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Woman Warrior Dina Hurwitz on Pain, Faith, Humor, Strength

Woman Warrior Dina Hurwitz on Pain, Faith, Humor, Strength

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Google Dina Hurwitz. You may find a video of a poised, articulate, lovely woman speaking before thousands of fellow Chabad emissaries at their convention in 2016 or before an attentive crowd at a Chabad House. “She’s got it all together,” you may think.

But behind that smooth facade lies an honest, fragile, deep and strong woman warrior. A woman who is facing an excruciating challenge withBehind that smooth facade lies an honest, fragile, strong warrior candor and courageous faith—a challenge that has changed her family’s lives in unimaginable ways.

Dina was a typical Chabad girl. Fun, pretty, well-versed in Torah and Chassidus. Born in Nashville, Tennesee, she was raised in California. At 14, she went to the Crown Heights neighborhood of Brooklyn, N.Y., to visit family. Her cousin’s best friend was a young man named Yitzi Hurwitz. “I never met anyone with so much joy and excitement. He literally danced when he walked. In the end, that’s who I’m going to marry,” she told her mother.

Dina and Yitzi did marry in 1996, when she was 21 years old. She was sure that no one else could possibly have such a deep love. Their delight and happiness shines from pictures of the two.

The young couple moved across the country to start a Chabad center in Temecula, Calif., a small community about 100 miles from Los Angeles. “Yitzi’s life dream was to be a foot soldier of the Lubavitcher Rebbe and show people how beautiful it is to be Jewish,” explains Dina. A hands-on father, he adored their growing family. Life progressed, filled with the normal demands of work, travel, community, family.

In 2012, everything changed.

Yitzi started complaining, “Something’s not right with my mouth,” he said. Friends joked about the non-drinking rabbi who had slurred speech, sounding drunk. Six months of testing led to a devastating diagnosis: bulbar onset ALS, the most aggressive type of this neuromuscular disorder more commonly known as Lou Gehrig’s disease. Communication between the brain and muscles fails to work properly, and the muscles slowly atrophy and die. At first, Yitzi’s speech was affected, with some diminishment on his left side, but many normal activities were still possible. He was able to communicate through a text-to-voice app. But the disease forged mercilessly ahead.

Dina helplessly watched “this outgoing musician, storyteller, dancer, rabbi and great communicator, who could talk to anyone in the world,” lose all those abilities over the period of a year-and-a-half.

Today, Rabbi Yitzi is bedridden and mostly paralyzed. A tracheotomy has extended his life well beyond the expected two-year duration. After nearly five years, this dancing, singing beacon of life is more than 95 percent immobile, except for two things: He can smile, and he can move his very expressive eyeballs. Period.

Many would be tempted to wallow in self-pity or anger. But the couple has heroically risen to the challenge. Even with these unimaginable limitations, Yitzi expresses intense love and optimism, and deeply touches many lives, combining the latest technology and his ironclad determination to find whatever way possible to give and spread happiness. He shares his indomitable spirit by laboriously writing a blog with the movement of his eyes, focusing on each letter with a Tobii gaze-activated keyboard; a daylong, exhausting task. This weekly blog has thousands of followers around the world.

And as for Dina? At first it was about sheer survival (mental, physical and logistical): raising their seven children, dealing with ongoing complex medical issues, finances and countless other demands, without collapsing or marinating in bitterness. But this enormous challenge has grown, and grown her, into more.

She has cried. And mourned. And been bitter. And coped. And laughed. And loved. And learned.

She shares her insights, frustrations, faith and compassion freely. A small family blog, “The Caffeinated Thinker,” started before Yitzi’s illness has grown into an honest and empathetic source of strength for thousands of readers. Dina shares her path, how she learned to differentiate between pain and suffering, and how a woman who was “completely paranoid about public speaking” realized that she had vital life lessons to share. She now speaks about her story in many venues around the world with humor, poignancy, a few tears and, most importantly, gritty, real-life inspiration that every member of the audience can take home and apply to their challenges, big or small.

Following are a few of the many powerful insights Dina has learned:

Identity: If asked who we are, most of us would describe our talents and our work, as this forms our identities. As Dina watched all these talents slip away from Yitzi, she realized that he never lost his self. His core was a loving soul. As a teaching goes: “We’re not a body with a soul, we’re a soul with a body.” Left with only his eyes as a means to communicate, she says in some ways he’s exactly who he always was. “We all are a soul-burning strong. We have value—whoever we are and whatever we do or don’t or can’t do—just by virtue of being alive.”

