On the Bright Side: Shliachs Battle with ALS

Rabbi Yitzi Hurwitz doesn’t speak so much these days, but he says a lot with the look in his eyes and the expression on his face. When the topic of how he met his wife, Dina, comes up, for example, a wide, open smile spreads across his face and his warm, brown eyes grow come alive with delight. (She was 14, and her cousin, whom she was staying with while attending high school in Brooklyn, was his best friend and neighbor; she says she knew she would marry him one day.) It’s as if he’s no longer a 41-year-old man married 17 years, but a newlywed in adoration of his bride. Dina returns his happy gaze with her own smile. “It was wooooonderful,” the rabbi says slowly of their courtship. “The best decision…” His voice trails off, but that smile returns, and he doesn’t need to say more.

Later, when Dina wipes tears from her eyes and pauses to collect herself, saying she sometimes feels scared about the future — mostly at night, when their seven children, ages 16-6, are tucked in and she can’t sleep — Rabbi Hurwitz looks past her into the distance, somber, lost in his own thoughts, lips tucked tightly together, as if he can’t bear to see her in pain.

That’s the thing about Rabbi Hurwitz, the 14-year Chabad emissary in Temecula. He lives for God, and for doing kind things for his fellow people. True to the Chabad spirit, the rabbi exudes uninhibited joy, gratitude and gentle kindness and concern for those around him. Never mind the circumstances, and never mind himself; he thrives on blessing others with the gift of a mitzvah.

Now, though, it’s the rabbi and his family, so accustomed to always being on the giving end of mitzvot, who have had to learn to be the recipients. Their lives changed on Rabbi Hurwitz’s 41^st Hebrew birthday just four months ago (2 Adar, this year Feb. 12), when he received a diagnosis they’d suspected, but hadn’t confirmed: the rabbi has ALS, or amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease.

The ALS Association describes ALS as a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Motor neurons connect the brain to the spinal cord, and the spinal cord to all the body’s muscles. The progressive degeneration of the motor neurons eventually leads to their death, which means muscles cease functioning. Paralysis eventually comes as the patient gradually loses the use of more and more muscles, and most victims usually die of respiratory failure in a handful of years. There is no cure. The rabbi’s prognosis: five years.

“I am truly humbled by how good people are,” Dina says of the outpouring of love they’ve received, “because I have never been on the receiving end like I am now. When we first heard, I thought, ‘I have a monopoly on pain,’ but it affects so many people.” She begins crying. “I didn’t realize how… I’m not the only one who loves him. We’re hiding in Temecula, so I forgot. I’ve long forgotten who [many of those people] are, because they were just passing through, or whatever it was. Apparently he makes a big impact on a lot of people.”

Rabbi Hurwitz has been diagnosed with a particularly cruel form of ALS, known as bulbar onset. While about 75 percent of ALS patients first experience limb onset, meaning their symptoms start with trouble controlling the muscles in the arms and legs, the rabbi is one of 25 percent to first experience what, to that other 75 percent, only comes at the end: trouble speaking, swallowing and controlling their tongue. For the rabbi, a man who says he loves singing Chasidic niggunim (his brother is the authority on them in the Chabad world), teaching (he says teaching is giving your love to people, connecting with them and making a difference in their lives) and just being around others, he suddenly found his words starting to come out awkwardly. Back in July and August 2012, the rabbi says, he knew something was wrong.

“When I would speak or when I would pray, my tongue wouldn’t move,” he says slowly, deliberately. It’s sometimes hard to make out his words, and the more he talks, the more difficult it becomes. The effort is clearly tiring, so he tries to convey his thoughts as simply as possible. Dina, who says she used to be the one who was less of a talker, intercedes often so he doesn’t tire as quickly.

“I couldn’t get the words out at the normal rate,” he continues. “And then slowly I wasn’t able to whistle. I used to like whistling. My voice started to sound a bit hoarse.”

