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"I Was Trapped in My Own Body"

Henry Evans is exploring how robotics can make life easier for the severely disabled—like Henry himself.

Courtesy Georgia Institute of Technology

LEND A HAND: With the PR2's help, Henry shaved his own face for the first time in a decade.

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By Brian Eule

Atop long and winding Page Mill Road, where the miles turn over without fanfare, a driveway stretches, removed from Silicon Valley below. At its end, a house, and inside, Henry Evans lies in bed. It's where he spends between 18 and 24 hours of each day. Occasionally, he is taken to the bathroom or put in a wheelchair. A few times each week, he is placed outside by the garden. Most of the time, though, he is here, head propped up, the rest of his body motionless beneath the covers.

It's been like this for more than 11 years. Though Henry can turn his head and has limited use of one finger on his left hand, the rest of his body is paralyzed. And though he can let out a deep laugh and cry, he cannot speak. But Henry can feel everything—every itch he cannot scratch, every pain he cannot ease, and every pressure he cannot relieve.

Then there are his eyes. They smile and roll when he teases. They narrow and focus, connecting the distant world with the bright and passionate mind still fully functioning inside his head. They speak.

And for someone who is mute, Henry Evans has a very strong voice.

Nearly 3,000 miles away, a capacity crowd in Sidney Harman Hall in Washington, D.C., applauds as Henry, MBA '91, is introduced to give a TED talk. A robot rolls onto the stage. A monitor on top shows Henry, back in California. The audience grows quiet.

When Henry lost the ability to move most of his body and to speak, the disabled world gained a strong advocate, and those who study robotics got a tireless and passionate thinker. A few years into his new life, Henry recognized the potential of robots to level the playing field for severely disabled individuals. Like Henry, many people are dependent on caregivers for their "activities of daily living," as they are called: eating, showering, moving around, shaving, even scratching an itch. But robotics has the potential to help by serving as extensions or surrogates for body parts. Living with quadriplegia had given Henry a grasp of what ideas would actually be helpful in practice. So he began reaching out to others. He has become an idea generator and a test pilot, using robots to open drawers and even to shave. He has helped create and test user interfaces and programs, providing feedback for his collaborators at more than half a dozen universities and labs across the country.

There are a few ways in which Henry speaks. A wink of his left eye is a request to scratch an itch. Two blinks means "thank you." Rolling his eyes toward the ceiling means Henry is requesting the letter board.

The board is rectangular and translucent, with sets of letters in various places: ABC in the top left; DEF in the top middle; GHI in the top right. The whole alphabet is there, and as Henry's wife, Jane, holds up the board, she follows his eyes and calls out the letters he focuses on, spelling words as he goes. Often, she finishes them for him, much like an autocomplete feature.

"I, P, O—I posted—A, N—and—T, W—two people…," Henry begins telling me through Jane one evening, describing a note he posted to a website. With Jane's help, Henry's words come fast. But the real magic occurs when Jane puts the board down. She leans in, and Henry moves his eyes to where the letters would be, like a touch typist who has memorized the keyboard. Jane, too, has these memorized and reads as they go, spelling out his sentences.

Henry's story is as much about Jane as it is about him. "We are one person," Henry jokes. "We just can't decide if we are a boy or a girl."

Jane radiates warmth and positivity. She's quick to laugh, and Henry says she has greatly prolonged his life. The two grew close in high school and were married in their early 20s. "It was like magic," Jane says of their first dance. "I felt like I was home." Although she's more than a foot shorter than Henry, Jane manages to lift him out of the bed and into a wheelchair. She adjusts him to ease pressure, feeds him and helps him communicate. Sometimes, when they long for an embrace, she maneuvers his arms to wrap around her, squeezes him and feels the pressure of him leaning in.

There's another way Henry speaks, and particularly to the outside world. A small reflective circle dots his glasses, and a laptop sits in front of him, allowing him to type emails, post messages online and stay in touch with the people who work on robotics.

