How do you tell children that the father they adore, their beloved, invincible family superhero, has a degenerative disease that is turning ordinary functions like speaking, chewing or swallowing, into an exhausting effort?
When Rabbi Yitzi Hurwitz, the Chabad representative to Temecula, CA, was diagnosed with ALS, his wife Dina, still in shock, sought advice and spoke to professionals before breaking the news to her seven children, ages 6-16.
“We spoke to the older ones first,” she said in a recent phone conversation. “They knew something was wrong because their father was having trouble speaking. But they weren’t prepared for the seriousness of the diagnosis.”
The Hurwitzs told their children that they are free to “ask us anything they want to about ALS but we asked them not go online and do their own research because we knew that what they would see would be terribly discouraging. We told them that any feelings they’re having are acceptable; that it is acceptable to be scared, it’s okay to be sad, and even angry. And if something makes them happy, feeling happy is acceptable,” Dina said.
Their world turned on its head, Yitzi and Dina laid down some rules: “The only thing that is unacceptable,” they told their children, “is to use this as an excuse to ruin your life, to have a bad attitude towards your school responsibilities, or towards teachers and friends. We reminded them that we are Chasidim of the Rebbe, and that it doesn’t have to end the way science says it does; that anything is possible and we should keep that in mind all the time.”
Tall and trim, with broad shoulders and a wide smile, the 41 year-old Chabad rabbi was nursing big plans for his community in Temecula when he began having trouble speaking. It took months of tests to rule out other possibilities before a diagnosis of ALS was confirmed. Also known as Lou Gherig’s disease, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It is rare, striking two out of every 100,000 people.
To date, there is no known cure for ALS, an illness that is not fully understood. No two people are affected quite the same way, but Yitzi was diagnosed with bulbar onset, one of the more devastating forms of ALS, which affects upper respiratory muscles first, making speaking, eating and breathing very difficult. As motor neurons degenerate, they can no longer send impulses to the muscles that control movement. Muscles begin to atrophy but the mind is not affected. The patient is aware of his own physical decline.
An Eye for Light
Classmates and colleagues light up when they talk about Yitzi, the lively Chabad emissary with a gift for “giving off light.” They describe him endearingly as “the most frustratingly optimistic, positive person.”
When I met him in early May, his speech was slurred, but he was eager to talk about the community he and Dina cultivated lovingly from the ground up, as they raised their growing family. Yitzi radiated optimism and gratitude, with a knack for finding light in darkness like a needle in a haystack.
“Look at how much good has already come from this,” he said, humbled by all the mitzvahs that friends and strangers have committed to doing since learning about his story and the spirit in which he is fighting for his life.
No longer able to raise funds or to manage many of the day-to-day affairs of running a Chabad center and a Jewish community, Yitzi has turned his attention to “long term planning, and to creating an infrastructure so that others can get involved” in maintaining and growing the Jewish community.
The words come out slowly, vowels heavily pronounced. “So many people in the community have stepped up and are now managing the day-to-day programs, and getting involved in a much bigger way. People are learning how to do things that I used to do, and they are discovering that they are capable,” he said, delighted at the heightened level of engagement in Jewish community life.
“I don’t know why G-d made this happen, but there must be something I can accomplish now, that I wasn’t able to before this.”
Dina and Yitzi settled in Temecula 14 years ago, living a hardscrabble life dedicated to sharing their passion for yiddishkeit with others. In her blog, The Caffeinated Thinker, which she began in 2012, Dina introduces herself as “A mom of 7 living in small town California . . . married to the most charming rabbi in the world, working together at making the world a brighter place.”
In 2007, Temecula was hit hard by the housing crash. Residents who had become close to the Hurwitzs lost their homes; some moved away, and Yitzi and Dina experienced a real setback in their community building efforts. Not easily discouraged, they worked tirelessly to help their community rebound, and were finally seeing success. The educational and social programs were growing, with good attendance at their Hebrew school, and strong turnout at their Shabbat services, adult educational classes and Sunday minyan. Then Yitzi, the gifted communicator with a great cantorial voice, began to have trouble speaking.
Word of Yitzi’s diagnosis spread fast and furious, and a circle of support quickly formed around the Hurwitz family. Learning that he was struck with ALS brought profound heartbreak to Yitzi’s friends. But it also motivated them to act on all fronts.
Simcha Backman, a Chabad representative in Glendale, CA, said he and his colleagues knew they had to act with urgency. “In a situation like this, when the Shliach cannot continue doing his regular activities, everything collapses very quickly. We knew we had to do everything we can, and we devised a plan to make sure that Yitzi’s medical needs, his family’s financial and emotional needs are taken care of. We wanted to cover all bases so that Yitzi has the best shot in this fight for his life.”
The outpouring of friendship is not unexpected among the fraternity of Chabad Shluchim. But in this case, it is a deluge of generosity that “mirrors Yitzi’s contagious kindness and optimism” for which he is so widely and genuinely beloved, says Shmuel (Mushie) Fogelman, a Chabad community activist in LA.
