By Shlome Zionce for Ami Magazine
Of all the people I’ve ever met, no story has ever touched me like that of Rabbi Yitzi and Dina Hurwitz.
Rabbi Yitzi, who together with his wife founded Chabad of Temecula, California, is struggling with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
It’s an illness with which I am unfortunately all too familiar. My grandfather, Reb Meir Zissel (Sidney Max) Zionce, z”l, also suffered from it, and it ultimately took his life in the summer of 2014. Rabbi Yitzi can no longer move even a finger and he is fed intravenously. Neither can he speak, as the muscles in his mouth don’t work anymore. But thankfully he can still smile, and he does.
Yitzi and I communicated by means of a special sophisticated computer that reads Yitzi’s eye movements. Thanks to this amazing piece of technology he is able to type words and sentences that are then spoken by the computer, giving him a way to communicate with others. “Welcome!” he exclaims as soon I’m shown into the room.
Using this machine is no easy task. Typing a short sentence can take several minutes, but Rabbi Yitzi painstakingly spends countless hours each week writing a dvar Torah that he shares with his thousands of followers around the world on his blog, yitzihurwitzblogspot.com. I have come to the Hurwitzes’ house today in Los Angeles to learn about these two special people who have experienced so much darkness over the past few years yet have managed to make the world a brighter place.
In the course of our conversation Rabbi Hurwitz and his wife open their hearts and bare their souls, speaking candidly about their lives. Throughout my visit I find myself riding a roller coaster of emotions. There are moments when I almost burst into tears and others when I feel like dancing. I hope their story will move you as much as it moved me. I ask them to begin at the beginning, when they first met. Mrs. Hurwitz responds, as she is often her husband’s voice, but Rabbi Yitzi also occasionally speaks through the computer.
* * *
“Yitzi is from Crown Heights and I’m from California,” Dina Hurwitz tells me. “My father is a shliach in Huntington Beach and I grew up in LA. But every Chabad shliach is also based in New York, so we took many, many trips to Crown Heights.
“Yitzi and my cousin are best friends. Yitzi and I had been mentioned for each other dozens of times but I was waiting because I had an older sister, although I eventually asked her permission. When Yitzi and I were dating we talked about going on shlichus. It was something we both wanted to do. I had grown up that way and had seen the value and purpose of it. Yitzi’s father is a diamond cutter, but Yitzi grew up wanting to be the Rebbe’s soldier, going out and teaching Yiddishkeit to people who didn’t have the privilege to learn about it,” she says proudly.
“My conditions were that we were either going to stay in the United States or go to Eretz Yisrael. I wasn’t going to go to a country like Thailand. I also wanted to be in a place where we wouldn’t have to send our kids away when they were still very young. We ended up in a city called Temecula, which is about 100 miles from Los Angeles. We lived there from 1999 until Yitzi wasn’t able to speak anymore, which was in 2013. That’s when we moved to LA, so we’ve been here for six years.
“Yitzi and I had always worked together for Friday night seudos, Yomim Tovim programs and things like that. It was a small Chabad House, and for many years it was in our house. Eventually we moved into a storefront. When we lived in Temecula the city had 40,000 residents. By the time we left 15 years later there were 150,000 people. Chabad of Temecula just bought a property where they will hopefully build something nice.”
“Our community consisted of people not only from Temecula but from the neighboring cities. These were really good people, hardworking, middle-class Americans. There were a lot of kids in our Hebrew school, but because a lot of the families were intermarried we didn’t have a minyan of fathers. So we had different crowds, one for the minyan and one for the children’s program.
“In order to make ends meet—we have seven kids, ka”h—Yitzi took on a few other jobs. One of them was working as a Jewish chaplain in a mental facility for the criminally insane. Another was doing hashgachah on a dairy farm, which meant that he slept in his car three or four times a week, waking up every hour to check on the cows and the machinery. We hardly ever got to see him except on Shabbos. He would come home during the week to take a shower and give a class here and there, but he was always in a rush to get back to the farm. We were working hard but it wasn’t a bad life, it was a good life. Baruch Hashem, our children are healthy. They’re sweet and they’re smart and they have a lot of character.”
