incomprehensible, seemingly closed world -- that pushed Senno into physical medicine and rehabilitation, a specialty often dismissed as the treatment of patients "other people don't want," he said frankly.

Senno can recount even less flattering nicknames for physical and rehabilitative medicine: the wastebasket specialty. The last car on the train. He and his sister, however, became physical medicine doctors, sometimes called physiatrists. She practices in the Boston area.

Senno's amiable, easygoing manner could fool you into forgetting the gravity of his daily duties. With his wire-rim glasses, thatch of thick black hair and slender build, Senno looks like a perpetual graduate student: intense, nimble, energetic, always ready to jump into any conversation about just about anything, from Harry Potter to the best way to pattern the bricks in the back-yard patio he was creating. He favored herringbone, because it was the most difficult.

The 10th floor reflects Senno's personality, his blend of calm-minded realism and visionary fervor. He knows the devastation wrought by brain injury -- he can, like any doctor who specializes in the field, rattle off the grim statistics, the every-21-seconds stuff -- but he also believes science is making gains in what previously has been dismissed as a hopeless condition, an irrefutable doom.

Senno believes passionately in the concept of brain injury medicine -- in the notion that brain injury should be a specialty such as cardiology or nephrology. Only in the past few years, Senno said, have physicians begun to understand how central the brain is to everything else the body does during its healing. Every drug, every surgery, every therapy ought to be evaluated in light of what it does to the brain.

He dreams of the day when brain injury rehabilitation will echo brain injury emergency treatment, where survival rates have dramatically improved in the past decade. In an increasing number of emergency rooms, new specialists known as neuro-intensivists handle a severely brain-injured person's care. The brain injury takes precedence over whatever else is going on in the body.

"It used to be, if you brought someone in [to intensive care] and they didn't get better right away, that was it," said Edward J. Sylvester, author of "Back From the Brink: How Crises Spur Doctors to New Discoveries About the Brain" (Dana Press), a study of the neuro-intensivist movement that will be published in January. Yet with what physicians now know about brain injury, "we've bought the brain time."

The U. of C.'s Frank, one of only a handful of neuro-intensivists in the nation in the fledgling field, said brain-injury patients formerly were "parceled out among specialties. It's bad for patients because no one is in charge. It's bad for families because they don't have a single person to talk to. We [neuro-intensivists] control the whole body."

Senno hoped for a similar consolidation at the other end of the brain-injury spectrum: the rehabilitation end.

"This is where you live," Senno would say, grabbing the plastic brain model off the metal shelf in his office and jabbing a finger at the frontal lobes. "This is what makes you who you are."

By observing how the wounded brain struggles to resume its diverse and intricate functioning, scientists have gained promising insights into the brain's bedrock enigmas.

Dr. Donald G. Stein, neurology professor at Emory University School of Medicine and co-author of "Brain Repair" (1997), said, "It used to be that if you didn't see recovery [from brain injury] in the first six weeks, the attitude was, `Why bother?' You were nuts if you said the brain could repair itself. But we're learning that even years after an injury or stroke, you can promote plasticity," the brain's ability to change itself in response to its surroundings and experiences.

Despite promising research in brain injury medicine, however, the field still is ignored by many physicians and medical school administrators. Dr. Michael Pietrzak, executive director of the International Brain Injury Association, declared, "TBI [traumatic brain injury] hasn't been high on the priority list for physicians because everybody thought, `Well, there's nothing you can do.' "

Few medical school curricula include specific courses on brain injury. "I didn't have a single class on brain injury," said Senno, a 1994 graduate of the University of Illinois School of Medicine. "Not a class, not an hour. Zero."

Because the traditional thinking about brain-injured people was: Give up. A damaged brain is a damaged brain. Period.

Even if some recovery did occur, most physicians were convinced that it was bunched toward the front end of rehabilitation, then tailed off.

"There was a myth," Senno said, "that recovery from brain injury stopped after six months. Our research shows that it continues up to five years. If you can get someone to do this" -- he wiggled his right index finger -- "then after that, maybe they can pick up a pen."

And after that, maybe they can pick up the pieces of their lives.

Jill Kane was dozing on the couch in the living room of their Rolling Meadows home when she got the call early that Monday morning. She was in the car in minutes, rushing toward the hospital.

Jill, 45, is pretty and shy, with light blond hair that curves around her pale face and a soft, soothing voice. A voice that always seems to promise things would be better. A lullaby kind of voice.

Jim was big and sociable, a guy who might remind you of TV actor Jim Belushi. Fond of spaghetti dinners and kids and fixing things. He could fix anything, Jim could, from engines to toasters.

In family pictures, Jim's the one making the funny faces, with an arm slung around his wife's shoulder and a big, half-moon grin that crinkled the skin around his eyes. He had had a tough childhood, with constant money troubles in the family, and he had dropped out of high school to get a job and help with the bills. That was Jim: He always helped out.

They had been married 26 years. They dealt with life together, Jim and Jill, with the bad times and the frustrations, as well as the amazing, joyous things, such as the birth of their son 19 years ago. They bought a tidy little house. Jill worked for a company that made fasteners; Jim got a job repairing jewelry. For their 25th wedding anniversary, Jill surprised him with a shiny blue Honda Gold Wing motorcycle, almost 800 pounds of muscular chromium beauty. His dream.

Late on the next-to-last Sunday night in June, Jim decided the evening was just too gorgeous to miss. He loved motorcycles and had been riding since he was 16. He had owned five during their marriage. He and Jill often rode together, with him in control and her sitting behind him, hands cinched around his waist, cheek against his back. Jim was such a good driver, she said, that she could fall asleep on long rides. He was smooth and careful. He knew what he was doing.

Sometimes he wore a helmet. Sometimes he didn't.

This time, he didn't.

When Jill sent him off that night, did she have a premonition? A flicker of dark foreboding that she couldn't quite put her finger on?

No, Jill said. "It was just, `See you later, bye.' He wasn't his spunky self, and I hoped the ride would perk him up. It was such a beautiful night." Jim, she recalled, pulled on his black leather coat and gloves, just as he always did before a ride. "You wish," she says now, "that you'd known it was the last time." The last time, that is, that life would be normal.

The crash happened as Kane was returning from River Grove to Rolling Meadows, riding north along what is known as the 53 extension of I-290, near the line dividing DuPage and Cook Counties.

At the hospital, Jill was told that her husband probably wouldn't survive. His injuries were grievously severe: skull fracture, broken neck, bleeding in his brain. They handed her his wallet, which was covered in blood, and showed her to the waiting room.

When she finally was able to see him five hours later, she was stunned. His face was grotesquely swollen, his body sprouting lines to so many chiming monitors that he looked like part of a machine himself. Nobody knew. Nobody knew anything.

The days were not parceled into separate sunrises and sunsets but instead tended to blur into a single gray stretch of anguished waiting. Finally she was told that Jim was going to make it. He would remain in the drug-induced coma for 28 days, but he was going to make it.

His life was saved. She thanked God. His life was saved.

The real ordeal, however, was just beginning.

Every accident divides the world for the patient and their loved ones: Before and after. Sarah Conrad taught at Oswego High School and dreamed of her life with Pete -- and then her car was struck, and everything changed forever.

Nick Contri fixed heating and air conditioning units and loved going out to eat with his wife, Susan -- and then he fell off a ladder, and everything changed forever.

John Sanders had big plans for his girlfriend Cathy and his two small children -- and then he crashed his motorcycle, and everything changed forever.

Patrick Welch was a lanky, good-looking kid just a month past his high school graduation who was rebuilding a Chevy pickup in his parents' driveway -- and then he was struck by lightning, and everything changed forever.

Who, their families wondered, would emerge from the bundle of bandages and jungle of intravenous lines in which their husbands or sons or daughters or sweethearts were enmeshed?