His colleagues organized, working to research and sift through endless information on ALS, to identify promising clinical trials and to raise the funds (mostly from Chabad Shluchim around the world, many of whom are themselves struggling to make ends meet) to cover all the finances for Yitzi’s medical care and for all his family’s expenses,
“In our darkest hour, the outpouring of love from the Shluchim and the other people in Chabad has been unbelievable,” Yitzi said. Freeing him up from financial burdens has allowed him to focus on treatments, to spend time with his wife and children, and to continue as well as he can, his educational and outreach activities. The network of support, Dina explains, means that her limited financial resources will not be a factor in her husband’s medical treatment. “It would be terrible to have to make decisions that affect the life of the person in your family, based on money.”
Back in May, Yitzi and a group of his colleagues flew from LA to New York. They met with several other friends and with Yitzi’s parents to pray at the Ohel, the resting place of the Lubavitcher Rebbe, imploring the heavens for a reversal of his diagnosis. (They were not praying for the impossible: according to the ALS Association, there are cases in which the disease stops progressing, and a small number of people in whom the symptoms of ALS reversed. Experimental stem cell research holds promise of a possible cure.)
Keeping Faith, Keeping Dignity
Since then, his voice has become weaker (he now uses a small microphone), and the effort it takes for him to speak, greater. Sometimes, said Dina, she notices Yitzi withdraw into a corner. “He doesn’t talk as much; he doesn’t walk around the house singing as he used to. My husband is a very verbal person. I’m not used to him being quiet.” But he still gives the Shabbat sermon at Chabad of Temecula every week, and he still leads a Torah study class every Wednesday.
“Some people are too heartbroken to listen to him, because they see how difficult it is for him, or because it takes him too long to get the message across,” said Dina. “They now have to watch his lips and listen closely to hear him, but they come anyhow to be inspired by him. Unfortunately, a lot people have trouble in their lives. They come in and listen to him and they leave a little happier. The fact that he can still teach is what keeps him positive.”
Keeping positive in the face of his diagnosis is a test of his faith, Yitzi said. “I have always taught others that everything G-d does is for the good although we don’t always see it openly. So now, when this happened to me, I have to live with this same belief and deepen my faith, so that it is not just a matter of words.”
Dina laughed when she talked about her husband’s “irrational” optimism. She said she knows she “married the happiest man in the world,” and works hard at staying positive herself. She tries to hide her fear when she’s around her husband and her children, “because they’ll mirror my feelings.” But these days, thoughts about the future weigh heavily and keep her awake at night.
“I know that miracles happen through medicine or through any other way. But I also know,” she admits, trying to suppress her tears, “that sometimes people die, sometimes really good people die. And that’s the part that scares me.”
There is a long pause on the phone. Then she says quietly, almost to herself, “There’s also the aspect of maintaining dignity. Maintaining someone’s dignity while their body fails them, that takes a lot of strength. I hope I have it.”
In every way, life has changed for the Hurwitz family. They no longer take “a light attitude to life. Everything makes a bigger difference. We work harder at making our memories matter more than if you have an endless supply of life’s memories.”
On the positive side, she’s now spending more time with her husband. In addition to his responsibilities as Chabad leader of Temecula, Yitzi worked as a kosher supervisor and a chaplain. “He was hardly home. Now we have real time together, and the children see much more of their father.” Dina is also getting over her fear of public speaking. “I have to be Yitzi’s mouthpiece now, and I’m learning to do it.”
Since her husband’s diagnosis, Dina’s posted two entries on her blog that were both remarkably positive, expressing gratitude for the support and the many friends who celebrated with her and Yitzi at their son’s bar mitzvah recently. When we spoke, she was working on another entry about what the difficult days are like.
“I feel like I owe it to other people going through hard times so that they should know that there’s also fear, and sadness. A lot of fear.”
She tries to focus on the factors that are working in her husband’s favor. He’s strong and was in very good physical shape until the onset of ALS. She and her husband are surrounded by dedicated friends who “keep us from falling.” And there’s new research and experimental treatments that show promise. His friends are pursuing several different clinical trials, including Brainstorm in Boston, at Mass General with Dr. Merit Cudowitz, a leading ALS specialist, and her team. As Simcha Backman said, “There will be a cure for ALS, and why shouldn’t Yitzi to be the first person cured of this disease?”
When Dina feels scared, she complains to G-d. She finds comfort listening to Chasidic melodies, and studying Tanya. And she works hard to manage her thoughts.
She recalled a family trip to Bear Lake several years ago. It was a beautiful day, so beautiful that on impulse, she jumped into the lake with her clothing. It didn’t take long before her legs got caught in her skirt, and she panicked.
“I felt like I was going to drown. My husband calmly told me to put my legs straight down, and I did. As soon as I did that, I found to my embarrassment, that the water was so shallow. I was standing in only three feet of water, and I was fine.
“So my question is: can you drown in three feet of water? The answer is, yes, absolutely. But until you put your feet down, you don’t know that the ground is right there beneath you.”
Dina thinks about this when her fears get the better of her. ”Right now, I’m standing in murky water, where the bottom is not visible to my eye. That doesn’t mean it is not right under my feet. But I surely won’t find it in my state of panic.”
“The only thing I have control of is how I behave when I’m feeling vulnerable. Do I trust that help can be very close, or do I drown in three feet of water?
“I tell myself this a lot,” says Dina. “Sometimes it works better than others.”
Please keep Yitzchok ben Bracha in your prayers. To do a mitzvah in Yitzi’s honor, go to www.amitzvahforyitzi.org. To contribute to family and medical expenses go to hurwitzfamilyfund.com