Trapped in a Great Brain

Macleans Magazine July 01, 2002

TRAPPED IN A GREAT BRAIN original article

Claire Minkley does calculus in her head. If only she could express her thoughts. People are trying to make that happen.

KEN MACQUEEN

If I could read your mind, love
What a tale your thoughts could tell

JOHN MINKLEY DOUBTS his 18-year-old daughter, Claire, has ever heard Gordon Lightfoot's classic song. Some day, he says, he must play it for her. Claire loves music, he knows this to be true. Claire loves complex and beautiful things: the elegant structure of mathematics, the delicious puzzle of the origin of the universe; of God's role in that, and of her place within it. Claire, in her way, has said these things. But there is so much more to tell, if only, somehow, he could read her mind. Many parents of an uncommunicative teen might wish the same. But John and his wife, Melinda, of the Victoria suburb of Oak Bay, B.C., along with an extended community of Vancouver Island scientists and academics known as the Claire Project, are actually working toward that goal. It is Claire, starting this fall at the nearby University of Victoria, who wants this miracle most of all.

Claire has a genetic condition -- "a deletion in one of her chromosomes," says John, a lawyer -- that caused a significant portion of her brain to develop unusually. Her condition resembles cerebral palsy. If she could stand, she'd be about four-foot-two. She weighs less than 55 pounds. Her muscles are spastic. To move an arm, to shift her head, even to control the movement of her eyes is a slow-motion act of extreme will. Claire is unable to speak. You could fill this magazine with the things she can't do, but that list would tell you nothing about her. "Your body is a prison," someone told her. "No," she replied, spelling her answer by the slow process of pointing to letters drawn on a board. "My body is what I have to work with."

What the Claire Project wants to achieve is simple enough to explain if difficult to achieve. A brain gives off measurable electrical signals. If Claire can be taught to control and vary the strength of her brainwave signals, these might be translated by computer into words on a screen or even a synthesized voice. Such technology already exists for those who, unlike Claire, have the dexterity to flick a switch or move their eyebrows or blow into a tube. The only part of Claire that is agile and supple and strong is her brain. It must be taught to speak.

To do so, the Minkleys enlisted the Uni-versity of Victoria Assistive Technology Team, a group of about 40 researchers, staff and volunteers who donate their expertise to developing devices for the disabled. A typical project is building a mechanism to allow a severely paralyzed woman to open and close her laptop, says Nigel Livingston, a professor of biology and director of the team. But the Claire Project has ballooned into a major research effort. Livingston, who also has a special needs daughter, dangled the challenge of "getting a broadcast from her brain" before volunteer Bill Hook, a semi-retired 72-year-old California aerospace engineer living on Vancouver Island. "Can a person using just a simple electrical signal generated by your brainwaves communicate with a computer?" asks Hook, who'd spent much of his career on the challenges of relaying signals through space. "Well that struck me as a communications problem so I became interested personally." Adding programming expertise are Jon Punnett and Bob Macdonald, members of the Minkleys' Anglican church and partners at Anthony Macauley Associates, a Victoria software company.

Claire's disability was apparent from birth, but since she never seemed to recognize her limitations, her parents have moved heaven and earth to clear obstacles in her way. Melinda, a B.C. government public servant, recalls reading picture books to Claire when she was about three, with the dawning realization that Claire was pointing to words, not pictures. By Grade 5, picture books were replaced by such weighty reads as A Brief History of Time, by Stephen Hawking. At the end of each chapter, she'd spell out comments to her dad. At the end of the book, she wrote the author a five-paragraph letter, spelled out at the painful rate of 15 words an hour. "I enjoyed reading your book," she told one of the world's great theoretical physicists, "but I don't agree with your theory of black holes." Hawking, whose mobility is seriously impaired by ALS (amyotrophic lateral sclerosis), thanked her for her "very perceptive" observations. "I understand you have similar difficulties in communicating, so I wondered if you might be helped by a computer system like mine," he wrote. "I enclose a description."

Claire does not have even the limited muscle control required to operate Hawking's communication system. Nor is it clear yet whether she will benefit from the Claire Project, though it seems likely others will. The problem in part comes from her difficulty generating and controlling the kind of periodic signals that can form the basis of a communications system. Her muscle spasms create so much electrical noise, it's hard to identify her brainwaves -- rather like static overwhelming a weak AM radio signal. "It's not been as successful with Claire as we'd hoped," says Livingston.

While work to help Claire continues, the research has expanded to include some stroke victims and four people who, like Hawking, have ALS. The usual course of ALS is a progressive loss of muscle control: arms, legs, voice box, fingers, eyebrows and finally eye movements. Hook says the ALS test subjects have generated the kind of periodic brain signals that should let them communicate as their condition deteriorates. There is potential, too, for others paralyzed by disease or spinal injury, says Hook. "An active mind being trapped in a useless body is a horrible thing." The research "looks very encouraging," he says, but the key to Claire's mind remains elusive.

The need for efficient communications took on new urgency when Claire earned admission to university, where she'll study physics and math this fall. She was an A-student at Oak Bay High School, attending every class with Manjit Bamra, her student assistant. It is Bamra who wheeled her to class, held her textbook, recorded the answers Claire pointed to on boards filled with letters or numbers and mathematical symbols, and helped find the student ways to demonstrate her knowledge. "Claire pretty much absorbed the information," Bamra says. "I just took the notes and checked with her to make sure she understood it." Claire completed her heavy Grade 12 course load over two years. The challenge is rarely in understanding the work, it is in sharing her knowledge, a difficulty that will only increase at university.

Still, she earned almost 100 per cent this year in advanced placement calculus. "It must be really difficult for her," says her teacher, James Bell. "So much needs to be done in her head." Imagine the frustration, he says. "Your mind's working. It's working better than most kids' minds, but you can't get that across very easily."

THERE'S A STEREO in Claire's bedroom, and a set of Russian nesting dolls. There is perfume and makeup and a few junky novels. There are books on astronomy, a Bible, the novel Contact, by Carl Sagan, about decoding the voices of distant galaxies. There are weighty tomes on the theories of cosmic origin. "I think understanding the origin of the universe is very essential to understanding God's creation," she informed Hawking as a precocious 11-year-old. This grand mystery of existence is a passion she'll pursue at university, as others puzzle over the enigma that is Claire.

She sits in her room on a perfect spring afternoon, trying to tune out the backyard sounds of her energetic nine-year-old sister Lucy and a friend at play. She is wearing an electrode-studded green cloth cap that is wired to a laptop computer. "Feel yourself moving into your meditation place," her father says in his patient, gentle voice. The brainwaves are tracked on the screen in various ways: in the jumping bars of a graph, in a rolling, ragged line of peaks and valleys, and in a flowing sinuous wave. "Relax now," John says, "and reduce the signal." He points to changes in her brainwave pattern, something she is doing with more consistency since working with an expert in meditation. Success is just a question of time, he says firmly, watching the cryptic thoughts of his daughter dance on the screen.

Claire describes her dilemma this way: "Pretend that you are playing the piano and you can't make any sound. That is how I feel." To those working to help her, she says: "Thank you so much for trying to put sound to my music."