"I use a headtracker, which converts tiny head movements into cursor movements. Using an onscreen keyboard, I can type up to 15 wpm," he explains, using the abbreviation for words per minute. His emails read as if he had no disability, with the exception of a small signature at the bottom that, much like an apology for typos made via smartphone, asks the recipient to please pardon the message's brevity because it was typed with Henry's head.

"There are a lot of disadvantages to using email to talk, but it is better than being a complete vegetable," he noted on a blog. "Often people don't answer, but there is something about being able to ask that is better than the alternative."

And so Henry begins his TED talk. A speaking device reads what he has typed, and he controls a robot from the other side of the country with his headtracker. All of which seemed unimaginable 11 years ago, when Henry was inches from death.

In 2002, Henry's life was full. He was physically fit and a towering presence. The chief financial officer at a startup, he and Jane had four young children. Eight months earlier, they had bought their first house on a beautiful piece of land in Los Altos Hills. Henry, good with his hands, looked forward to renovating it. He was 40, and life was just beginning.

One August morning, despite a headache that had begun the night before, Henry was driving his children to school on the way to work. His vision narrowed and his speech began to slur. He focused on the road and dropped his children off, and then he turned around. Six miles back up the hill, Henry stumbled into the house. He braced against the walls and told Jane that he just wanted to lie down. She said they were going to the doctor. Henry had to crawl to get back to the car.

In the emergency room, Henry's right arm went limp. "I'm so scared," he told Jane. And then he fell into a coma.

Doctors initially thought Henry might have meningitis. It turned out that a birth defect had precipitated the stroke-like symptoms. The inner lining of his basilar artery had become detached and was blocking the blood flow. He was on life support, and when he finally emerged from the coma, he was unable to speak or move. Jane noticed he tracked her with his eyes.

"I soon realized they were all I could move," Henry writes. "My dad explained that I had no motor control, and I got it—I was trapped in my own body."

At first, Henry was unable to breathe on his own. He had a tracheostomy and a feeding tube, and he was on about 25 medications. Two blinks became "yes," and one, "no." He was barely alive, but his mind and his senses were perfectly intact.

"Minutes were hours, and hours were days," Henry writes. At the same time, his wife wasn't getting encouraging news. "They took Jane into a room full of doctors and told her that, in their professional opinion, I would never move and her best bet was to pump me full of antidepressants and stick me in an institution, and soon. Well, that was the wrong thing to say to Jane."

Four months later, Jane and Henry returned home. And though Henry had developed use of a finger and better control of his neck, he had a hard time thinking about living. For the next three years, Henry talked to Jane about helping him with suicide. Jane would try to get him laughing, saying that with his 6-foot-4-inch body, she could never pull it off. She also let him know she understood.

"I know how normal you are by asking me to do that," she would tell him. But she also told him something else.

"There is a reason God left you with your mind and you have life," Jane said. "Those are two incredible gifts that we take for granted every day. And the hardest thing you have to do is figure out why you're left here on Earth. It wasn't your time. Why? You have a purpose here."

It started with an idea. Henry envisioned a head-mounted laser pointer that he could use to activate electrical switches. He made a sketch on the computer and sent it to a friend who was mentoring a robotics team at Palo Alto High School. The students designed a working prototype called the LaserFinger, which later won a grant from MIT. Though it was yet to be used in Henry's daily life, it got him thinking.

A few years later, while watching CNN, Henry saw an interview with Georgia Tech professor Charlie Kemp. Kemp was discussing his collaboration with Willow Garage, a robotics research lab in Menlo Park, and its robot, the PR2. Henry fired off emails to Steve Cousins, PhD '97, at Willow and to Kemp. Thus began a long collaboration between Henry and Jane, Willow Garage and the Healthcare Robotics Lab at Georgia Tech to use robots to function as body parts for the severely disabled. Henry called it Robots for Humanity, describing his work as "using technology to extend our capabilities, fill in our weaknesses and let people perform at their best."

"From a distance, all humans are disabled," Henry notes. "As humans, we adapted to our environment through evolution. We developed sight and hearing and speech. Yet these adaptations are quite limited. We can't run faster than about 25 miles per hour. We can't fly. We can't stay underwater forever and we can't be in more than one place at the same time. All humans are limited by nature in many ways.

