“I said: ‘Well, there’s a light that’s moving, and I could actually trace it with my finger,’ ” the Duluth pastor recalled. “He said: ‘What you’re actually looking at is a woman walking on the sidewalk nine floors below.’
“That was such an amazing thing.”
Amazing for James, 53, whose world until recently was bathed in nothing but shades of gray.
On March 11, James became the first person in Minnesota to receive an Argus II Retinal Prosthesis System, commonly known as a bionic eye. The futuristic device, which combines dark glasses, a tiny camera, a video unit and an implant just below the skin, bypasses James’ eyes to send signals beyond the damaged level of his retina, said Duane Tsutsui. He’s the spokesman for Second Sight, the California-based company that makes the $144,000 device.
The Food and Drug Administration approved the device for individuals with retinitis pigmentosa (RP) — an inherited and progressive eye disease — and only when they have “bare light” or “no light” perception, Tsutsui said. That means that, at best, the individual can tell the difference between indoor and outdoor light but can’t perceive anything else.
James, who was diagnosed with RP at age 7, has been essentially sightless since about 30, he said. The bionic eye meant he could see again — although not in a way that most people might define seeing.
“The vision is very limited in comparison to what a sighted person sees,” James said. “What I’ve told people is it’s like looking at the night sky where you have millions of twinkly lights that almost look like chaos. What I’m in the process of now is learning how to identify the different constellations.”
James, a stocky man with sandy hair who jokes and laughs easily, sat in a stuffed chair in the cozy apartment he shares with his wife, Kimberly, in the main floor of Grandview Manor. Kimberly, a perky 52-year-old with long red-brown hair cut in bangs across her forehead, at first sat in a chair at right angles to her husband’s. Then, she moved to the floor closer to him and placed her left hand on his right hand.
The two have been married seven years and have known each other for just eight, meaning James has never seen Kimberly in the conventional sense.
“I don’t care if he sees me or not because he sees me more than anybody has ever seen me in my life,” Kimberly said, and then described how he would hold her hand, feeling each of her fingers in his, getting to know her touch.
James Kelm is pastor of True Hope Church of Duluth, which meets in Grandview Manor’s community room. Kimberly leads the women’s ministry at the church, which the Kelms founded four years ago.
Legally blind at 7
James grew up in Michigan, where his difficulty in reading numbers off a chalkboard first was interpreted as a learning disability, he said. When his parents took him to the University of Michigan at age 7, surprised doctors discovered he had RP. At the time, the condition was thought to be more rare than it actually is, James said, and was thought never to occur in children.
He was diagnosed as legally blind at 7, and probably had been legally blind since birth, James said. He could see the shapes of people, but could not make out details like their hair color. He could gaze at the night sky but not see individual stars.
“When I was a teenager I would tell people I could see just well enough to do stuff but not well enough to do it safely,” he said, breaking into a laugh. “I have a lot of scars to prove it.”
By 30, his “usable vision” was gone, he said. He uses a cane and for 13 years had a guide dog. From time to time, he would learn about a promising development for treating RP, but it always seemed to be years away from practical applications, James said.
About a year ago, James’ sister, who lives in the Twin Cities, called him to report something she had read about the bionic eye. He did some research, then contacted Second Sight. Soon after, he was called, and he learned that a team at the University of Minnesota Department of Ophthalmology was being trained for the procedure.
He fit the criteria for the operation, and the first procedure in the state was set.
‘Like an explosion’
The operating room was reserved for an entire day, but the surgery took 4½ hours, James said. He woke up, as usual, in darkness.
“And then the gentleman from the company said: ‘Are you ready to turn it on?’ ” James related. “And it literally almost felt like an explosion in the sense that all of the sudden my whole field of vision instantaneously became lights. It was almost like looking at a movie marquee.”
After his bionic eye was turned on, the first thing he saw, James said, was his wife standing and walking toward him.
Kimberly took up the story.
“It was amazing because when I married him I never thought he would ever see,” she said. “And when he actually pointed to me, literally my legs gave away, and I was hugging him, and I just fell right into his lap. And the tears started flowing.”
The Kelms continue to make trips to the Cities every other week for therapy as James learns to translate lights into objects and movement.
At one point, James tired and the therapist invited him to close his eyes.
“And I closed my eyes and said: Whoa!” he related. “Because my eyes aren’t involved. Whether my eyes are open or shut makes no difference.”
Now, while he’s giving his sermon on Sunday, he can tell if someone enters or leaves the room, James said.
The next step
Patients still are recognizing new things a year after they get the implant, Tsutsui said.
But it will never be like regular vision. Compared to the millions of rods and cones in the healthy retina that convert light rays into electrical impulses, the Argus II Retinal Prosthesis System has 60 electrodes, he said.
“It’s entirely artificial,” Tsutsui said. “It’s not color; it’s black and white. Your brain has to learn how to interpret the signals.”
But the brain has a remarkable ability to do that learning, Tsutsui said.
James Kelm said he’s happy to be part of the new technology, not only because of what it is doing for him but because it makes him a sort of guinea pig for expanding the technology in the future.
His experience shows that things can change unexpectedly for the better, James said.
“I’m 53 years old and, last year with one phone call, my whole life changed,” he said. “So it’s never a good time to give up.”
|Kimberly Kelm holds the hand of husband James Kelm as he talks about his blindness and the Argus II
Retinal Prosthesis System, which helps him perceive motion, lights and differences in contrast.
(Steve Kuchera | Forum News Service)