How I plan to die


One Sunday last November, 86-year-old Joy Johnson laced her running shoes and ran the New York marathon for the 25th year in a row.  At mile 20, she tripped and fell, but quickly got up and finished the race. After celebratory hugs from her family and a quick interview with Al Roker, she returned to her hotel room, took a nap and died.

She is my idol.  

Who wouldn’t want to go out that way?  And yet, for many elderly people, the reality of life at 86 doesn’t involve marathons, but frailty, physical disability or Alzheimer’s, straining the resources of the grown children who care for them. At 55, I’ve already made my children promise that if I become demented, they will not write a heartbreaking memoir about how they bravely fed me prunes while I stared dully into space with food all over my shirt or, as Karl Ove Knausgaard vividly recounts in the international best-seller “My Struggle,” hauled my week-old festering corpse out of the home I’d trashed in my senility.   As human beings live longer and longer, extreme elderliness is a likelihood for many of us. But if we can’t choose to be elderly like Joy Johnson, do we want to live like Knausgaard’s father? Is there an opt-out clause?

Yes, says Dr. Ezekiel Emanuel, whose recent article in The Atlantic, “Why I Hope to Die at 75,” went viral immediately, racking up thousands of comments. Emanuel objects to what he calls the “American immortal” ideal of prolonging life as long as possible. Life after 80, Emanuel contends, is likely to involve physical or mental diminishment. Over the objections of his family, Emanuel has decided that he will accept no medical care after he is 75, and if diagnosed in his late 60s with a terminal illness, he will choose not to be treated. Ideally, he hopes to die of an infection like pneumonia, which will kill him swiftly and relatively painlessly.  

I’m fascinated with Emanuel’s argument. What’s most appealing to me is the idea that if I chose it, I might avoid what horrifies me most: that I would become a burden to my children, a shell of the full human being I believe myself to be. I am a control freak. I fear indignity more than death, and if the passionate public response to Emanuel’s article is any indication, I’m not alone.

But the more I think about his argument, the more dubious I become. One of his central arguments is that as people age, they experience a slowdown in memory and problem-solving ability. For him, this slowdown represents a dire and unequivocal loss of humanity. The average age of Nobel Prize winners, he argues, is 45. For the majority of elderly people, “Creativity, originality and productivity are pretty much gone.” Because they often feel happy anyway, they are oblivious to the fact that they are “aspiring to and doing less and less.” 

I think of my mother, a very lively 80, who retired several years ago from her career as a psychologist; though she remains extremely active and takes many classes at Northwestern University, she’s often content to take life a little more slowly than she once did. On a recent trip to Laguna Beach, she was happy to walk into town and sit on a bench for much of the afternoon, watching the ocean. But really, why in the world should she aspire to do more? What’s wrong with taking time to breathe the fresh air and watch the gulls swoop over the waves? Couldn’t that be called wisdom? Or even enlightenment? Three years ago, she caught a bacterial infection that nearly killed her; after a brief course of antibiotics, she was back on her feet. If she’d refused antibiotics and died by choice, how would that have been different from suicide? For the rest of my life, I would have felt personally responsible, guilty and even angry. And how would her beloved grandchildren have felt, knowing that a quick death was more important to her than being at their college graduations? Is that really how she would want to be remembered?  

I don’t want to sentimentalize the reality of aging. Too many of my friends know the pain of caring for an elderly parent who is suffering from dementia. We roll the dice when we choose an uncertain future. But our lives belong to the people we love as much as to ourselves, and making a unilateral, radical decision in the midst of a healthy life may cause more pain than it prevents.  Our legacies are as complex as the lives we have lived. And old age, for all its losses, is not only loss.  

I respect Emanuel’s choice, but to me, making a proclamation like his in the midst of a healthy life feels like a defensive crouch, a way of denying uncertainty. It also feels deeply unfair to the rest of the family — and does an injustice to how much our elderly relatives and friends often give to us. The same medical system that gives some people the illusion of immortality also gives us the illusion that we can control when we die without causing suffering to others. Instead of focusing on how Joy Johnson died, I’ve decided to focus on how she ran her race: full-throttle, joyous, undaunted by pain. I can’t promise to live that way when I’m 86, or when I’m 76, or even, let’s face it, tomorrow. But I can try to live that way today.  And maybe that’s enough.

Ellie Herman is a writer, teacher and life coach.  She blogs at gatsbyinLA.wordpress.com

Paws of Love: Fur healing’s sake


Ari Gould, 6, was diagnosed with acute lymphoblastic leukemia three years ago. In addition to the physical pain he has endured, the disease and the stressful medical procedures that followed have also left him socially isolated.

The steroid treatments he receives once a month have numerous unpleasant side effects, including increases in anxiety levels.

“When he is on steroids he feels really bad,” said Alissa Gould, Ari’s mother.

During those times she arranges for Ari to visit with Ziggy, a friend he made back in April.

“When Ziggy comes, it totally calms him down and is a great distraction,” Gould said.

Only Ziggy isn’t a boy; he’s a golden retriever whom Ari met through Paws of Love.

Started in 2011, Paws of Love is a volunteer-based project of Chai Lifeline that provides seriously ill children with canine companions from Lend a Paw, a pet therapy agency whose teams of handlers and dogs have been through a rigorous training program. The therapy dogs and their trainers help lift the spirits of chronically ill children and fill the social void that often occurs when a child gets sick.

“When someone is hit with an illness out of the blue, the shock and the terror that strikes a family is overwhelming, especially for a pediatric illness,” said Gila Sacks, coordinator for Paws of Love.

First introduced by Boris Levinson in the 1960s, animal-assisted therapy has grown from fewer than 20 programs in the 1980s to more than 1,000 such programs today. Therapy applications include helping children practice reading, assisting with physical therapy, and providing emotional support to senior citizens and war veterans, among others.

Aubrey Fine, author of the textbook, “Handbook on Animal-Assisted Therapy,” says that while there is little evidence-based research to confirm the effectiveness of animal-assisted therapy, that’s beside the point. “There is a lot of qualitative support out there to say that animal-assisted therapies have value,” he said.

Some evidence is beginning to emerge that dogs can help people with cardiovascular disease. Blood pressure in both the human and the dog may be reduced when the person pets the animal, according to Fine, and people who walk their dogs are less likely to have chronic health problems.

Levels of oxytocin, a neurotransmitter that promotes good feelings, also change in humans and animals when the animal is being petted. And when it comes to the emotional benefits of animal-assisted therapies for children, Fine said, “The animal seems to go under a child’s conscious defense mechanism.”

Sharon Vincuilla, director of Lend a Paw, says she regularly sees the positive effects of animal-assisted therapy. “There was a woman at one facility who never talked, but she would talk to the dogs,” she said. 

One Chai Lifeline family, Sacks noted, has noticed significant improvement in their children’s communication skills after several sessions of pet therapy.

In addition to Paws of Love, Chai Lifeline offers a wide range of services for all members of a family fighting a childhood illness. Programs include individual and family counseling, telephone support groups, art therapy for patients and siblings, tutoring, help with medical insurance, referrals to specialists and therapists, big brothers and big sisters mentoring, and retreats for parents. All of Chai Lifeline’s services are free, funded by private donations and grants.

Chai Lifeline has “helped us a lot with food and keeping the Sabbath. They have helped with activities Ari could do that were very sanitary and geared toward his age,” Gould said. “They also have programs to help the moms … relax without the kids, to give them some free time. And they are very good with the children.”

During a July visit, Ari ran out to meet Ziggy, despite feeling ill from his steroids.

Ziggy’s handler, Jody Rudy, said she met Ziggy while walking dogs for a golden retriever rescue organization. She says she quickly noticed he was meant to be a therapy dog.

“It was not so much about me, but about my dog. The thing about Ziggy is that when someone is nervous or having a hard time, Ziggy will pick that person out of a crowd and sit next to them. I saw this in him, and so I wanted to use him to benefit other people.”

Rudy wanted to make sure she was not forcing Ziggy into a job that was against his nature, so she barely trained him at all before the therapy dog exam. “I read what he was supposed to do … and I made the determination that if he was ready to be a therapy dog, he would pass that test. … And he did. It was really easy for him to do it.”

Rudy chose New Leash on Life to get Ziggy certified for therapy, because they make a point of choosing shelter dogs to be trained for therapy.

Although he was too tired to play outside, Ari gave Ziggy his full attention for most of the visit, petting him while telling his visitors about his recent experience at summer camp.

“Ari just lights up when he sees Ziggy,” Rudy said.

For more information about Paws of Love, call (310) 274-6331 or visit chailifeline.org.

Cyclic Vomiting Syndrome: A hunger that cannot be fed


When Gudrun and Daniel Brock opened their front door, Aaron, the couple’s 6-year-old son, ran to hug his teacher from Wilshire Boulevard Temple, whom he had not seen in more than a year. Only she heard him whisper: “I missed you so much.” 

At first glance, Aaron looked like any other boy his age — smiling, his long-lashed eyes bright and full of energy. But Aaron was not wearing a shirt, and his scars were apparent — one near the shoulder blade, two above the clavicle, two by the right side of his ribs, one on his chest, two on each side of his navel, scars on both arms and even his hands. Most noticeably, there was a white plastic plug on his belly, to allow his stomach to connect to a feeding tube so he can eat. 

Like most boys his age, Aaron was proud of his scars. “This is my shark gill,” he said, pointing to one. Then he added mischievously: “I’m pretty brave.”

“Are you staying for dinner?”

“We’re not sure,” the visitors said.

Looking up at the ceiling, Aaron replied, slowly: “One never knows …”

“Actually, he needs to eat now,” his mother told the guests. 

She gently connected a thick syringe full of feeding formula to a tube and plugged it into Aaron’s stomach, releasing the formula slowly. 

The boy winced.  

After a few minutes, Aaron laid his head on the table. “I’m not feeling well. I have a tummy ache,” he said. 

There was a red cup on the table: Aaron retched, then spat, into the cup. 

“Daddy,” he said, “It’s starting again. Can you take me?”  

“OK,” Daniel said, picking up his son’s frail body. 

Aaron peered over his father’s shoulder and said, “Sorry, guys.” 

Daniel carried the boy to his tiny bathroom at the back of the house. Sounds of crying and retching continued to echo from there to the living room for the next four hours, without stop. 

Once her son was out of earshot, Gudrun confided, “You have no idea what our life has been like, every day, for these last six years. And it’s gotten worse. Especially the last six months. We need help.”

Four and a half years ago, Aaron was diagnosed with a chronic illness known as Cyclic Vomiting Syndrome (CVS). But Aaron’s problems actually began at birth, when he was quickly diagnosed with Tracheoesophageal Fistula/Esophageal Atresia, a defect in which the esophagus is shortened and closed off.

Aaron’s particulars are unique, but the condition of CVS is more prevalent than most people know. “To my knowledge, there has been no research linking this birth defect to CVS,” said Dr. Richard Boles, a clinician for the CVS Association, an associate professor of pediatrics at the Keck School of Medicine at USC and director of the Metabolic and Mitochondrial Disorders Clinic at Children’s Hospital Los Angeles. “However, it has been determined that birth defects are more common in patients with CVS.”

At just 4 days old, Aaron had his first surgery, this one to connect his esophagus to his stomach. He spent the next seven weeks in the hospital’s neonatal intensive-care unit.

“After he was discharged, we had a positive outlook. We thought the worst was over,” Gudrun remembered. “We had no idea what we were in for.”

