Judi Kaufman has trouble remembering numbers. So the two-time brain cancer survivor, who is now living with her third tumor, assigns colors to numbers to help keep them straight.
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
Health – Take the Bite Out of Dental Health Pains
Since most Americans lose their dental insurance benefits when they retire, the majority of people over 65 pay out of pocket every time they visit a dentist. Medicare does not cover routine dental care (nor does Medicaid in most states) and more than 80 percent of older Americans have no private dental insurance, according to a recent report by nonprofit advocacy group Oral Health America.
Yet, older adults may need dental care more than any other age group.
“Patients age 65 and over will have potentially an increase in cavities or decay on the root surfaces of the teeth,” said Dr. Matthew Messina, an American Dental Association consumer adviser and practicing dentist in Cleveland. “And that comes secondary to the medical condition of dry mouth — a decrease in the amount of production of saliva because of age and certain medications…. We also see periodontal disease in patients of that population.”
Messina advises his older patients to see a dentist at least once every six months for an oral cancer screening and recommends an annual visit for denture wearers.
So what’s a person with no dental insurance to do? If you can pay out of pocket, ask your dentist if he or she will offer a discount or work out a payment plan.
“A lot of times for patients paying in full at the time of service, some offices will offer some degree of bookkeeping courtesy,” Messina said. “There are a number of ways that offices are creatively handling finances for patients of all ages to make dentistry affordable.”
Local dental schools are another option for reduced-cost care — if you’re not in a hurry.
“Our fees can be about half the cost of private practitioners,” said Dr. Janet Yellowitz, director of geriatric dentistry at the University of Maryland Dental School in Baltimore. “The downside is that because it’s a training program, it takes time — you’re working with students who are being supervised.”
She suggests contacting schools with graduate training programs for slightly more costly but quicker treatment, or looking into clinical trials at your local dental school.
Neighborhood health clinics sometimes offer dental services, according to Yellowitz and Oral Health America’s Elizabeth Rogers. However, they are not always widely publicized. Of course, people in extreme pain can go to the closest hospital emergency room, where they most likely will be given painkillers and get their tooth pulled, Rogers said.
“But that is by no means a solution,” she added.
If this doesn’t sound like a lot of options for those without dental coverage, it’s not. But a few organizations around the country are trying to change that. One is Minneapolis-area Apple Tree Dental, a nonprofit clinic that aims to improve access to dental care for underserved populations, including seniors. The full-service clinic — which treats more than 30,000 patients each year in the Twin Cities area, including on-site visits with patients in long-term care facilities — has been cited as a national model for dental care and has received requests from all over the country and Canada to present on their model.
“What I’m interested in is ensuring that we have programs in place that at least get primary care needs met for seniors,” said Dr. Carl Ebert of Apple Tree Dental. “Because when you look at the demographics and the fact that more people are keeping more of their teeth as they get older, you’re going to be facing a huge dilemma…. Then add to that the nationwide problem of the significant decrease in the sheer numbers of dentists … and the sort of seller’s marketplace we have right now in dentistry where dentists can pick and choose who they see — some exclude all insurance patients, some just cater to high-end patients seeking cosmetic services. When you start to multiply all these factors, you’re looking at a tremendous problem.”
Abigail Green is a freelance writer and editor based in Baltimore.
Feeling Squeeze of Long-Distance Care
Stephanie Poretz brings Sasha, her 13-year-old cockerspaniel, to Cedars-Sinai Medical Center twice a week. Mark Ferber comes in withhis beagle Miss Daisy. Beverly Byer brings down Brailley, her black lab who wasrejected from guide dog school because of her bad hips.
Since 1995, Jewish professionals have participated theirpets in POOCH, an acronym for Pets Offering Ongoing Care and Healing. TheCedars-Sinai program allows affectionate dogs to spend time cheering up sickand terminally ill patients.
“It’s very healing having a dog give you unconditionallove,” said Barbara Cowen, who coordinates POOCH with Sandra Colson and Terri Lukomski.”When the dog comes into the room, there’s a lot of physical and emotionalbenefits. It’s really healing for everybody involved, including the staff.”
Originally launched in Cedars-Sinai’s AIDS unit, POOCH nowfans out its four-legged friends to the cardiology and pediatric wards and the Thalians Mental Health Center. The dogs undergo an extensive screening process, and specialcare goes into making sure that the canines do not harbor germs.
“Dogs are bathed 24 hours before they come,” Cowen said,”and they have stool sample checks twice a year.”
For two years, Meagan Panzer has brought down Cosmo, her7-year-old Bijon.
“It’s an absolutely wonderful program,” Panzer said. “Youbecome an instant friend of whomever it is you’re introduced to. You’re nottalking about the illness, you’re bonding with them over dogs.”
She recalls one time when “a woman saw me in the hallway andbegged me to see her father in the Intensive Care Unit. He had had a terriblenight. They couldn’t calm him down. The minute he saw Cosmo, you saw his wholebody relax. He fell asleep with my dog [sleeping] in his arms. The familycouldn’t have thanked me more.”
Cosmo loves his tikkun olam work. But even for the dogs, theexperience can be emotionally draining.
