October 15, 2019

The art of living with brain cancer

When Judi Kaufman was diagnosed with brain cancer in 1997, she was told she had five years left to live.

But Kaufman — an accomplished chef, writer and active member of the Jewish community — refused to sit back and accept her prognosis without a fight. 

“I asked [my doctor] who the survivors are,” she said. In response, her physician, Dr. Timothy Cloughesy, director of the Neuro-Oncology Program at UCLA, proposed taking up some form of art as a means of improving her quality of life.

Kaufman took his suggestion and ran with it. She began writing again, exploring through her work the depths of confusion and pain that her brain cancer had caused.

“You lose your sense of self,” she said of the disease that has robbed her of her sense of taste and made it difficult for her to comprehend time and numbers, to remember what day it is, or know how many weeks have gone by. But writing, Kaufman said, gives her something else.

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“It gives me my heart,” she said. “It lets me figure out where I want to go and what counts in life.”

After being hit with the profound realization that art could help her rebuild her life in ways she never dreamed possible, Kaufman wanted to help others in her situation make the same discovery. With the help of Cloughesy, she launched Art of the Brain in 1999, under the auspices of the UCLA Foundation. It is a nonprofit devoted to raising money to promote awareness of brain cancer, as well as introducing patients to the healing powers of art.

The organization is run entirely by volunteers and has no operating budget — “Everything is donated,” Kaufman said — and all money is given back to the UCLA Neuro-Oncology Program.

To that end, Kaufman helps to organize an annual gala, which, together with other small events throughout the year, has raised more than $5 million since its inaugural event in 2001.

The foundation is supported by a group of volunteers called “Brain Buddies” who serve as mentors to people with brain cancer and their families, helping them navigate the emotional, physical and psychological changes that the disease can bring about.

And of course, the organization also supports the arts. “When I found out I could write well, it turned everything around,” Kaufman said. “Art can give you something for nothing.”

Kaufman still has difficulty arranging her schedule and, she says, she has “no idea how long I’ll live,” but she works full time managing the foundation, for no salary. Art of the Brain reaches approximately 600 people annually, and over the years, it has reached thousands more.

Kaufman isn’t planning to scale back any time soon. “I live every day thinking of the Jewish value of tikkun olam,” she said. “I always question, ‘Am I doing enough for people?’ ”

Her long-term goal for the organization is nothing less than what one might expect from a woman who has outlived her diagnosis by eight years and counting: At the end of the day, Kaufman says, she wants “to cure brain cancer.”

For more info, visit artofthebrain.org.