"Now, I may have lost a few of the natural adaptations which evolution afforded me, but I have adapted to these limitations, often in a way similar to how you have adapted to nature's limitations. For example, I use a wheelchair to increase my mobility. You use a bike. You use a keyboard and mouse, I use a headtracker and a clicker to operate a computer."

One of the first things Kemp and Cousins did with Henry and Jane was ask them to identify tasks that would be the most helpful for a robot to perform. Scratching and shaving ranked high on their lists.

"Henry provided a mock-up of an interface design that he thought would be a good system for him," says Kemp. "We used that as a basis. That was a great way to start."

Using his headtracker and a computer, Henry manipulated the PR2 to scratch an itch on his face. It was the first time he had been able to do so in 10 years. Shaving, they felt, would take a little more practice.

Thanks to software developed by Chad Jenkins, an associate professor of computer science at Brown University, Henry could operate the robot remotely on his own computer. So Kemp sat very still in his lab at Georgia Tech as a robot controlled by Henry in California moved closer to his face. In the robot's arm was an electric razor. Tight in the professor's hand, a small control with a red kill-switch button. Later that day, Kemp sent out an email to their collaborators.

"I suspect that a mobile manipulator being controlled from across the country to help someone shave is a first for robotics," Kemp wrote. "Long-distance teleoperation of mobile manipulators to make contact with a remotely located person's body (face!) is probably rare, too. I would be especially surprised if a person with quadriplegia has ever controlled a mobile manipulator from across the country to position a razor near a person's face."

The implications of the trial were significant. It provided further evidence that people with motor impairments could operate robots to perform physical labor from remote sites, perhaps for compensation. And, Kemp said, he could imagine people with impairments also helping one another remotely.

Not long after his practice run, Henry shaved his own face.

Occasionally, Henry plays soccer with Jenkins at Brown. After placing a soccer ball between two robots in the lab, Jenkins controls one while Henry controls the other from California.

Like other collaborators, Jenkins recognizes the value in having Henry test out his work.

"Every time, you learn something new," he says. "If you don't get robots out of the lab and into the world, you're usually working with assumptions that aren't true."

So, earlier this year, Jenkins and Henry decided to take the robot out into the world for that TED talk. Not only did Henry speak—both beside Jenkins on the stage and at home beside Jane—but he also demonstrated how he could fly a drone remotely, onstage.

The next time you see a disabled person, Henry told the crowd, remind yourself that you use assistive devices at least as often as they do. But that doesn't diminish you as a person. "Your disability doesn't make you any less of a person, and neither does mine," he said.

They got a standing ovation.

Brian Eule, '01, is the author of Match Day (St. Martin's Press) and a frequent contributor to Stanford.

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Comments (4)

  • Ms. Mary Colvin

    Very inspiring and important work. My sister Lynn Fielder ('Master's 88) and others who have become severely disabled could benefit significantly from Robotics for Humanity. We look forward to beta test opportunities and broader availability.

    Posted by Ms. Mary Colvin on Jun 4, 2014 6:19 PM

  • Mr. Om Kundu

    Thank you Henry and Jane Evans!
    Your journey will be a permanent source of inspiration on how grace/resilience/ingenuity can elevate us all to levels well beyond what our physical selves could ever fathom.

    Posted by Mr. Om Kundu on Jan 17, 2014 8:36 PM

  • Dr. Carlos Del Rio C

    Robots for Humanity is a beautiful example of how humans can make the impossible to excel in this "cosmic-trip". It combines: great creativity, inter-institutional team work, appropiate use of high tech and, above all interacting loving-care in the family.

    Posted by Dr. Carlos Del Rio C on Jan 29, 2014 7:22 AM

  • Professor Harold Kempen, Ret.

    What an amazing story! Well written with a superb subject [Henry].  I really like Robots for Humanity.

    Posted by Professor Harold Kempen, Ret. on Jan 30, 2014 12:13 AM


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