Jill Kane knew who Jim Kane had been -- big, hearty, lovable Jim Kane. Funny, sweet Jim Kane. The guy who could fix anything. But who was her husband now? Who was this sullen stranger? You are your brain, she had been told over and over, and his brain has changed.

Who would he be?

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Thursday: How Jim Kane's struggles -- and the struggles of other patients -- push brain researchers to new discoveries.

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About this series

To report this story, Tribune reporter Julia Keller spent three months observing and interviewing patients and staff in the Brain Injury Medicine Unit at the Rehabilitation Institute of Chicago, and interviewed physicians and neuroscientists from around the world.

Copyright (c) 2003, Chicago Tribune

Part two:

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The pain of progress
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The physical and emotional ordeals that brain injury patients endure constitute the next frontier for neuroscience

By Julia Keller
Tribune staff reporter

December 18, 2003

Jim Kane's bellowing could be heard all over, a blistering mix of curses, threats, pleas, moans, wails and then, suddenly, a spelling bee:

"Stop it! F---! F---! Stop it! S-T-O-P. Do you know what I'm saying to you? STOP. S-T-O-P. S-T-O-P-P. S-T-O-P-P-P-P-P-P."

Kane, 48, was a big man. He was a lost, angry and confused one as well. Some two months before this morning in early September, his Honda Gold Wing motorcycle had flipped into a skid along Interstate Highway 290 near Itasca. Kane, who wasn't wearing a helmet, was slung headfirst into a concrete barricade.

He didn't remember anything about the accident, which left him with a broken neck, fractured skull and severe traumatic brain injury. All he knew about was the Now: The pain -- like fire, he said -- as a physical therapist tried to coax him into scooting from his wheelchair onto a waist-high padded table.

On the 10th floor of the Rehabilitation Institute of Chicago, home to the Brain Injury Medicine Unit, Jim Kane was learning how to walk again.

Before he could walk, he had to stand.

Before he could stand, he had to sit up.

But what he really wanted to do -- what he kept trying to do, against the wishes and hard work of physical therapist Heidi Roth -- was to slump back in his wheelchair and stay there.

"I'm telling you that I can't do this! I can't do it!" cried Kane. He didn't look at Roth. His protests instead were directed into some distant ether of agony. "Don't you understand? What don't you understand about what I'm sayyyyyyy-ing?"

A traumatic brain injury occurs every 21 seconds in the United States, rendering it the No. 1 cause of death and disability for people under 44.

Because so few Americans seem aware of the prevalence of brain injury, the Centers for Disease Control recently termed it a "silent epidemic."

Most traumatic brain injuries come, as Kane's did, from motor vehicle accidents, although brain injuries also can result from falls, strokes, infections, tumors and assaults.

Unlike other injuries, brain injuries alter personality. The Jim Kane he had been before the accident -- the agreeable, easygoing guy, the patient craftsman who worked as a jewelry repairman -- was no more. He had been replaced by a scared, flailing, agitated man who forgot who he was and where he was and why -- for Christ's sake, tell me why -- he was here.

What Kane went through during his six-week stay in the unit -- what all patients go through as they adapt to altered selves -- constitutes the next beachhead for neuroscience. The therapies designed to help them deal with their deficits also have enabled researchers to make revolutionary discoveries about the brain, from an expanded definition of consciousness to a new understanding of the dense matrix linking the physiological and the neurological. "It is through brain injury," said Dr. Ricardo G. Senno, the unit's medical director, "that we learn about the brain."

By studying people with severe traumatic brain injury, researchers have unearthed new dimensions of consciousness. Dr. James P. Kelly, a renowned expert on concussions who preceded Senno at the helm of RIC's brain injury medicine unit, said, "We're not guessing about this anymore. We know how it is that the brain is unconscious, when it stops processing external information."

The ordeals of brain-injured people have helped researchers refine definitions of consciousness, said Kelly, who now practices in Colorado. Instead of simply one side of an either-or state -- consciousness or unconsciousness -- consciousness now is regarded as a phase within escalating steps of awareness. "With comas, it's not only a matter of if the pathways [in the brain] are working," he said. "It's the volume of the brain that is working."

Two bright blue padded tables are the central objects in the therapy gym, a room just off the entrance to the unit. The approximately 6-by-8-foot tables -- they resemble giant exercise mats with legs -- can be raised or lowered according to patients' needs. Some transfer onto them from wheelchairs, some from a standing height. The tables, like the therapies, must be flexible.

"No, no, no, no, no," Kane cried, shaking his head wildly. "You're killing me."

"No, I'm not, Mr. Kane," Roth calmly replied.

"I'm dying!"

"No, you're not," she said.

Roth, a petite woman who wore her straight blond hair raked back in a ponytail, tapped the left armrest of Kane's wheelchair.

"Put your hand here and lift yourself up and scoot over," she said.

If the 10th floor, which resembles a small, thriving, self-contained city, has a town square, this is it: the gym. This is the place where people struggle to regain balance in their lives -- literally and figuratively -- after brain injury.

This is where, every day, therapists help patients relearn what might be considered the basic elements of being human: Standing up. Walking. Swallowing. Remembering.

Things so fundamental that, until they are suddenly beyond your reach, you don't even think about. But to people with brain injuries, such activities require a minute-by-minute focus, a ferocious and absolute devotion, an attention to the smallest particulars of what the finger or the foot or the shoulder is doing.

Behind Kane, gingerly holding himself up between the parallel bars, was a silent Nick Contri. Contri had a baffled look on his gaunt, 52-year-old face. He was recovering from a traumatic brain injury suffered June 18 when he plunged some 25 feet from a ladder onto a parking lot. A heating and air conditioning technician, he had been installing new units on the roof of a building in Munster, Ind.

Between another set of parallel bars, on the other side of the room from Contri, John Sanders, 28, sat in his wheelchair and contemplated the twin silver rails. Black hair was just returning to Sanders' head, after the emergency brain surgery that had saved his life following a motorcycle crash in downtown Chicago.

With the help of physical therapist Stacey McCusker, Sanders placed his left hand on the bar and lifted up his slender body; his right elbow, still mending from its break in the crash, was tucked at his side. He stayed upright, swaying slightly but keeping his position. Like Contri, he was quiet.

But the gym was noisy. It stayed that way throughout the day because the therapists' voices -- gentle but persistent, sounding the way parents do when they're teaching children how to ride a bike -- crosshatched the air, a latticework of positive attitude. "Good job!" and "Way to go!" mingled with "All right!" and "Let's try again, OK?"

Rising above it all was Kane's desperate bellow: "Stop it now. Please! Don't you understand? Every part of my body hurts. I can't do this!"

From consultations with Dr. Ghada Ahmed, Kane's physician at RIC, Roth knew there was no physical reason why he couldn't move from the wheelchair to the table. His broken neck had healed during the two months he spent in a hospital bed. There was no physical reason why he couldn't walk.

What stopped him was his brain.

Because of the bleeding and swelling, the cells in Kane's brain had been crushed and deprived of oxygen. His brain no longer worked the way it was supposed to because, as Roth had explained to Jim's wife, Jill Kane, the pathways between the brain and the rest of the body had shut down. Hence, physicians theorize, detours have to be constructed. That's what physical therapy is believed to do for the approximately 5.3 million people in America -- including more than a quarter of a million in Illinois -- living with disabilities from brain injuries: It helps their brains make alternative plans. Adaptations.

Researchers still are not certain how physical therapy with brain-injured people actually works -- how, that is, those new pathways are constructed, if they are "constructed" at all. Each time a patient on the 10th floor went through therapy, her or his experience contributed to the gathering data about precisely how the brain reorganizes itself after injury. There are five general theories governing the rejuvenation of brain function:

- Vicariance, in which uninjured neurons take over the duties of injured ones.

- Redundancy, or unmasking, in which sections of the brain are already in place to take over functions -- to be "unmasked" -- if certain areas fail.

- Substitution, in which the brain is taught strategies to find activities it can accomplish to replace activities of which it is no longer capable.

