Before ALS, Sara Bennett was a high school social studies teacher. But the 37-year-old mother of two also had a hobby and a side business – organizing. She would help people organize their homes – getting rid of unnecessary possessions, finding aesthetically pleasing storage solutions, and taming the chaos of their garages or basements. She documented and shared her organizing work through her Instagram account, The Ananda Edit – which means to “reduce your material things for more joy.”
However, in early 2022, Sara began experiencing trouble using her hands. At first, her doctor believed the symptoms were related to carpal tunnel, but they continued to spread. After a long and arduous process, she was finally diagnosed with ALS in 2023. It soon became apparent then that much about her life was going to change – including her beloved organizing hobby.
“When I was diagnosed with ALS, obviously I couldn’t work in garages in the way that I did,” says Sara. “So, I talked with a friend and she told me, we’ve got to do something else. We’ve got to switch gears. And so now my Instagram handle is “The Ananda Pivot,” because we have to shift gears for more joy. The only thing I know for sure now is that change will either happen slowly, like a river, or it will kick you in the face, like a horse. Regardless of how the change comes, you’ve got to roll with it and adapt.”
Embracing the idea of pivoting to her new reality, she threw herself into ALS advocacy and activism. With her new Instagram handle, there came a new focus, documenting how she was adapting to the challenges of life with ALS to help others in similar situations. Sara – who has two boys, ages six and eight – says that she particularly hoped to reach other parents with young children.
“My goal is to help people, focusing on adaptive lifestyle and advocacy,” she says. “When I was diagnosed, I had no parent friends who were young. I looked for people out there who could give me some guidance. But I struggled to find people who were in their 30s or 40s who were parenting young kids. I decided to, I hope, become the guidance that I needed when I was first diagnosed.”
One of the most difficult parts of navigating the disease with her children was figuring out how to tell them about her diagnosis. Sara says that she and her husband tried to balance being open and honest about the realities of ALS without overloading them with too much potentially upsetting information at once.
“Every parent is different, so what worked for me might not feel good for everyone,” she says, “but, my approach was ‘process your own stuff before you share with them. I did not want to be a ‘Messy Bessy’ when I told my kids, because they will take their cues from you. Along the way, I say things like: ‘Mom’s hand doesn’t work,’ or ‘Mom’s brain is struggling to talk to her nerves and muscles.’ When we told them, it wasn’t like they didn’t know I was struggling. We knew it would be worse for them to wonder what was going on. So, I used a lot of books. I talked to their therapist, my therapist, their pediatrician. I feel good about telling them in the way that we did.”
Sara has also involved her kids in her advocacy efforts to help empower them and give them the sense that they can help their mom. Currently, both of her boys are asking that, instead of giving them birthday presents, their friends and family donate to a fundraiser to support the ALS Therapy Development Institute (ALS TDI). They will also hold a lemonade stand in their hometown of Grove City, Ohio, on June 2nd to raise additional funds to support ALS research as part of the Kids’ Quest to Cure ALS.
“We can’t have more people talking about ALS if we don’t have more people with it sticking around,” she says. “And if more people stick around, it will be because of treatments and science. We want to funnel some of our support to people who are truly boots on the ground, and we feel like ALS TDI is that.”
Like much of her experience with ALS, Sara has documented her approach to helping her kids understand and cope with her disease on Instagram. On her page, you can find dozens of reels about her family, the adaptive tools she has discovered, and information to raise ALS awareness. In doing so, Sara has created both a document of her personal journey and a resource for people like her – the same resource she wished she had when she was beginning her own ALS journey.
“I have a series on how we told the kids [about my diagnosis], with links to the books we liked,” she says. “I have a series on there with advice for caregivers from [my husband] Russ. I have a series that I’m going to do in May for ALS awareness where I interview Kim, my nurse. I love an adaptive tool and so I love to post things like: ‘Hey, are you trying to keep showering independently? Try this.’ I get a lot of satisfaction from people telling me what they need and trying to meet that need.”
To see more of Sara Bennet’s content about living with ALS, you can follow her on Instagram @TheAnandaPivot.
To support Sara’s kids’ fundraiser for ALS TDI as part of Kids Quest to Cure ALS, click here.
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