“What are your kids up to now?” I ask, wondering about the quiet in the house.
“They range in age from 13 to 22. Our oldest child, a daughter, got married a year ago. Our second oldest is in Crown Heights working, and our next son is in yeshivah in Crown Heights. The next son is in Melbourne for yeshivah. Then I have two daughters in high school and the youngest who is still in cheder, so there are only three kids at home.”
“When did you realize that Rabbi Yitzi was unwell?” I ask.
“A little while after Yitzi turned 40 he told me that his mouth didn’t seem to be… Something was wrong. Every once in a while his words would get slurred and his tongue felt funny. I told him to come home and get some rest. So he took some time off from his job and came home and slept like a regular person in a bed every night. His symptoms seemed to get better but then they came back, so we started going to doctors. It took six months until he was diagnosed with ALS.”
“That must have terrifying,” I say.
“It was,” says Mrs. Hurwitz. “I once spoke to a woman whose husband had been feeling a little dizzy and drove himself to the Mayo Clinic. His wife didn’t even think she had to accompany him to the doctor. Within one day he knew that he had ALS. I can’t imagine that kind of shock. We had a gradual buildup until the diagnosis so the whole thing was gentler, even though the not knowing was upsetting. Yitzi was diagnosed on his 41st birthday with bulbar onset ALS, which starts in the mouth and is the most aggressive form of the disease. They told us that he would have somewhere around two years from the onset of symptoms, and six months had already elapsed. We went through a lot of changes that year. Initially the changes are in your head, when you re-imagine what your future is going to be like and think about all the things that will probably never happen,” she says with evident sadness.
“Yitzi has always been able to focus on what he can do right now, on the things that are still possible. He’s unbelievable. Thankfully he has a mission and that hasn’t changed; it’s just the way he is doing it that has changed. Yitzi has always been a great communicator, talking to anybody and everybody, always out there in the world with a lot of energy. This was not a person who wrote letters; he never even wrote a shopping list. The longest note he ever wrote to me was on a business card.
“But writing is how he communicates now because communication has always been his thing. He spends 20 to 30 hours writing a dvar Torah every week. For me to take over and become his voice was a very big change. I wasn’t used to it. I wasn’t the outgoing one, he was. In the beginning he’d be giving a speech on Shabbos in the Chabad House and I would have to get up there and finish it for him when he got too tired,’ she says with a sigh.
“You did the speaking on Shabbos?”
“I never got up there to give a speech; it was a shul. But I sometimes had to finish off what he said. The problem was that I never really knew what he planned to say; I had to wing it and make it up. It was hard for the community to watch that. And it was hard for me because I had a huge phobia of speaking in public, even in our tiny Chabad House.
“Anyway, so we decided to make the move to LA. Four of our kids were already going to school here, so we figured that meant that at least four of our children wouldn’t have to switch schools. We were immediately met by an unbelievable show of support from our fellow shluchim. They’re our band of brothers, our family. They even created a fund to take care of our financial needs that is literally keeping us going.
“After we moved here Yitzi’s body started to get even weaker, first the left side then the right. When we moved here he could still walk. The Chabad yeshivah is right next door. If you look outside the window you can see the dormitory. In the beginning he would go next door to daven, but when his muscles got weaker I would walk with him. You never think about what the neck muscles actually do, but there was a period of about a month when Yitzi’s neck was strong enough to hold his head up but not if he was wearing his hat. And wasn’t a heavy hat, not like a shtreimel. I would hold it and give it to him right before he went into the shul. His head would drop a little bit, but he wanted to wear his hat in shul.
“Eventually we got a wheelchair, and some bachurim would help carry it down. Then after a while we got an electric one that was much bigger and had more support for the neck. The nurse would take him around the block because it was just too difficult because of all the stairs. Ever since he had the tracheotomy, though, he doesn’t get out that much. We tried at first but it was really hard. Fortunately, the yeshivah boys stepped in and brought the shul here. That’s the aron kodesh,” she says, pointing to the next room. “They lein here on Mondays and Thursdays, and on Shabbos, Yom Tov and Rosh Chodesh there’s a regular davening.”
