September 18, 2008
Cancer survivor brings art, courage to other patients
The system is simple and intuitive: zero is white, 13 is black. Eighteen -- chai -- is red.
"Red is the color of courage," said Kaufman, 64. "Life takes courage."
If Kaufman's courage ever falters, few could tell from her brisk schedule of activities. She's a member of the American Jewish Committee (AJC) Board of Governors. A one-time recipe tester for Bon Appétit magazine, she holds kosher cooking classes for adults and children. And she gives the bulk of her time and energy to Art of the Brain, a nonprofit she founded in 2000 to help fellow brain cancer patients navigate the disease's often-profound physical and mental effects -- through art.
"People who have brain cancer oftentimes turn to art to feel better," Kaufman said at her Beverly Hills home on a recent afternoon. "They learn to stop judging their work. Any kind of art can help, whether it's music, writing, filmmaking, painting. We are always trying to help patients find their own artistic talent."
Kaufman began writing poetry to counter feelings of despair following her diagnosis in 1997. Since then, she has composed enough material for four books. Proceeds from the sale of her books help fund Art of the Brain, which through galas and partnership events has so far raised more than $3 million for cancer research at UCLA.
As the organization gears up for its ninth annual fundraising gala at UCLA's Schoenberg Hall on Oct. 4, Kaufman hopes Art of the Brain can reach out to more cancer patients in need of comfort and hope.
"Brain cancer is the most lonely cancer," she said. "It affects the way you act and feel. You think, 'Should I go out and be seen like this, or stay inside?' It's easy to just stay inside."
That's a decision Kaufman still wrestles with. She sometimes turns down lunch dates with friends because her speech, which was damaged by her two surgeries, often comes out slurred and normal conversation takes as much energy as "running around the block."
But Kaufman said her personal struggles are what make other people with brain cancer -- many of them lonely and misunderstood -- able to relate to her.
"Unless you walk this trip, you don't really know what people are going through," she said. "You don't have much left after brain cancer. I felt I was only half a wife, half a woman. One of the premises of Art of the Brain is to restore peoples' self-esteem."
The organization is built on a system of 20 volunteer "illness mentors" who visit with cancer patients and their families and offer both physical and emotional support. These volunteers, affectionately called "Brain Buddies," aid with everything from meal preparation to explaining the nuances of the disease. They also help patients cope with anger and depression by encouraging them to pick up, for example, a paintbrush or a pen.
When Kaufman first started sketching out poems in 1997, she found she had a lot to say that she wasn't able to tell family members or friends.
"I tried not to burden other people with my depression, so it came out in my writing," she recalled. "That was how I survived. I learned to take layers off -- to become more truthful. I lost all my inhibitions."
Kaufman's poetry deals with cancer and sex, social acceptance and forced limitations. Her humor, which she freely deems "cockeyed," can be jarring, as when she compares her tumor to an unconventional pregnancy. Her sadness and strength are palpable in her 2007 book "Do You Want Your Brain to Hurt Now or Later?" as she dwells on the value of flaws:
Perfection is not about real human beings.
Perfection is a cartoon, without the humor.
Perfection cuts away the core of caring.
Perfection is a hidden illness.
Writing was a catharsis for Kaufman, whose initial misdiagnosis almost cost her her life.
For two years, Kaufman had chalked up her recurrent headaches to menopause. When the headaches eventually turned to seizures, her husband, Roy, rushed her to the emergency room. Doctors there told her she'd had a stroke and sent her home with no medication.
"Seizures are often a symptom of strokes; that's why brain cancer is often misdiagnosed as a stroke," she said. "They told me, 'Go home, rest.' But I still felt that something was wrong."
Kaufman went to UCLA's Neuro-Oncology department for a second opinion, where she was properly diagnosed and booked for emergency brain surgery.
"They said, 'The good news is you didn't have a stroke. The bad news is you have a brain tumor the size of a golf ball,'" she recalled.
After her surgery, Kaufman sought a meaningful way to thank Dr. Timothy Cloughesy, director of the UCLA Neuro-Oncology Program. She wanted to create a support system for other brain cancer survivors, stripped of their professional skills, deprived of basic mental functions and plunged into an uncertain new lifestyle marked by fear and self-doubt.
Kaufman and Cloughesy founded Art of the Brain based on Cloughesy's observation that the creative process had helped many of his patients find release and hope on the often-steep hike to recovery.
"We want to give people back a sense of purpose in life," said Kaufman, who dealt with her own feelings of loss after having to abandon a successful career as an entrepreneur and business owner.
A Pasadena native, Kaufman got her degree in home economics from CSUN, and went on to work for the Southern California Gas Company giving home cooking demonstrations. She tested recipes for the newly founded Bon Appétit magazine in the early 1970s, and in 1977 -- after a "wild vision" -- established a mail-order confection company Grand Chocolate Pizza in her own kitchen.
After she and her husband adopted and raised two daughters -- Jennifer and Suzy -- Kaufman gave a series of cooking classes she called "Building Bridges by Breaking Bread," based on the notion that sharing food fosters friendships.
Perhaps most devastating to Kaufman, when her brain cancer returned in 2003, was being deprived of her ability to cook.
Kaufman couldn't speak or walk after her second surgery. She lost her senses of taste and smell for two years. She lost her ability to comprehend numbers permanently.
"I wasn't able to cook because I couldn't measure," she said. "But then I said, 'Oh, forget the measuring.' Now, I just feel the art of it."
Recently, Kaufman began giving cooking classes again, and can often be found in her stainless steel kitchen baking mandelbrot. She calls the jagged scar on her scalp, usually hidden beneath a heap of honey-blonde hair, "my badge of courage."
Having cancer has emboldened Kaufman in other ways, too -- after her first surgery in 1999, she traveled to Israel for the first time.
"I wanted to learn more about my roots," said the 30-year AJC member, who is active on both the Los Angeles chapter board and the national Board of Governors. "When I think about hope, which can be a little shaky, I go to the Torah to learn lessons about motherhood, belief, family struggles, life and death."
Kaufman's tumor is inoperable, and she doesn't know how much time she has left. But in late August, she got to experience a milestone she didn't expect: becoming a grandmother.
"I never thought I'd live to see this," she said of her grandson, Garrett. "I feel like I'm in God's hands right now. I have been reborn twice, after my first and second surgeries. Now there is a third new life -- my grandchild. What more could I ask for?"
To learn more about the cooking classes, call Judi Kaufman at (310) 858-7787. Kaufman's poetry books can be found online. Art of the Brain's ninth annual gala takes place Oct. 4, 6:30 p.m. at UCLA's Schoenberg Hall. For more information, call (310) 825-5074 or visit www.artofthebrain.org.