Woman with ALS builds community support group

Anita Baron with her children
Anita Baron (center) with her children, Ethan and Gabi, at the ALS Therapy Development Institute
in Cambridge, Mass. (Courtesy of Gabi Faye)

By Jan Lee

Every Monday at 4 p.m., Anita Baron logs on to Zoom to connect with a small group of congregants from her synagogue, Moses Montefiore Anshe Emunah Hebrew Congregation in Pikesville. The gathering, which isn’t well known and isn’t widely advertised by the synagogue, has a special purpose: to provide a close-knit, encouraging atmosphere for people who are facing chronic health issues or other challenges and who could benefit from social support.

Baron was diagnosed with Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis or ALS, in 2019. According to her, the MMAE’s spiritual support group provides a unique function for people who are wrestling with the daunting challenges of an unexpected diagnosis and are looking for a way forward. Rabbi Yerachmiel Shapiro, who leads the modern Orthodox congregation, started the group about a month before the pandemic began, Baron said. The program has continued ever since.

“It has been a good source of comfort for [her] and within the community,” said Gabi Faye, Baron’s daughter. Because the disease affects Baron’s vocal chords and makes it hard to speak, Faye tries to be available to help with communication whenever she can. Faye, a New York-based film producer, said that, despite the challenges, her mother still maintains her own independence as much as she can. At 66, Baron, a former actress, runs a business from her home, a rarity for many patients struggling with this systemic disease.

ALS is a group of degenerative diseases that affect the body’s nerve cells. The genetically inherited and the sporadic (non-inherited) versions of ALS are fairly rare, but both affect voluntary muscle movement that is needed for essential tasks, such as speaking, chewing, walking and swallowing. ALS can, and often does, affect more than one region of the body. In Baron’s case, she was diagnosed when it began affecting her speech. There is, as of yet, no cure for the disease.

Baron said the last year has made her realize how important it is to connect with others in her own community with ALS. She is hoping to meet other Jews who either have been diagnosed with the disease or are supporting family members who have ALS and can understand how such limitations affect daily life and practice.

It’s a viewpoint that Faye understands from watching her mother cope with the disease.

“ALS can be a very isolating disease when you lose your abilities to do some activities or to communicate, even when you are in a support group,” Faye said. “Having someone who shares that same experience is very therapeutic.

“Sometimes when things like this happen to people, you have sort of a chance to hate God or to accept God [having] your best interests at heart. So I think there’s some sort of alignment with having someone who has the same religious beliefs as you who is also going through this journey.”

Baron has attended local ALS Association meetings but didn’t feel they were a good fit for her. “Our thoughts were not aligned,” she said.

Shapiro, who coordinates the MMAE’s weekly spiritual support group, said it’s a testament to Baron’s tenacity and positive thinking that so many other people are now benefiting from the weekly support group. The program would not have come about if Baron had not proposed the idea, he said.

“It was Anita’s idea completely, and it was pretty heroic of her to do so. When she was dealing with the really difficult news of her diagnosis, she was thinking about how she could help others and make a community to heal together,” Shapiro said. “And [that] always has been her approach. She has always been interested in healing and in never giving up hope and never being resigned to a fate, but rather, living every day in hope and positivism.”

The group has had some surprising benefits, Shapiro said, including for him. “I had cancer this past year, and it ended up being an incredible resource for me. It helps me deal with what I was going through.” The program has had drop-ins from people dealing with a wide range of challenges. “We have members who are healing from illness [and] members who are healing from broken hearts over loss of loved ones.” The program is also attended by a saxophone player who has been going through his own grieving process, brought on by his inability to perform during the pandemic. Shapiro said his attendance — which includes a musical performance every couple of weeks — brings joy and solace to everyone.

“The modus operandi of Judaism is to be godly, right? We want to imitate godly behavior, and so it’s such a mitzvah for every person to try to heal the broken hearts,” Shapiro said. “[This is what] the healing circle is all about. We are all coming there to heal, but also to help others heal. So in doing so, we’re helping God to do God’s job.”

It’s important not to lose heart, Baron said, especially when struggling with ALS.

The mother-daughter team are now collaborating on a cookbook for people with ALS that offers tips and nutritious recipes for people with swallowing problems and other ALS-related challenges. Baron also takes time out to mentor new ALS patients around the country via Zoom when she can.

“When you lift others up, it lifts you up as well,” Baron said.

Those who would like to connect with Anita Baron can do so via email at anita.baron@yahoo.com. Information on MMAE’s spiritual support group can be obtained by calling the synagogue at 410-653-SHUL. The weekly session is open to the public.

Jan Lee is an independent journalist living in Canada who writes on Jewish culture, history, business and the environment.

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