With the High Holy Days fast approaching, he went to his doctor. He wanted to be in tip-top shape in time to perform his duties for Rosh Hashanah and Yom Kippur. A severe sinus infection was diagnosed, but after two rounds of antibiotics and no change, the Hurwitzes saw a neurologist. Since the only way to diagnose ALS is to exclude all other possibilities, they (Dina never refers to this battle as her husband’s alone) endured months of testing. They even explored the option of lyme disease (they knew the rabbi had been bitten by a tick, and lyme symptoms can present similarly) and administered a month’s worth of lyme medication through a PICC line. No change.

It wasn’t until seven months had passed that the news they had been expecting came.

“That day was not the hardest day,” says Dina, choking up. “The hardest day was the day we told the children. But that day was hard, too. … One person comes in and says, you know, ‘Here’s a brochure for wheelchairs when he can’t walk anymore.’ And the next person comes in and says, ‘Here’s a brochure for feeding tubes,’ and the next person comes in and says, ‘Here’s a brochure for a breathing apparatus.’ Then the next one says, ‘When you can’t talk anymore, there are computers that can help you.’ It was very shocking with this barrage of, ‘Go home and wait it out.’ And I said, ‘You know what? I am not taking any of that stuff home. We have time. Whatever it is, it’s not going to happen overnight. That stuff is not going to be in my house right now.’”

The birthday party that night, had it been in honor of so many other people, might have taken a decidedly depressing turn, or might not have happened at all. Instead, 65 of the rabbi’s closest friends, all of whom knew the results, showed up to celebrate regardless.

“It was wonderful,” the rabbi says, “because … I’m not the disease. So they had a wonderful time with me. They celebrated with me. They told me stories of encouragement. It was positive.”

And positive is how the rabbi prefers to keep things. It helps that he and his family have been flooded by support and love from their closest friends, from the Chabad community locally and around the world, from people who had come in and out of their lives briefly but remembered them for their kindness, from the rabbi’s former students when he served as a schoolteacher many years ago, and from total strangers. He receives text messages asking after his wellbeing every day from people. Many of those numbers he doesn’t recognize, but he responds to them all anyway. Another time, the family was driving in Temecula, and a car pulled up beside them. The driver, unknown to them, rolled down her window and told Rabbi Hurwitz she was praying for him.

And that’s just the beginning. A group of L.A.-area rabbis who are friends of the Hurwitz family (the Hurwitz family calls these men “The Fabulous Five,” took the initiative to help the Hurwitzes in every possible way. One became the chief medical researcher of the group, whose sleuthing led them to their current physician, Dr. Merit Cudkowicz of Massachusetts General Hospital, who is considered the leading authority in the country on ALS. If a clinical trial is being conducted, it most certainly is going through her office, with her patients. Dina says they’re excited and hopeful they’ll be selected for an upcoming trial out of Israel, among others. They’re also trying lots of supplements, vitamins and some alternative medicine.

“With God’s help, soon we’ll be cured,” the rabbi says slowly. “Or, if God wants, I don’t mind.” He lifts his arms in the air, palms up, and looks to the sky, smiling. “He can figure out another way.”

Other friends of theirs have helped with housing and visiting their four oldest kids, who attend school in L.A. and are home only on weekends to rejoin their family. The Fabulous Five also established a fund for the Hurwitz family to help with medical and living expenses.

“They make sure I have nothing to worry about except how he’s doing today,” Dina says, “so that’s unbelievable.”

Since being diagnosed, the rabbi has had to quit two of his three jobs (one as a kosher supervisor at a dairy plant in San Jacinto, which required him to sometimes work nights, and as a chaplain at a hospital in San Bernardino), putting an obvious financial strain on his large family. He’s cut back on his rabbinical duties somewhat and has been sent an assistant from Chabad headquarters to pick up some of the slack, though he still teaches a class and gives a sermon on Shabbat. (Dina has stepped in to help when the rabbi had trouble controlling his laughter and crying while cracking a joke or telling a sad story during a sermon, a symptom that presents with ALS when the person feels overwhelmed with emotion.)

“There are many things to do [as a congregational rabbi],” Rabbi Hurwitz says. “Some of them require that I speak, some of them don’t. So as much as I can do for the community, I do. I still have my heart.”

