By Jessica Hanewinckel, San Diego Jewish Journal
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.
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 7 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 G-d, 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 41st 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.”
HOW IT STARTED
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 Chassidic 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.
THE BIRTHDAY PARTY
It wasn’t until 7 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.
THE FABULOUS FIVE
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 G-d’s help, soon we’ll be cured,” the rabbi says slowly. “Or, if G-d 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.”
A BIT OF CONSOLATION
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.”
A CAMPAIGN FOR YITZI
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.'”
The public is asked to continue praying for Yitzchok ben Bracha and make a monthly or one-time pledge to assist with medical and living expenses at www.HurwitzFamilyFund.com
I HAVE YITZIS NAME IN MY SIDDUR @ REFOENU.
AD MOSAI?
Aibeshter look at your chasidim . WE BELIEVE IN YOU IN THE MOST TRYING TIMES . absolutely it will be good, please show the world that the aibeshter is the true healer of all flesh and give him gezunt
our tfilos are with you and I will mention Yitzchak Ben Bracha in letter to the Rebbe although Im sure he has a direct line !!!
attending services for 5 years, and never missed a special event sponsored by our Rabbi. He is a very strong man of great courage and wisdom, and an inspiration to all of have attended services in Temecula or his study groups. With G-d’s help, and our prayer’s he will fight and overcome…
How true, what gratitude, what clarity. may He give you capacity to sing His praises all day
Very touching and at the same time amazed at the positive influence to others that is being brought out by this terrible nisayon. May hashem answer your tefillas and may a miracle be done for a cure for this brave person. I will only suggest that you keep praying hard. Miracles happen every single day
I am so so so impressed with their faith. Dina is one strong young woman. May HaShem give Yitzi a complete and speedy recovery, amen.
THEY DID THIN ITS MYEESTHENIA GRAVIS AT ONE POINT BUT RULED IT OUT
Are they 100% sure it is not bulbar a myasthenitc (myeasthenia gravis) syndrome which can look much like bulbar ALS.
check this website http://www.amalsiudit.co.il/.
refuah shleima
thanks for taking the time to give these details
they are all being explored…….but please know that every single person’s care , concern and effort to help counts a lot!!
This will surely hasten Moshiach’s arrival may it be NOW!!
When all suffering will be a thing of the past.
Brainstorm is headed by a lubavitcher in Israel – Chiam Yankel Libovitch. Here is an excerpt from their website: Pending FDA approval, we anticipate that the trial will begin in late 2013 at Massachusetts General Hospital (MGH), the University of Massachusetts Medical School (UMass), and the Mayo Clinic. As soon as the protocol is approved, we will post a link to the eligibility criteria and contact information for the Principal Investigators on our website. At that time it will be possible to submit a request for information about participation directly to the clinical centers. The UMass team will be led… Read more »
רְפוּאָה שְׁלֵמָה ״יִצְחָק בֶּן בְּרָכָה״
please tell us name, refua sheleima and long life
To number 13:thanks for sharing. I just watched it and cried and cried!!! May Hashem save yitzi and his friend -number 15 from this awful machla
That was a very meaningful film
There was an article in this weeks AMi magazine about a women with Als, she said Rabbi Hurwitz gives her chizuk and has helped her with referrals, from my heart Refuah Sheleima to both Rabbi Hurwitz and her , Moshiach is near and all sickness will end…must end!
Dina, I remember meeting you like five summers ago at a bbq in La Costa. You sat down to schmooze with us, a group of teenage girls who were counselors in a nearby CGI. I still remember your energetic, bubbly self. Even though we may have only chatted a few minutes, I still remember you like yesterday and just know that you’ve made an impression on me. At that point in my life, it was very necessary for me to meet good chassidishe role models, and B”H you showed up at the right time. I wish your husband a complete… Read more »
I was diagnosed the day after Yitzi. Our symptoms are eerily similar. I have met Yitzi and he is amazing. We will fight this together.
Dina and Yitzi you are amazing I’m crying you remind me what life is really about
People reading this article should watch ‘Tuesday’s with Morrie’. It’s about a Jewish professor who also suffered from ALS. Like Yitzi, he only looked at like in a positive way even at the worst stages of his disease.
Dear COUSIN YITZIE, WE THINK OF YOU DAILY AND ARE DAVENING FOR YOU DAILY!
WE LOVE YOU
Sydney Australia
May we only merit good knews
This article from Wired.com from today mentions a device that may be useful.
“When the school’s principal, Dr. Eric McLaren, revealed he was suffering from Lou Gehrig’s disease, Derse and other members of the school’s robotics team built a robotic arm that McLaren can control with his foot and a Microsoft Kinect device. ”
http://www.wired.com/wiredenterprise/2013/05/hogwarts-for-hackers?cid=8441384
May this special shliach and his extraordinary wife be blessed with besuros tovos and all the miracles that they need and deserve!!!
Our thoughts and prayers are with your family during this difficult time. We feel for you even though we have only met through collive. Your husbands regal bearing and beautiful smile from the Bar Mitzvah photos will remain in our minds while we say Tehillim for him and your family. Hope to hear good news soon!
As we approach Gimmel Tammuz let’s all follow the Rebbe’s directive “tut aztz vos er kent” to bring Moshiach by following the last Sicha to the Shluchim it which he said to prepare themselves & their citys for “Kabbalas P’nai Moshiach” & then all yiddin will be gezunt.
Yitzie,
I daaven for you everyday of my life. I love you and I know hashem will send you a refuah shelaima bkorov mamish mamish
always
l g
Shmuel Tanchum Shuchat aliyas neshoma had the same disease and symptoms as Rabbi Hurwitz. It’s a debilitating awfull disease . There is absolutely no words to describe to the extent how this Rabbi is suffering
Hashem g-d allmighty should show his rachmim and mercy and sedn him a refuah shlema
BS”D Doesn’t it say that G-d created the cure before the maka. If so it is out there and Hashem and the Rebbe just has to reveal please G-d very soon
thank you. made me cry. heartwarming and heartbreaking all at the same time. keep strong.
The Rebbe points out that “tracht gut vet zein gut” is a psak from the Rabbeim. All chasidim are with you on this, actively. You will surely be cured, the question is only when and we pray that Hashem cures you speedily.