Lessons I Learned from Grateful: The Jenni Berebitsky Story

This short film about one Indy woman’s life with ALS is utterly inspiring.

The holiday season is one where many of us take stock of our lives and celebrate with gratitude for all that we have. But it can also be a stressful time where we find ourselves bitching about traffic and travel and that one family member who pushes your buttons in a very specific way that makes you want to scream.

If you’re anything like me, sometimes you just need to be jolted out of that internal cycle of petty and take a step back. That moment for me came from screening the short film, Grateful: The Jenni Berebitsky Story (directed by Paul Nethercott), in which she shares parts of her life and what she learned living with ALS.

You may have heard of Jenni and her family—they became quite the local celebrities over the past few years. Especially, as she notes in the film, after the Ice Bucket Challenge went viral in 2014. While we weren’t super close, Jenni was a friend and classmate of mine for many years and a fellow North Central Panther. I followed her journey with awe and admiration for how she never let her disease stop her from being an amazing wife, mother, daughter, friend, and member of her community. 

Jenni died on August 29, ten and a half years after doctors diagnosed her with ALS and gave her 18-24 months to live—and while I wish this story was a conversation with the woman herself, she blessed us with a legacy that will live on forever—not only in the hearts of her friends and family, but via her voice in Grateful and her book, ALS Saved My Life…Until It Didn’t which she wrote with her mother, Joyce Kleinman, and Elizabeth Flynn.

Joyce told me she and Jenni entered into the film project with very low expectations. “Like with so many things, Jenni said, ‘Why not?’” she said. But the film’s impact has gone well beyond anything they expected. It has been screened at film festivals across the country and garnered a number of prestigious awards. Heartland Film has even created the Jenni Berebitsky Legacy Award which will recognize a short film (with an $1800 cash prize) at the Indy Shorts International Film Festival each year that best embodies Jenni’s spirit and legacy. Joyce tells me that a common response after viewing the short is that it “inspires them and makes them walk away feeling that they want to do something different and make a difference with something in their life.” 

“And they’re [the book and the film] not just for people with ALS. It’s not even for people that have been diagnosed with any kind of disease,” she says. “It’s just living every day of your life in a way that it can shift you. People are still stopped with stuff, even if it’s not a terminal diagnosis, to the point where they just can’t move forward. I think Jenni has a way of inspiring people to without making people feel bad. That was just Jenni.”

As I look forward to Thanksgiving day with my own family, these wise words from Jenni will be echoing through my head and heart—and I hope yours now, too.

You’ll never totally have life figured out, but you must keep pushing forward. 

“ALS is a tricky, tricky disease. Just when you think you’ve got it figured out, and you think, I can handle this, something else is taken away.”

The next time I’m frustrated about a personal or professional hurdle, I’ll think of how Jenni always persevered in spite of a disease that was constantly moving the goal line in the most devastating ways. Her mom said they liked to call her the “MacGyver of ALS” because whenever the disease took away another one of her functions, she would simply come up with a new clever workaround. 

You can find beauty in any situation. 

“At times, it’s the worst hell you can ever imagine, being trapped in your body, not being able to move. Barely being able to yell for help. An itch on your nose that will make you insane. I mean, there are times when I feel like a rag doll…But at the same time I live such an amazing life, and the people around me, I mean, they do everything. We have so many supportive friends and family. The friendships I’m able to make because I can’t go anywhere…they’re so intimate. It’s really beautiful.”

Imagine being able to flip a narrative that way in your own life, to find beauty where others might only see pain and suffering. Jenni’s words also made me think about not taking for granted the people in our lives and instead striving for those more intimate, special moments in the middle of the daily chaos. 

“The friendships I’m able to make because I can’t go anywhere…they’re so intimate. It’s really beautiful.”

Your real friends will have your back, no matter what you need.  

In the film, Jenni recounts a story of being away with her girlfriends in Chicago and after she was all tucked in bed, realizing she needed to go to the bathroom. She didn’t want to bother everyone so she asked a friend if there was anything “resembling a bedpan.” There was not—but they did have a towel that ended up yellow and in the tub. That true essence of friendship and community is such a gift and Jenni had it in spades. We should never take our people for granted.

Don’t be afraid to ask for help—it can be a gift. 

Jenni says that she was uncomfortable asking for assistance at first and sometimes felt “bossy” when directing people around her. “But once I really realized and learned more about the act of giving and the act of receiving…to receive is really to give, and to give is to receive.”

Needing help is not a weakness and we’d all be better for remembering that—I’m certainly going to try to.  

Keep living, in spite of anything life may throw at you. 

“I have a wonderful husband and we plan great events that have us moving towards the future,” Jenni says in Grateful. “Whether it be participating in a sprint triathalon or throwing huge parties for my birthday. They’re all a symbol of us being grateful for this life. And has us get out of the bed and moving forward. That, and our son Philip demanding that we wake up.”

Jenni lived that lesson every day and if she could have a wicked sense of humor about all that life dealt her, I think we can as well. 

We’ll keep you posted about any upcoming screenings of Grateful: The Jenni Berebitsky Story here in Indy and you can also stay up to date at alssavedmylife.com or purchase Jenni’s book on Amazon in paperback, eBook, or audiobook. 

Abby Gardner is the Executive Editor of Indy Maven and she is very grateful for people like Jenni Berebitsky.