“He’s actually exhausted afterward,” Panzer said. “Cosmocomes home and takes a really long nap.”
To learn more about POOCH, contact Barbara Cowen at (310)423-2749.
Who Was That Mad Man
Cedars-Sinai Ministers to Spiritual Needs
"A woman came into my office yesterday needing to make a decision about the amputation of her husband’s leg," said Rabbi Levi Meier, the chaplain at Cedars-Sinai Medical Center. "It was a very difficult case, because her husband cannot give proper, informed consent, because his mind is not functioning anymore.
"Then I had another woman who wanted to know about code vs. no code," the Orthodox rabbi continued. "’Code’ means to try to resuscitate. Her husband is on life-support system, and the doctors were pressuring her to make a decision about whether they should code him or not. I helped her understand the Jewish medical ethics involved, and to make a decision."
It’s all in a day’s work for Meier, who has served as the Jewish chaplain at Cedars-Sinai since 1978. (There is also a Catholic chaplain who serves Christian needs.)
With over 50 percent of the beds in the 905-bed hospital occupied by Jewish patients at any given time, Meier finds himself administering pastoral care to patients who are terminally ill, have presurgery anxiety or depression or need to deal with family dynamics that have changed with the encroachment of debilitating illness. He also helps doctors cope with a job that finds them getting up close and personal with death on a regular basis.
"The main aspect of my counseling is from a spiritual perspective. I use [the same techniques] psychologists and psychiatrists use, but I look at the spirit, where people can feel their relationship with God personally, not in a cognitive sense, but in a personal sense," said Meier, the father of four, who holds a doctorate in gerontology and is a licensed psychologist. "Because when you feel God in a personal way, you become a different person."
In his role as chaplain, Meier has found many ways to bring God to Cedars-Sinai. The rabbi has organized Jewish medical ethics conferences and synagogue services for Shabbat and the Jewish holidays. He has produced closed-circuit religious television programs for the patients. Meier also teaches a Torah class at the hospital every Thursday, which is open to patients, doctors, staff and members of the board of directors and board of governors.
During his tenure, the rabbi has overseen the establishment of a kosher kitchen that can service kosher patients with special dietary requirements, (such as low-sodium needs). And working with Sharon and Herb Glazer, he has seen that mezuzot were placed on every door of the hospital, including patients’ rooms.
Meier also confers with the medical center’s board of directors and board of governors about how they can best live up to the facility’s motto: "And be a blessing," a verse taken from Genesis.
"’And be a blessing’ means taking care of poor people, no matter what culture, ethnicity or religious faith they have," Meier said. "Taking care of indigent patients of all religions is central to Judaism, and that is why the ambulatory care center (a walk-in clinic that has a sliding fee scale for low-income patients) is a central part of the hospital."
Under the same program, Cedars-Sinai also operates traveling coaches that take doctors and other health-care workers into low-income communities that are underserved medically, making it convenient and affordable for families to receive quality medical attention.
Meier recently parlayed his experiences at Cedars-Sinai into a book titled, "Seven Heavens: Inspirational Stories to Elevate Your Soul." The book is about a fictional patient named Jonathan, a scientist who worked on the human genome project. Jonathan finds himself facing mortality, and feels the need to bare his soul to Meier.
This story line is secondary to the messages that Meier wants to bring out in the book, that life is a series of moments, and each is moment is perpetually sacred. The book talks frankly and openly about death, and helps readers come to terms with the inevitable.
"I say vidui [the Hebrew confession for those facing imminent mortality] with people a few times a week," Meier said. "And what that has done to me is it has helped me prioritize what is important in life. Sometimes people will have an argument about the color of furniture, should it be blue or purple, or things like that. And while it is nice to have good colors, there is a larger picture."
Meier said every story that he tells in the book is true, although identifying details were changed. "My main character, Jonathan, is an M.D. Ph.D. A lot of the people around here are M.D. Ph.Ds, and they have a sense of certainty about themselves and about life, until something happens to them, and then they begin to look at their soul.
"That is what this book is about, what I call, ‘The Soul Project.’ What I am trying to do is to combine the human genome project that they are doing with the human soul project that I am doing. I want to make people aware of how their soul is affecting their health."
"Seven Heavens: Inspirational Stories to Elevate Your Soul" (Devora Publishing, $24.95) is available in bookstores. To reach Rabbi Levi Meier at Cedars-Sinai, call (310) 423-5238
Beyond the Wall
It is a bright, sunny day at Vista Del Mar Child and Family Services. In her office, medical director Dr. Susan Schmidt-Lackner is sitting on the floor with one of her young patients — not an easy feat for a tall woman in a long skirt, but the doctor is more interested in the little boy than in her own comfort. The child’s mother, seated nearby, recounts her concerns, such as how her son can’t tolerate the texture of most foods and is subsisting on a diet of McDonald’s Happy Meals.
"What do you like about McDonald’s, John?" the doctor asks, moving closer to the boy. She repeats the question until John answers, giving her a fleeting moment of eye contact.