Because of his condition, Aaron initially was labeled as suffering from “failure to thrive.” Then, at 18 months, he developed CVS, although it was not officially diagnosed until he was 4.

Dr. Ron Bahar, a pediatric gastroenterologist, has treated several patients suffering from CVS, which is characterized by recurring, prolonged attacks of severe vomiting, nausea, prostration and intense abdominal pain.

“CVS is a variant of the migraine headache,” Bahar said. “The main cause is genetics, and the way one responds to his or her environment. Stress, certain food, sunlight, infections such as colds or flus and intense excitement can all trigger the abdominal migraine. The trigger then sets off a cascade of events, such as abdominal pain, headaches, fevers, diarrhea and dehydration — on top of the vomiting and nausea.”

For Aaron, Gudrun said, triggers can be any form of stressors, including physical ones — like a virus — or psychological ones, including even the excitement of a Shabbat dinner.

During an episode, Aaron’s vomiting occurs at frequent intervals, for an average of one to four days. Between episodes, he appears and acts pretty much like any other kid.

The disease is not yet well known and, perhaps for that reason, not often diagnosed. “Three studies have shown that about one in 50 school-age children suffers from CVS,” Boles said. “However, we don’t even know about a hundredth of those cases, because so many are misdiagnosed. It often takes years before a diagnosis, and even then it is often just assumed [to be] a stomach flu or food poisoning.”

The Brocks want to spread the word so others suffering from CVS will get help more quickly than they did.

Knowing what was wrong with Aaron, and how best to treat him, was a struggle from day one, Gudrun said. “On the day he was born, he latched onto me. But I knew something was wrong. He was breathing bubbles out of his lips. And every time I’d go to feed him my milk, he was coughing, and coughing it back up.”

When the Brocks brought Aaron home after his first surgery, he continued to have trouble eating and gaining weight, so at 22 months he underwent surgery again, this time to give him a feeding tube to deliver nutrients. Aaron’s calorie intake improved; nevertheless his eating issues stubbornly remained. There is a procedure called a Nissen fundoplication, in which the top of the stomach is wrapped to the base of the esophagus and the area is then sewn together. By the age of 2 1/2, Aaron had undergone this surgery not once, but twice.

Once Daniel and Gudrun understood the nature and treatment of Aaron’s illness, things started to improve. By September of last year, Aaron was seeing a pediatric neurologist, who helped arrest the cyclical nature of the disease by using anti-seizure medications.  Aaron began kindergarten at the Brawerman Elementary School of Wilshire Boulevard Temple, and four months passed without an episode. There, because of his upbeat nature, Aaron was so well loved that he was nicknamed the “mayor” of the school community. Everyone who met him could not help but notice something remarkable in the boy.

As Cory Wenter, who interacted with Aaron regularly as director of security at the synagogue, put it: “Aaron, in particular, is one of the most incredible children I have had the pleasure to know. His innate wisdom has always struck me as one of his most curious and admirable qualities. This, combined with his enthusiasm and playfulness, is a truly inspiring combination. Most of all, I am staggered by Aaron’s resilience.”

“Aaron is a fighter,” Wenter said.

Children’s art exhibit gives expression to illness


Artwork created by children with serious illnesses will be auctioned off, along with works by professional artists and celebrities, at Chai Lifeline’s “Through the Eyes of our Children” on May 21.

Chai Lifeline West Coast provides support to 325 seriously ill children and their families, and most of the 40 works being exhibited were created in art therapy programs. In addition to the children’s work, celebrities such as Julia Louis-Dreyfus, Jamie Lee Curtis and David Beckham have created works specifically for this event, and more than 20 internationally and nationally acclaimed artists, including Kim Abeles, Lita Albuquerque, Doni Silver Simons and Ruth Weisberg, have donated works to benefit Chai Lifeline West Coast.

Entry to the exhibit is free. To RSVP, contact westcoast@chailifeline.org, call (310) 274-6331, or go to

Baby’s parents looking for hope, help and a miracle


Baby Leah tenses and contorts in her crib at Mattel Children’s Hospital UCLA. A visit to her in the room requires suiting up in a gown, gloves and mask to ensure she doesn’t become sick in her fragile state. Zev and Frani Esquenazi’s little girl, who is named for Princess Leia from the “Star Wars” films, has received multiple spinal taps, MRIs and EEGs, and is breathing through her trachea. Her movements are erratic.

After employing the expertise of more than 40 doctors and a round-the-clock nurse service, the Esquenazis are no closer to solving the mystery of Leah’s illness than they were when she was admitted to the hospital months ago.

Leah has outlasted many dark predictions.

“On Frani’s first Mother’s Day, the doctor told her that the baby was probably not going to make it,” Zev Esquenazi said. “That was the gift she got on Mother’s Day. And, of course, she outlasted the doctor’s [prediction].”

Housing Leah in one of the best hospitals in the country is essential to her survival, but it’s not cheap. Zev Esquenazi said a social worker said the medical bills are hovering around $2 million so far. In order to be with their daughter at all times, the Esquenazis have stepped away from their jobs temporarily. Friends and strangers alike have come to their aid. In this case, their love of “Star Wars” is on their side.

Zev is a member of the 501st Legion, a worldwide organization for “Star Wars” costume enthusiasts. When Leah first became sick, he told the story to his fellow Facebook friends and “Star Wars” fans. Without asking, the 501st Legion began organizing and raising money.

A Facebook group called “May the Force Be With Princess Leah” was created and now has nearly 4,000 fans. A close friend and prop builder, Jason Watson, created a donation page for the family, which Zev Esquenazi said has been invaluable. “Star Wars” stars, such as actor Peter Mayhew (Chewbacca), Lucasfilm marketing head Steve Sansweet and “Clone Wars” voice actor Stephen Stanton have helped get the word out. Donations of props and memorabilia from Mayhew, Stanton and other supporters have been auctioned off in support of the Esquenazis. In less than 30 days, Zev said, more than $30,000 has been raised for the family. Chai Lifeline also helped with rent and food when the family needed it the most.

“Really, if it wasn’t for them coming to our aid, we would literally be out on the street,” Zev said.

Story continues after the jump.

Donations help pay for food, gas and the large insurance deductibles that the couple has been struggling to cover since Leah became sick. What’s more difficult is the unknown nature of Leah’s illness. The Esquenazis have applied for aid from organizations such as California Children’s Services but have had little success.

“That’s the other issue that we’ve been having: that you have these organizations that help kids with cancer or help kids that have (muscular dystrophy) or Parkinson’s,” Zev said. “But because she is not officially diagnosed with anything, we can’t get the help that we need.”

One doctor at UCLA speculates that between 10 and 20 percent of such neurological illnesses go undiagnosed. Frani Esquenazi said she hopes Leah can inspire and raise awareness about situations similar to hers.

“People don’t know that so many kids go through this until you go through it with your kid,” Frani said. “You feel like the only person this is happening to, but there are so many families out there.”

George Lucas’ Princess Leia asked for help from her only hope, Obi-Wan Kenobi. But the Esquenazis’ 5-month-old Princess Leah in the pediatric intensive care unit needs the help of more than just one person. Support from around the world has poured in for Leah and the Esquenazis, but more is needed.

To read updates from the family about Leah, visit princessleahdiaries.blogspot.com. Donations through PayPal can be made directly to the family through the page. To avoid PayPal fees, donors can also send checks to the address on the blog. Supporters can also like the Facebook group “May the Force Be With Princess Leah.” Monetary donations help a lot, but Zev Esquenazi said he doesn’t want supporters to feel like they need to donate money.

“For me, hope and prayers are just as important as money,” he said.

They never run out of patients


An Iranian Jewish girl was going through chemotherapy treatment — which tends to suppress your appetite — but one day, she got this craving for a lamb stew with carrots. Within an hour, someone was headed to the nearest Persian restaurant to get the dish and bring it to the girl.

Another young patient was in Minnesota for a special medical procedure. She was used to getting challah delivered to her every Friday afternoon while she was in Los Angeles. Again, just like magic, a FedEx package arrived before Shabbat with her favorite challah.

A mother and father decided, at the last minute, that they both wanted to spend the night at the hospital with their young child, who had a serious illness. No problem: a babysitter immediately showed up at their house to take care of their other children, including helping them with homework and serving them dinner.

Where did all this magic come from? Not from the Magic Castle, but from a little Jewish organization called Chai Lifeline.

For many years, because of its highly visible banner on the corner above Pat’s Restaurant, where it rented office space, Chai Lifeline was a fixture in the heart of the Pico-Robertson neighborhood.

They recently moved to a less visible but larger location a few blocks west, where they can now accommodate their growing list of volunteers. I went by there the other day and met one of these volunteers, a mother of four named Helena Usdan.

Usdan fell in love with Chai Lifeline 18 years ago when she was a counselor at their Camp Simcha back East, and helped open the West Coast office nine years ago. She told me that one the best decisions they made was seven years ago when they brought in executive director Randi Grossman, who had worked for many years at Childrens Hospital Los Angeles.

Grossman runs a cause that’s all schmaltz, but she’s all business. Perfect manners. Perfect tone of voice. Perfect answers. Still, behind the professional demeanor, she’ll choke up at a video of someone Chai Lifeline has helped.

Like little Chana Bogatz, who was born with a rare renal disease and received a kidney transplant before turning 1. When the new kidney began to fail, the doctors told Chana’s parents that she would need another kidney to survive, but the high percentage of antibodies in her system made finding a compatible donor almost impossible. So they needed to get the word out to as many people as possible.

Grossman and her staff had already become an extension of the Bogatz family, so they put on their PR hats, and in partnership with Chana’s parents, helped get three stories over several months onto the evening news about the urgent need for a kidney. By the third, a donor was found, and Chana made it.

But not every story has a happy ending.

A few weeks ago, Grossman had to cancel a breakfast meeting because one of their kids “didn’t make it.”

It doesn’t happen often, she says, but death is not something she’s comfortable talking about. That’s why they never use the word “terminal”; they say “serious” or “life-threatening.” They let God and the doctors worry about things like “terminal.”

Grossman and her group worry about the “life” part — adding joy to the life of the children and doing whatever it takes to ease the lives of their families.

Many of these seriously ill children and their families were present last week at Chai Lifeline’s annual signature event: A community-wide carnival at the Scandia amusement park in Pomona during the Sukkot festival. I was there, but I couldn’t really tell who the seriously ill children were.

I guess when kids are having a ball, it’s hard to tell them apart.

Having a ball is one of Chai Lifeline’s basic services. When I hung out in their office, at one point it felt like being in one of those creative brainstorming sessions in an advertising agency. They’re always bouncing ideas around to come up with creative ways of helping their “patients.”

A young boy with a serious illness was a big football fan. So Grossman, Usdan and the staff made some calls and found someone to donate two Super Bowl tickets, and someone else to sponsor the trip. When the boy found out about the trip, his parents said it was “the first time he smiled since getting his diagnosis.”

Over the years, they’ve used their creativity to develop a slew of different programs, like KidShops (art therapy for patients and siblings), Wish at the Wall (trips to Israel), Chanukah Angels (adopting a child for Chanukah), Seasons of Respite (separate retreats for mothers and fathers of patients), and ChaiLink (individual tutors and Web cam-based connections between classrooms and homebound or hospitalized children).

