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The Man with the Bionic Brain
And Other Victories Over Paralysis
By Jon Mukand
Chicago Review Press Incorporated Copyright © 2012 Jon Mukand
All rights reserved.
At the Gateway to the Brain
* * *
Matt, June 22, 2004
A drift on anesthesia, Matthew Nagle lay still in the neurosurgical intensive care unit of Rhode Island Hospital, his shaven scalp discolored by a brown antiseptic and covered by a white turban of gauze dressing. Plastic hoses connected the tube in his throat to the ventilator that hissed and puffed and hissed and puffed into his lungs.
While a high school senior in 1998, Matt had galloped across football fields, two hundred pounds of muscled energy charging at opponents; he set a record for unassisted tackles that was featured in the Boston Herald. Now twenty-three, he had a severed spinal cord, and his limbs were completely paralyzed. Swaddled in white hospital sheets and floating on a special bed to prevent bedsores, Matt had just had brain surgery as the first human volunteer for the BrainGate Neural Interface System. Sinuous green waves raced across the monitor as his heart, strong as ever, pumped out twenty liters of blood every minute. There had never been a question about Matt's heart while the BrainGate research team planned his surgery.
I touched Matt's upper shoulder, the only place other than his head and neck where he could still feel human contact. My hand appeared dark brown against his pale skin, which seemed bleached by the fluorescent lights of the hospital.
"Matt, how're you feeling?"
Slowly his eyelids opened, a trace of a smile on his face. Then his eyes closed again, the right faster than the left. I felt an infusion of relief; Matt had just winked at me. My grip loosened on the cold rails of his KinAir bed, and I smiled back at my young patient, who drifted away, back into postoperative sleep.
The pill-sized BrainGate implant was now on the surface of Matt's right brain (see figure 1.1 in the gallery). A hundred microelectrodes — each thinner than a hair and a millimeter long — sent fine wires to a titanium pedestal, about the diameter of a nickel, that protruded from Matt's head. When the skin healed, a fiber-optic cable would connect Matt to a computer that analyzed and stored his brain's electrical nerve signals.
If — and this was my clinical career's biggest if — the experiment succeeded, Matt would control a computer's cursor by only thinking about it, just as though he were moving a computer mouse with his paralyzed hand. That would remove a few links in the chains of his paralysis.
* * *
As a clinical investigator for the BrainGate study, I had discussed with Matt and his parents the many risks and potential benefits of the implant. Doctors, nurses, neuroscientists, and clinical engineers had planned every step and coordinated all the details, along with Cyberkinetics Neurotechnology Systems, Inc., the company formed by researchers at Brown University to develop the BrainGate. I remembered the research team's excitement as we worked on this revolutionary technology — but I also recalled moments of fear that our dreams for the BrainGate would end in disaster.
I told myself to calm down. Almost a decade of studies with monkeys had convinced the Food and Drug Administration (FDA) and three institutional review boards (IRBs) to approve a study of the first human BrainGate implant. Feeling less nervous, I reflected upon Matt's journey into disability and upon his yearning to overcome paralysis through the BrainGate, stem cell therapy, or any other technology.
A nurse dabbed Matt's face with a damp cloth. He was sweating in response to the stress of surgery.
"Please be careful near his nostrils," I said. "He's got MRSA; it's not that far from his nose to the incision."
The nurse looked taken aback, but it was clear she understood my fear that methicillin-resistant staphylococcus aureus — a variant of the benign bacterium we all harbor — might infect Matt's surgical wound. She moved the washcloth away and promised to pass on my concerns to the other nurses.
I left to find Matt's parents, Ellen and Pat Nagle, who were waiting downstairs. Standing near the elevator on the hospital's sixth floor, I stared out a large tinted window while familiar questions streamed into my brain with the sunlight. What did the BrainGate study mean for people with severe paralysis? Why had Matt subjected himself to this experiment, the first on a human being? Why had he, after having been paralyzed, undergone yet another metamorphosis — this one almost turning him into a cyborg? Why had his parents allowed him to do this? I also thought about my role in recruiting Matt for the study, which had many risks and only nebulous chances for success.
Led by John Donoghue, the chairman of Brown University's neurosciences department and a cofounder of Cyberkinetics, our research team had designed the study to answer the following questions:
1. Would the device be safe in human beings and not cause complications such as brain infections, bleeding, seizures, or any of the twenty-eight other adverse events listed on the informed consent form?
2. Would the implant record signals from single neurons, and do so reliably?
3. Could the BrainGate use these recordings to function as a neural prosthesis, like a bionic brain?
4. With the BrainGate, would a paralyzed patient be able to control a computer cursor through thoughts alone?
5. Finally, would the device allow advanced uses, such as controlling a television or opening e-mail? (The possibility of playing video games had also excited Matt, but this wasn't mentioned in the thick protocol submitted to the FDA.)
