Terry Byland took the chair and smashed it. Again and again.
He had been completely blind for two weeks. His last coherent image of this planet had been an average sitcom on a television set calibrated to apocalyptic brightness.
And that day, he did something he’d done countless times: he took out the trash.
He was crossing the street when someone called his name. He turned around, hoping to respond, and suddenly found himself disoriented. Which way was he facing? Where was the house? Panic set in. Desperate for something familiar, he dropped to the ground in the middle of the road and crawled his way back like a wounded animal.
He found himself home alone, standing in his dining room. “All of a sudden the anger took over,” Byland said. “Luckily, it was an old dining room chair. I kept slamming it until I broke it apart.”
His wife found him several hours later, collapsed on the dining room floor amongst the wreckage. That was the low point.
Eleven years later, in 2004, Terry Byland learned about a new miracle surgery at the University of Southern California. It sounded like science fiction. Byland didn’t care.
Journey of a quarter century
Dr. Mark Humayun, professor of biomedical engineering, ophthalmology, and cell and neurobiology at the USC Viterbi School of Engineering and Keck School of Medicine of USC, knows a bit about science fiction.
In 1987 – the year that Terry Byland first learned he was going blind – the whole notion of an artificial retina, notes Humayun, “was considered completely science fiction.”
Said Humayun: “You couldn’t propose putting an eye-chip in the eye and having it attached to the delicate tissue of the retina and have it connect somehow to a camera. This was truly science fiction. I mean, every talk, every abstract I submitted, usually would get rejected . . . So this was very uphill sledding from the beginning and was for the next 10 years.”
Today, it’s very easy to see the last 25 years as an historical inevitability. Indeed, just last February 14, the FDA formally approved the Argus II, the world’s first commercially available artificial retina. Last September, “U.S. News and World Report” named Humayun among the top one percent of American ophthalmologists. And Second Sight Medical Products Inc., a spin off company birthed on Humayun and his colleagues’ inventions, and led by Robert Greenberg, Humayun’s former graduate student at Johns Hopkins, is the manufacturer of the Argus II technology. Today, Second Sight is on the forefront of restoring sight to 10 million people worldwide who have become blind, or nearly blind, as a result of retinitis pigmentosa and other retinal diseases.
But like any great adventure, it started with heartbreak and a problem.
Humayun wanted to be a neurosurgeon — “of course, everyone in medical school wants to be a brain surgeon.” But for all his talent and ambition as a young medical student, he had no shield for his grandmother against diabetic retinopathy.
Humayun’s grandmother had helped raise Mark as a toddler. She loved to read, loved movies and all the roses in her garden. Like Terry Byland, she was ill-equipped for when her world went dark.
“I vividly remember when my grandmother went blind,” Humayun said. “I remember in medical school taking her to one of the best hospitals, if not the best hospital, the Wilmer Eye Institute at Johns Hopkins Hospital. They looked at her eye condition and said they didn’t know what to do. I saw first hand this incredible need to be able to help patients with this blindness – seeing it with my grandmother. She just gave up on life.”
But what was the answer? How do you restore sight to the blind? Over the next three to four years, Humayun considered all the known possibilities: medications, lasers, even retinal transplants. Creating a bionic eye was hardly the default reaction. After all, Humayun wasn’t an engineer. But after seeing the cochlear implant, then in its infancy, he began to wonder: “Could we develop an engineering device and stimulate the retina?”
In 1994, Humayun received his Ph.D. in biomedical engineering. He was determined to find out.
“Can you see this?”
Failure was not a dish that Humayun tasted often. The son, grandson and nephew of doctors, near the top of his class at Duke University School of Medicine, even the very name Humayun means “fortunate” in Hindi.
The period from 1988 to 1992 were the wilderness years. Humayun essentially lived two lives: from 6:30 a.m. to 7 p.m. he was in the clinic, a practicing eye doctor; from 8 p.m. to 2 a.m. he was an engineer, groping for a tech response to the patients he saw every day. There was a four-month period of absolute impasse, working until 4 a.m. nearly every night.
And the idea of an artificial retina — an implantable device that could stimulate long dormant light sensing cells in the eye — was relegated to the basement of academia’s ivory tower. At one conference, Humayun recalls, a prominent doctor and world authority on the human eye, denounced him, saying, “There’s hundreds of millions of cells in the retina. How in the world do you expect to stimulate it with electrodes that are so big, that are nowhere near the size of a retina’s neurons?” A mass exodus of Humayun’s talk soon followed.