- Diaschisis, in which the brain's resiliency enables it to heal itself over time.

- Brain capacity, the common notion that people only use a small percentage of their brain capacity anyway -- 10 percent, some say, although physicians such as Senno are disdainful of such an arbitrary number -- and thus can afford to lose some of it to injury and still function.

No matter how the recovery occurs in the brain, though, it is always a slow, painstaking process for patients and families. They must learn to rejoice at small, incremental gains, at minute gradations of improvement.

Ahmed said, "If it's just the blink of an eye, people may say, `Oh, it's only blinking.' But that can be everything."

Ahmed had an aura of smiling, almost ethereal calm as she made her rounds each morning, monitoring patients such as Kane as they struggled through their physical, occupational and speech therapies. She knew each patient's bifurcated biography -- the time before the brain injury, and the time after. Normal life, and then this.

She leaned down to be eye-level with Kane as he sat on the blue table, an angry sneer crumpling his features.

"Where are you?" she asked him.

"Hospital," he answered.

"Which one?"

"Don't know."

Ahmed planted her stethoscope on his big back, listened; on his chest, listened; on his abdomen; listened. She draped the stethoscope around her neck and patted his shoulder. "OK," she said. Jim shrugged and stuck out his tongue.

Across the room, Jill Kane winced. She said, "Jim. Be nice." He rolled his eyes at her, waggled his eyebrows and mumbled, "Sorry. Sorry. Jim Kane is sorry. S-O-R-R-R-R-Y. Sorry."

Jill, 45, came every day, driving from the couple's Rolling Meadows home. She had been here on his first day, when therapists strapped Jim to a tilt table and slowly acclimated his body to being upright again, after lying flat on his back for almost two months. She had been here on all the subsequent days as well, when Jim relearned how to sit up and hold his body straight.

Jill moved closer to the blue table, arms folded in front of her chest, head angled to one side, pale face occasionally reddening with embarrassment when Jim's cries grew especially loud or profane.

"Every part of my f------ body is screaming," Jim hollered. "I'm going to scream!"

With help from physical therapy student Rebecca Mitchell, Roth hoisted Jim to his feet. His legs trembled, while he hollered obscenities. "Please! Too much! Too much!"

Roth and Mitchell tried to keep him on his feet. His legs quivered and buckled.

"Leave me alone!" Jim roared. "Stop it. Becky Jennings. Becky Jennings. Whatever you're doing, stop it. Do not go forward. Do not go backward." He would, throughout his stay at RIC, call Roth "Becky Jennings." That, Jill explained to Roth, was the name of a woman he'd worked with a decade ago, who also had blond hair.

He was in pain, but it wasn't ordinary pain. Much of Kane's pain was related to his brain, not to what anyone was doing to him. Called neuropathic pain and common to brain injury, it continues to mystify physicians. The touch of a feather could feel, to a brain-injured person, like the scrape of a knife. But that didn't mean the pain was imaginary.

"It's not pain coming from the outside -- it's coming from the inside," Senno said. Physicians believe the injured brain may be misinterpreting the messages it receives from the body. The culprit could be the thalamus, the part of the brain that serves as a relay station to distribute incoming information to the cerebral cortex, which may have been injured in Kane's accident.

Senno's task, and the task of 10th-floor colleagues Ahmed and Dr. Puliyodil A. Philip, was to find the right balance of medications to quell patients' pain without sedating them so much that they couldn't be alert and responsive in therapy.

Jim, who had sat back down again, pounded his forehead with a fist. Jill grabbed his fist to stop him.

"What do you want from me?" he said. "Please, it hurts so bad. How do we stop this, Jill? How do we get through this? Tell me. Tell me."

Jill looked at the top of her husband's big head.

What was going on in his brain? What did he think about? It haunted her sometimes, not knowing.

The week before, she had asked him: "Are you thinking about something, Jim, or is it just blank?"

"Blank," he replied. "Just blank."

Sarah.

When she said the name, Ahmed would sometimes pause, shake her head and then place her right hand flat against the breast pocket of her long white coat, near the spot where "Dr. Ghada Ahmed, M.D." was stitched in curly letters with turquoise thread -- the spot where her heart is.

"I care about all my patients," Ahmed said, "but Sarah -- Sarah is special." It was something about Sarah's perseverance, something about her resilience in light of the awful things that had happened to her. Sarah was small, frail, but so tough. She never gave up.

The snapshots on the bulletin board in Room 1010 at RIC -- taped up by Sarah Conrad's mother, Kathy Tabor, and Sarah's husband, Pete Conrad -- were vivid and captivating: Sarah at her March 15th wedding. Sarah with friends at Eastern Illinois University, where she met Pete. Sarah with Pete, clowning around their new townhome in Plainfield. Sarah with her friends. Sarah with her students at Oswego High School, where she taught English and coached volleyball and softball.

At approximately 1:20 p.m. on May 11, as Sarah and Pete drove to the home of Sarah's grandmother for a Mother's Day lunch, their car was hit on the driver's side by another vehicle that had run a stop sign, said Pete, who was in the passenger seat. "I heard her say, `Oh, God.'" And then, silence.

Pete suffered a broken collarbone, but Sarah -- beautiful, witty Sarah, who loved "The Sun Also Rises" and worshipped Chicago Cubs pitcher Kerry Wood -- was almost fatally injured, her pelvis crushed, the cells deep in her brain twisted and torn when her head lurched sideways.

Came, then, the usual litany for the family: the midnight vigils outside the intensive care unit, the promise-anything prayers, the conferences with a neurosurgeon who replied, "We just don't know," to almost every question.

"They didn't think she'd wake up from the coma," said Pete. But she did; and then, each time doctors were pessimistic -- she'd never walk, never talk -- Sarah would prove them wrong, until finally she made it to RIC's 10th floor in late July, medically stable enough to begin rehabilitation.

Up and down the corridor Sarah would go, held steady by physical therapist Jenny Moore, who kept a hand around her waist for safety. Sarah lurched forward. Her legs were stiff and awkward, her walk herky-jerky but determined.

Sarah didn't talk much. When she did, the words came out in a reedy, painful-sounding whisper, for reasons that puzzled physicians and speech therapists. It was, they theorized, a combination of the physiological -- her larynx was damaged in the accident -- and the neurological. Her brain, that is, was still trying to remember how to interact with her thoughts and turn them into speech, into the easy glide of conversation that sounds so smooth, so effortless, until an injury forces you to appreciate the complex brain functions required to do it.

Sarah's left hand still vexed her. It exhibited a common side effect of brain injury called spasticity -- an excess of muscle tone that renders limbs rigid and turns them inward. It is also common with spinal cord injury.

Spasticity has a physiological aspect -- the muscle seems to be frozen -- and a neurological one, too, because the brain, in effect, refuses to let go and allow the muscle to relax. Treatments include injections of Botox -- the same toxin used to banish wrinkles by blocking the release of tone-inducing chemicals in the nerve -- or Phenol, which dissolves the myelin sheath around the nerve in order to disengage it. Physicians also try remedies such as stretching and positioning the affected areas. A final resort is surgery, in which the tendons are cut or repositioned. Ahmed still was figuring out how best to help Sarah.

And Sarah, in turn, was helping Ahmed and the therapists devise treatments that would help future patients with brain injury.

"Just as we guide and teach patients, they teach us," said Kara Kerr, occupational therapist who works as a Brain Injury Program Specialist on the 10th floor. "From each person, we learn, `Hey, maybe that will work with someone else.' Here are all these people and from their unfortunate experience, you think, `Look what they can give.'"

In the snapshots on the bulletin board of Room 1008, John Sanders was the life of the party: He was flexing his pectoral muscles in a shirtless shot; hugging his two kids, John, 8, and Shay, 7; goofing around with his fiance, Cathy Welch. He had a killer grin and a sky's-the-limit future.