One of the best things I heard, though, was a lot more mundane: They have a team of professional advocates who help parents navigate the complex bureaucracy of insurance coverage for serious and long-term illnesses. (That comes in handy when you have an insurance company that covers an electric wheelchair but won’t cover the electric wheels.)

I couldn’t leave without asking Grossman what it was like to spend so much of her waking hours dealing with seriously ill children and their families. Isn’t it draining? Isn’t there a burnout point, when it gets just a little too heavy?

“It’s the good news,” she says. “The little moments of joy, the recoveries, the smiles on the kids’ faces, the gratitude of the parents, the generosity of all the volunteers, all those things help.”

I thought of something else that probably helps: The unspoken gratitude any of us would have to be in the position of helping people with a life-threatening illness, rather than being the person needing that help.

When I brought that up, Grossman — all choked up again — just nodded quietly.

David Suissa, an advertising executive, is founder of OLAM magazine and Ads4Israel.com. He can be reached at dsuissa@olam.org.

Films: Director examines healing from surgery, grief


Seated at his office in Beverly Hills, Ben Mittleman, 57, doesn’t have a trace of gray in his sandy-brown hair. He says his mother used to kid him that he must have had a “facelift or something,” but despite the fact that this veteran TV actor turned director-producer looks 10 years younger than his age, he underwent heart surgery in 2001.

That experience is the subject of “Dying to Live,” along with his response to the cancers that later took the lives of both his mother and his wife, Valerie. The film premieres Thursday, March 13, at Laemmle’s Music Hall, where it will screen for two weeks.

The twin cancer diagnoses occurred right around the time that Mittleman had his heart surgery, forcing him to endure almost unbearable grief, and he worked through the experience through this film, not unlike Joan Didion, who wrote the prize-winning book, “The Year of Magical Thinking,” to help her to make sense of the death of her husband, John Gregory Dunne. He died from a sudden heart attack, as their daughter was in the hospital in a coma.

Just as Didion’s marriage to Dunne was famously close, Mittleman shows in “Dying to Live” just how sublime his romance was with Valerie, whose lithe dancing in the film illustrates the free spirit he loved.

“Dying to Live” is Mittleman’s second directorial effort, following a 2004 video, “The Youngest Guns,” about L.A. Clipper players Quentin Richardson and Darius Miles. In this new documentary, Mittleman turns the camera on himself and reveals extremely private moments, including sessions with his doctors and even his therapist.

After Valerie dies, Mittleman honors her by scattering her ashes in Los Angeles, England and in Israel at the Mount of Olives. The once-hulking, 6-foot-2, 200-pound former athlete, whose TV credits include appearances on “Frasier,” “Cheers” and “Dynasty,” cries often in the documentary.

Mittleman became a stage actor in the early 1970s, shortly after his father’s death from heart disease. On the stage, he says, he learned that “theater could be a vehicle for social change, “which resonated with him, particularly because his mother, “a prefeminist feminist,” as he says in the film, had always been an activist. Later in 1988, Mittleman founded an organization called Action for Kids, dedicated to creating educational programming for children.

In a corner of his office, Mittleman has a poster of Captain America, whom he portrayed in a drug abuse program he produced in conjunction with the FBI. Mittleman also developed programs with the Anti-Defamation League and the Simon Wiesenthal Center, among other organizations, to raise awareness about the environment and to foster racial tolerance.

Mittleman, who often drops Hebrew words into conversation, grew up in a Conservative Jewish household, and Jewish influences infuse his film. He begins “Dying to Live” by singing “Letichala Riba,” a Chasidic niggun (tune) that he says is about soaring over adversity. Then he shows photos and home movies of his family at Jones Beach and Rockaway.

Later in the film, he visits the grave of his father, bowing and praying while robed in a tallit and kippah. A scene of him wrapping tefillin mirrors hospital scenes in which he has tubes coiling out of his body.

Mittleman says he never told his mother about his surgery for fear it would have consumed her. Near the end of the film, she tells him that the secrets to life lie in music and humor and from giving and receiving love. Mittleman’s father, a violinist, played professionally and constantly entertained his family at home. As an homage to his father, Mittleman says, he included the music of Jascha Heifetz and Pablo Casals and other classical musicians in the film.

Although he has not acted since his operation, Mittleman says that he would like to perform Shakespeare again. He played Barnardo and Marcellus, two guards in the opening scene in “Hamlet,” but never played the Danish prince.

“You always see yourself as Hamlet,” he says, smiling, and in the film he recites one of Hamlet’s soliloquies while standing on a rooftop, just days before his surgery.

Mittleman says he has an idea about doing a documentary in Europe. He stands up from his desk and picks up framed photos of Valerie, his mother and Catherine, the new woman in his life, a Belgian expatriate living in Paris.

Although he often cites the adage, “Man makes plans, and God laughs,” Mittleman says he is thinking of moving to France to be with her. He is likely to do so, one can gather not only from “Dying to Live” but also from a note on a board in the office adjoining Mittleman’s. Written in magic marker, it reads, “Capture your precious moments now.”

“Dying to Live” will open at Laemmle’s Music Hall in Beverly Hills on Thursday, March 13, where it will screen for two weeks. For more information, visit

Family Feud — with my family, it’s no game


I would take my mom against Clint Eastwood in any movie. Sure, he usually plays a grizzled, gunslinger with cat-like reflexes and something to prove, but if you cross my
mother, you will find yourself, like the title of Clint’s greatest Western, “Unforgiven.”

Make no mistake; this isn’t a cute story about my “zany” Jewish mother and her unswerving ability to hold a grudge. Cute stories rarely involve relatives who suffocate themselves with plastic bags, but more about my Aunt Maurine’s untimely death in a minute.

No one really knows why my mother stopped talking to her sister. I think it was something about a china cabinet that once belonged to their mother. After my grandmother died, there was a duel over the mammoth piece of furniture. My mother got it (which I only know because I grew up with it in our dining room, our only piece of furniture not from a flea market). As anyone with even one screwed-up relationship in life knows, the squabble is never about the china cabinet, but about the heap of slights and injustices that could fill it. The cabinet just stores the resentments, puts them on display.

That cabinet was my grandmother’s favorite. So was my mother, so this isn’t a family feud syllogism that’s difficult to decode. Apparently, if your parents make it obvious that you’re the favorite, your siblings hate you, they unconsciously take out their feelings of rejection and hurt on you and you become spoiled and unpleasant. Put these feelings on simmer for about 30 years, and the flavors really intensify.

Here’s the thing. I’m just guessing and speculating about all of this. All I know for sure is that after a nine-year feud, during which my aunt and mother never once spoke, Aunt Maurine effectively ended the stalemate by killing herself about six years back.

I’ve never written about it before, nor did I give it much thought, until I got into my own feud with my mom two years ago and wondered who would get the last word — or leave the feud in a stretcher.

Back to my aunt and the resounding way she stuck it to my mom by offing herself.
I should mention here that I don’t mean to be cavalier about her death or her pain; but we’re Jews. That’s how we deal. Just the other day when I was sounding depressed on the phone with my dad he asked, voice filled with concern, “Are you eyeing your plastic bag collection?”

If we took every family tragedy seriously we’d be killing ourselves. I mean, in even greater numbers.

Aunt Maurine’s death didn’t seem like one of those “cry for help” suicides, because of the aforementioned plastic bag method, a technique she got from one of those “how-to-kill-yourself” books, which was found a few feet from her body.

She left a note, too, something about how her grown children didn’t love her (a feud may have been percolating there, too; feuds are big in my family). The suicide note contained no mention of my mother. My aunt had silenced herself yet still managed to get in the last word with one final snub. Score one: Maurine.

My mother went to Aunt Maurine’s funeral, but I don’t know if she regretted the feud.

Mom has about as much gray area in her personal relationships as the linoleum floor of a 1950s diner. The point is, like Clint Eastwood, she is not likely to be lukewarm on you. There are good guys and bad guys, and once you cross over, you are dead to her.

I lived in fear of saying no to her, displeasing her in some way as to flip the off switch on her loving me. Because she raised me alone and it was just the two of us, I was so close to her that the idea of her wishing me to her emotional cornfield rattled me to my core.

In essence, I should have spent my 20s wearing a yellow ribbon because I was a hostage; I did what she wanted, gritting my teeth every second of it, but complying nonetheless. I couldn’t lose her, but I also couldn’t stand her.

If she came to visit me, she stayed however long she wanted, we ate dinner when and where she wanted, she listened when she wanted (which wasn’t often), and I basically watered and manicured my grudge garden until it was overgrown and lush, and I was often petulant and bitter. She was the kind of mother, and lots of us have them, that demand we mother them. This so flies in the face of nature that you either become the codependent wife of an alcoholic or addict — continuing to mother people you shouldn’t — or you get very, very angry. Or you get yourself some therapy. I’ve done two out of three.

Here’s where I admit something. That part of me that loved “The Bell Jar” in junior high didn’t feel so bad about the incident with Aunt Maurine and the sinister feud preceding it. It added to my “crazy family” mystique. I didn’t choose to have a family chock full of the mentally ill, but once I realized there was no way of passing them off as normal, I decided to embrace it as part of my identity.

I had met my aunt only once at a family reunion when I was kid. I remember she had red hair, wore a crisp white pants suit, lived in Orange County, seemed like she couldn’t possibly be the sister of my hippie mother and generally seemed like a nice lady. I was 6; what did I know?

I certainly never predicted I would also have a blow-up with my mother leading to a long silent feud. Curiously enough, my feud also followed a funeral. Watch out for this; in my family, one of the stages of grief is creating a vendetta with someone living.

Here was our cabinet incident: Before my stepfather’s funeral two years ago, my mother insisted I speak at the ceremony.

On completing treatment …


I have finished my eight rounds of chemotherapy. I feel like someone coming to the end of a year of mourning, about to surrender the status of “mourner” and return to
face the world without a label to describe my continuing internal struggle.

During the year of mourning, there is a road map for the interior journey — the Jewish mourning rituals. There is a prescribed destination and activity — to the synagogue to recite the Kaddish. There is a name for the inner feelings of turmoil — grief.

People are often comforted by the belief that when daily Kaddish ends, they will be freed from the bondage of grief. Some even confess, as the year comes to an end, that they become aware of a curious, unarticulated feeling buried in the psyche, that when formal mourning ends the deceased will come back.

But the dead don’t come back, and for many the first year of mourning is just the beginning. As hard as it is, it is the herald of challenges ahead, when one moves from the named status of “mourner,” protected by that designation and its prescribed behavior, into navigating the world without the person lost. It can feel like a trapeze artist working without a net. Alone, they must learn to live in a world without the person who has died. The first year is about the person who is gone. The second year is about the person who remains. It can be hard.

For almost a year, I have been fighting cancer. The next step is about returning to a normal life, shadowed by the necessity of vigilant attention to the possible return of the disease. With regular CT scans and doctors’ appointments, I will be waiting and watching.

Even as I scan the Internet for advances in the treatment of my rare cancer, and take medicine to bolster my immunity, it is a more passive response to the virulent ailment that I am told is no longer in my body. I am challenged to live in a world that is not over-determined by the daily focus on treatment and recovery while maintaining the wisdom of self-care — a lesson of the disease. I need to monitor changes in my body, while struggling to remain free from the fear and paranoia that perceives every bump and every ache as a prophet of doom.

Having lived in the shadow of my finitude, how do I return to less-heightened alert?