To say times are stressful is an understatement, but, Dina says, there is a silver lining. For one, they spend a lot more time together. They also have begun to appreciate life in new ways.

“I think it’s changed people,” Dina says, choking up. “Obviously it’s changed our family. [We’re] realizing how life is important. Whenever you meet somebody who has a life-changing experience, you check out your own life. And I think a lot of people have stepped up in their own life because of it. … I’ve seen people who would not talk to each other work together to do something good. I’ve seen the positivity that’s come out of it. And I think there has to be a greater purpose.”

Adds her husband, “It’s wonderful how many people are doing positive things, mitzvot, in my merit. It means a lot.”

This community outpouring of mitzvot has helped the Hurwitzes to find some bit of consolation.

“I can wrap my head around, why him,” Dina says. “Thousands of people have changed their lives because of him. If it would have been a different person, I don’t know if that would have happened. If it would have been me, I don’t think so. I’m not that positive person who is still positive no matter what. We get messages from around the world about people who are changing their lives because of how they see him react to this. So as to why him, I could kind of get it. I don’t maybe appreciate it whole-heartedly, but I could understand.”

More than a dozen Jewish men in their community who never wore tefillin before have bought new pairs in the rabbi’s merit. Explains Dina, the mitzvah of tefillin is close to her husband’s heart, because his primary loss of function so far has been in his head and his left arm, which is where tefillin are worn. Another family wakes up each morning and says the Modeh Ani prayer, thanking God for returning their souls to them upon waking.

“There must be a good reason, right?” the rabbi says of his diagnosis. “There has to be. So maybe to make a change in our lives. For some, life has changed to the positive. That’s wonderful.”

Though Rabbi Hurwitz is not technically part of the San Diego Chabad network (Temecula is in Riverside County), he says he feels close to its rabbis and attends their meetings occasionally (three of the seven Hurwitz kids currently attend Chabad Hebrew Academy in Scripps Ranch, too). When the San Diego Chabad rabbis got together with Rabbi Hurwitz and asked what they could do to help, he didn’t think of himself.

“All of our families have done meals each day for him and for their whole family, we have carpooled for their kids, had their kids over at our houses and things like that,” says Rabbi Josef Fradkin, head of school at Chabad Hebrew Academy. “But we said, ‘What is his thing?’ [Yitzi] said, ‘If you guys want to do something for me, I really want people to do mitzvot.’ What was so impressive was it wasn’t, ‘Maybe you can take over my synagogue for a week, or maybe you can help me out by giving my classes.’ He didn’t say anything like that. He said the opposite. He said, ‘Let’s get people to do more mitzvot. That will really give me strength.’”

Rabbi Hurwitz’s request sparked a formal mitzvah campaign in his honor, organized by the San Diego Chabad rabbis. Those who want to support the rabbi simply log on to the Web site created for the campaign (www.amitzvahforyitzi.org) and select from one of 12 suggested mitzvot, after which a letter is sent to the rabbi telling him the person has done a mitzvah in his honor.

“We believe that as the Jewish people, we can affect great change by our own actions, and we’re hoping to have a spiritual effect on his illness,” Rabbi Fradkin says.

Chabad of San Diego is also organizing a night of celebration and inspiration in honor of the rabbi at 7 p.m. June 10 (the Lubavitcher Rebbe’s yartzeit) at Chabad of Scripps Ranch. The event, which is open to the community, is for teens and adults only and will celebrate the rabbi with cocktails, dinner, highlights of the mitzvah campaign thus far, special guest speaker Rabbi Yehushua Gordon and a special video presentation.

“Yitzi is out in a little desert town where it’s hard to get a few Jews together, but he’s there out of a love and for the mission the Rebbe sent him on, so this is a very appropriate day that he get his energy,” Rabbi Fradkin says. “What better way to do it than celebrate that day together with him? The whole community is with him, and that’s important to see. Not just people sending him cards and emails, but the people in the room, even if they don’t know him, just simply giving a fellow Jew or just a fellow human being a charge of energy saying, ‘Yitzi, go fight that battle.’”