Now, however, the 28-year-old building products salesman was lying in bed, staring at the TV set that hung overhead. A winding scar crossed his lip and the bottom of his cheek; surgeons had sewn up the gash he'd received from skidding on the pavement after his motorcycle had spun out of control in downtown Chicago. He hadn't been wearing a helmet.

The scar and the broken elbow were the only physical signs of what the accident had done to him. The real injury, the important one, was invisible: It was inside his head. His brain had been thrashed about so violently that essential functions such as short-term memory were flattened by the storm.

John's mother, Elizabeth Katehos, was at RIC 24 hours a day. She slept in his room, on the little fold-out couch under the window. She'd been with John for six straight weeks, ever since the night of the accident. "I can't wait for you to see the real him," she would say to the therapists who worked with her son. "He'll make you laugh. That's his thing -- making people laugh."

At 9:30 in the morning, sunlight splayed into the corners of John's room. Speech therapist Brandi Seei held a small cup of apple juice and lifted a spoon so that John could see it. The gym was crowded today, so she had decided to work in his room.

Except for curt, unintelligible whispers, John had barely spoken since he regained consciousness after the accident.

"We're working on your swallowing," Seei told him. "You have a big test tomorrow and I want you to swallow quickly." The week before, John hadn't even opened his mouth; now he opened it, but when Seei inserted the spoon, he closed his teeth around it and wouldn't let go.

The barium swallow test would determine if John could return to solid foods. As he sipped a small bit of barium, an X-ray machine -- which records the barium's journey -- would make certain that liquids and food were going into his stomach and not his lungs. If they followed the latter path, they could cause pneumonia.

Right now, John was being fed with liquids through a tube in his stomach called a percutaneous endoscopic gastronomy (PEG) tube. John, like many brain-injury patients, had to re-learn how to swallow -- a necessity that often surprised both patients and family members.

Brain injury helped teach neuroscientists that even bodily functions long thought to be reflexes, such as swallowing, really aren't, said Dr. Jeri Logemann, professor of otolaryngology -- diseases of the ear, nose and throat -- and neurology at NU Medical School. Logemann, one of the world's foremost authorities on swallowing, said it is among the body's least-understood activities. "We all start by swallowing in utero," she added. "But when you have a brain injury, that can quite easily disrupt what seems to be automatic."

The culprit could be physical damage to the larynx during a violent injury or, as is the case with so many consequences of brain injury, the brain itself simply failing to tell the throat muscles what to do.

Brain-injury patients, Logemann says, "want to eat. But it isn't always obvious when you can't swallow." By eating before proper swallowing is relearned, "They may be bathing their lungs in food."

It was the realization that people with brain injuries must relearn swallowing, Logemann said, that gave researchers clues about what a complex, exacting task swallowing is.

Therapists such as Seei use techniques pioneered by Logemann to teach patients how to swallow safely: tucking their chins, taking small sips, starting with thick liquids to force a slow, careful swallow rather than a dangerous gulp.

Seei said, "OK, John, here's a big one. You are doing so awesome. Open you mouth wide." She offered him another spoonful of juice. This time, he took a bit of the liquid in his mouth, held it there, then swallowed. Seei set down the cup and spoon.

"I want to work on yes and no," Seei said. "Show me your yes and your no." For yes, Seei stuck up her thumb, for no, she turned it downward.

John didn't respond.

His mother, clearly exasperated, moved to his bedside. "You have to participate if you want to get better, son." When John ignored her, her voice roughened. "You need to get better. You need to get better for John and Shay. They need you. They need their dad."

John looked at her. He didn't respond.

Nick. Quiet Nick.

While Jim Kane often raged and cursed, Nick Contri was more likely to gaze silently into the middle distance. He would reply to a direct question, but he wouldn't initiate conversation. It was almost as if he hadn't yet decided how much to participate in his own life.

That was hard on Susan Contri, his wife, a feisty, outspoken woman who cherished Nick and who fiercely missed their life before the accident. "Oh, we just had the best time," she said, eyes suddenly glistening with tears at all the memories, the ones that lie in wait for her whenever she lets down her guard. Memories of laughing, talking, going out to eat. Simple stuff. Ordinary times. Now, unfathomably distant times.

The lack of will was a frequent aspect of the personalities of people with brain injury, said Dr. Eric Larson, neuropsychologist for the 10th-floor unit. "They may have a hard time initiating any sort of behavior. They may be shut down and have nothing to say anymore."

Yet few facilities for brain injury rehabilitation include a psychiatric component, Larson said. The notion of overlap between brain injury and psychiatric problems is relatively new. Much of it is being pioneered at RIC, where Larson and Senno recently collaborated on a research study about how depression was manifested in different levels of traumatic brain injury: mild, moderate and severe.

Because depression and brain injury share many of the same symptoms -- such as lethargy and sleep and appetite problems -- researchers still are trying to untangle the separate strands in order to find the best treatment for each.

"With patients, you can't just assume they are depressed because they have a brain injury," Larson said. "But you also have to recognize that if they are depressed, they might not be able to tell you [because of the injury]. It's important to avoid a simplistic model."

Some observers, after all, would say that a person with a brain injury ought to be depressed. Who wouldn't be, given the pain and confusion that accompany brain injury? Given all that was lost?

Susan certainly felt she'd lost a lot. She and Nick had met when both were middle-age, both divorced, and somehow that made the relationship all the sweeter: They knew what a so-so marriage felt like and thus could savor a great one. Nick had a grown daughter, Chris, and Susan had three adult children of her own, and -- by some casual miracle -- everybody got along, and life was sweet. Just daily, ordinary life.

And then on June 18, as rain swept across northern Indiana, Nick slipped off a ladder just as he was finishing his workday. Susan got the call from the wife of his co-worker, who had found him at the foot of the ladder, unconscious and bleeding from his head. He had suffered a subdural hematoma, which means the veins along the surface of his brain were yanked and torn.

Each day, therapists tried to bring Nick back to the world, rehearsing activities he had once been able to accomplish without a second thought -- but which now required the most intense focus he would ever be called upon to muster.

Occupational therapist Maria Frantik dumped a box of small cardboard circles on the table in Nick's room. Each circle was painted to resemble a coin -- penny, nickel, dime, quarter.

Nick's wheelchair was pulled up alongside the table. He looked impassively at the pile.

Frantik pointed to a piece.

"Which coin is this?"

Nick shook his head. "I'm lost."

"Is it a quarter or a dime?"

"It's not a quarter or a dime."

"Actually, Nick, it's a quarter."

"No."

Frantik pointed to another piece. "Can you tell me what this one is?"

"It could be anything."

"It could be anything, but it's a dime. Do you how much a dime is worth?"

Nick hesitated. "I could say 10 cents, but I'd be wrong."

"Nick, actually, that's right."

Later, after Frantik had swept the cardboard coins into a box and departed, Nick shook his head. "If I could just get them to keep their little fingers out of my brain," he said, "I'd be doing great."

The skinny 18-year-old who shuffled along the corridors had a wide-eyed, vacant, almost ghostly expression on his face. His hands dangled at his sides.

This was who his father, Tim Welch, called "the new Patrick." Then Tim would add, "We're still trying, I guess, to hold on to the old Patrick."

The old Patrick was lively and smart and fun, brimming with plans and ambitions, always trailing a gaggle of friends. He played soccer and fooled around on his computer and wooed girlfriends.

He wasn't sure if he'd be staying in Streator, Ill., the small town where his parents and most of his relatives lived, after he graduated from college. He had things he wanted to do, places to go. He was a young man on the move.

On July 8, as Patrick walked out of a classroom building at Illinois Valley Community College in Oglesby, Ill., he was stabbed by a bolt of lightning, which stopped his heart. By the time emergency personnel found and revived him, his lips had turned blue. His brain had been robbed of oxygen for crucial minutes, causing what physicians call an anoxic brain injury.