I am jubilant as I anticipate the return of my energy, more strenuous sessions at the gym, and a full schedule of work, study and society.

Yet there is a peculiar sense of loss. I miss the weekly pre-treatment breakfasts and walks on the beach with my friend, Doreen, and the post-treatment study of esoteric Jewish texts with my friend, Ivan. Sandwiching the distress with delight made these activities especially delicious. Also, because my fatigue obliges me to maintain a scanty dance card, anticipating time with these friends has been an even greater source of pleasure.

The months of my treatment were a loop in time. They took me from the communal calendar to a timeline determined by my unfolding needs within the structure of the medical regimen.

This is like the year of mourning: the mourner leaves the familiar progress of days to follow the prescribed timeline of the mourners’ path and reenters the common walkway of the public year once the year of mourning ends. As I flex my toes to walk again with the mainstream, I consider how I have changed and what will be different.

When Moses encountered God in the burning bush, he was commanded “take off your shoes from your feet, you are standing on holy ground.” Some commentators see the use of the word regel, which can mean both “feet” and “habit,” as an indication that Moses needed, not just to go barefoot, but also to remove the veils binding his customary perception in order to move to a higher level of discernment. Similarly, I can’t simply go back to my former life. As I return to the communal calendar, I must integrate the insight gained on the alternative timeline of illness. I need to cast aside habitual behaviors that cancer might interpret as a sign that it is welcome to return.

So it is, with mourners, who despite the hardships of mourning, often end the year with ambivalence. Having weathered the traditional stringencies of the year of mourning, they are eager to embrace the activities of normal living — to listen to music, to dance, to say amen to the Kaddish of others. Even those who have not observed traditional mourning feel relief to pass the one-year milestone. But one leaves that year as a different person, and leaving the rarified time, set aside to contemplate the meaning of life, is also a loss.

So like a mourner, trying to regain footing on the “normal” path and like Moses, without his sandals, I am a tenderfoot, turning to again walk with the crowd, striving to be mindful of the teachings of the profound realms in which I have traveled.

Anne Brener is an L.A.-based psychotherapist. She is the author of “Mourning & Mitzvah: Walking the Mourner’s Path” (Jewish Lights, 1993 and 2001), a fourth-year rabbinical student at Hebrew Union College-Jewish Institute of Religion and a faculty member of the Academy for Jewish Religion.

The great (non) depression


I overdid it yesterday. Perhaps I misjudged the line between exhaustion and sloth.

Or perhaps my recuperation from the cancer treatment requires a slower return
to fitness than yesterday’s exertion.

But this morning’s desire to stay in bed needs to be honored, unlike yesterday’s, which called forth a kick in the pants.

Some might suspect depression, but I disagree. I am finding, in my confinement, too many sources of pleasure, despite the situation. I am delighting in friends, home, books, writing, Jon Stewart, Stephen Colbert, NPR, PBS….

Besides I am pharmacologically covered for depression.

Depression is a word that has been cheapened. We forget that it is a diagnosis for a bona fide disease. It becomes a catch phrase for the weighty feelings we experience as we come to terms with life’s challenges and honor the process of change. Those who cannot tolerate taking the time and effort that normal healing requires are quick to label depression and try to prescribe it away.

Shortly after receiving a cancer diagnosis, Janet came to my office. She sat down on the couch opposite me and sank into the pillows, settling shapelessly and breathing shallowly. Finally she let out a sigh.

“I feel depressed,” she said. “I feel heavy. I can’t move. I’m paralyzed. I cry all the time. I have no desire to go on with my treatment.”

As she spoke, a trickle of tears ran down her cheek. Janet was mourning her health.

Grief is not depression. It is not a disease. The sense of heaviness and weight that we feel when we face challenges is our organism’s insistence that it is time to stop, give honor to what is lost, and surrender to the healing process. One of the symptoms is often an overwhelming fatigue triggering the fear that we don’t have the energy to face what is demanded.

This feeling sets in when there has been a death and the fires of grief have been banked and the mourner begins to sift through the ashes. In other losses, it descends when the fact of the illness, divorce or other change begins to sink in. Each labored breath exposes what has been left behind and reveals a glimpse of the obstacles ahead. While at times, we may still feel wrapped in gauze and unable to move, this so-called depression indicates that the time of numbness is over. Feeling begins to return. Sadness is palpable. We begin to comprehend the changes that have taken place and their consequences in our lives. Difficult feelings lie in the wake of this understanding. But have heart, this heaviness is a sign of life.

In this state we have no vitality. The pulse of our life force is barely detectable. So we wait. And we can’t move. The time of the broken heart is necessary to heal. There are genuine tragedies, sadnesses and injustices that cannot be denied or rationalized away when we take the measure of our lives and the changes that they have wrought. We must dwell in this valley of tears as if we are seeds, lying fallow in the earth, absorbing the moisture necessary to bring forth the sprouts of spring and the harvests that follow.

Taking time to feel, we honor the need for change. We learn about patience, surrender, acceptance and, ultimately, letting go. It can be a quiet and inarticulate time in which until we are able, literally, to come to terms with our loss.

I take issue with the word “depression.” Depression is a clinical state. It is a psychological diagnosis of something with an organic base. Although elements of the symptoms of depression and of grief have much in common, the two are not the same. Depression describes an illness. Grief is a healthy, appropriate, though often excruciating, response to loss. Loss is not just letting go, which would be difficult enough. It requires us to reconstruct our entire world. We must come to see the universe in a completely different way.

Rather than “depression,” I prefer the Hebrew word “kavod.” “Kavod” means “honor” as in the biblical commandment to “honor thy father and mother.” It also is translated as “weight” or “heaviness.” These latter translations are what people who suffer often experience.

This paralytic feeling is their organism asserting the opposite of what the culture demands. While they are urged to get over their loss quickly and get on with their lives, their bodies and souls are saying, “Stop. Feel the gravity…the weight, of this situation. Honor what is past and what is being born within you. Honor your need to broaden your understanding and come to terms with your new status and new world. Stop.”

By labeling this experience with a holy Hebrew word, perhaps we can be kinder to ourselves and less afraid. Perhaps this will encourage us to take the time we need for healing, learning its lessons and allowing it to transform our lives.
We contemplate our situation and thus give it kavod — honor. We feel the weight; the heaviness of what loss itself is about. In the process, we transform it. As we wait, contemplating our lives and the nature of life itself, we begin to heal.

I’m staying in bed this morning.

Anne Brener is an L.A.-based psychotherapist. She is the author of “Mourning & Mitzvah: Walking the Mourner’s Path” (Jewish Lights, 1993 and 2001), a fourth-year rabbinical student at Hebrew Union College-Jewish Institute of Religion and a faculty member of the Academy for Jewish Religion.

Special Delivery – When Baby Brings More Than Expected


Sarah Berger had a tough pregnancy. Berger, who asked that her real name not be used, had severe morning sickness for six months, and then was on bed rest for her last 10 weeks. But it wasn’t until her baby came home that trouble really began.

“On the third day, I remember this dark cloud descending on me…. I cried all the way home from the hospital,” she said. As she prepared for her son’s brit milah, “I started falling apart,” Berger said. “I couldn’t eat, I couldn’t sleep and I couldn’t stop crying.”

She called her obstetrician, who suspected that Berger had postpartum depression (PPD).

Experienced by about 10 percent of new mothers, PPD’s symptoms include sadness, apprehension, difficulty making decisions and changes in sleeping and eating habits. The symptoms of PPD last longer and are more intense than the tearfulness and fatigue characteristic of the “baby blues,” which generally subside after two weeks.

“Despite the common belief that motherhood automatically brings … a state of bliss and contentment, in reality the postpartum period is a time of increased vulnerability to psychiatric illness, particularly for women with past histories of depression or serious anxiety disorders,” said Dr. Vivien K. Burt, professor of psychiatry at the Geffen School of Medicine at UCLA and director of the Women’s Life Center of the Resnick Neuropsychiatric Hospital at UCLA. “We don’t know for certain what causes postpartum depression, but we believe it stems at least in part from the rapid decline in estrogen following childbirth,” she said, noting that during pregnancy, estrogen levels rise several hundred times and then drop back to prepregnancy levels within several days following childbirth.

Women suffering from PPD often fail to receive help for a number of reasons. They might be ashamed of their feelings, or they simply might not know where to turn. And not all obstetricians and pediatricians are as attuned to the condition as Berger was.

After she began seeing a therapist and taking medication, Berger quickly responded to treatment. When PPD hit again after the birth of her second child, she knew what to do.

Now Berger helps other women experiencing the condition by volunteering for New Moms Connect, a PPD support program offered by Jewish Family Service of Los Angeles (JFS). Volunteers for this free service help new moms and family members via telephone calls, home visits and referrals to community resources.

With a grant from the Jewish Community Foundation, New Moms Connect was developed as a response to calls received by JFS from new mothers “who were depressed and felt they had no one to reach out to,” said Debbie Fox, director of child and family services for JFS. “Their husbands had no understanding of what was happening, they had no understanding and their families had no understanding.”

“There’s so much pressure to be joyous when a new baby comes,” said Tamar Springer, a licensed psychotherapist who supervises the program’s volunteers. “A woman may be reluctant to come forward with her feelings…. Our goal is to decrease stigma, educate the community and help people understand that this is a medical disorder that’s not something to be ashamed of.”

So far, 10 volunteers, including Berger, have undergone training. One is a nurse and another is a dentist. All are mothers.

Berger said she chose to volunteer because she felt there was a lack of information about PPD both in the Jewish community and the community in general. She was pleased to be part of an effort to “let women know about it ahead of time instead of just getting hit with it afterward,” Berger said.

In her role, Berger listens as the women describe their situations, asks questions and makes suggestions for how new mothers can get support, whether by hiring temporary household help, attending a new mothers group in the area [see below] or seeing a physician. She often refers women to UCLA and Cedars-Sinai Medical Center, both of which offer PPD programs.

So far, she has spoken to about five women over the phone and visited two more in person. Her husband has also spoken with one of the women’s husbands. She advises new mothers “to surround themselves with what makes them comfortable” and to articulate their preferences, rather than let other people decide what’s best.

Berger, who is Orthodox, said that certain factors can intensify the problem in her community. In her lactation consulting practice, she said, “a lot of the moms I deal with … are very young — around 19 or 20 — and are extremely unprepared” to deal with the changes that a new baby brings.

When family and friends learn about PPD, their reactions can vary. Berger said that after a friend heard a mutual acquaintance talking about Berger’s PPD, the friend told Berger that her openness might result in difficulty finding a shidduch (match) for her children.

Despite such comments, Berger felt that the experience also had its benefits. “It’s taught me a lot about myself and about how I want to raise my children and the kind of person I want to be,” she said.

When Mom Needs Help
Symptoms of Postpartum Depression

  • Sad, weepy, anxious and moody feelings that fail to go away after about two weeks
  • Feelings of doubt, guilt, helplessness or hopelessness that disrupt day-to-day functioning
  • Sleeping most of the time or inability to sleep when tired
  • Loss of interest in things that normally bring pleasure
  • Extreme concern about — or lack of interest in — the baby
  • Anxiety or panic attacks
  • Fear of harming the baby
  • Thoughts of self-harm

A New Moms Connect Peer Support Group, which started June 21, is still accepting participants. The six-week session, designed for mothers with babies newborn to six months, meets Wednesday, 9:45 a.m.-11:15 a.m., at The Parenting Place at the Los Angeles Jewish Home for the Aging, Grancell Village, 7150 Tampa Ave., Reseda. The program is also sponsored by JFS and the Valley Beth Shalom Infant/Toddler Program. For information, call Donna Ramos at (323) 761-8800 ext. 1213.