While training in rehabilitation medicine — also known as physical medicine and rehabilitation or physiatry — I had developed an interest in spinal cord rehabilitation. During and after my residency at Boston University, I treated many patients with spinal cord injuries due to car accidents, falls from buildings, dives into shallow pools, gunshots, ruptured aortic aneurysms, bicycle accidents, and stabbings. Each of these patients taught me about the complexities of this tragic condition that affects almost every bodily system. They taught me about kidney failure, surgical bowel complications, pneumonias that start out as colds, fevers from infections or from staying out in the sun too long, festering pressure ulcers, urinary infections that lead to septic shock and death, fractures in bones leached out by paralysis, and depression — which led one of my patients to use his car's hand controls to drive off the road and into nothingness.
What would Matt Nagle teach me?
Through the glass corridor, I saw a small maple tree in a cylindrical white planter, its dark red leaves twirling in the summer breeze, and I imagined its roots circling in search of new, nourishing soil that would allow the imprisoned tree to grow taller and wider in the sun and the wind. I stopped at the physicians' lounge to call my wife and give her a quick update. Giselle, also a physician, had some misgivings about the BrainGate project, but she supported my research activities. She was relieved to hear about Matt's surgery and passed on the news to our children, Nita and Jacob, who had seen me on TV in connection with the research and found the project fascinating.
At the café, two of my BrainGate colleagues were relaxing after the surgery. I briefly sat down at the marble-top table and raised my coffee cup in congratulations.
"Yes, the surgery was successful and the patient survived, but we'll have to wait and see about the BrainGate," Burke Barrett said. As vice president of clinical operations for Cyberkinetics, he was right to be cautious.
"I feel good about the implant," Dr. Gerhard Friehs said. Still wearing his green scrub suit, the lead neurosurgeon moved his head around to relieve the tension in his neck.
"How soon can we test the system?" Burke asked, and sipped his coffee.
"Matt's young," Gerhard said, "so he should heal fast. But the drainage has to settle down. I'll let you know."
I left Burke and Gerhard to go outside and greet Ellen and Pat Nagle, who had been at the hospital since dawn.
"He's fine," I said. I pulled up an outdoor metal chair and joined them on the brick patio under a tall, shady beech. "Matt's a tough guy; his heart and lungs are in great shape."
"You know, he was one hell of an athlete," Pat said, closing his right hand into a fist and shaking it for emphasis.
"He sure put on a great performance today," I said.
"He'll never quit," Pat said. "Let me tell you about when he made MVP."
Matt's final high school game was against Walpole, which had a running back who went on to play college ball. The winning team would go to the Massachusetts Super Bowl, so Matt had to win. On the defensive line, he kept getting blocked, but then he got through just before the handoff to the star running back. Matt had him in his sights until his opponent did a little shake, and Matt got faked out. The star went right by him. Matt was knocked down while his opponent, eighty yards from the end zone, was on his way to a touchdown.
Matt jumped up and ran, pumping his arms and legs like pistons, breathing fast and shallow to get just enough oxygen to keep his muscles burning. He shocked the running back at the five-yard line and pulled him down. The crowd went wild, the Weymouth fans rising up in the stands to clap and yell and scream at the heart-racing defensive play. Even a few of the Walpole fans clapped surreptitiously. The other team rushed for the remaining yards, scored, and eventually won, but Matt's play was the game's highlight. A reporter's photograph showed Matt's back with a blurred "21" on his jersey, his left hand clenched in a fist, and his right leg charging forward as he reached for the running back.
For their performances, Matt and his buddy, Mike Romig, won the Weymouth Football MVP award and a thousand dollars to put toward college. But a game like that deserved a celebration, so they spent their money on kegs and food for a party with their many friends.
The Nagles were silent after Pat finished his story and came back to the present. Ellen stared down at her coffee and quietly said, "But it all ended three years ago, Independence Day. It all ended...."
Until now, I had neither asked nor heard the details of what had happened to Matt on Wessagusset Beach in Weymouth. I brushed away a serrated leaf that had fluttered down onto the wrought-iron table.
"The thing that really gets me is that Mattie was hurt about three years ago, and I still can't talk about him without ..."
Pat wiped away some tears and smiled ruefully. He no longer had the toughness of a cop built like a linebacker, the homicide sergeant who had cracked one of the most infamous murder cases in Cambridge.
"It's just horrible, a nightmare that doesn't end. I always thought I was stronger than that, you know?"
Ellen placed her hand on her husband's muscular forearm.