“Can you tell me about Yitzi’s weekly dvar Torah?” I ask.
“This past Shabbos was six years since he began to write them. He started doing it by typing on his phone with his thumb because that was the only finger that worked, and then he switched to the special computer. He missed a few weeks here and there, but he’s filled them all in by now. Hopefully we’ll put it into a book. We’ve been working on it but it’s still in the beginning stages and we haven’t found a publisher yet. Yitzi also writes a compilation of marriage advice every year for Tu B’Av. It’s supposed to be for men but it’s really good for women as well. It’s on his blog. We made a little booklet that we gave out at my daughter’s wedding. I’ll give you one,” she offers.
“So what happens here on a daily basis?” I ask.
“It’s a different kind of life. We have a lot of visitors. Some people want to bring over some music to lift our spirits. Others just heard about Yitzi and want to pay him a visit. Some people have real problems—health problems, marriage problems—and want his advice. People from the drug rehab program here in LA have visited quite a few times. A lot of students also come, especially from schools for kids who are going through hard times.
“Then we have the 11th-grade Gemara classes from the yeshivah next door that meet here four times a week. Yitzi has all of his sefarim downloaded onto his computer: siddur, Chumash, Tanya, Likkutei Sichos, maamarim, Shulchan Aruch, Gemara, Minchas Chinuch. There’s a guy named Nochum who Yitzi texts whenever he wants a new book. It’s a regular laptop that allows him to get email, and it also does text messaging through the computer. He likes stories too, but he usually doesn’t have time for them.”
Our conversation is interrupted by a knock at the door. Mrs. Hurwitz gets up to answer it and returns a few moments later. “It’s one of Yitzi’s chavrusas. He said he’s going to come back later. Yitzi also has chavrusas with people by Skype. Some of them used to go to the yeshivah next door and they keep it up even after they leave. It’s a pretty cool computer!” she quips.
“What’s it like living in a fishbowl?” I inquire.
“It’s really a challenge, especially as the kids get older. The younger ones have a very hard time with it. This year I told them I would make official visiting hours so we can have family time in the evening. I’m always trying to find the right balance between what’s good for Yitzi and what’s good for the rest of the family. I want to make sure that my husband is having a good life. He’s a real people person.
“In the beginning I would be out here the whole time whenever he had guests, being a buffer of sorts. But he doesn’t really need that anymore, and the regular visitors don’t need it either. Of course, when people just drop by it can be a little disconcerting, especially if they flew in to surprise us. I mean, we have kids and we make plans. They’re really just normal kids who are living an unusual life.
“Look, we try to prepare for the things that we know will be hard, but then there are unexpected stresses. For example, we can be driving in the car and the kids will look over and see a father singing to his kids in the car next to us, so that’s painful. But we still know how lucky we are that Yitzi is here. It’s already six and a half years later, which is five and a half years longer than we thought we had. We are really grateful but I can also feel my kids’ exhaustion. It’s hard to live this life, and as they grow older and everybody has more responsibilities it gets even more difficult. But Hashem has given them an amazing amount of energy and an amazing spirit. They’re not without their own struggles, but nobody is,” she says.
“What would you tell somebody who has just been diagnosed with something terrible?” I ask Rabbi Yitzi.
“Yitzi probably has a dvar Torah that addresses that question perfectly,” says Mrs. Hurwitz with a smile. “Let’s see. Parshas Beshalach? Is that the one you usually share when somebody visits?” she asks her husband.
Rabbi Yitzi starts speaking: “What keeps me going is the realization that G-d is real, that He has a plan for the world and that I’m a part of it. Everyone is a part of it, and everyone’s part is important. So if He put me in this position, He must want something from me that I can only do in this position. When you see it this way, instead of feeling down when you are in a challenging situation, you are filled with a sense of purpose and you are lifted up.”
Considering that this is how he views his own unfortunate situation, it is no surprise that the Hurwitzes have inspired thousands of people around the world with their courage and faith.
“The dvar Torah I told you about is also very good,” Mrs. Hurwitz tells me. “I don’t know if he wants to share it now or later. It’s not a big deal for him to pull it up on his computer. It depends on how pressed you are for time.”
