By Michele Justic
Passionate, determined, optimistic–Deborah Danielle Schochet is an extraordinary woman who must face extraordinary challenges. This 39-year-old Woodmere resident received the devastating diagnosis of ALS while trying to recover from a flooded and almost destroyed house during Hurricane Sandy. But, by all accounts, she will not let the storm or the disease win.
Doubly tragic is the fact that Deborah watched her own mother succumb to this terrible disease at a young age. Fortunately, though, technology has made some of the battle a little easier.
While the disease is known to make communication and daily actions difficult, Deborah refuses to let it get her down. She has set up a blog, Shirat-Devorah.com, to express her fears, trials and tribulations, and daily life situations to her many friends and followers. In addition, more than 616 Facebook friends, most of whom have been genuine friends for many years, read about her frustrations and joys and see her photos on a daily basis.
According to ALSA.org, “Amyotrophic lateral sclerosis (ALS), often referred to as ‘Lou Gehrig’s Disease,’ is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”
Ben, Deborah’s husband of almost 19 years, marvels, “I am constantly amazed by how well Deborah is dealing with her ALS diagnosis and symptoms. I’m totally a mess and she is constantly looking on the bright side of life.” His honest sentiment echoes the description of Devorah, the prophetess and judge, on Torah.org: “Devorah’s unique vitality radiates from the privacy of her own home (where it transforms her husband), to the public domain where it re-inspires the Jewish nation. Devorah’s power to empower is the source of her effectiveness as both public leader and wife.”
But this modern-day leader faces modern-day struggles. She has four dynamic, active children–Ariella, 17, a senior at Ramaz; Sabrina, 14, a freshman at Ramaz; Ilan, 10, a fifth-grader at HALB; and Yoni, 6, a first-grader at HALB. And they need their strong mother to continue to guide them in their daily childhood dramas. The Schochets have been determined not to let their situation affect the children, as far as possible, even keeping up with Little Leagues, choirs, and other such activities. One of Deborah’s closest parent friends from HALB, Cindy Shayovitz, notes, “Deborah has always been active in her kids’ lives. She always strove to give them what they need to be their best. Now, despite the illness, she continues to be involved, even more so. She has two main focuses: One is beating her illness, and the other is putting her family in a good position for the future.”
Under the best of circumstances, mommyhood is hard. With a debilitating illness, it can be especially daunting. That’s why Deborah’s friends put together a schedule on CareCalendar.org, where friends can volunteer to bring lunch or dinner to Deborah, help her run an errand, or just sit and talk with her. Sometimes, that’s the best part. As Ben explains, “ALS is a deadly disease and very painful to deal with. But for someone as social as Deborah who enjoys people and communicating, what really worries her is the loneliness that her illness and eventual inability to talk or move might bring. The help and caring we have received from this community and others has been so reassuring to her that she is not alone.”
As longtime friend Vickie Herman explains, this is not a new feature in Deborah’s life. “Deborah and I have been friends since middle school–over 25 years. Her determination is unparalleled. She has always figured out how to achieve her goals, despite obstacles blocking her path. She grew up in Borough Park but, at the same time, had strong convictions as to the life she wanted to live. She always had a large group of friends from different walks.”
Now, that support is, perhaps, what is helping Deborah most, in psychological, spiritual, and even financial terms. Her name, Devorah Rachel bat Miriam Chava, is on many Tehillim and challah-baking lists. In addition, Deborah’s friends have set up a Root Funding Campaign which has received 700 donations since March, raising over $118,000 toward a goal of $200,000. Donations range from $18 to more than $1,000, and they are all sent with love and best wishes. The money is needed to pay for treatments not covered by insurance, including a diaphragm pacemaker which has been implanted, and to modify the Schochets’ home to accommodate Deborah’s decreased mobility.
An additional fundraiser, which encapsulates Devorah’s fun-loving spirit, will be a party on December 31, beginning at 8:00 p.m. at Beth Shalom, 390 Broadway, in Lawrence. According to event organizers Chana Braverman and Ilana Kahan, “We decided we wanted to do a fundraiser and Jeff Neckonoff immediately volunteered. Beth Shalom came through with their donation of the hall for the night. We are looking forward to a very successful and fun evening!”
The evening includes musical entertainment by Azamra DJ and a live performance by Hasidic indie-folk artist Moshe Hecht. Magician and mentalist Marc Garfinkel will also perform, and there will be food, wine, and liquor. The organizing committee and sponsor list is formidable. Some of Deborah’s closest friends are organizing the event: Shana Aaron, Chana Braverman, Vickie Herman, Ilana Kahan, Jeff Neckonoff, Terri Pollack, and Cindy Shayovitz. Some of the finest establishments in town are generously donating their goods and services to ensure the success of the night: Traditions, Chap-a-Nosh, Cho-Sen Island, Hapisgah, Oasis Catering, Gourmet Glatt, Brach’s, Strauss Bakery, Gotta Getta Bagel, Holy Schnitzel, Mauzone in Queens, Touch of Silk, Beth Shalom, Carol Weissman of C.S.U Industries, Josh Aaron from Tov Caterers, Skyview Wine and Spirits, Prestige Caterers, and Zcholent, and MLW Design. Admission is $50 per person until December 24, $65 until December 31, or $75 at the door. Please e-mail NewYearsEveFundraiser@gmail.com for any questions. Sponsorships are still available Checks made out to Shirat Devorah ALS Foundation (a 501c3 organization) can be mailed to 636 Derby Avenue, Woodmere, NY 11598.
According to ALSA.org, approximately 5,600 people in the U.S. are diagnosed with ALS each year, and it is estimated that as many as 30,000 Americans may have the disease at any given time. While each case is special, Deborah Schochet’s resolve, in particular, calls to mind “The Iron Horse,” the man for whom the disease was named. This New York native broke records, both for his sports abilities and for his sportsmanship. I believe Lou Gehrig’s famous proclamation rings true for Deborah as well: “Today I consider myself the luckiest man on the face of this earth . . . I may have had a tough break, but I have an awful lot to live for.” Come out on December 31 to support Deborah in her struggle. v