February 18, 2004.
Program Series: Innovation.
Episode Title: Human Body Shop.
Segment Title: Karen Grisdale, Visionary.
By Sharon Kay.
It's a chilly autumn afternoon in Duxbury, Massachusetts and Karen Grisdale is sitting at her kitchen table with her 16-year old daughter Felicia.
Felicia just arrived home from school. She's limping from a sore ankle, and Karen advises her to ice and elevate.
Like many mothers she is listening to her daughter recount details of her school day, preoccupied in the kitchen after her own busy day at work. But Karen is a bit more distracted than most mothers. She is fiddling with an Allen wrench in order to connect a mechanical device to her brain, while a film crew from Human Body Shop, the second installment of the new INNOVATION series, hovers around her to record this moment.
Karen has been blind for the past 27 years, but in February 2003, she became the thirteenth "guinea pig," as she calls herself, to undergo experimental surgery to implant an artificial vision system directly into her brain - specifically her visual cortex.
The film crew has followed Karen throughout her journey, and they are here this afternoon to wrap up their film.
But Karen's story in many ways is just beginning. "It's a sharp learning curve, like climbing Mt. Everest, and I'm still at sea level."
Karen Grisdale, age 55, lost her vision due to a condition called diabetic retinopathy. A diabetic since childhood, Karen began to lose her vision in her mid- twenties when her retinas suffered from numerous hemorrhages.
In the mid 1970s, with the hope of arresting the progressive disease, Karen participated in what would be her first experimental medical procedure - a retinal laser treatment study. Unfortunately, the procedure was not a success.
Soon she faced total blindness. "I'm an extreme optimist. When I lost my vision from the retinopathy, the anticipation was that this wasn't a total one hundred percent answer, but really the start of something..."
From the moment she heard about Artificial Vision for the Blind and the force behind the technology, Dr. William Dobelle, Karen was determined to be his next patient. She finally got her wish four years after her quest began.
On a warm day in January 2003, Karen, accompanied by her husband Todd, arrived in Lisbon, Portugal to begin the process of "seeing" without her eyes.
Nine months after a lengthy surgical procedure to implant electrodes in the visual cortex of her brain, and four months after programming and "mapping" the system that sends signals from a miniature video camera to a computer, and then into Karen's brain, she is practicing to "see."
But first she must hook up the device. She struggles to connect the cables to pedestals buried beneath her hair and skin.
Felicia leans forward to help. Together, mother and daughter navigate the complicated system that will allow Karen to "see," for one hour per day.
Felicia has never seen her mother use the system. Cautiously and skeptically, she assists.
The cables are finally connected and Karen puts on the "magic glasses," as she calls them. The glasses are fitted with the video camera.
As she powers up the portable computer and battery pack, attached to her waist with a thick Velcro strap, she turns to Felicia and says, "If something really bad happens, here's the switch to shut it off."
As soon as she stands to scan the kitchen, a wave of panic sets in. She feels faint and begins to sweat. "My head is vibrating," she says, and she's clearly afraid.
She powers down herself and the director helps her back in the chair. All eyes are on Karen, who realizes that she plugged the cables in to the wrong connectors-a risk that could lead to a seizure.
She is embarrassed by her mistake and she is nervous to proceed without confirming the proper configuration. She calls her husband at the office. Todd Grisdale has supported his wife through every stage of this procedure.
Her next attempt at connecting is a success. The room is silent as Karen stands and begins to scan. She moves her head back and forth slowly like a video camera scanning a room.
The artificial vision system is based on the concept that electrode stimulation causes a luminous effect in the visual cortex - points of light known as phosphenes. Through careful mapping of how individual patients see these pixels of light, Dobelle and his team can turn the view of Karen's kitchen from what may initially appear like the sky on a starry night to a series of outlines, contrasts, and defined objects - the best case scenario would be much like a fluid, chalk drawing on a black board.
Patients perceive pixels dramatically differently, and mapping is critical to the process. It involves careful training, often remapping, intense focus, and practice.
Karen is in the early stages of practice and in need of remapping from her initial session. "First I thought I would see a perfect matrix in front of me - outlines of people, pianos, whatever, but until I'm mapped correctly it's only phosphenes."
She walks around the kitchen. "I can see the edge of the table... Oh, I love the phosphenes, it's so sparkly, it's like a kid mesmerized by a sparkler."
Her daughter quietly moves next to a nearby Tiffany lamp, and Karen pauses. "I don't know what it is, but I see something."
"It's me!" says Felicia, a bit shocked. "Even seeing a shadow of me is good. She's never seen me before. It's weird."
After the excitement, Karen continues to scan. "There, I think that's a person." "It's a lamp," says the cameraman who is following her around the room. "Oh, okay, a lamp," she giggles.
After brain surgery, personally paying over a $100,000 fee for the procedure and expenses, and traveling to Portugal where Dobelle's operation is based because he cannot practice in the U.S. without FDA approval, Karen is now facing perhaps her greatest challenge - learning to navigate a complicated and imperfect system.
The film director wonders, "Was it worth it? Would you do it again?" But Karen doesn't even flinch. "Oh, yes. Don't forget, I'm the guinea pig. It's only going to get better."
Karen is now seated on the living room sofa, exhausted by walking and scanning with the heavy equipment. "Even if you have to mortgage your house following science and technology...as my daughter would say, 'Bring it on'."
But Felicia adds, "Technology can also screw you up."
Right before her surgery, Karen confesses, she had a moment of doubt, but she put it out of her mind. "Some people call it brave; some people call it stupidity."
Karen insists that risk has always been part of her makeup - it fuels her. She believes that she and Dr. Dobelle are after the same thing, and together they push the science forward. "I think our goals fuse - where he's so driven I'm so optimistic." Trying to put herself in Dobelle's shoes, she adds, "Once you see progress where there was none before, you want to see it to its Nth degree."
"I was always a very visual person. When I see things in my mind, I keep my past vision alive," Karen explains.
She recently dreamt about putting mascara on - one eyelash at a time. "I've never had anticipation of seeing 20/20 again. If I can get through the door without bumping into something, I'll be thrilled."
After one hour of using the system, it's time for Karen to power down. Her eyes are tired. The process of learning to "see" again is fatiguing.
Sharon Kay is the INNOVATION series Science Editor. She is also a freelance science writer and producer in New York City. Her work has appeared on public television, in the American Museum of Natural History, and in The Boston Globe.
From the Sparks of INNOVATION magazine.
Source URL: http://www.thirteen.org/pressroom/release.php?get=1086
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