“If you’re ever giving a talk,” Humayun observed drily, “and you have the grand pooh-bah, the guy who literally wrote the textbook, walk out on you, you know you’ve arrived.”
Said Humayun, “What’s kept us going is really then you’d go out and you’d be sulking, and you’d tell your friends and they’d ask you, ‘What are you working on?’ And you tell them the project and they’d say ‘Wow! That’s amazing!’ So, really the story is that there were a lot of cheerleaders along the way.”
The turning point happened in late 1992. It came, courtesy of a 70-year-old retired snack bar operator from Hagerstown, Maryland named Harold Churchey.
Under local anesthesia, Humayun and his colleague, Dr. Eugene de Juan, inserted a single wire electrode through the white part of the eye, contacting Churchey’s right retina. For the first 20 minutes, Churchey couldn’t see anything. As Humayun adjusted the frequency of the electrode, they asked Churchey, “Can you see this?”
Finally, hesitantly, the answer was yes. A single spot of light.
“When the patient could see that electrode as a spot of light, that turned everything,” Humayun said. “That made me realize that we have to develop this – clearly the brain can receive the signal, and this electrical current is not spread everywhere in the eye, but can in fact be confined to a very small area, directly corresponding to where we put the electrodes – and it also convinced a lot of people outside that, even though this patient was blind for 50 years, that the brain can still work, can receive the input and the retina is not so damaged. So the whole concept of ‘if you don’t use it, you lose it,’ we overcame that in this test experiment.”
In 2002, Churchey, a man from a small farming community who sold candy at the Washington County courthouse, became the first human in the history of the world to receive a permanent artificial retina. For the first time in over 50 years, he could distinguish night from day. That day, 10 years after light first bloomed in Churchey’s eye, Humayun felt the tension in the operating room. Twenty people, mostly engineers, crowded around an operating table at the USC Eye Institute, as Humayun made that incision, knowing all the huge attendant risks, suturing a fingernail-sized package containing a computer chip to the outside of the eye wall, and attaching an even smaller microelectrode array directly to the surface of the retina.
There was pin-drop silence as Humayun stepped back. Looking at the device, resting perfectly on the retina — it was a beautiful view.
To this day, it remains arguably the happiest moment of his professional life.
Nearly two weeks later, Humayun and his colleagues sat in a dark room with Churchey. The swelling from the eight-hour surgery had begun to subside, and they activated the Argus I for the very first time. James Weiland, now a Viterbi associate professor of biomedical engineering, projected a large letter “L” onto the wall.
“Harold, what do you see?” asked the team members.
Churchey just shook his head. Nothing. “You could almost feel the air come out of the room,” remembers Dr. Robert Greenberg, founder and CEO of Second Sight. “Everybody said, ‘Aaahh! It didn’t work!’”
Then Churchey clarified: “All I see is a line that goes up and down and a line that goes across.”
“Harold, what is that?” several voices exclaimed.
“I don’t know,” Churchey said. “It just looks like an L.”
The Shape of Things to Come
There was a day back in 1993, when Terry Byland’s youngest son, Danny, was waiting in the living room. They were going for a walk, and Danny turned around and flashed a five-year-old’s chubby smile.
“Are you ready to go, Daddy?” asked Danny.
It was the last time Terry Byland ever saw his son. Three months later, Terry’s vision, like a tunnel collapsing in on itself, was gone. And in the photo library of his mind, that ridiculous grin, unrepentantly joyous in a way most adults can scarcely imagine, became the hieroglyphic of his now 6’4”, 220 pound teenager.
Forty-nine thousand miles of driving – nearly twice around the world – Terry Byland was all in on Mark Humayun’s vision. Twice a week for five years, Byland was driven from Riverside to the USC Eye Institute or the Second Sight facility in Sylmar. The truth is, in this story about engineers and doctors, nothing gets done without patients. Humayun, many times, has compared this whole enterprise to a “Moon shot”; if that’s so, he needed some Neil Armstrongs.