New Moms Connect (323) 761-8800, ext. 1028 (calls generally returned within 24 hours).

The Woman’s Life Center at UCLA (310) 825-9989

Cedars-Sinai Medical Center Postpartum Depression Support Group (310) 423-1510

Postpartum Support International: www.postpartum.net.

My Mother’s Mostly Beautiful Heart


“Overall, she has a mostly beautiful heart” is what the cardiologist, my brother’s friend, says as we quietly stare at the beating organ on the computer screen. We’re waiting for other images, the not-so-beautiful parts, from the lab after her emergency angioplasty.

“Her beautiful heart,” my father repeats, as though the doctor had answered the enigma he was pondering.

He leans against the wall, massaging his head: “That’s why I married her. That’s what I saw from the first.”

My mother always tells their love story as a fairy-tale: He was gorgeous but into her petite, black-haired, green-eyed friend. Eventually though, my mother sparked his interest. They talked all night. And he kissed her. And her toes lit up and the bells went off. That was it. They were married in six weeks, 56 years ago. I wonder if that’s what my father is remembering. How one night, one kiss, became life.

A few minutes later the slides upload. In one, the artery’s a thread in two places, in the other, it looks normal. He says it all fast and I only hear parts.

“Ninety percent blockage … the stent worked … no clots for now.”

“Tick. Tick. Tick,” my brother says slowly, pointing to the breeches.

He’s in civilian clothes, a green Nike jacket, not his usual white one when he walks these halls.

“Bad situation, blessed timing,” I say quickly.

My father blinks behind his giant glasses. The lenses magnify the glimpses of primal fear I see, but most would miss. At 80, he’s still handsome, one of those stoic, solid-as-a-rock guys.

He’s half of AlandFlorence: one word.

He being here and she being there makes him feel out of control, isolates him. I walk over and stand close. He’s not used to being his own name in public. He’s witnessed this plenty though: Their gang of friends is dwindling quickly, especially this year. They’re the lone holdouts where one or the other isn’t dead or incapacitated — but they’ve closed ranks, conspiring not to let us all know how hard it is, or what’s going on.

“After the last funeral,” my mother mentioned matter-of-factly just the other day, “the book club had to merge with the film club and we alternate months.”

We just came from the waiting room. I brought hand-carved turkey sandwiches, chicken soup and pineapple. It’s a family trait, I think, this quixotic, quasi-mystical belief that the marriage of will and wholesome food can in some way beat back the forces of time, illness, and human loss.

My father says he isn’t hungry.

“You have to eat,” I say, handing him half like an order. He eats slowly, not like him. He is shaky.

Now it’s almost midnight. She’s getting unhooked and we’ll make a pilgrimage with her gurney across the low-lit buildings to the ICU.

My mother is groggy, but OK. I stay and my brother takes my father home.

In the morning, I bring my mother a bagel and egg white omelet and she’s ravenous. A good sign.

I tell her something about a rabbi I study with, and all that I’ve learned.

She asks if I have talked to him about her: “I was wondering because, you know, we’ve had some very difficult periods.”

She wants to hear that the rabbi said she’s right and I’m wrong. It doesn’t quite matter about what, just in principle. But there’s something below that. I think she wants me to say what’s on my mind even if she doesn’t like it, in case something bad happens.

I keep my response general and light. I say that she’s done great with her life. As far as those things that went south between us, none of that matters, I tell her. I will do my best to understand her wants, and to protect her if she can’t protect herself.

Although edited for complexity, this is the truth.

I get home and my boyfriend, Stuart, checks in. I tell him I just came from the hospital, say that this is the thing about love — mortality, the sense that love is filled with 1,000 risks of loss.

But he’s on his way to work. There’s road noise and wild winds on the 101, and it’s hard to hear. He doesn’t do well with deep conversations on the fly.

He responds with his marathon runner’s optimism: “She’s strong, looks 65 — of course she’ll pull through.” Then he tells me: “Just so you know, I bought two bottles of the Coppola your brother likes for Friday night.”

When we hang up, I think about Stuart. The one I get to love. And I know even though he’s smart and handsome and other things I’m drawn to, it’s his beautiful heart — that’s why I’ve chosen him.

By noon, my father calls, sounds like himself again: The enzymes are great, there’s no actual damage to the heart muscles, they’ve unhooked her.

“Mommy took a walk,” he says, the relief palpable.

Later that night in the ICU, the monitors are blinking everywhere. She’s trying to nap but can’t.

I swore to myself that I wouldn’t reveal a recent conversation with Stuart, but I have a deep-down fear I might not get a chance to — that she’ll die without knowing that Stuart loves me, enough to tell his brother that I’m “The One.”

I’ve almost become superstitious that she’s been waiting all this time for me to find someone to love again, and now that I have, she’s going to vanish suddenly.

So I say it fast: “Stuart talked about engagement rings. Don’t say anything to anyone, we’re not engaged yet. Period.”

“Please God” she says, waving her hand to scatter the air and ward off the evil eye.

My father is snoring in the chair, exhausted from everything.

“He is such a good husband,” she says, “the things he has done for me this year.” From the wince in her face, I know they’re not pretty things.

I’m remembering a conversation I had with my parents at a restaurant some time back.

We were talking about soul mates. It was before Stuart. I was dating and it was weird and hard and dispiriting. I couldn’t seem to figure out how love or even dating worked.

“Maybe it’s not so good to be with your soul mate,” I said. “Maybe it’s better to have more of an earthy, functional connection. Like you and daddy. Maybe it’s the secret.”

My mother looked up: “I always thought of your father as my soul mate.”

The words surprised me. I did not think of my mother as soulful or deep. I didn’t think my parents suited to each other on that level.

“I always thought you two were more pragmatic than that — a function of pure will mixed with passion.”

“Yes, I know,” she said, going back to her hamburger, “that’s what you thought.”

research4writers@aol.com

 

Life More Ordinary


I recently visited a congregant in the hospital and was surprised to find a doctor crying in the hallway. I told her I was a rabbi and asked if I could help. The doctor immediately apologized for her tears.

“It’s been a hard week,” she said, “I’ll be OK.”

She told me she had just presented a terminal cancer diagnosis to a woman in her early 40s. I felt for this doctor, and for her patient, but I also felt pleased at what I saw — a doctor who cries.

Dr. Rachel Naomi Remen, author of the books “Kitchen Table Wisdom: Stories that Heal” (Riverhead, 1996) and “My Grandfather’s Blessings: Stories of Strength, Refuge, and Belonging” (Riverhead, 2000) tells the story of how, as a young intern, she had been reprimanded by her chief resident for crying with a young couple whose baby had just died. Her supervisor told her she had let them down.

“They needed you to be strong,” he told her.

Now a teacher of physicians herself, Remen remains true to her initial impulse and teaches that crying with patients can be an appropriate response, saying, “You can burn out doing ‘meaningful’ work, if you lose the meaning.”

In this week’s double Torah portion, Tazria-Metzorah (Leviticus 13, in particular), God instructs Moses and Aaron on the role of priests when people take ill. The priests play diagnostician. They do not try to cure the sick, but they do examine people stricken with strange skin eruptions. The text — with more than enough description of skin ailments — is a little too graphic for some people. It also often seems irrelevant, as it describes practices no longer done by a priesthood that has long since faded from Jewish life.

But this portion also focuses attention on people who are not well. In order for the priest to evaluate what ails the people who are ill, he must get near to them, probably even touch them. And the priests see those who are ill more than once; they return days later to determine whether the person has recovered.

The daily tasks of the priests described elsewhere in the Torah consist primarily of animal sacrifice and temple caretaking, suggesting that priests are usually apart from the rest of the Israelites. So it is remarkable, and instructive, to imagine the priests — a part of the community — attending to the ill, taking note of those in need. Imagine Aaron, the high priest, coming to see the weak in the midst of the Israelites. Imagine a priest taking the time to speak with the afflicted among the people. Imagine the priest being the one to escort an afflicted person back into the community, declaring them free from contagion and assisting them in offering a sacrifice to God upon their recovery. Simple gestures perhaps, but imagine how welcome they would be to someone who had suffered physical pain and the worry that they might bring illness to others. Imagine how they might have restored someone’s sense of self-worth or desire to remain alive.

This past week saw another Yom HaShoah V’HaGevurah, the day of commemoration for the Holocaust and for Acts of Courage. When the Israeli Knesset years ago chose the 27th of Nissan for this annual day of commemoration, they did so amid controversy. Some would have preferred the anniversary of the start of the Warsaw Ghetto uprising, but that landed (by Nazi plan) on the first day of Passover. Still, the Warsaw Ghetto and its heroes surely figured in the minds of those who selected the week following Passover for this memorial day – the uprising itself lasted almost a month.

Irena Klepfisz, whose parents managed to get her out of the ghetto and whose father died a hero in the Warsaw Ghetto, said in 1988, on the 45th anniversary of the uprising: “What we grieve for is not the loss of a grand vision, but rather the loss of common things, events and gestures…. Ordinariness is the most precious thing we struggle for, what the Jews of the Warsaw Ghetto fought for. Not noble causes or abstract theories. But the right to go on living with a sense of purpose and a sense of self-worth — an ordinary life.”

How poignant to read her words this week as we read of the priests tending to the ill — not focused on the grander work of the Temple or the sacrifices that took place at the entrance to the Tent of Meeting.

As we read in Leviticus of the extraordinary lives of the priests, tenders of the sacred flame, preservers of the religion as it was then, I like to think also about the sense of purpose God gave them in commanding them to offer simple gestures of concern and care; I like to think about the meaningfulness they might have found in their ordinariness and in their tears.

Lisa A. Edwards is rabbi of Beth Chayim Chadashim in Los Angeles, and is also currently teaching Bible at Hebrew Union College-Jewish Institute of Religion.

 

The Circuit


Sasha Sparkles

Superskater and silver Olympic medalist Sasha Cohen lit up the runway recently at the Rodeo Drive Walk of Style event in Beverly Hills. It was a night of chowing down on yummy foods and stargazing as the Rodeo Drive Committee celebrated the illustrious careers of costume designers Edith Head (posthumous), James Acheson and Milena Canonero. The honorees will receive a permanent plaque in the sidewalk along the famed fashion destination for their contributions to the worlds of fashion and entertainment.

The event was held at the historic Beverly Hills Post Office, future home of the Wallis Annenberg Cultural Center, which showed itself to be a trendy and comfortable venue for future high-profile events.

“Edith Head, James Acheson and Milena Canonero’s acclaimed and versatile work spans nearly a century and has sparked many fashion trends that have been seen over the years here on Rodeo Drive,” said Peri Ellen Berne, chair of the Rodeo Drive Walk of Style. “Since costume design exemplifies the relationship between the fashion and entertainment industries, this was a natural category for the Rodeo Drive Walk of Style Award to honor.”

Win for Weiss

Ben-Gurion University (BGU) of the Negev recently awarded an honorary doctoral degree to American Henry A. Weiss. The ceremony and award came as a complete surprise to Weiss during his first visit to BGU’s Marcus Family Campus with his wife, Anita, and daughters, Rochelle Handy and Donna Lam, who came with her husband, Cantor Nathan Lam of Stephen S. Wise Temple in Bel Air. Professor Avishay Braverman praised Weiss for his commitment to Israel in general and BGU in particular.

