Dr. Jack Kessler in his Streeterville lab
The surgeon called Dr. Jack Kessler IN the early evening of January 2, 2001. Kessler's 15-year-old daughter, Allison, had sailed over a ski jump in Connecticut and landed on her back.
As chair of neurology at Northwestern University, Kessler had seen dozens of cases just like this one; he knew which questions to ask and which answers to fear. The doctor told him that Allison had crushed her spinal cord, paralyzing her legs so that she might never walk again. "It hurt like a dagger," Kessler recalls. "And it never went away."
Immediately after hanging up the phone, Kessler and his wife, Marilyn, raced to catch the last flight from Chicago to Connecticut, where Allison attended prep school. Sitting on the plane close to midnight, Kessler wondered what, if anything, he could do. For the past 24 years, he'd been researching the neurological complications of diabetes. Now he vowed that once things settled down—if things settled down—he would retrain himself to work on treatments for spinal cord injuries using embryonic stem cells, the controversial research that many scientists believe will allow better treatment of diseases like cancer, Alzheimer's, and Parkinson's.
Since then, Kessler, now 60, and a team of devoted graduate students have been attempting to regenerate nerve cells in spinal tissue. He has also become an activist, testifying at congressional hearings about the divisive issue of stem cell research, speaking at universities, and offering private lectures. Now the collision of Kessler's personal and professional lives has inspired a new documentary, Terra Incognita, which premières January 15th on PBS.
Photograph: Anna Knott
Dr. Kessler's daughter, Allison, at Harvard University, where she joined the varsity crew team
Directed by the Evanston filmmaker Maria Finitzo for Chicago-based Kartemquin Films (Hoop Dreams), the 83-minute film chronicles Kessler's race to find a breakthrough. He rises for work at 4:30 a.m., works weekends, and rides an emotional roller coaster of laboratory successes and failures. "We really weren't interested in making a film that was going to polarize the issue any more than it already was," says Finitzo, who spent two years filming. "We were interested in a personal approach to the topic through his story and through Allison's story."
At a few points in the film, the camera focuses on the screen saver on Kessler's computer. It's a picture of Allison. "In the end, my research may not contribute to the cure at all," Kessler says. "But at least I'll know I tried."
Then there's his daughter: in the film, a happy, active college student, living a thousand miles from home at Harvard University. Her wheelchair doesn't prevent her from joining the crew team, working at a wildlife refuge, and throwing a dinner party (during which she toasts her mother, who is also a doctor, for teaching her to cook while drinking Champagne). Now 22, she is studying at the London School of Economics and Political Science. "I have to live my life," she says by phone. "I'm not sitting around and waiting for some sort of medical miracle to happen."
"My daughter has accepted this a lot better than I have," says Kessler, whose voice goes soft when he reflects on the accident. "She tells me, 'Dad, get over it.' She gets annoyed at me when I get upset. Time is more of an issue for me than it is for her; research takes a very long time."
Photograph: (Film still) Courtesy of Kartemquin Films
Kessler takes his argument for stem cell research on the road.
One reason for the delay, Kessler says, is politics. Not long after stem cells were first isolated in 1998, activists rallied in opposition, claiming that the research destroyed human embryos—and stirred up the same legal and moral issues that abortion does. In the documentary, a Catholic priest with a Ph.D. in neuroscience also argues against the research, which has been limited by President George W. Bush's restrictions on federal funding.
The film shows Kessler challenging the White House (whose position he calls "draconian") point by point and squeezing weekly public appearances into his jammed schedule. Each is a crash course on biology, as well as stem cell research and the motivation behind it. "I had always shied away from public appearances," Kessler says. "But then our president took a stance that, I think, was scientifically wrong. I had to become an advocate."
Finitzo, the director, says that before making the film she had doubts that Kessler would ever go on camera. "I figured he was way too busy," she says. But during their first meeting to discuss the project, she realized that the doctor saw the film as a chance to ramp up the advocacy to which he was already committed. He agreed, she says, but first his daughter had to give him the OK. And she did.
Photograph: (Film still) Courtesy of Kartemquin Films