Said Greenberg, “(The patients) are truly pioneers. They are the ones that took the most risk. They literally put their eye on the line. These patients were all told, you might lose your eye. Thankfully, no one did. We didn’t know going in, if they would see anything. And if they did, we didn’t know how long it would last.”
Byland will probably never fly across the Sea of Tranquility, but he’s one of only 36 people in the history of the world to have a four millimeter by six millimeter “retinal implant” microelectrode array attached to the surface of the retina of the eye (six patients received Argus I implants and 30 patients received Argus II implants). He was the last to receive the Argus I series.
In 2006, Byland saw a silhouette of his son for the very first time in nearly 13 years. Danny was wearing a dark shirt and dark Levi jeans. After walking back and forth twice across his father’s field of vision, Danny stopped and said, “Can you see me, Dad? Can you tell if I’m walking or moving?”
“I see you,” Terry replied. “You’re standing still.” They both lost it.
Byland’s work with Humayun and Second Sight paved the way for the Argus II, a 60 electrode chip that offers increased resolution and easier surgical installation. One year later, in 2007, Kathy Blake, an Orange County resident who first learned that she was going blind as a single mom in the early seventies, became the first surgical pioneer of the latest device.
The truth is, the Argus II still doesn’t allow for any high level of detail. But for people living in darkness, magic isn’t exactly measured in megapixels.
Blake had always loved the Fourth of July. After all, it was the same week as her birthday. In the summer of 2009, nearly two years after her surgery, she saw fireworks.
She couldn’t see any of the colors. But she could see the bright flashes of light tear across the Portland sky. She could see the movement of the flashes falling to earth. She knew it really wasn’t “her vision” seeing these things — it was the cyber vision of a camera affixed to her Argus II glasses, an image decoded through a small processing unit at her waist, one that relayed that signal to the chip inside her eyeball, which sent neurons firing to her brain, interpreting that black and white image.
None of these things mattered much to Blake. For decades she had lost and lost and lost, at least in terms of sight. Now, at last, something had been restored.
“Can Never Be Destroyed . . .”
After 25 years, Mark Humayun was feeling nervous. Last September, he sat at a large U-shaped conference table in the nation’s capital, while a FDA panel deliberated on the fate of Argus II. Byland and Blake were also there, patients and advocates for the new device. Only Churchey, having died in 2007, was missing, the man who endured the initial, most arduous surgeries to advance the science. Even in death, he was not done giving to the cause: The gift of his eyes, among the first bionic eyes in history, had provided a wealth of data to Humayun’s researchers.
The panel was a mix: FDA members, doctors and researchers alike. After 25 years, it all came down to three important questions. Is this device safe? Does it have probable benefit? Does the benefit outweigh the risks?
Said Humayun, “I mean, this is it. If they say ‘well, go back’ or ‘do a 100 more patients’ or ‘follow them for seven more years,’ you can imagine what the effect of that would be. You’re sitting there. You hope that they see the good in it. You do want them to only approve something that’s safe that has a benefit that outweighs the risks.”
The 19-person panel voted unanimously in favor. And with that, at least in the Washington D.C. Hilton, science and fiction got a divorce. Humayun received custody of the former.
At press time, Second Sight is still ironing out the nuances of Medicare coverage for an estimated $100,000 device and attendant $15,000 surgery. The hope is to have the device available to American doctors and American patients by as early as this summer; this, of course, on the heels of Europe, where the device became commercially available in 2011 after a three-year, 30-participant international clinical trial.
For many, like Terry Byland, this is the moment they’ve been waiting for. Humayun has promised him that he will personally perform the surgery that will upgrade his eye with the Argus II. For a few select others like Blake, they eagerly await the next great iteration: Argus III and beyond.
There is an inscription written on one of the Seven Wonders of the Ancient World: “Sights seen in the mind’s eye can never be destroyed.”
Mark Humayun can’t ever forget the image of the operating room in 2002, standing behind a microscope, placing the very first permanent device in a human eye. Kathy Blake can’t forget the colors of the waves she loves so dearly or the way the canyon lands of Arizona dissolve into the rose-colored deserts of New Mexico on a long road trip. Terry Byland can’t forget the sights of his hometown of Orlando during his last farewell tour.
Sights seen in the mind’s eye may be fairly indestructible. The great hope of the Argus II is, at long last, they may no longer have to suffice.