Pain vs. suffering: Dina describes the time her attitude started to expand, about two years after the diagnosis. Yitzi had to have a tracheotomy, adjust to it and start having 24/7 nursing care. After several months of incredibly intensive changes and pressure, she was finally able to get away for a women’s Shabbaton. Two mentors sat with Dina and explained the difference between pain and suffering. “We all have pain. It’s part of life. But suffering is pain without purpose. I slowly started to realize that maybe I could find purpose in this, maybe I could help others.”

Attitude: With characteristic candor and humor, Dina assures her listeners that she’s no Pollyanna. “I’m REALLY good at being non-happy. I believe in using our G‑d-given“I have seven children and a husband who need me” talents. Mine is kvetching and complaining, and I use them well!” Yitzi can now communicate with his wife via texts to her phone. Since his typing is so slow and arduous, he has many saved messages that he can resend. One she often receives is: “You kvetch so nicely.”

So when Dina talks about choosing our attitude and choosing happiness, we listen. Not only is it her nature to enjoy a good kvetch, she’s got more than every possible reason to do so. She says, “If it was just me, I would have just closed myself in a closet and cried forever. But I have seven children and a husband who need me.”

When they were told that Yitzi only had two years, she thought long and hard. “What are the next two years going to be like? Mommy falling apart or a time full of good memories? I learned and decided that there’s really little we can control, any of us. But we can choose our attitude. Happiness is really a choice. Depending on our attitude, that’s in many ways how well we’ll do.”

About anger and arguing with G‑d: Not an angel, she describes her journey through the grieving steps of anger at G‑d. “G‑d, if you think this is going to make us stronger, or better, or teach us something I guarantee You that it won’t work. Soon You will realize nothing good will come from this, and You will give up on this grand plan.” After many ups and downs, and much inner work, she eventually had the realization that there might actually be some good in the midst of this tremendous challenge. “Occasionally, I feel slightly wiser. I can see so much good and can use this to comfort so many others. I see how Yitzi has inspired so many in need of inspiration and reminded us all not to take life for granted. He may be locked in his body but his mind and heart and soul sing with freedom.”

On loss: “The pain we feel is directly related to the love we feel. If we are lucky, then the pain is excruciating. That means the love was so very powerful and special, and this is a gift we do not all get. So don’t hide from it, it is not a bad thing, it is a reflection of the love we have, and that is a blessing.”

Soul mission: “Let’s imagine for a minute that G‑d took our hand in His and said: ‘I have a job for you. It’s going to be a hard one, but I know you can do it. Your path will be full of heartbreak and difficulties, yet you will be able to help and comfort many. When it’s time, I will show you how important it was and how necessary you are, but until then, although you will comfort many, none will comfort you.’ ”

This is probably true for most of us. Our challenges are straight from G‑d, and we know He is good and kind, and the only reason He would put coal through the fire is to make a diamond. Our souls were each told something like this on their way down, and we really have no say in that part of the deal. The part we do have a say in is what we do with it.”

Finding purpose and acceptance: “As stubborn as I am, I refused to accept that this reality is ours for the long haul. That refusal allowed me to constantly imagine a miracle and things going back to ‘normal,’ yet prevented me from using this challenge in the way that Yitzi does, as a platform to reach those in a similar situation. He was the Chabad emissary in our small community of Temecula, and now he is an emissary to many people of the world trying to live with the challenges G‑d has given them.

If the cost wasn’t so high, I would say he has been given a promotion. I don’t think I will ever achieve the level of peace that he has, yet it’s time to stop dreaming and get to work. Since Yitzi got sick, I have had the pleasure of sharing our story and the lessons we have learned with many people around the world. It is my way of finding purpose in our challenge. I never expected or wanted to be a speaker. I am shy and private, and this is so far from my comfort zone. Yet here I am. I have found a way to make my husband proud and bring comfort to people.

On self-care: “People who are the caretakers for a loved one, usually women, give their everything for months or years on end, often begin to fall apart and learn the hard way how important it is to take care of themselves as well. I am not very good at it, but I am learning. Make sure to eat at least two meals a day, preferably healthy. Vitamins are essential. Seven cups of coffee and two bars of chocolate are not helpful, no matter what. Walking in a place with more trees than people sets my heart at ease. Talking to a good friend who loves me, even when there is nothing left to love, is even more important than the vitamins (but take the vitamins anyway). Buying new lipstick or shoes can be very helpful as well, but sometimes, the thought that buying something will somehow change my circumstances is laughable or cryable. Reading a good book, coloring with my kids, watching the waves at the ocean—all good. Each person takes care of themselves their own way, but it has to be done.”