When he arrived on the 10th floor, Patrick couldn't speak or sit up or even turn over in bed. But with daily therapies, his mother, Lori, had seen dramatic changes. His brain seemed to be relearning its relationship with his body.

Much slower to come around was his short-term memory: The ability to remember things from one moment to the next. Therapists were teaching Patrick strategies to deal with his memory problems, to compensate for the brain cells lost when starved of oxygen. If he needed to remember a word, they explained, he could associate the word with a visual image. Perhaps the two forms of knowledge -- verbal and pictorial -- would be more powerful than either one alone.

Through the memory travails of people with anoxic brain injuries such as Patrick, researchers have learned a great deal about how the brain creates and stores short-term and long-term memories.

The hippocampus, the brain structure responsible for memories of simple, recently-learned facts, such as where a person is at present or where he was just a few minutes ago, is also the structure most sensitive to oxygen deprivation.

Questions, endless questions: That, too, was the new Patrick.

Every moment was a new experience for him. It was as if he'd been lifted out of time, with all the context of his life cut away, and he had to constantly reinvent himself. So the questions came.

And came.

"Where am I?" Patrick would ask.

"You're in Chicago," Lori replied. "At a hospital."

"I am?"

"Yes."

She waited, then asked, "Patrick, where are you?"

"Where am I?" he repeated.

"Where are you? Are you at a hospital?"

"I don't know. At a hospital?"

"Yes, Patrick," Lori said. "You're at a hospital. In Chicago."

"In Chicago?"

"Yes."

"Awesome."

The key to treating brain injury, many researchers believe, is that there is no key. Just as every person is different, just as every brain injury is different, the strategy for rehabilitation had to be crafted one-on-one.

A factor such as the age or gender or nutritional status of the patient might be as crucial a variable as the type and location of the brain injury, said Dr. Donald G. Stein, neurology professor at Emory University of School of Medicine and author of "Brain Repair" (1997). He predicted that brain-injury medicine would one day involve "cocktails" -- specific, unique drug combinations created for each person.

On the 10th floor of RIC, the most promising research included the pioneering work of Dr. Theresa Louise-Bender Pape, developer of a way to measure brain function in unconscious people. Pape, who has joint research appointments at the Edward Hines Jr. Hospital, a Department of Veterans Affairs facility in Hines, as well as the Marianjoy Rehabilitation Hospital in Wheaton and Northwestern University Medical School, created a test called DOCS -- disorders of consciousness scale -- that, through patients' reactions to tactile and auditory stimulation, enables her to codify changes in neurological awareness even among people in comas or minimally conscious states. That information, in turn, tips off Senno and his colleagues as to which drugs and therapies seem to be working.

Dr. Claudio Perino, a physician based in Torino, Italy, who serves as president of the International Brain Injury Association, said rehabilitation from brain injury, unlike emergency care, still is in flux.

"Only for the acute and surgical phase have firm guidelines of intervention been established," he said. Yet an emerging consensus among researchers is "the necessity to use a personalized, individual approach to each subject."

For families, though, the effects of brain injury may have a depressing sameness, said RIC's Larson. The person they knew so well has vanished.

"Families consistently report that the thing they find most disturbing is the personality change," he said. "They can adapt to physical or even cognitive impairment -- but the personality change, they can't."

As their time on the 10th floor drew to a close, the new Jim, the new Sarah, the new John and Nick and Patrick prepared for the most daunting challenge of all: tomorrow.

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FRIDAY: On the threshold of new lives -- and a new day for neuroscience.

To read Part One of this series, go to: chicagotribune.com/brain

Copyright (c) 2003, Chicago Tribune

Part Three

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Into the unknown
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Brain injury patients and their families face uncertain futures.

And neuroscience forges ahead.

By Julia Keller
Tribune staff reporter

December 19, 2003

There was a story he loved to hear. Sometimes it was the only way to settle him down, telling that story. When Jim Kane was so agitated that he looked as if he might vibrate right out of his wheelchair, his wife would tell him the story.

Jill Kane had told it almost every day of his six-week stay at the Rehabilitation Institute of Chicago. She told him the story again on his final day, as Jim, like researchers into brain injury medicine, headed down an uncharted road.

"Do you remember, Jim, when you worked at the racetrack?" she said. "You were 18 years old, and your job was to take care of two horses. Mr. Brown and Scotch Run. You'd walk them around and around, and Mr. Brown -- do you remember this, Jim? Mr. Brown loved Snickers bars." She laughed. "A horse who loved Snickers bars! Isn't that funny, Jim? And you took care of them."

He nodded and listened, his big shoulders settling back in his wheelchair. Whatever else was going on in his brain -- a brain catastrophically injured June 23, when his Honda Gold Wing motorcycle crashed into a concrete barricade along Interstate 290 -- there was still a part of him that loved this memory, this picture of horses and sunshine and blue sky at Arlington Park Racetrack.

Was he remembering, or just remembering the memory of the memory? And did he know he'd heard the story dozens of times before?

Jill wasn't sure. Neither were the physicians and therapists on the 10th floor of RIC, site of the Brain Injury Medicine and Rehabilitation Unit, a renowned and innovative center for people who have suffered brain traumas.

So much is still unknown about brain injury. So many mysteries. Although brain injury is the No. 1 cause of death and disability for people under 44, striking at least 1.5 million Americans annually, research into injured brains is still unfolding. The brain remains a locked vault in many ways, especially when crushed by terrible blows.

At places such as RIC, however, physicians such as Dr. Ricardo G. Senno, the unit's medical director, are learning from the plight of Jim Kane and others like him. Scientists are edging toward a more complete understanding of consciousness and unconsciousness, of the brain's ability to reconstitute itself after injury, of the crucial role the brain's chemical and electrical connections play in emotion and personality.

Dr. Mark Hallett, chief of medical neurology at the National Institutes of Health in Bethesda, Md., said, "Certainly the basic idea used to be that the brain was very complicated. It was hard to put it together and once together, it couldn't be rewired or reorganized."

Yet research into the rehabilitation of people with brain injury, including stroke -- the blockage or rupture of arteries in the brain -- has revolutionized scientists' ideas about the brain. "The amount of information pouring in is just enormous," Hallett said. "The notion of creating new neurons by implanting them is actively being investigated. But even more promising in the short term is plasticity" -- the brain's ability to repair itself after injury by creating new strategies to handle familiar functions such as walking, talking, swallowing and remembering.

Kane, 48, sat in his wheelchair in Room 1046. Behind him, his wife was getting ready for their departure from RIC, opening cabinets one by one, checking for his belongings.

Jill, 45, had driven here every day from their Rolling Meadows home to watch his physical, speech and occupational therapies. Like most of the patients in the 20-room unit, Jim had come here after about two months in an acute-care hospital, where he was medically stabilized after his skull fracture and massive bleeding deep in his brain.

He had made progress. While he was still loud and unruly in many therapy sessions, Jim could now do what he couldn't do when he first arrived: stand up and walk. It required two physical therapists to assist him, but he could do it.

Just the day before, he had lurched and wobbled 120 feet down the hall, all the while screaming, "Stop! Stop! I can't do it! Jesus, Mary and Joseph, stop -- I can't do this!"

The average stay at RIC is 26 days. Barely a month, during which time people with brain injury had to relearn, in many cases, how to walk, swallow, dress and groom themselves, and grapple with memory loss. How to deal with family members and friends after an injury that may have irrevocably changed their personalities, the very center of their souls.

The people who had come to the 10th floor at roughly the same time as Kane -- Sarah Conrad, 24; Nick , 52; John Sanders, 28; and Patrick Welch, 18 -- already had concluded their stays here. They were already home, traveling to outpatient rehabilitation centers at least three days a week to continue their work.

Conrad, a high school English teacher, had been hit broadside by another car while she and her husband, Pete, drove to her grandmother's house for a Mother's Day celebration. Contri, a heating and air conditioning technician, tumbled off a ladder as he climbed down from a roof. Sanders, who sold building products, was thrown off his motorcycle during a late-night ride in downtown Chicago. And Welch, a recent high school graduate, was struck by lightning as he stepped out of a college summer-school class in Oglesby, Ill.