“I’m not pressed at all,” I respond. “I just don’t want to overstay my welcome! Can you tell me what life was like as it was happening and what you’re feelings were?” I ask Rabbi Yitzi.
“He might have to write it up, which will take a little time,” she explains. “Do you want to find the dvar Torah first?” she asks her husband. He does. After he has located it on his blog the computer reads it aloud:
“Sometimes it feels like we are in an impossible situation. The whole world seems to be against us and we are backed against a raging tide. At times like these, we need to realize that it is Hashem Who turned us around and put us into this situation. He wants us there. There is a purpose that can only be realized through this difficult situation.
“Will we complain? Will we cry out to Hashem? Of course. Then we must lift our heads and forge ahead, obstacles notwithstanding. When we do that, Hashem splits seas for us.
“For the past three years I have been in a difficult predicament, which seems to only get worse. Do I pray? Do I cry out to Hashem that He heal me? Yes, all the time. However, the illness has not broken my spirit because I know that Hashem put me here and that He wants me here. I don’t like it, but I continue to do what I can to bring Moshiach, despite my difficulties and even using my difficulties as a platform to lift others up. You can do it. Don’t be afraid, Hashem is with you.”
“That was written a few years ago,” Mrs. Hurwitz tells me. “You have to get used to the way the computer reads the Jewish words.”
“It wasn’t hard to understand at all,” I assure her.
“Wait until it has to pronounce Parshas Behaalosecha!” she says with a laugh. “But what did you ask him before?”
“I wanted to know what it was like to find out about his illness,” I remind her.
“It’s going to take him a while to answer. Is there anything you’d like to ask me in the meantime?” she asks.
“I think that a lot of people who are healthy just go through life not appreciating what they have,” I offer.
Mrs. Hurwitz nods in agreement. “I talk to a lot of teens and young adults. In the summertime there are a number of traveling camps that come through LA, and this is one of their stops. I think it’s good for people to see Yitzi because it reminds them that we all want to do things in our lives and we make up excuses why we’re not doing them. We tell ourselves, ‘If only I had more time or money or power!’ Yitzi certainly has a lot of excuses he could come up with but he never does.
“Sometimes I’ll share personal things because I want people to know how important it is to take the time to do them. For example, when my husband first got this computer in the hospital after the trache, the first thing he said to me was ‘Good morning, Dina. I’m sorry that you’re tired. I love you and appreciate you more than words.” Mrs. Hurwitz’s face lights up as she tells me this. “It took him hours to write that. You and I could spit it out in a second. But how often do we tell the people in our lives that we love and appreciate them? We usually wait for something horrible to happen before we tell them how important they are to us. But there’s no need to wait. He sends me other text messages too, like ‘you kvetch so nicely!”
“He has a good sense of humor,” I say.
Rabbi Yitzi “reads” another one of his divrei Torah:
“I remember when I was finished with my first round of tests. The neurologist gave me his preliminary findings: ‘You have bulbar ALS.’ I had no idea what that meant. He explained the severity of it to me and said he was going to refer me to an ALS specialist.
“I had gone there by myself. Walking out of his office into the empty hallway I broke down in bitter tears. When I composed myself, I headed out of the building. The first thing I saw upon stepping outside was a young man falling to the ground having a seizure. I ran to help him. It dawned upon me that there was still much purpose for me in life. I decided that regardless of the outcome of any future ‘tests’ I would remain positive and find ways to fill my life with meaning and purpose. This has made my life and the lives of those around me happier and far more fulfilling.
“We all suffer hardships and pain; it’s what we do with them that makes the difference: ‘This is the Torah of the metzora.’”
“Unfortunately,” Mrs. Hurwitz picks up, “that particular doctor’s appointment was on a Friday. I had to drive to LA to pick up the kids from school so I wasn’t able to go with him. I remember he called me in the car and told me what the doctor had said. Like most people, I had never really heard of ALS before. There I was, sitting in terrible traffic on a Friday afternoon and Googling cures for ALS—and nothing came up. So I tried a different spelling, and all these ads start popping up: preparing for the end of life, ads for ventilators and computers that speak for you. It was horrifying. Terrifying. Right away I started thinking about the kids. How were they going to manage?”