“Anita and Henry are true friends of the Negev and the university,” Braverman said. “Their commitment to recruiting promising young scientists for the university and developing cutting-edge technologies will ensure Israel’s future for generations to come.”

Model of Hope

A $2 million gift from the Sheri & Les Biller Family Foundation will make possible the creation of a new center at City of Hope to assist patients and families facing cancer and other life-threatening diseases.

The Les & Sheri Biller Patient & Family Resource Center will create a new model to integrate and expand a wide range of patient support services at City of Hope, including health education, psychological services and healing arts programs, as well as end-of-life and bereavement care programs. Patient navigators, a central feature of the Biller Center, will serve as patients’ personal contacts at City of Hope and provide one-on-one attention and assistance during treatment.

The 3,000-square-foot space for the Biller Center, which will open in July 2007, will include a tranquil garden atrium, seating lounges, private counseling spaces, an activity room for support groups and classes, a computer center, a patient/family library and a meditation room.

For more information, visit ” target=”_blank”>www.standwithus.com.

 

‘Thin’ Exposes Hefty Secrets and Lies


Alisa, a 30-year-old Jewish divorcee, consumed 200 calories most days. But every few weeks, she repeatedly binged on gargantuan amounts of junk food, then purged by vomiting, swallowing diuretics and Ipecac. After several days, the mother of two usually landed in the hospital.

“I remember at one point thinking … ‘This is the one thing I want so badly, to be thin. So if it takes dying to get there, so be it,'” she says.

Alisa is one of several severely ill eating disorder patients profiled in “Thin,” the film debut of renowned photojournalist Lauren Greenfield. The raw documentary also profiles Polly, who slit her wrists after eating two slices of pizza; Brittany, a goth teenager determined to lose 40 pounds, and Shelly, who was force fed through a surgically implanted stomach tube for five years. Handheld cameras follow their rocky physical and emotional journeys at the Renfrew residential treatment center in south Florida.

The movie joins an expanding body of work on female dietary obsessions, including the PBS documentary, “Dying to be Thin”; Eve Ensler’s play, “The Good Body,” and Greenfield’s own 2002 book and exhibit, “Girl Culture.”

Her documentary focuses less on the complex causes of eating disorders than the Herculean task of recovery for patients who use food the way addicts use drugs. Polly, a shy psychiatric nurse, weighs in at 84 pounds, but blissfully talks about the days when she sucked food out of her feeding tube with a syringe. Brittany reminisces about the “chew and spit” game she used to play with her mother: “We’d buy bags and bags of candy and just chew it and spit it out. We just thought of it as a good time.”

During 10 intense weeks at the center, Greenfield learned that while societal pressures often trigger eating disorders, they are actually mental illnesses with grim statistics. Anorexia is the deadliest of all psychiatric disorders, according to the American Journal of Psychiatry, with mortality rates of up to 20 percent. No statistics exist on Jewish women, but experts say they may be particularly vulnerable, in part, due to more zaftig body types and the drive to look all-American (i.e. svelte).

All seriously ill patients are tough to treat: “Secrets and lies are a big part of eating disorders, because you have to hide your habits from friends and family,” Greenfield explains from her Venice, studio. “At Renfrew, women would clandestinely jog in place in the shower, or conceal weights in their clothing to cheat the scale.”

The center’s rules, therefore, are strict. When Polly arrives at the clinic, staff members promptly search her luggage and whisk away “contraband” such as cigarettes and prescription drugs. In another scene, the usually feisty Polly is obliged to eat a cupcake for her birthday, which she consumes slowly and with disgust. Afterward, she cries bitterly.

Alisa also appears pained when required to sketch a silhouette of herself, which she draws as an obese figure — though after a month at Renfrew she is healthily trim, with an uncanny resemblance to Natalie Portman. She traces her eating disorder to age 7, when her pediatrician declared her fat and she was placed on a 1,000 calorie per day diet.

On camera, she does not discuss how her Reform background fueled her disease, but she answered e-mailed questions through Greenfield.

“Alisa believes that Jews are a proud people; they are very concerned about self-image and there is a strong emphasis on education and money,” the director says. “She thinks that makes for more of a need to overachieve and be perfect, which can drive an eating disorder. So her sense is that being Jewish contributed a lot to her [illness].”

The filmmaker, who is also Jewish, relates to her subjects because she was once obsessed with the scale. At 12, she began physically comparing herself to the other girls at Camp JCA Shalom in Malibu and went on to become a chronic teenage dieter. At Harvard University, she “went on a crash diet and lost 26 pounds, in the process gaining so much confidence that I threw myself into my first serious relationship,” she says.

Eventually Greenfield — named one of 25 top photographers by American Photo magazine — dedicated much of her career to chronicling how the Barbie-doll culture scars women. But her 2002 book only touched upon the life-threatening topic of eating disorders, save for several pictures snapped at Renfrew. The artist remained haunted by one of a gaunt patient standing backwards on a scale so as not to see her weight gain.

In June 2004, Greenfield returned to Renfrew with cinematographer Amanda Micheli to further explore the subject, this time in a cinema verite-style film. But she found that earning patients’ trust proved difficult.

After many setbacks, Greenfield won them over by showing she would turn the camera off whenever she was asked to do so. Polly made the request while on a suicide watch, but changed her mind after the director spent the night talking with her. She allowed Greenfield to shoot her purging her breakfast the next morning, an act that is almost always done in secret and is forbidden at the center.

Alisa also purges on camera, but expresses a moment of hope during one group therapy session.

“For a fleeting moment I imagined a better life,” she says. “And maybe — pun intended — I can taste recovery.”

“Thin” will screen at the Sundance festival Jan. 19-29 and on HBO this fall.

 

Many With Gaucher Unaware of Disease


When Jewish New Yorker Joan La Belle, now 70-something, was in her mid-20s, she began to experience scary symptoms, suggesting a serious health problem: “I felt exhausted, had rough menstrual periods with very heavy bleeding and terrible nose bleeds.”

She also suffered substantial hemorrhaging in childbirth, she said in a recent telephone interview from Minneapolis, where she has been a longtime resident.

Hemorrhaging and an enlarged spleen — another of her symptoms — are often misdiagnosed as leukemia, and bone pain is often mistaken for arthritis, so La Belle said that she really didn’t know the actual cause of her symptoms for years.

Finally, 15 or 20 years ago, a Jewish physician filling in for her regular internist correctly recognized her enlarged spleen as an indicator of Gaucher (pronounced go-SHAY) disease, to which Jews are especially susceptible.

Gaucher is sufficiently rare that many doctors weren’t and still aren’t aware of it. And when LaBelle was diagnosed, “they were just doing research, and there was not a glimmer of hope” for a treatment, she said

But then, medical researchers produced the enzyme regimen that LaBelle needed, and for the last 12 or 13 years, she has received regular infusions that have dramatically improved her life, she said. These enzyme treatments completely control her symptoms, LaBelle reported.

“Prior to the [enzyme therapy], I used to have hemorrhaging and my hemoglobin was very low,” she said. “But, now it’s normal.”

LaBelle receives intravenous infusions of the latest formulation of the enzyme, called Cerezyme, at a local Minneapolis hospital every other week. It takes 60 to 75 minutes, she said. The length of time per patient varies, depending on the number of units a patient needs.

LaBelle said “every couple of months” she has a “bone crisis,” which is an event of intense pain that occurs because of a sudden lack of oxygen in an area where Gaucher-affected cells have interfered with normal blood flow. The episode can last for hours or days. She said she treats the pain with medication.

Based on statistical probability, half of the Gaucher patients at the Lysosomal Diseases Treatment Center at Children’s Hospital of Wisconsin should be of Ashkenazi (Central and Eastern European) Jewish heritage.

In fact, however, only one of the eight Gaucher patients, though not Jewish, believes he has Ashkenazi ancestry. The reason could be the lack of knowledge about the disease, said genetic counselor Amy White, who works at the Lysosomal Diseases Treatment Center.

This means that many people who are at risk or suffering have not been diagnosed or treated. The disease is not thought to be life threatening, but it’s chronic and painful and doctors frequently mistake the symptoms for something else. However, even when it’s recognized, treatment remains extremely expensive.

The undiagnosed cases are probably due to “a lack of awareness among both medical and lay communities,” according to the National Gaucher Foundation (NGF).

So this year for the first time, the NGF designated a “National Gaucher Disease Awareness Month” in the hope of educating health-care providers and the public about the importance of recognizing the signs and symptoms of the disease. The results of this effort, which took place in September, are not conclusive, but researchers and advocates especially wanted to reach the Jewish community, where this often painful and debilitating — but highly treatable — disease is most prevalent.

According to the National Gaucher Foundation, Gaucher disease occurs when a person inherits a mutated gene from both parents, but if the person inherits a mutated gene from one parent and a normal gene from the other parent, he or she will not have the disease but may be a carrier. A carrier may pass the gene on to the next generation, depending on the genetic makeup of the person he or she marries.

White said that the Lysosomal Treatment Center has a lot to offer Gaucher patients, in addition to the life-changing Cerezyme infusions. Despite being located in Children’s Hospital, the genetics center, headed by Dr. William J. Rhead, chief of the generics department, does not limit its services to children.

“We see any individual or family who has a genetic condition,” White said. “We provide an initial evaluation and make recommendations as to specialists in Gaucher disease.”

The center also provides semiannual or annual evaluations of the course of a patient’s disease, as well as its treatment. It takes X-rays, does bone MRIs and CTs of the liver and spleen and conducts specialized blood tests for Gaucher Disease markers. These tell a patient how the disease is progressing and whether the Cerezyme dosage is adequate.

In addition, the center provides genetic counseling to couples contemplating pregnancy, as well as to expectant parents. It also counsels patients and their families on the psychosocial aspects of the disease.

The genetics center can assist Gaucher patients with medical insurance issues, an important service because of the cost of Cerezyme.

A version of this article was first published in the Wisconsin Jewish Chronicle.

 

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” class=”boldbluelinklmenu”>Lack of One Enzyme Triggers Illness

Community Braces for Flu Shot Scarcity


 

Michael Gabai is on a quest.

The owner and administrator of Ayres Residential Care Home has spent the last two weeks calling physicians, senior centers, grocery stores and pharmacies in search of flu shots for about half of the 18 residents in his facilities who have been unable to get one. Gabai was finally able to secure a reservation for his oldest resident, a 96-year-old, to get vaccinated at a grocery store about 10 miles away.

“We’re scrambling to get it done, Gabai said. “We know how easily [flu] can turn into pneumonia for our elderly clients.”

With the flu vaccine shortage becoming a national — and political — crisis, people working with seniors, like Gabai, are the most troubled.

“Flu is always a concern,” said Molly Forrest, director of the Los Angeles Jewish Home for the Aging (JHA). Vaccinations are normally given to all of JHA’s residents and frontline caregivers willing to be inoculated, she said. However, JHA has not yet received its supply of vaccines from the Los Angeles County Department of Health Services, which has promised to deliver them late this month or early in November. Flu season generally spans from November to March, and affects between 10 percent to 20 percent of Americans.

During the 2003-2004 flu season, there were 1,600 deaths from influenza and pneumonia in Los Angeles County, according to the Center for Disease Control. Also, over the last five years, nearly 90 percent of all deaths from flu andpneumonia were among those 65 or older.