Different people. Different tragedies. But the same challenge: to somehow re-inhabit themselves.

Not to be the people they had been -- that was impossible -- but to become the people they would be next. People with brain injuries were "reborn," according to Dr. Ghada Ahmed, attending physician on the 10th floor. When you saw what happened here, the slowly momentous transformations, a renaissance by inches, her observation did not seem at all hyperbolic.

Two weeks before Jim Kane left RIC, Patrick Welch faced his last day. His parents, Tim and Lori Welch, would drive him back to their home in Streator, Ill., some 77 miles southwest of Chicago. While he was here, Patrick had learned how to sit up, how to walk, how to hold a knife and fork -- all things he couldn't do anymore after the lightning bolt tore through his body, stopping his heart and canceling the oxygen supply to his brain for critical minutes.

The week before he left, Patrick, accompanied by occupational therapist Marc Fischer, had found his way from RIC to the Niketown store on Michigan Avenue, then to the post office and back to the hospital. He presented his mother with 200 stamps he had purchased.

It didn't sound like much -- a smattering of city blocks, a few left and right turns, a sheet of stamps -- but for Patrick, it was remarkable.

Now, though, Patrick's stay here was over. Like more than 80 percent of RIC's patients, he was going home, rather than to another facility, and would keep up with his therapies at an outpatient rehabilitation center.

Patrick's 22-year-old sister, Lana, had driven up from Streator that morning to help her parents pack. They had to take down the get-well cards that blanketed a wall of his room. And they had to pull down the homemade banners, crafted out of construction-paper letters of red and blue and green: THE LORD IS MY STRENGTH AND MY SHIELD and COMMIT YOUR WAY TO THE LORD. They also had to keep an eye on Patrick, because he was up and down and all over the place, restless and fidgety, his wide eyes blinking rapidly.

"Where am I?" he asked his mother, Lori, a question he asked every day, all day long.

"Where do you think you are?"

"I don't know."

"It starts with an `R,'" Lori said, as she folded and stacked a freshly laundered batch of Patrick's T-shirts.

"R," he said.

"Ree -- , "

"Ree -- , " he repeated.

"Rehab."

"Rehab."

`Rehabilitation Institute of Chicago," she said.

Patrick repeated it, although some of the syllables seemed to get stuck in his mouth. It was a lot for him to say, all in one phrase.

At the small round table in a corner of the room, his father, Tim, was looking over a sheet of paper. Tim, a control systems technician for Com Ed, was an organized, methodical man. The paper was one of his ways of dealing with the problem, the problem of keeping Patrick safe in a world that might not understand him. Tim planned to offer copies to friends, family members and anybody else who met Patrick.

The sheet was divided into two columns: One was headed "Deficits" and the other, "How You Can Help." On the line "Short-term memory," Tim had typed, "Answer questions in simple form, i.e., yes and no." For "Walks into the street without looking," he suggested, "Needs supervision."

The family, finished with the packing, began taking loads down to the car, always leaving at least one person with Patrick. Then there was a final walk down the hall to say goodbye to therapists in the gym.

This was the place where Patrick had spent so many hours bending and stretching and finding his balance again, and many hours, too, working with speech therapists on tasks such as reading and understanding pictures and remembering sets of words or numbers just a few minutes after he heard them.

His mother knew these halls, too. Lori had walked through them with Patrick night after night, when her son couldn't sleep. Up and down they would go, then up and down again. One night while they were walking, Patrick had turned to her and said, "I died, didn't I?"

"No, Patrick. You didn't die."

"I died," he insisted.

"No."

"I'm dead."

And he would say it again sometimes, would suddenly announce that he had died. His mother would patiently talk him out of it.

The car was packed and ready, the RIC staff had signed the required paperwork and then, with every detail presumably concluded, every loose end tied, just as the Welches reached the glass double-doors that led to the elevators, Patrick shuffled away.

Mystified, his parents and sister followed him down the hall. He stopped in Room 1046, where Jim Kane sat impassively in his wheelchair.

Patrick leaned over and stuck out his hand. "Good luck."

"Good luck," Kane replied.

"I'll pray for you," Patrick said.

The day after Patrick left, it was Nick Contri's turn.

Nick was restless. He had been ready for hours this morning, but these things take time. His wife, Susan, had paperwork to fill out before he was officially discharged. There always seemed to be more paperwork. Always.

Susan and Nick's daughter, Chris, had gathered his things in Room 1050 and piled them up in his wheelchair. Nick didn't want to use the wheelchair; he'd be walking out of RIC.

Nick was going back to the house in Griffith, Ind., that he shared with Susan. From there, he would be taken each weekday for outpatient therapy at CRS Rehabilitation Specialists in Munster, Ind. A few days earlier, as she was visiting the facility to arrange for Nick's sessions, Susan thought there was something familiar about the address.

She checked. Sure enough: The CRS building at 9200 Calumet Ave. was the building from which Nick had fallen June 18, landing on a concrete parking lot 25 feel below, which caused bleeding deep in his brain.

After emergency surgery, a drug-induced coma and six weeks of therapy at RIC, Nick could seem to be lucid for several minutes -- and then he'd do or say something that revealed just how far he was from who he had been. How far he still had to go to get home -- home to himself, that is.

Like the day he bit Kara Kozub, his speech therapist. She was asking him questions, gesturing, and Nick grabbed her hand and bit it. Kozub, following hospital rules, had to get a hepatitis shot.

Nick still had trouble finding the right words for what he was trying to say. In about a third of brain-injury cases, people exhibit what is called aphasia, caused by damage to specific areas of the brain that handle language formation and recognition.

So he would need round-the-clock monitoring. Susan, who worked full time as an office assistant in downtown Chicago, had already started interviewing candidates for various shifts.

How far Nick would progress, what he'd be able to do, was a mystery. All Susan knew was that she'd loved her life, the life they had, and now -- well, who knew?

The RIC staff helped, Susan thought, by being tough. By not letting her hope get out of hand. Dinh To, one of two social workers on the unit, listened to her talk one day about how thoughtful and kind Nick was, about what a wonderful husband and partner he was, about how he'd go out and pick up a last-minute item for dinner if she forgot it at the store. And did so happily, cheerfully.

Dinh To looked at Susan and said firmly, "It will never be the way it was. Never."

That kind of cruelty, she knew, was a kindness.

John Sanders had made his mother cry. He didn't do it on purpose, Elizabeth Katehos knew; he was just talking. Talking in that whispery way he talked now, so softly that she had to lean in close to hear him. A few sentences a day. That was all.

"How did you handle my death?" he asked her.

The question caused Elizabeth to weep most of the night. He hadn't died, he had lived, and even with severe brain injury, even with his silences and all the things he couldn't do anymore, even with what seemed to be an odd new personality, he was alive. He was her son and he was alive.

Elizabeth and John's fiance, Cathy, had both returned to work, so they couldn't stay all day with him anymore. They came evenings and weekends, and if they asked John where he thought he was, he would say, "In prison." That was a good sign; his restlessness and agitation, the fact that he didn't want to be in the hospital anymore, meant he was coming back, they believed.

Before the accident, John Sanders had just about everything a young man could want. A lucrative job selling building supplies; two young children, John and Shay, from a previous relationship; and Cathy. They'd met through mutual friends, although she fought hard against falling in love with him. He was such a smart aleck. Such a kidder.

Somehow, though, everything came together -- his kids, her 8-year-old daughter from a previous marriage, a house they had picked out in Wildwood, Ill. Her only qualm was his motorcycle riding. She had tried it once with him and hated it, absolutely loathed the danger and the speed. It was his passion. But it was her nightmare.

