Hope and humor: Life with ALS

Jenni Berebitsky shares the strength she has found through living with ALS in a new documentary.

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Right, Jenni Berebitsky, with her husband Jeff and their son, Philip, and service dog Piper at the ALS Walk in Indianapolis. Left, Jenni and Jeff at their wedding.

When Dr. Jenni Berebitsky sat down with her neurologist in 2009, her hands were shaking with more than pre-diagnosis nerves. For quite some time, she had been experiencing muscle spasms and tremors that now made their way all the way to her tongue.

Berebitsky, a naturopathic doctor, and her family feared that these spasms were symptoms of Multiple Sclerosis, a disease that gradually damages the central nervous system and would mean a lifetime of intensive therapies to slow the progression of the disease. 

However, the diagnosis Berebitsky, who is Jewish, received was far more severe. She had Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. She had 18-24 months to live, but not before the motor neuron degenerative disease would take away her ability to walk, speak, and, eventually, breathe on her own while leaving her mind perfectly intact. 

To anyone else, such a diagnosis would be catastrophic. Berebitsky, however, chose not to view her disease in such a negative light. Instead of succumbing to sadness and waiting for the inevitable, she vowed to "spend every minute of every day living my life." A woman of her word, since her diagnosis nearly 10 years ago, Berebitsky went on to compete in a triathlon, celebrate her 40th birthday, write a book, and star in a short documentary about her experience with ALS, all while raising a family. 

Her documentary, Grateful:The Jenni Berebitsky Story , directed and co-produced by Paul Nethercott and co-produced by Amy Pauszek, debuted last summer at the Heartland Film's Indy Shorts International Film Festival in Indianapolis, Ind., Berebitsky's hometown. The film has also received awards and throughout the film-fest circuit, and recently made its international debut at a film festival in France.

Grateful premiered in Chicago in November as a preview for the 2019 JCC Chicago Jewish Film Festival, which will take place from March 1-17, and feature additional viewings of the film. Berebitsky, her mother Joyce, her husband Jeff, and their son Philip traveled from Indianapolis for the preview and participated in a panel question and answer session after the film. 

When asked why it was so important to share a story like Berebitsky's, the family's unanimous answer was: to inspire hope. "We are all at some point going to be faced with someone who is diagnosed with something terrible and…left wondering, what am I supposed to do?" Jeff said. His wife's story, he explained, demonstrates the power of positive thinking, humor, and community in such times. "Death is a really hard topic, one that we all have to deal with," added Joyce. "Jenni just has a way of bringing things to the surface and she tells her story with humor, so that it is not so devastating."

"I was taken with Jenni's authenticity and raw honesty," said filmmaker Nethercott. "She just tells it the way it is…she speaks in a direct, honest way" and never dwells on the "dark and terrible" aspects of her illness, only the beauty of living. 

The film reflects this powerful perspective, capturing through live interview and photos Berebitsky's unwavering smile, and the community of friends and family that rallied around her as her disease progressed. Rather than dwelling on what ALS took away from Berebitsky, the film celebrates what ALS gave her. She writes: "To live a normal life is ordinary. I live an extraordinary life. There is beauty and humor everywhere."

"It heals our souls …our mind, our hearts to hear a story like Jenni's," Nethercott said. "We all face difficulties…but [we] have to find the courage to move forward and find beauty in the rubble…Jenni just has this tremendous courage and spirit; she's got this fight, this will to live that drives her. In spite of her tremendous disability, her disease, she keeps moving forward."

Grateful will show again as part of the JCC Chicago Jewish Film Festival in March. For more information about the festival, go to jccfilmfest.jccchicago.org.

Jenni's book ALS Saved My Life, Until it Didn't is available on Amazon.com in both print and digital formats. 

Jenna Cohen serves as Grants and Planning Associate for Jewish Child & Family Services and is a freelance writer living in the Chicago area.


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