Forrest believes they will get adequate amounts of vaccine to cover the residents, but thinks they might need to seek additional doses for frontline staff.

During her nine-year tenure, Forrest said that JHA had not experienced any serious flu outbreaks. When cases have arisen, they have isolated individual buildings or patients in order to contain the spread of the disease.

Jewish Family Service’s (JFS) Valley Storefront and West Hollywood Senior Center had to cancel scheduled flu shot clinics when the Red Cross failed to deliver vaccines as promised, said Lisa Brooks, one of the agency’s directors.

“We’re waiting to see if more supplies become available,” she said. Directors of JFS’s senior centers are in close contact with sources of the vaccine to find out when that might be.

Additional flu shots might soon be forthcoming from drug manufacturer Aventis Pasteur. The majority of its 22.4 million doses, which were promised but not yet shipped to customers, will be routed to entities designated by the Centers for Disease Control and Prevention (CDC) as priorities. In addition to seniors, those considered most at-risk of developing potentially life-threatening complications from the flu include children under 2 years old (the vaccine is not recommended for babies younger than 6 months old), individuals with chronic medical conditions and pregnant women. According to United Press International, CDC Director Dr. Julie Gerberding said the agency is mapping areas where the vaccine has been sent and those where it is needed and also tracking flu cases by county to quickly identify flu hot spots.

The flu shot shortage does not seem to trouble early childhood educators.

“I don’t think at this time anyone is particularly panicking,” said Betty Zeisl, director of public relations and communications for the Bureau of Jewish Education (BJE), who noted that at a meeting of early childhood center directors last week “the subject didn’t come up.” (While BJE facilities must conform to federal, state and local guidelines, protocols for dealing with illness are determined by each individual center.)

“I don’t think [the shortage] is going to affect us,” said Angie Bass, director of the early childhood center at Temple Beth Am, who believes that sensationalized media reports are needlessly scaring parents. Bass said that the school maintains routine health precautions such as undergoing regular cleaning, a hand-washing policy for staff and students and a practice of sending children home if they need to wipe their noses more than three times in a 15-minute period.

Bass said that “if it really looked like a real epidemic and not just media hype,” she would send home a letter informing parents and include advice from pediatricians. Thus far, however, none of the pediatricians she has consulted have expressed concern.

“As soon as the pediatricians are worried, then I’ll worry,” she said.

“I think it is a potential problem,” said Dr. Carol Berkowitz, professor of clinical pediatrics at Harbor-UCLA Medical Center in Torrance and president of the American Academy of Pediatrics. “We never know how serious a flu season we will have.”

At the same time, she said that last year was the first year that vaccination was suggested for healthy children between 6 and 24 months.

“Flu vaccine has never been recommended for healthy children over the age of 2 years,” she added.

Berkowitz and others emphasize the importance of following CDC recommendations to help prevent flu. These include avoiding close contact with people who are sick, staying home from work or school if you are sick, covering your mouth and nose with a tissue when coughing or sneezing, avoiding touching your eyes, nose or mouth and washing your hands frequently. Certain prescription antiviral medications (oseltamivir, rimantadine and amantadine) can either prevent the flu or lessen its symptoms if taken promptly after exposure to the virus — or soon after symptoms begin. Symptoms may include fever, headache, chills, body aches, dry cough, stuffy nose and sore throat.

Unfortunately, even if individuals take precautions, they cannot control the habits of others. As the JHA’s Forrest notes, this is especially true for the most vulnerable populations.

“The very young and very old, who get help from other people, are incredibly at risk because they depend on someone else’s hygiene,” she said.

 

Schizophrenia With a Dash of Schmaltz


When Iris Rainer Dart’s cousin was diagnosed with schizophrenia decades ago, the illness sent shockwaves through her Jewish family. “They were from the shtetl and superstitious,” said Dart, 59, the best-selling author of 1985’s “Beaches.” “They thought that the illness was a curse, that the parents must have done something wrong and that it was perhaps contagious.”

Dart’s cousin was spoken of in hushed tones and kept behind closed doors, a fate that haunted the author.

“I’ve always carried with me the wishful thinking that had I been older and had the resources I could have become involved in her life and made a difference,” she said.

That wishful thinking led Dart to write a novel, “Some Kind of Miracle” (William Morris, $24.95), to be published Oct. 21, about a Jewish schizophrenic and the cousin who helps her. As young women, Dahlia and Sunny Gordon are best friends and songwriting partners, but they’re separated when Sunny develops schizophrenia and disappears into the mental health system. Years later, Dahlia, a frustrated songwriter, needs the rights to one of their songs and tracks Sunny down to a halfway house for mentally ill adults.

In going to find her cousin, the previously flaky Dahlia “takes on the responsibility for her care and reintroduces her to the music they wrote and the possibility of an independent life,” the author said during an interview in Malibu.

“Miracle,” which like “Beaches” revolves around a dramatic, lifelong friendship, is Dart’s latest three-hanky book; she outdoes fellow women’s novelists, such as Jackie Collins, with her proclivity for tear-jerkers (even The Rock said “Beaches” made him cry). The author, who peppers the angst with laughs, is proud of the distinction: “I do schmaltz,” she said.

But it’s schmaltz with a message.

“All my work is about finding meaningful human connection,” she said.

Dart, née Ratner, learned the concept from her Lithuanian-born father, who assisted fellow immigrants at a Pittsburgh settlement house where he ran milk programs for poor children, among other efforts.

“We had no money,” the writer recalled of her childhood. “We lived in a tiny house that was always falling apart. But … I don’t remember ever feeling deprived or unhappy. I give credit to the Yiddishkayt.”

When the teenage Dart began writing songs with her cousin, not unlike the fictional Dahlia, she naturally migrated toward performing at charitable groups, such as the Bikur Cholim society.

“We’d go around to all the organizations and meet with the women and write their stories up into a show,” she said.

Dart eventually studied theater arts at Carnegie-Mellon University; she moved to Los Angeles to become an actress in the early 1970s and changed her surname when a manager called Ratner “too Jewish.”

“[But] I was a terrible actress,” she said.

So she switched to writing and landed a television job with the diva Cher, where she was the only woman in the writers room.

“Every day I’d sit next to her in her dressing room as she made herself up and we would talk,” Dart said of her tenure on “The Sonny and Cher Show.” “I became fascinated by this kind of a woman: uneducated, but streetwise and funny, who operated by the seat of her pants.”

Cher became the inspiration for “Beaches” heroine CC Bloom, ultimately portrayed by Bette Midler in the 1988 film adaptation of Dart’s novel. The story focuses on the Jewish Bloom and her blue-blood best friend, played by Barbara Hershey in the movie; their relationship mirrors one of Dart’s friendships from the 1980s.

“At the time, I was between marriages and living this wild, Hollywood single life, while my friend was happily married and living in Cleveland,” she said. “She’d come and stay with me in Hollywood and think, ‘This is so exciting,’ and I’d visit her in Cleveland and go, ‘This is wonderful, I want this.'”

Dart went on to write a total of eight novels, including “‘Til The Real Thing Comes Along,” “The Stork Club” and 1999’s “When I Fall in Love,” about a TV writer who falls for her physically disabled boss.

She began “Miracle” two years ago, when she was impressed by the co-founders of “The Friendship Network,” an organization that provides social programs for schizophrenics living alone. With her mentally ill cousin in mind, she immersed herself in research, interviewing psychiatrists and pharmacologists, and reading about the latest drug therapies, among other endeavors.

The story of the two women — one feckless, one disabled — “is a ‘Rain Man’ for women,” she said. “It’s really about advocacy.”

The concept comes from her Jewish roots: “In Judaism, we’re supposed to be taking care of one another,” she said. “It’s about repairing the world.”

Dart will read from her new novel Nov. 4, 6-8 p.m. at Dutton’s Brentwood Bookstore, 11975 San Vicente Blvd., Los Angeles, (310) 476-6263. For information about The Friendship Network, visit www.friendshipnetwork.org.

Arts & Entertainment Editor Naomi Pfefferman contributed to this story.

Preteen Advocate Educates Nation About Diabetes


At first glance, Emma Klatman’s summer vacation sounds like that of a typical 11 year old. She attended summer camp and traveled to Washington, D.C. Instead of merely a participant at camp, however, Klatman was a featured speaker. And in our nation’s capitol, she came not to sightsee but to lobby legislators.

Klatman serves as the American Diabetes Association’s (ADA) 2003-2004 national youth advocate. Her duties entail promoting research and public policies relating to diabetes, and visiting diabetes summer camps to involve other children in the fight against the disease.

“Emma acts as an ambassador on behalf of all children with diabetes,” said Stewart Perry, chair of the ADA’s National Government Relations and Advocacy Committee. “She puts a face on diabetes in children.”

Perry accompanied Klatman on her recent legislative visits in Washington, D.C., where she urged Sen. Dianne Feinstein (D-Calif.) and aides to Sen. Barbara Boxer (D-Calif.) and Rep. Diane Watson (D-Culver City) to increase funding for research and to insure that diabetes medications be covered under Medicare.

Adapting to her new role like a pro, Klatman presented her case to a supportive Feinstein as the senator walked from her office to a hearing.

“People don’t want to talk to kids when they’re in a hurry, but she did,” Klatman said.

Klatman’s interest in acting (she also attended the Youth Academy for Performing Arts this summer) and a natural poise gives her the confidence to lobby effectively. In one instance, she pulled out her “finger stick” and pricked her finger to show what it’s like to check blood sugar — a constant necessity for those with diabetes.

Visiting diabetes summer camps for children in Illinois, Missouri and Wisconsin, Klatman told the young campers that they can also be advocates, whether by helping other children understand how to manage their disease or by contacting a legislator about important issues. She said this enables children to “gain self-esteem and think that you really make a difference.”

Perry said that youth advocates like Klatman can be more effective than adults in showing children that they “can live a normal, happy, healthy life with diabetes if they take care of themselves.” Her example, he said, shows “this is what you’re capable of — what you can aspire to be.”

Klatman was diagnosed with Type 1 diabetes at the age of 7. She is one of the more than 13,000 American children annually diagnosed with Type 1 diabetes (previously known as juvenile diabetes), which involves a failure by the body to produce insulin. With overweight and inactivity increasing among U.S. children, more cases of Type 2 diabetes are now being seen in children and adolescents. In the past, Type 2 diabetes was considered an adult disease.

Prior to her diagnosis, Klatman experienced symptoms typical of diabetes — she was drinking and urinating frequently, felt constantly hungry and often fatigued. It was at a Purim celebration at Temple Beth Am that her parents realized something was seriously wrong. Her father, Chris Klatman, recalled noticing that Emma appeared peaked, and assuming that she needed something to eat. He bought her more hamantashen and soda, which only served to further elevate her blood sugar. A trip to the doctor quickly confirmed diabetes, and Emma’s life changed from that day forward.

Today, she wears an insulin pump, a blue plastic device that resembles a slightly oversized pager, which is attached to a tube under her skin. The pump automatically administers insulin throughout the day and Klatman presses a button to inject additional insulin based on the food she consumes. She must check her blood sugar levels at least six times a day by pricking her finger and placing a drop of blood in a small device called a glucose meter. Like all people with diabetes, Klatman must keep tight control of blood sugar levels since low levels (hypoglycemia) can lead to loss of consciousness and high levels (hyperglycemia) can eventually cause kidney, nerve, blood vessel and eye damage.