Now everything was on hold. The house, the marriage, everything. Their lives were reduced to Room 1008. John was supposed to go home in three days -- Saturday, Oct. 4 -- and "home" meant home to Grayslake with his mother and her husband, Alex, where there was space for the things he'd need and proximity to a good outpatient rehabilitation center.

His speech therapy that morning had not gone well. "He's just shut down," Elizabeth warned occupational therapist Fischer, who had just arrived in John's room for a session.

Fischer, a rangy, amiable man whose calmness in turn seemed to keep patients on an even keel, pulled up a chair next to John's bed. "What's wrong, John? Not feeling good today?"

No reply.

Fischer said, "John, we better get you up, OK? A guy your age shouldn't be in bed like this." To Elizabeth, Fischer said, "This is going to happen at home too." Meaning John might withdraw from them for no apparent reason, turning inward.

Elizabeth stood in front of her son, voice stern. "Listen to me, John. We've got to get better." He shook his head no. She said, "Yes. Yes, you do. I'm not going to let you give up. I'm not."

It wasn't a straight line. You wanted it to be, but it wasn't. Recovery from brain injury was slow and tedious and highly idiosyncratic. No one's injury was the same as anyone else's, and no one's rehabilitation was the same, either.

A straight line would've been nice. Just give me clear goals, standards to meet, and I'll do it, Sarah Conrad told her doctors in the short, halting sentences she was able to manage. But brain injury wasn't like that. It wasn't like getting ready for softball season, where, as she explained to the young women she coached at Oswego High School, if you worked hard enough, that you'd get where you wanted to be. If you pushed yourself, you'd succeed.

Brain injury almost seemed like the opposite. No one on the 10th floor worked harder than Sarah, no one had a better attitude or a higher pain threshold, but setbacks multiplied.

Her first departure date from RIC, Sept. 11, had to be postponed when physicians discovered a buildup of scar tissue from the surgery after her accident, which was obstructing her intestine. Sarah underwent another surgery at Northwestern Memorial Hospital, returning to RIC Oct. 5.

Her mother, Kathy Tabor, was there every day, especially after Pete had to go back to work at Hinsdale South High School, where he was a teaching assistant. Sarah worried that she'd have to start all over again at RIC, beginning therapies as if she'd never had them before, but no: Sarah was able to pick up close to where she had left off. Her mother wasn't surprised. That, she said, was Sarah: Give her a task, show her the mark, and she'd hit it.

Sarah would finally leave RIC Oct. 18. A week later, she was admitted to Loyola Hospital for surgery to implant a shunt in her brain to drain excess fluid.

Then at long last, she was back with Pete in their Plainfield home. On Oct. 27, she began daily excursions to an outpatient rehab center.

All he had wanted, Pete said, was to be able to hold his wife again at night. Just that. A simple thing. To sleep beside her and then to wake up that way in the morning.

That's all Pete asked for -- yet it took more than five months. Five months from the day they got in the car and headed for Sarah's grandmother's house. Five months between leaving the house that Sunday afternoon and coming home again.

There had been a slight detour.

Because physicians didn't believe there was much hope for the rehabilitation of people such as Kane or Sanders or Conrad, traditionally they spent little time and few resources on the problem, said Dr. Michael Pietrzak, executive director of the International Brain Injury Association. "But now," he declared, "the science is moving forward very fast."

Pietrzak sat in the lobby of a Stockholm hotel in late May, where he was attending the IBIA's fifth biennial meeting, a gathering of physicians, therapists, academics and researchers from 30 countries.

Amid the pastel edifices and cobblestone streets of this city by the sea, researchers at the four-day conference presented the latest findings in brain injury medicine and rehabilitation. Between formal sessions, many participants alluded to a new optimism in the air, a sense that science soon may have more to offer people with brain injury.

The conference was one of the major places where the long-term futures of Welch and Contri were being decided, where the ultimate fates of Kane and other people with brain injury hung in the balance. Researchers from places such as RIC came together to compare findings, to share insights and techniques, to test theories.

What happened here, that is, some 4,000 miles away from Contri's home in Griffith, Ind., might one day directly affect the life of the man with the gray mustache and the quietly bemused expression.

"At some point," Pietrzak said, "we'll be able to regenerate neurons [in humans]. Not in two or three years -- more like two or three decades. But that's within our lifetime. And that would have been laughable 10 or 15 years ago."

Researchers have known for more than a century how to transplant the healthy fetal brain tissue of animals such as rats into damaged areas of the brain. In the process known as neurogenesis, fetal tissue is grafted onto the damaged area and the new neurons effectively take over the functions of the non-functioning areas.

Dr. Claudio Perino, an Italian physician and president of the IBIA, believes that neurogenesis will be the next great leap forward in repairing the brain after injury. He acknowledged, though, that the use of stem cells currently is problematic in the United States, because of federally mandated restrictions arising from thorny ethical and religious questions. Stem cells are harvested from fetal tissue; that fact thrusts the process into the center of the abortion debate. And even if those issues are resolved, the knowledge required to transplant brain tissue in humans with brain injury still is years away.

The caution is understandable. Fetal tissue grafts have been employed in several countries, including the United States, with patients suffering from Parkinson's disease, but the results have been troubling. In 2001, an experiment to implant stem cells into the brains of people with Parkinson's was abruptly suspended when some 15 percent of the recipients displayed uncontrollable twitches and spasms. The lesson, researchers say, is that more experiments are needed with brain tissue transplantation with animals -- and that treating brain injury in humans remains astonishingly complex.

In the meantime, plasticity -- which Hallett, an NIH stroke researcher, defined as "the brain's continuous adaptation to its environment" -- is the new buzzword in neuroscience, one heard over and over at the Stockholm conference. "Plasticity can help in the repair process," Hallett said. "If you learn to do something new or different or even learn a new fact, it means something in your brain has changed."

For many years, he added, scientists believed that after early childhood, the brain was basically finished with its development. "Once put together, it couldn't be rewired or reorganized." Or adapt to changes such as injury. Now, however, "We're trying to apply the basic mechanisms of plasticity to people who have had strokes."

If Kane could no longer pull a T-shirt over his head, if Welch couldn't kick a soccer ball because the parts of the brain normally devoted to those tasks weren't responding, plasticity meant that another part of their brains would pick up the slack. The brain was a creative problem-solver. "Very likely, all parts of the brain are plastic, some parts more than others," Hallett said. "Every part is capable of undergoing change. There are many different cellular mechanisms of change."

Another promising new frontier, many researchers said, was pharmacology -- the use of drugs both to lessen brain injury in the trauma phase and to enhance rehabilitation. Physicians already knew that drugs such as Ritalin could help brain-injury patients focus better during their therapies. And anti-depressants such as Effexor and others seemed to reduce some forms of neuropathic pain.

Senno, who also attended the conference in Sweden, finds the possibility of replacing damaged brain cells with new ones exciting. But even if it were routinely applied in humans, neurogenesis would not put an RIC out of business. A new neuron would not hold the memories that existed in the person before her or his injury. The patient's family still would have to learn to deal with a new person with a new brain.

Senno's own hopes for the future of brain injury medicine rest in the development of brain injury markers. He is collaborating with physicians at Northwestern Memorial Hospital to pinpoint specific chemical and electrical changes in an injured brain, just as physicians now can identify enzymes that indicate a heart attack. Misdiagnosis and underdiagnosis are notorious problems with mild brain injury, he noted.

"Mild brain injury is hard to diagnose and easy to treat, while severe brain injury is easy to diagnose and hard to treat," Senno said.

Brain injury markers would not only identify people whose brain injury previously went undiagnosed -- the existence of certain chemical changes would indicate a brain injury had occurred -- but also enable therapists to tailor the rehabilitation to the type of brain injury, making it more efficient.

"We'll be able to capture a ton of people [with brain injury] who aren't being captured. We'll be able to say, `This is the injury and this is what's going to happen,'" Senno said.

He also longs for the day when medical school administrators and physicians in other fields will pay more heed to brain injury, a development bound to come, Senno believes, as advances in brain injury medicine continue at their swift pace.