Under the dense green foliage, the Nagles described how Matt was severed from his life as a fun-loving star athlete, stripped of his strength, and humiliated by his basic bodily functions. Because of his condition, Matt cheered on researchers who were racing to treat severe disability with brain implants, electric limbs, or stem cells. These technologies gave rise to teams that were striving to treat human spinal cord injuries. At stake were millions of dollars, scientific careers, and academic prestige. Brain implants compensated for paralysis via an end run around the damaged site, the static line of scrimmage. Limbs could be implanted with electrodes that sent electric currents to stimulate muscle movement. Stem cells healed the body from within, through natural mechanisms of repair.
And, although completely paralyzed and no longer on the football field, Matt was also racing. He was in a race against time, a race to get a computerized brain implant, an electrode system, stem cells, or any other technology that could cure his spinal cord injury — before he died from its many complications. Based on his clinical status, Matt could expect to live to forty-five. With paralysis, sensory loss, abnormal movements, bowel and bladder incontinence, pain, and sexual dysfunction, Matt was one of the most disabled people I had ever met. Over the years, I talked on many occasions with Matt and his parents — as well as relatives, friends, doctors, caregivers, priests, teachers, coaches, Cyberkinetics researchers, electrode-implant manufacturers, stem cell scientists, and journalists — to understand and describe his story and his dream to regain movement, any movement, anywhere in his body, through any means.CHAPTER 2
The Hunting Knife at the Beach Party
* * *
Matt, July 3 to 15, 2001
On July 3, 2001, Matt went to the Fourth of July celebration at Wessagusset Beach, a popular inlet with a seawall to protect the adjoining road and houses. He wanted to watch the fireworks, have a few beers, and catch up with old friends. Before the roads to the beach closed, Matt and his friends gathered at a nearby house. This was an ideal way to avoid traffic and the cops, who prowled the beach because, every year, a fight or a drug deal or a car accident would occur. By evening, about three hundred people had danced onto the beach anyway, carrying their six-packs and boom boxes. It had rained, but the clouds were drifting away. The sand was still warm from the day's sunshine, and Matt enjoyed a Coors Light as the sunset bled through the clouds floating across the ocean's calm horizon.
He sat in Katie Perette's white Jeep Cherokee, the top off and the doors open to blast out techno-pop with a hypnotic dance beat. Many years earlier, they had been hockey teammates, and Katie still reminded Matt about his time in the penalty box. Before going after a player on the opposing team, Matt would say, "Katie, this one's for you," and whack her goalie pads with his hockey stick before speeding off on his skates. Ifthey were behind, Matt would collect the team near the penalty box, hit the boards with his stick, and yell, "Let's go, let's go!"
Matt and Katie shared a beer; then he pulled her out of the Jeep for a dance. Blond and tanned, her long arms and midriff visible in a light summer shirt, her laughter harmonizing with the music, Katie looked really good without a padded hockey uniform. Why hadn't he seen this side of her until now? He had hung out and hooked up with so many girls, but he had always thought of Katie as just a friend — until now. He breathed a little faster, excited by the beer and the music, and said, "Hey, babe, let's go down to the beach for a walk."
"Get out of here, Matt. We're just buddies."
"Just you and me," Matt said, this time with an arm on her bare tanned shoulder. "Let's go down and watch the fireworks."
Katie knew Matt's penchant for intense but short relationships. She enjoyed his friendship and didn't want romantic complications, but she had second thoughts as she looked at his handsome face, framed with dark brown hair, and his body, athletic and graceful.
Before Katie had time to explain how fond she was of him, a fight broke out somewhere in the crowd and quickly turned into a brawl involving more than a hundred people. The Jeep's door was smashed in, a kid from Dorchester yelled for his boys, and someone shattered a beer bottle into a jagged weapon. A Weymouth kid ended up at the bottom of a pile and shouted, "Get Nagle!" because Matt always helped a buddy in a fight. Their friend Brian was bleeding from a stab wound underneath his eye, so Katie grabbed a towel to staunch the bleeding. She saw Matt dive into the pile of twisted bodies. He started pulling people off, just as he had done in his football days.
Then someone plunged an eight-inch hunting knife into the back of Matt's neck. The assailant ran away as Matt collapsed.
Katie saw Matt lying unconscious on top of a white picket fence, one leg extended and the other twisted backward. His hands twitched as if he were grasping for something. He was unresponsive to her cries. At first, she thought only a beer bottle had struck him, that it was only a gash. But when Brian lifted up Matt's neck, Katie saw that the white fence had a dark red stain and Matt's lips were a darker blue than his eyes. She screamed.
Excerpted from The Man with the Bionic Brain by Jon Mukand. Copyright © 2012 Jon Mukand. Excerpted by permission of Chicago Review Press Incorporated.
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