“How did you break the news to them?”
“I spoke to Chai Lifeline, but I had a lot of time to prepare for that. For months I dreaded the conversation. I always mentally divide my kids into the older ones and the younger ones, even though there’s not much space between them. The older kids were 11, 12, 15 and 16, and the younger ones were six, seven and eight. So we divided the kids into two groups and I told the younger ones first, just the basics. ‘You know that Tatty’s voice has been sounding a little funny,’ I said. ‘Well, it’s going to get worse because he has something called ALS and his body is going to get weaker. We don’t know exactly what will happen, but what we do know is that Hashem is going to take care of us,” she says, recalling what must have been a very difficult conversation.
“The two younger kids were okay with that. But the eight-year-old sat with it for quite a while, not saying anything and trying to understand how it would change our lives. With the older kids it was a lot harder. I told them the same thing but added what the doctors were saying, that the typical prognosis was two years, and we’d already been seeing doctors for six months. Then I gave them a few guidelines. The first was that we didn’t have to figure out the rest of our lives right now; all we could do was live one moment at a time. How could we make plans for later when we didn’t know what would happen? Maybe at some time in the future we’d be able to plan a week in advance or even a month in advance, but right now we would take things one step at a time.
“The other thing I told them is that whatever emotions they would have were okay. Happy, scared, angry, disappointed, disillusioned—whatever, they’re all fine. The only thing that wasn’t allowed was to use it as an excuse to ruin their lives.”
“I also asked them to please not Google it. They want to know why. Well, my kids are baseball fans, so I explained that all they would see was that Lou Gehrig had died of it 50 years ago and they still hadn’t found a cure, so why would they want to read about everyone who had the disease and died? And anyway, I said, the people who are writing those articles don’t know your father and his attitude, and they for sure don’t know our G-d. They asked questions and we all cried. It was a hard talk.”
Mrs. Hurwitz is becoming quite emotional. “A few weeks later my daughter came downstairs crying hysterically.” At this point Mrs. Hurwitz chokes up. She pauses for a moment before continuing. “My daughter said, ‘I Googled it.’ ‘Why?’ I asked her. ‘Because you told me not to!’ ‘I was protecting you!’ I explained. ‘I know that now,’ was her response.
“Since I’ve always been honest with my kids they knew they could be honest with me, too. We also have an unspoken rule in the house: When they cry, I cry. But they don’t have to cry when I cry.”
I’m taken aback by how open Mrs. Hurwitz is about her feelings and vulnerability; that must be why so many people turn to her for comfort and reassurance when they themselves are going through rough times.
“It was a complicated period in our lives. On the one hand, it was really hard to go from being healthy to not being healthy and worrying about the future, but we were simultaneously being enveloped by an outpouring of love that was almost like being on a high. Don’t forget that we were basically living on our own. We had a little Chabad House in the middle of nowhere. We were very isolated. Then we found out that we really weren’t alone. We were inundated with phone calls, people doing mitzvos in Yitzi’s zechus, dinners being sent our way and people driving our kids to school.
“My son Eli Chaim, who is now 19, had his bar mitzvah shortly after the diagnosis. Yitzi was diagnosed on Rosh Chodesh Adar, and the bar mitzvah was right after Pesach. It was such a beautiful, hopeful day. It almost felt like Moshiach was in the air. Aside from the locals and our family members, around 450 shluchim came from all over to say mazal tov and make us feel loved. I guess we’d never really realized what kind of incredible community we were part of. Everyone should hopefully be healthy, but if anybody has to be sick he’d be fortunate to be part of our community because it’s really incredible.”
Rabbi Yitzi speaks again, each word measured. “Hero father,” he says.
Mrs. Hurwitz smiles. “Oh, he wants me to tell you what Eli Chaim said. A couple of years ago Eli Chaim told me one day, ‘It feels like we lost a father and the world got a hero. The sad thing is that we need a father and the world needs a hero.’ Yitzi is very much a father to the kids. We bring a folding table in here and we eat every meal around the table. Shabbos, Yom Tov, any time all the kids are sitting down for dinner at the same time we do it in here. We also sometimes have parent teacher-conferences so the teachers can meet Yitzi and understand a little bit of what the kids are going through.”