Yet the distance between the "Eureka!" moments in research studies and the bleak reality of patients' lives remains vast, concedes Donald G. Stein, neurology professor at the Emory University School of Medicine and co-author of "Brain Repair" (1997). "The stuff [neuroscience] is often so esoteric that the rehab people can't figure out how to translate it into something to help patients. I detect [among neuroscientists] a certain devaluation of work that has direct clinical application. It's like, `Well, that's not pure and basic science.'"

People with brain injury are helping neuroscience, that is, but thus far neuroscience is not returning the favor as much as it should.

"A lot of the problem," Stein said, "is that everybody wants to learn the latest imaging method. The technology is so captivating that people get hooked on that and forget what question they're asking. Often there's not the slightest concern for anything that might have benefit for the patient.

"I'm the only person at Emory studying TBI [traumatic brain injury] and trying to fix it. And we're a major medical center."

Allan Bergman, too, struck a note of caution about advances in brain science, trumpeted in recent cover stories in Scientific American and Forbes.

While trauma surgeons have made impressive gains in saving the lives of severely brain-injured people such as Kane and Conrad, once the patient leaves the ER, "They fall off a cliff," said Bergman, president and chief executive officer of the Brain Injury Association of America, a non-profit advocacy group based in McLean, Va.

"Why," he added, "are we working so hard and spending so much money on saving people who used to die if we're not going to follow up?"

Rehabilitation from brain injury, Bergman believes, just doesn't grab public attention the way trauma medicine does. It isn't exciting. It isn't compelling. There are no sirens, no physicians racing through the halls yelling, "Stat!"

There is, instead, a painstaking and repetitious process of incremental change. There is, from people such as Kane and Contri, Welch and Sanders and Conrad, and the therapists who work with them, a quiet daily heroism.

The biggest shift in attitudes toward recovery from brain injury may be in the expectations. Previously, experts believed that people such as Sanders and Kane generally made gains for only about a year after injury. Then, allegedly, they reached a plateau. Now, however, researchers have demonstrated that people can continue to make gains for as long as five years post-injury and maybe longer.

But before those gains can occur, the brain injury must be diagnosed. David Mulholland, among others, believes that undiagnosed brain injury has disastrous consequences. Mulholland, an administrator at Landmark College in Putney, Vt., studied a group of college students with ADD (attention deficit disorder). Almost 20 percent of them, he reported, said they had suffered untreated brain injuries as children.

Other studies, he noted, claim that more than 80 percent of violent felons may have suffered undiagnosed brain injuries in their youth. A study in Seville, Spain, earlier this year identified a link between criminal behavior among juveniles and undiagnosed brain injuries. In 1988, a report by a psychiatrist at the New York University School of Medicine found that of 14 death row inmates -- all of whom had committed their crimes as juveniles -- all had suffered significant brain injuries in childhood for which they were never treated.

Mulholland, whose brain was injured in a car accident a decade ago, said his condition was only recently diagnosed. "Everybody was telling me I was OK, so I thought I was OK. If you're having memory loss, you don't remember that you're having memory loss."

For those with more severe, life-threatening brain injuries, this is a historic moment, said Mark Sherry.

Sherry, who suffered a severe traumatic brain injury in 1992 in his native Australia when he was struck by a hit-and-run driver, declared, "We are the first generation of people with brain injuries to have this experience and live," since new emergency room techniques mean that more people now survive serious brain trauma.

After his injury, Sherry earned a PhD at the University of Queensland and now holds a postdoctoral fellowship at the University of Illinois at Chicago, where he writes and teaches in the relatively new field of disability studies.

Asked what living with a brain injury feels like, Sherry hesitated. "A mixture of profound confusion, emotional pain and isolation," he finally said. "But we're here and we belong in the community."

Of the four others who had come to the 10th floor at roughly the same time as Jim Kane, he was the only one who wasn't going home. Ahmed and the rest of the RIC staff had decided that he needed more therapy, but not at the intense level provided by RIC. The plan was for him to stay at a skilled nursing facility, Alden Poplar Creek Rehabilitation & Health Care Center in Hoffman Estates, for several weeks and then go home with Jill.

As it turned out, Jim would remain there until Dec. 4, when he finally returned to their house in Rolling Meadows.

On the morning of Oct. 15, Jim's last day at RIC, Jill packed his extra T-shirts and sweat pants, his medications and get-well cards and all the rest of it.

She was weary and frightened and sometimes just plain mad: Why, she asked herself, had God saved her husband if he was going to be a depressed, ranting man stuck in a wheelchair? Why would God do that?

She wanted her old life back. She wanted to be fixing dinner in the kitchen while Jim fussed and puttered in the garage. She knew his recovery would be slow -- she had no false hopes -- but sometimes, she was just sick of it all.

She was afraid, at bottom, of drowning in bitterness and frustration. Of having lost the companionship of her life partner and gaining, in its place, a lifetime of anxiety about the angry stranger who looked a lot like her husband, Jim Kane.

Earlier that morning, Jill had told Jim they were leaving RIC. Because he seemed restless, she told him the story about the horses again, and then she and Warren Owens, a staff member, helped him into his wheelchair. The driver of the private ambulance, who would take Jim to the next facility, had just arrived.

In the driveway in front of RIC, the driver pushed Jim's wheelchair onto the small platform attached to the van, pressed a button, and the platform slowly rose. The driver slid Jim and his wheelchair into the van and secured it. Jim stared straight ahead.

Jill, who believed the RIC staff had done everything they could for her husband, climbed into the passenger seat. She would miss this place, miss its energy and optimism. Jim, she knew, wouldn't miss it because he wouldn't remember it.

- - -

Assessing recovery

During recovery, people with severe brain injury are rated on a 10-stage scale, based on their progress. Patients move through the scale at different rates and may never reach stage 10.

LEVEL 1

No response to voice, sound, light, touch or pain.

LEVEL 2

Slow response to pain and other external stimuli.

LEVEL 3

Direct reaction to specific types of stimuli and response to closely related people.

LEVEL 4

Aggressiveness, including dramatic mood swings.

LEVEL 5

Ability to converse, sustained attention for brief periods of time, but inability to learn new information.

LEVEL 6

Ability to consistently follow simple instructions and attend to highly familiar tasks, but unawareness of disabilities and safety risks.

LEVEL 7

Stronger ability to learn and a vague understanding of mental condition, yet inability to estimate consequences of decisions and unawareness of others' needs and feelings.

LEVEL 8

Ability to recall and integrate past and recent events, independently complete familiar tasks, yet still depressed and argumentative.

LEVEL 9

Aware of others' needs and feelings and consequences of decisions, yet irritable.

LEVEL 10

Social interaction is consistently appropriate and the patient is able to handle multiple tasks simultaneously, but periods of depression may continue.

Source: Brain Injury Association of America

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To read the first two parts of the series, go to: chicagotribune.com/brain

About this series

To report this story, Tribune reporter Julia Keller spent three months observing and interviewing patients and staff in the Brain Injury Medicine Unit at the Rehabilitation Institute of Chicago, and interviewed physicians and neuroscientists from around the world.

THE SERIES

Wednesday

PART 1

A MEDICAL MYSTERY

The anatomy of a brain injury.

Thursday

PART 2

PIONEERS

How patients' struggles push brain researchers to new discoveries.

PART 3

RENAISSANCE BY INCHES

Copyright (c) 2003, Chicago Tribune

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Burn My Clothes, Ma!

Saturday, December 27, 2003

A Cab Ride

Thursday, December 25, 2003

Umbrellas and Oranges

Wednesday, December 24, 2003

Once More With Feeling, Again.

Tuesday, December 23, 2003

Hooked on Joan

Sunday, December 21, 2003

Solstice Update

Saturday, December 20, 2003

Bartman, Bartman

Friday, December 19, 2003

Story on Rehab featuring Ms. S

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