When Jenni Kleinman Berebitsky was diagnosed with ALS, she was given just 18 to 24 months to live. Yet Berebitsky, a Jewish-American heath care practitioner, wife and mother, lived for more than a decade before her death this past August at age 43 in her hometown of Indianapolis.
Just five to 10 percent of people live over 10 years after being diagnosed with ALS, said Berebitsky’s mother, Joyce Kleinman. Not only did Berebitsky prove her doctor wrong, she lived a full life to the end, even challenging herself by participating in two triathlons. Kleinman said her daughter lived “much, much longer than we could have ever imagined possible.”
Before Berebitsky died, her life was celebrated in a short documentary film, “Grateful — the Jenni Berebitsky Story,” by director/producer Paul Nethercott and producer Amy Pauszek.
They launched the project in October 2017. Berebitsky got to see the film when it premiered last July — the start of a successful film festival run that included snagging the Jury Prize Best Short award at the recent YES Film Fest in Columbus, Indiana.
Poignantly, Berebitsky died three days after “Grateful” was screened at this August’s Indianapolis Jewish & Israeli Film Festival. The screening took place on a Monday night, Kleinman recalled. Her daughter had gone to “every other film festival within driving distance,” but this time Kleinman went alone. The film won the Best Documentary and Audience Choice award at the festival.
“I feel honored and humbled to have shared Jenni’s incredible inspiring story that has touched hearts not just in the United States but all over the world,” Pauszek told The Times of Israel via email.
Upcoming screenings include a November 7 showing at the Indiana Conference for Women, the largest women’s conference in the Midwest, according to Pauszek, with celebrity speakers such as Rachael Ray, Joy Bauer of “The Today Show,” and Oprah Winfrey’s former longtime producer Sheri Salata.
The 17-minute film presents Berebitsky throughout her battle with amyotrophic lateral sclerosis or ALS, a disease that currently has no identified cause or cure. Recent years have seen attempts to increase awareness through the Ice Bucket Challenge fundraisers, one of which is shown in the film for Berebitsky.
“ALS is a tricky, tricky disease,” Berebitsky says in the film. “Just when you think you’ve got it figured out, and you think, ‘I can handle this,’ something else is taken away.”
Berebitsky was diagnosed in March of 2009, while she was pregnant and after she had completed the first part of her residency as a naturopath.
“She was noticing symptoms even before she was pregnant,” Kleinman said, adding that these symptoms did not go away after Philip was born.
“I convinced myself it was MS,” Berebitsky says in the film, referring to multiple sclerosis. “It fit the profile… The doctor knew better. He took one look at me and my quivering tongue,” and with his diagnosis of ALS, her life would “not ever… be the same.”
“Oh my God, it’s the worst,” Kleinman recalled thinking. “People lose their ability to move, swallow, talk.”
In a blog post Berebitsky co-wrote with her mother for Psychology Today two weeks before her death, she explained that taking a course on personal development helped her in the wake of the doctor’s diagnosis.
“This course helped me see that I had a choice: I could give up, accept my prognosis as the truth, and ‘die’ inside, choosing to just exist until my body dies,” Berebitsky wrote. “Or I could choose to live every minute of every day until I actually do die.
“Now, 10 years later, this is what I’ve done with those 18 to 24 so-called ‘months to live’: I practiced naturopathic medicine, traveled extensively, participated in two sprint triathlons, wrote a book, starred in a documentary — all this on top of being a fun and inspirational friend, a devoted mom, a loving and adoring wife, a supportive and caring daughter, and a proud big sister. All while trapped in the body of a rag doll.”
She kept her sense of humor — the film is shown with subtitles to ensure that viewers understand what Berebitsky is saying, and she jokingly says that she always wished she came with subtitles.
She grew to appreciate her decision to embrace life, reflected by the title of the book she wrote, “ALS Saved My Life… Until it Didn’t,” which she completed over three years and self-published last March, with a launch party at her temple.
She also appreciated the many people who willingly gave of themselves to help — including her husband Jeff, their son Philip, and her mother, Joyce, as well as many friends, who called themselves “Jenni’s Village” or the “J-Team.”
“She’s obviously what brought us together,” says Erin Mundy, who described herself as Berebitsky’s best friend from when they were three years old to their senior year of high school. She marvels over how Berebitsky kept a busy schedule after her diagnosis and “did tons of stuff, more than I do. She lived life to the fullest. She had an unbelievable gift for explaining what needed to be done.”
Kleinman said that she loves the part in the film when her daughter says, “To give is to receive, to receive is to give.”
“It was very hard to learn for her,” Kleinman said. “To learn not only to ask, but to ask in ways that empowered [people] to feel good about the work they were doing.”
It was a team effort when Berebitsky competed in triathlons in Indianapolis. Her husband Jeff pushed her in a motorized wheelchair for the run, she rode on a three-person bike with Jeff and their son Philip, and she was able to do the swim with help from Jeff and one of Jenni’s Girls. She enjoyed her own cheering section, accompanied by the song “Eye of the Tiger.”
“Jenni said, ‘I wanted to do a triathlon. I knew the pain of it. I suffered. Being an athlete, you have to suffer to win,’” recalled Kleinman.
Berebitsky was able to maintain a naturopathy practice, getting rides from friends. As a naturopath, she approached health from a perspective outside the mainstream of Western medicine.
“There’s nothing to prove what helped her live longer than most,” Kleinman said. “A lot of unconventional things might have helped. Jenni was very attuned to her body. She would try something and say, ‘No, I don’t see a difference,’ and other times, she would say, ‘I can feel a difference.’ Nobody knows for sure. You don’t get a do-over.”
“Why she lived so long, I don’t know,” Kleinman said. “Her quality of life, I do know. Because of her commitment to live her life.”
Although her life was prolonged well beyond the doctor’s diagnosis, the effects of the disease continued, and increased.
In the film, Berebitsky grows thinner, and her movement becomes more restricted. And, her mother said, “her voice was getting worse. We didn’t know how bad it was until a few months before she passed,” which was when Berebitsky made the quip about wishing she always came with subtitles.
“One week before,” Kleinman recalled, “she said, ‘Mom, I’ve been living with ALS for over a decade. Now I’m fighting it. I’m not going to get better. Living with ALS, I can do. I just can’t keep fighting it. It’s so hard. My breath hurts every time.’”
“She died the way she lived,” Kleinman said, “on her terms.”
“I’m thankful I got to be with her when she passed and tell her how much I love her,” said Mundy. “I reassured her I was not going anywhere, that she should not worry about her mom and Jeff. I feel she heard that. Right at the end, she was the most beautiful.”
“Jenni Kleinman Berebitsky carefully prepared everyone around her for the inevitable outcome of her ALS diagnosis,” Nethercott said in a director’s statement. “I will miss Jenni. I loved her smile and her authenticity. I deeply admire her courage. She lived life well. She faced death with grace, wisdom, courage, and humor. Her story, her legacy, and influence will continue. Meeting Jenni and making a film about her is a tremendous privilege that I will always treasure.”
Kleinman remembered that as the family mourned the traditional week of shiva for Berebitsky, “Person after person said they felt they were at their best when with Jenni. She had a way of making people feel good about themselves folding her laundry, doing her dishes.”
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