Rabbi Yitzi speaks again. “And food.”
“What do you mean, ‘and food’?” she asks him. “Oh, I know. Yitzi texts all the kids all the time. He had a project with my son earlier this year making pickles. He’s always finding recipes. We tried fruit leather but it didn’t work out so well. Of course, it’s not like Yitzi’s working on these projects too. They’re doing all the stuff and he’s just telling them what to do. You have to plan it out more, and it takes much longer and you have to be patient. My son who was learning for his bar mitzvah would also come in and learn here, but it’s not as lighthearted as a two-way conversation. And don’t forget that teenagers don’t always have patience or care what you have to say. Nothing about this is perfect. I’m not going to romanticize it. It’s super-hard, but there are definitely a lot of beautiful aspects,” she says thoughtfully.
“You’ve said a lot of things that most people wouldn’t feel comfortable expressing,” I tell her.
“Yitzi doesn’t talk about feelings as much as I do,” she says. “His divrei Torah are intellectual. They’re deep thoughts, whereas I write a blog that is much more emotional. I haven’t written in a while; I only write when I’m inspired. A lot of people are going through difficulties. If I pretend that everything is fine or if I don’t talk about the hard stuff, whom am I helping? No one is going to benefit from a fairy tale. Of course, there are things that I don’t talk about. Not everything is out there. But I believe we have an obligation to help each other, and it’s also good for people to know that they aren’t alone. Not everyone who’s caring for someone who is sick will experience the same thing but there are similarities. I wake up every day with a heaviness in my heart, and I go to sleep knowing it’s going to be there again in the morning,” she confides. “But I still try to do the best I can. I just believe that if we pretend and sugarcoat everything we’re not helping anybody. Part of the shlichus we have been given by Hashem is to help people who are going through really hard times. That’s why I have to be honest. Otherwise, what’s the point?”
“I would imagine that it takes a lot of courage to put yourself out there,” I say.
“I agree. Whenever I speak somewhere, the following day I have what I call a ‘vulnerability hangover.’ I hide in my room and cry because I just exposed so much, but I get a lot of positive feedback and you never know what somebody is going to relate to. So yes, it does come at a cost. I have a sign in my room that my daughter made for me that says ‘Choose Courage.’ Going out there and doing your best is courageous. We all do that in our own way in our lives.”
“Being strong doesn’t feel like being strong,” Rabbi Yitzi points out.
“Yes,” Mrs. Hurwitz agrees. “That’s one of our lines. A lot of teenagers tell us, ‘Oh, you’re so strong.’ I want them to know that being strong feels like you’re going to fall apart any second, but you keep doing what you have to do. And I can’t say that time hasn’t taken its toll; it has. I’m more tired than I used to be and I get more emotional. It’s the same load but it feels heavier because I’m tired. And my kids are all over the world. Thankfully they’re doing well, but the more kids are here the more energy is in the house, and the more distractions I have. This past year was quieter than previous ones, and I struggled with that as well.”
“Does that mean that you want more visitors?” I ask
“Having my kids around is different from having other people around. I get energy from the kids. To other people, I give energy. A lot of parents struggle when their kids leave the house. We had a completely empty nest for three weeks this summer and it was way too quiet.”
“Does your married daughter live here?” I inquire.
“No, she lives in Crown Heights,” she says as she points out a photo of a married couple hanging on the wall in Rabbi Yitzi’s line of sight.
“A year and a half ago, for Yitzi’s 46th birthday, there was a tefillin campaign. This year there was another one. See that picture over there? It’s made up of 10,000 pictures of people putting on tefillin in honor of Yitzi.”
Next she takes out a thick photo album and starts showing me pictures. “As you can see, Yitzi’s decline was very rapid after he was diagnosed, but he’s basically been the same for the past five years. In this picture from Eli Chaim’s bar mitzvah, the only thing you can see is that his mouth was stiff because the muscles were starting to get weaker. Look at how the shluchim were just standing around like guards, listening and watching. They didn’t want to eat the food because they didn’t want us to have to pay for it, but they all came to show Yitzi that he wasn’t alone.”