Like most of the children Schmidt-Lackner sees, John (not his real name) is autistic and finds social interaction difficult. His mother tells a reporter that John used to spend much of his time in destructive behavior against others and against himself — biting his own arms, for example. Since being treated by Schmidt-Lackner, who put John on a combination of the medications Prozac and Risperdal, John’s behavior has improved, and he has started communicating with his family, even playing games with his little sister.
"We noticed the difference right away," his mother said.
Another parent of a patient calls Schmidt-Lackner "our miracle worker. She gives it to you straight, but she also gives you hope."
Dr. Schmidt-Lackner, 45, is one of the growing number of doctors and therapists treating children with autism spectrum disorders. In addition to her work at Vista Del Mar, she is an assistant clinical professor at the UCLA Neuropsychiatric Institute, serves on the board of directors of the Autism Society of Los Angeles and will be a presenter at their April 28-29 conference in Pasadena. A California native, Schmidt-Lackner lives in Los Angeles with her husband and their four children. She lectures frequently at conferences on the use of medication in the treatment of autism spectrum disorders and is considered one of the most respected authorities on the subject in the nation.
Autism is a hot topic right now. During the past year, the neurological disorder, which involves a variety of symptoms, including a delay in speaking and an inability to connect socially with others, has been covered in everything from Newsweek to "The Montel Willams Show." The high profile is due mainly to the frightening rise in diagnoses of the mysterious disorder. Schmidt-Lackner notes that when she began working with childhood disorders at UCLA in the late 1980s, the incidence of autism was about seven cases per 10,000 children in the general population; now it is estimated at 20 per 10,000, or 1 in 500 — and more children are diagnosed every day.
In an interview this month (which is also national Autism Awareness Month), Schmidt-Lackner answered some frequently asked questions about autism and her work with autistic children.
JJ: We’ve all heard about the rising number of children being diagnosed with autism. Do you think it is because of the change in the definition of who fits on the autism spectrum, or because there are more children being born with this disorder?
SSL: I think it’s a combination of both. We have a better understanding of autism, and the actual incidence has also increased. Autism is no longer a rare disorder; it is now more common than Down Syndrome, more common than childhood cancers. Everyone knows someone who has a child with autism, so that proves it for me.
JJ: Have you noticed an increase in the number of Jewish children being referred to you?
SSL: I see kids from every walk of life and an increase (in diagnoses) across all ethnic and socioeconomic lines. I don’t see this as being a Jewish problem, like Tay-Sachs.
JJ: What are the recent medical breakthroughs that may help children and adults with autism?
SSL: There is a lot of new research. We’re gathering interesting data and facts, but that hasn’t translated into a lot of effective new treatments for our kids. The atypical anti-psychotics are being used all of the time; some of my kids are even on anti-Alzheimer’s medications, but treatment is still very symptom-oriented. We know autism is linked to the serotonin-transport gene, but in general we are not treating the core of the disorder. Also, it’s important to make sure our kids are getting good support, like behavioral programs. At Julia Ann Singer [Vista Del Mar’s school for children with developmental disabilities and emotional disturbances], what’s great about our school is, we encourage parents to spend one day a week in the classroom, which is very different from the public school model. We also have a support group that meets weekly.
JJ: One of the problems facing many parents of autistic children is the cost of the myriad therapies and evaluations their children need. Seeing someone of your caliber can cost anywhere from $500 to more than $1,000 per visit. Why so much?
SSL: Those prices are usual for a first-time evaluation, not a follow-up, and Regional Center [a state agency] can sometimes fund the visit. But you’re 100 percent right: people who have better economic means get better services. I do a lot of pro bono work because I think it’s deplorable, the lack of services for people who are not as sophisticated about the system.
JJ: What is the prognosis for most children with autism?
SSL: Probably 25 percent of the kids do really well, take off and are able to function independently. The majority of kids are going to need assistance throughout their lives.
JJ: What elements of being Jewish do you find help you the most in your work?
SSL: To me, if I didn’t have this framework [of Judaism], it would be so hard. My parents — that is, my clients — are my heroes. To have a kid with developmental disabilities and be able to live that, day in and day out, you have to be extraordinary. I’m an observant Jew, and the more I do [in this field], the more I realize there’s a very spiritual connection to this work. There’s a spiritual side to these children, and I feel privileged to see these very pure souls.
JJ: What can the Jewish community do to better support families of children and adults with autism?
SSL: Our spiritual leaders need to reach out to people with developmental disabilities. Instead of excluding these kids, we have to include them. The Bureau of Jewish Education has been talking about special ed forever, and Etta Israel is doing a great job, but people need to reach out more. These families need so much support. The divorce rate is so high, between 70 and 90 percent, in families where a child has autism. Families slide downhill so terribly, in a way they would not have if they did not have a child with developmental disabilities. The parents who do the best are the ones who can accept their child’s disability and still see the beauty of that child. It is the responsibility of the Jewish community to pull these families in, to help them push for their child’s potential, but also help them to accept their limitations.
For more information on programs at Vista Del Mar, call (310) 836-1223. For more information on the Autism Society of Los Angeles’ conference, “A Journey to Solutions 2001,” call (818) 953-3855.