Caring, communicating, sharing: The communication between this special couple is paradoxically limited, yet so intense. “Yitzi can say so much with his eyes. We actually spend more time talking and being together than most married couples.Dina’s honesty, courage, sharing of struggles, pain and growth have benefited so many With all of today’s technology and devices of instant communication, many are losing touch with the simple gift of face to face human communication and presence. We need to see each other’s faces, expressions, look each other in the eye and share our true selves.” She urges her audiences to share their stories and real selves, and offer their gift of compassionate listening to their friends. “We need to share our stories, to connect and support each other. While we often can’t solve someone else’s problems, concern and creating a feeling of community are absolutely vital.”

Dina’s honesty, courage, sharing of struggles, pain and growth have benefited so many. She has taught by hard-earned lesson with words from the heart, helping us learn to choose happiness and honestly share our humanness with those around us; to cherish each moment of life and each muscle we can move; to appreciate each smile and word we can share and give.

For further information and inspiration:

Miriam Karp is an award-winning writer, artist, Judaic studies teacher and lecturer. Her paintings explore intimate moments in Jewish life. Her first book, Painting Zaidy’s Dream: A Memoir of a Searching Soul, shares her story of search. Miriam lives in Cincinnati with her husband and family. Visit her website here.
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Chaya Temecula June 16, 2017

Thank you for writing this! Nechuma Dina is SO amazing. She IS wonder woman and I'm glad you put it into words for those to read. Reply

Michelle July 13, 2017

My mother was diagnosed with ALS in May 2016. Her doctor put her on riluzole, letting her know there was no cure but the medication might provide her a few more months of delayed symptoms. ALS progresses at different rates and affects different body parts first. My mother, being 73 at the time, fell into a category of what they call "fast progression" (older female). Her arms weakened first, then her hands, her mouth, and throat, and finally her lungs. Throughout her two-and-a-half-year ordeal, she was able to walk with assistance nothing was really working to help her condition.I took her off the riluzole (with the doctor’s knowledge) and started her on amyotrophic lateral sclerosis herbal formula i ordered from Health Herbal Clinic, her symptoms totally declined over a 5 weeks use of the ALS disease natural herbal formula. She's now almost 75 and doing very well, the disease is totally reversed!! Reply

SHERIDAN VERNON LELAND via chabadofwilmington.org June 30, 2017

This Lady is a miracle of G-d. May she stay strong, healthy, and spiritual. My prayers to the family. Reply

Helen Dudden United Kingdom June 27, 2017

A woman of great courage and compassion. Reply

Gilana Winooski, VT June 26, 2017

“The pain we feel is directly related to the love we feel. If we are lucky, then the pain is excruciating."

Beautiful - made me cry. May Hashem bless you both. Reply

julianne USA June 26, 2017

AMYOTROPHIC LATERAL SCLEROSIS (ALS)

I was diagnosed of ALS (amyotrophic lateral sclerosis) in summer of 2012, my symptoms started out with a "foot drop" on my left foot, from there my left leg lost all muscle tone followed by slurred speech and inability to eat without getting choked, strangled, and coughing. My neurologist prescribed me some medications to help my symptoms but the medications did no good and their side effects were too severe. In 2015 i started on NewLife Herbal Clinic ALS Herbal formula treatment, i read alot of positive reviews on their success rate with the ALS Herbal treatment and i immediately started on the treatment. Just 11 weeks into the ALS Herbal formula treatment I had great improvements with my coordination, speech, breathing and muscle movements. I have basically gone stronger than i'd thought i could ever be again, visit NewLife Herbal Clinic official website Reply

Caylah Devorah Montreal June 26, 2017

We have a soul in the body. So true the soul show through like a sock wears through and the toe sticks out. May Hashem grant you peace Reply

Anonymous Jerusalme June 26, 2017

You're right - not to be a heroine - take a vacation before you need it (though you probably always do) - enjoy all the gifts you have - ask ה'for strength all the time and keep spreading your truth. Your husband is a tzadik. His encouragement is beyond the words he works so hard to share. Reply

David June 26, 2017

"World-renown musicians made a video for Rabbi Yitzi Hurwitz based on lyrics he wrote before he became ill)"

That should read:

World-renown musicians join together to sing a song that Rabbi Yitzi Hurwitz wrote before he became ill. Reply

Miriam Karp Cincinnati June 27, 2017
in response to David:

Thanks for the correction David. You're right. Reply

Andrea Mann 23 Cedar St. Marblehead Ma via jewishpeabody.com June 16, 2017

Truly Amazing! Reply

Anonymous June 16, 2017

Unvarnished Writing I like this a lot. Rebbitzen Hurwitz's journey is not whitewashed or filled with saccharine platitudes. This couple is taking excruciating pain and transforming it somehow. I am sure that it will all be understood someday - and may that day be soon! Reply