“Tell me more about the fund that was established to help your family,” I say.
“When Yitzi first got sick, two shluchim came to the house and said, ‘We don’t want you to worry about money. We’re going to take care of you.’ A farbrengen had been planned for Yitzi’s birthday right after he got his diagnosis. When I asked him if he wanted to cancel it he said no. We thought that maybe 30 friends would come but 250 shluchim showed up, and they asked Yitzi to leave the room for a few minutes. One of them then got up and said, ‘We’re creating a fund. This is my phone number. I want you to text me right now how much you’re going to give each month.’ These shluchim are raising the money we need to live. They make sure that we are well taken care of.”
At that moment a Lubavitcher bachur from the yeshivah next door walks into the room. “This is Dovid,” she says, introducing him. ‘Dovid is from LA, and he’s been part of our family for five years. Yitzi usually davens in the morning and then the bachurim come and put tefillin on with him.”
We pause the interview while Dovid puts both Rashi and Rabbeinu Tam tefillin on Rabbi Yitzy. We resume a few minutes later.
“These are photos from my daughter Fruma’s wedding,” she says, taking out another album. “For the kabbalas panim she was sitting on a stage, but when Yitzi came in in a wheelchair she left the stage and went over to where he was. Then she bent down on the floor and put her head in his lap so he could put her hands on her head. I don’t think there was a dry eye in the hall.”
Once again I find myself fighting back tears. “Do you travel a lot?” I ask her.
“I did, for a couple of years. Two years ago I was in 30 different cities for speaking engagements. This year I did far fewer trips. Part of the reason was that my older kids are away, so if I’m not home the younger ones have to be sent to friends. But they’re not babies anymore, so we’ll see what happens this year. It takes a lot out of me. A lot of people also tell me their troubles. Then I can’t get them out of my head when I walk out the door. Whatever room I’m in there’s a mother who lost a child and women who never had children. Then there are cancer survivors and people who didn’t survive. And there’s almost always one person in the room who has a family member with ALS,” she says sadly.
“Really?” I ask. “I didn’t think it was so common.”
“I remember one time being driven home after a talk in Sydney and I said to someone, ‘This is the first time I’ve given a speech and there wasn’t anybody with a connection to ALS in the room.’ She said, ‘Oh, that’s because it was me.’ Her uncle was suffering from ALS.”
“How does your husband cope when you’re away?” I ask.
“It’s hard for him, but he’s also very proud of me. The nice part for me is that I get to meet new people and see new places. Sometimes I literally fly in and out so there isn’t much time, but other times I get to tour a little bit. Yitzi and I text a lot and we video chat. Well, we video and I chat. He always asks the shluchah for recordings of my speeches so he can hear them later. I think he wants me to do it. I mean, I know he does because he told me he does. Public speaking was my biggest fear but it’s not a fear anymore. I wouldn’t say that I’m a natural but it’s gotten a lot easier.”
“Are you allowed to put a plug in for the fund?” Rabbi Yitzi suddenly interjects. Like any other father, he wants to know that his family is secure financially.
“It’s called the Hurwitz Family Fund,” says Mrs. Hurwitz, “and if you look it up online it explains everything and has articles about the family.”
“So anyone can chip in and help,” I say.
“Yes. A lot of work goes in to raising the money for the fund.”
“You chose to get a trache,” I say to Rabbi Yitzi, “It’s a massive decision that nobody should ever have to make. Do you have anything to say about that?”
Mrs. Hurwitz interjects. “For every decision we called a rav. Halachah is halachah, but when it came to this decision, the rav said that we had to ask him what he wanted to do and not let him answer for three days. He didn’t want it to be a knee-jerk reaction to do everything to heroically extend his life just because he’s a frum Jew and a Lubavitcher. Absolutely not. He had to think about it for three days.”
I nod. She continues.
“It was a really hard three days, for both of us,” she admits.
“Did he tell you what he was thinking?” I ask cautiously.