“Sometimes I get so mad that I have to test 10 times a day and I’m not like most kids…. I have something to worry about and they don’t,” Klatman said.

But she said the process has become routine, and even generates admiration among her peers.

Klatman is quite matter-of-fact about her disease and her ability to accomplish her goals. With her youth advocate duties involving monthly travel, she said, “I’ll have to work twice as hard with school, but I’m capable.”

In some ways, Klatman’s illness seems to take a greater toll on her parents, who believe research — particularly stem cell research — may hold the key to the cure for this and other diseases. Until then, her mother, Carol Eisner, noted, “As parents, we’re never relaxed. We really deal with life with Emma test by test.”

While Emma said she can eat anything, her mother elaborates that “eating is never, ever the same…. It’s like keeping strictly kosher: Every single bite that goes into your mouth has thought behind it. For every morsel [you need to ask]: How many carbohydrates does this have and how many units of insulin do I have to give myself for this?”

Because of the frequent need for diabetics to monitor blood sugar levels, one of the ADA’s top priorities involves insuring that children with diabetes be allowed to check glucose levels and inject insulin where and when they need to at school, rather than being forced to walk a distance to the nurse’s office or another isolated location.

Perry talks about other barriers children with diabetes may encounter in schools. “They’ve been told they can’t play football. They can’t be cheerleaders. They can’t go on field trips,” she said. “We want kids with diabetes to be treated no differently than any other kid — not segregated and not discriminated against.”

Emma reflected on what having diabetes means to her.

“I don’t like to refer to myself as a diabetic. I refer to myself as someone with diabetes. It’s something that [requires me to do] more in my life. But I’m still Emma.”

For more information on diabetes, e-mail nya@diabetes.org  or call 1-800-342-2383.

Big Screen, Bigger Picture


Rabbi Ari Hier doesn’t like to just watch nonfiction films, he likes to ask questions about them — usually Jewish questions.

"My motivation has always been, ‘What questions would I ask the filmmaker at my own dinner table, no holds barred?’" said Hier, the director of the Simon Wiesenthal Center’s Jewish Studies Institute (JSI).

Presuming that others share in his curiosity, Hier has launched "Take Two," a free discussion series sponsored by the JSI, featuring films produced by "Point of View," which, according to the PBS Web site is "public television’s premiere showcase for independent, nonfiction films."

From films on the killing fields of the Khmer Rouge regime of Cambodia and civil war in Sudan to mental illness and homelessness in America, the series will allow viewers to take a second look from a Jewish perspective.

"We felt that we wanted to be very diverse," Hier said. "We will show a Jewish film now and then, but I believe that the world interfaces with Judaism all the time. We live in a world, not just a Jewish community."

"Take Two" began on July 20 with Joscelyn Glatzer’s "The Flute Player," a new documentary about Arn Chorn-Pond, a Cambodian musician who survived during the brutal Khmer Rouge regime by playing propaganda songs on the flute for his captors. Hier and two Cambodian guests led an audience discussion examining issues such as what Judaism says about life-and-death decisions, and whether Judaism has a monopoly on the term "Holocaust."

The discussion was heated. "Some [Cambodians] said that God went out the window," Hier said, noting that it bothered a number of the religious audience members.

But he hopes the series in general will cause people to think about things in a new light.

"My goal isn’t necessarily to move people to be involved in that particular cause," Hier said, "but to articulate and sharpen their own thinking."

The series continues on Aug. 17 with "West 47th Street," a portrait of four people struggling to recover from serious mental illness; and on Sept. 14 with "The Lost Boys of Sudan," which follows two young refugees of the Dinka tribe, who were forced to flee and resettle in the United States. To R.S.V.P., call (310) 552-4595 ext .21.

The Art of the Matter


When artist Ted Meyer was first diagnosed with Gaucher disease, a lipid-storage disorder that is the most common genetic disease affecting Jews of Eastern European descent, he used his artistic talents to express his pain.

Now fully recovered due to breakthroughs in treatment, the 44-year-old, who is also a designer, illustrator and the author of two books, reflects on the progression of his work in relation to the course of his illness.

In October, Meyer’s two exhibits, "Structural Abnormalities" and "Scars" will be on display at the Biola University Art Gallery in La Mirada. The artist began the former series about 10 years ago when his illness was in full swing. Gaucher disease, caused by a genetic mutation, primarily consists of bone pain and damage to the shoulder or hip joints as a result of an enzyme deficiency. Meyer had a hip replacement and will undergo another this November, although he is now healthy and receives enzyme replacement every two weeks.

Although his illness has been compared to Tay-Sachs because of its association with Jews, Meyer doesn’t relate Gaucher disease to his religion. "It doesn’t come into play because African Americans have Tay-Sachs. I just see it as evolution," said Meyer, who said he feels "culturally Jewish, but not religiously Jewish."

"Structural Abnormalities" depicts images of skeletons crouching and kneeling, as if locked inside the boundaries of the canvas. "I started the skeleton paintings about six months before I had my first hip replacement done. I was at the point where I couldn’t walk very well and I felt very trapped in my own body," explained the New York native. "So, I started these contorted, painful skeletal images. Many of them are sort of compressed, which is how I felt." As his symptoms subsided, the figures in the series became rounder and fuller than the earlier works. Most of them also include more than one person, symbolizing the end of his own isolation.

"I started bringing in the outside world," Meyer said. "I was healthy and I wanted to be excited about that." Several paintings from "Structural Abnormalities" were included in the high-profile "eMotion Pictures" exhibit, which toured the Chicago Cultural Center, the United Nations and is currently continuing its U.S. tour.

Meyer’s second series, "Scars," was inspired by a woman he dated who had an 18-inch scar from when she broke her back and, as a result, was wheelchair bound. "I would see her back at night as we slept," he remembered. "I liked the shape of the scar." Meyer felt the visible memory of the wound revealed his friend’s strength and uniqueness. He took an imprint of the scar and then created a painting, which he felt was, in essence, a portrait of the woman herself. "It really marked where her life had changed," he said.

Meyer’s girlfriend encouraged him to reach out to others, as she was very active in the disabled community. "She really got on my case and felt that I lost touch with my psyche because I was now healthy and I wasn’t relating." Meyer first displayed his new piece in the Art Walk, an exhibit at Brewery, the world’s largest artist complex, located in Los Angeles, which he has called home for the last five years. People were fascinated by the piece and even approached him with their own scars and the stories behind them. From there, Meyer began a collection of the scar paintings.

While he admits that his work doesn’t appeal to everyone, most art enthusiasts feel the paintings are very powerful. For those who have had surgery, viewing Meyer’s work can be cathartic.

"I’ve had people come to the studio and just break out crying," Meyer said. "That’s what every artist wants: To resonate with people." The upcoming exhibit will include 16 pieces from the series.

As for the scar bearers, the experience of seeing reminders of their past pain transferred to the canvas has been a positive one: "Many people say, ‘I never thought anything good could come from this scar and now it’s going to be art,’" Meyer revealed.

As his work progressed over the years, he feels he’s able to reach out to others in a way he was once unable. "My art work has gone from being very ‘Ted-centric’ to being about everyone else," the artist said.

Ted Meyer’s exhibits can be seen at Biola University Art
Gallery, 13800 Biola Ave., La Mirada, Oct. 7-27; 9 a.m.-9 p.m. (Monday-Friday),
noon-5 p.m. (Saturday). Meyer will be at the gallery Oct. 8 from 6-9 p.m. For
more information, call (562) 903-4807. For more on Meyer’s artwork, visit www.artyourworld.com .

Meeting Dr. Soulmate


Somehow, the universe knows. It knows when you have on a fresh coat of MAC lipgloss, some cute heels you got on sale at Charles David and clean hair that’s looking halfway decent. It knows. That’s the night you won’t meet anyone.

If a principle is true, then so is its opposite, which I proved by meeting the future Mr. Strasser in a Utah emergency room, between bouts of moaning in a fetal position and dry heaving. To be honest, the future Mr. Strasser probably has no memory of me other than in his notes: "Patient presents with fever and severe stomach pain. Possible pancreatitis. Please refrain from asking her out because that would be unprofessional even though you’re obviously unbearably attracted to her." OK, I added that last part.

It’s hard to imagine that I could have been less delectable. In Salt Lake City for work, I woke up one morning with searing stomach pain. I called my mom, tried every remedy in the hotel gift shop and wept for about six hours before giving in and finding the nearest hospital.

A co-worker drove me there, and as we pulled up to the ER, we passed a landing pad for trauma choppers. Kind of put my tummyache in perspective, but man did I feel bad; I couldn’t eat, couldn’t walk upright and I had the green-hued sheen of an extra on "Six Feet Under."

After checking in, I was given a room next to another woman named Teresa, a psych patient who couldn’t stop shouting "Who took my shoes?" I don’t know, Teresa. The Crazy Fairy? When the nurse told her to lower her voice, she said, "I can’t hear myself until I talk loud."

Oh, really? Well, I can’t stop heaving and the sound of your voice is about as settling to my stomach as last week’s sashimi.

Just when Crazy Teresa (and I call her that so you don’t get confused) got sedated, a 19-year-old named Amber came in screaming, "It’s my birthday. You don’t know what it’s like to be a junkie! I haven’t eaten in two days." Whatever happened to broken bones and slingshot wounds? I wished Amber happy birthday, gave her all $7 in my wallet and shuffled back to my room, holding my gown together in back.

Moments later, my doctor appeared. Cue the violins and gauzy light because no way an intern in the ER could be that gorgeous. He adjusted his wire-rim glasses and tucked a loose tangle of long blond hair behind his ear.

He introduced himself and I thought, "Mr. Strasser, what are you doing in Salt Lake City? Do you realize we’re getting married? I think I love you." (I should mention here that I had a high fever and may or may not have been delirious.)

Now, there are many conversational topics that are nice for that first meeting with one’s soulmate: the weather, favorite movies, work, religious beliefs, politics. One topic that doesn’t make that list is bowel movements.

"Have you had any bowel movements today? Are you having diarrhea? Are your bowels discolored?" Dr. Soulmate asked.

On the one hand, decent medical care required that I be honest, on the other, human dignity required that the color of my stool be between my maker and me.

My health won out. "To tell you the truth, doctor, it’s sort of puce."

"Puce? I’m not sure what color that is," he said.

"It’s kind of brownish-purple." Great, now I’m trying to explain to the doctor that puce is the new brown. This was not going well.

"Married or single?" he later asked.

Did he really need to know, I wondered? Or was he secretly saying that he too felt our union was destined?

"I’m not sure what’s wrong with you," he said. "I’m passing you along to my attending." That must be doctor speak for "It’s not you, it’s me."

Of course, if he had made advances toward me, I would have thought he was sleazy and unprofessional and quite possibly had a puce fetish I could never accept or understand. It was a lose-lose-lose my lunch situation. We were star-crossed lovers, doomed. Still, if he had actually noticed me, he might have overstepped the rules of propriety and I might have overlooked his overlooking and it would all be a cute story — except the part about the puce.

He left with me with an IV of nausea medication and the attending physician, a very nice, very butch-looking woman who shut Amber up with one stare. She sent me home with a prescription, a diagnosis of heat stroke, directions to eat only food I could see through and the fantasy that somewhere in Utah, a young intern is pining for me, wishing we could have met under circumstances that were easier to stomach.