“I know him well, but there were certain things he was struggling with. He called some friends who were doctors because he wanted to make an informed decision. The two things that were really concerning was that at that point he was constantly feeling like he was choking, and he didn’t think he could live like that. The doctor told him that if they put in a trache that would go away, which it thankfully did. The other thing was that he would have to be completely reliant on other people and nurses—and what if they weren’t reliable or just not good people? So I promised him that I would do whatever has to be done if he wasn’t comfortable with someone.
“I have to admit that at the time I had no idea what that would mean, but I definitely kept my word. Two years ago it meant 16 hours a day five days a week, because we just didn’t have competent nurses at the time. The kids had a really hard time with that because the other eight hours I had to get some sleep. I was so tired that I could barely function but they understood that it was an emergency. The problem arose when there were two emergencies at the same time. Like the time Yitzi had a breathing emergency, and she,” she says, pointing to their daughter, “slammed her finger in the door. She’s screaming and he’s panicking. As a mother I wanted to take care of my kid, but one emergency was life-threatening and the other wasn’t.
“Then one time we were having a farbrengen and a few of the yeshivah boys, including Dovid, asked me why I had never taught them how to take care of Yitzi. Since then I never did a night shift until this past weekend, when the yeshivah had vacation. So on Friday night my daughter Mussy did two hours, Chava did two hours, Dovid did two hours and I did two hours, but on Motzaei Shabbos I was on my own. Friday night is super-hard because every time I open a book my eyes automatically close.”
Rabbi Yitzi offers his wife another compliment. “You are amazing,” he tells her. Her face is beaming; it’s clear that she appreciates every kind word that he painstakingly writes to her.
“Thank you, Yitzi,” she replies. “Do you want to share with him what you wrote about choosing to live?”
Rabbi Yitzi reads me his blog post:
“It is now over five years since Hashem gifted me with ALS. But this week we celebrated a milestone, as it is three years since I had a tracheostomy.
“It was the day after Rosh Hashanah. I had been using a machine called a BiPAP [bilevel positive airway pressure] to help me breathe but I still seemed to be fading. My wife Dina took me to the hospital, where I was diagnosed with pneumonia, and my oxygen level was dangerously low. It was at that point that I was given the choice to have the tracheostomy and live, or not to have it and put an end to the suffering and difficulties. Legally and halachically it was my choice, and with Dina’s support I chose to live. The simple fact is that if I would not have had it then I wouldn’t be here today and possibly wouldn’t have lived through the week.
“Another fact is that the true sacrifice in this story is my wife’s. She is the one who has the brunt of the hardships, taking care of me and the family with love and tears. She has to be mother, father, wife, caretaker, sometimes nurse and a multitude of other titles. I can’t begin to imagine how much she suffers, not having a normal husband to do what husbands do for their wives.
“All I am able to do is listen and write to her, but she has given me a life and the ability to watch my children grow up. With her support and womanly cleverness, she pushes me to be a better father, to study Torah more and more and to write. I owe it all to her.
“Being able to see my children grow is one of the greatest pleasures. It is incredible that with all the hardships they found a way to function as normal and healthy kids should. And I get to see them, talk to them and experience their personalities and talents.
“Over the past five years we were blessed to see amazing kindness from all over the world, and especially the Los Angeles community, but no one more than the five exceptional people who have taken on the responsibility of taking care of me and my family. We call them ‘the fantastic five.’ They are the ones who started the Hurwitz Family Fund, and in over five years they haven’t wavered. They are truly amazing.
“After having the tracheostomy I lost the use of my right hand, and with that went my ability to communicate. Before that I would type on an iPhone for communication and writing blog posts. For those nine days in the hospital I couldn’t communicate; I just let go and put my trust in Hashem, and my wife made sure I was taken care of.
“I was in recovery in the ICU when I began to understand the importance of bikur cholim, visiting the sick. Even though I wasn’t able to communicate I felt uplifted with every visit, whether it was a rabbi or lay person, man or woman. My children, being too young to enter the ICU, snuck in. I can’t begin to tell you how much I enjoyed seeing them.
“As Yom Kippur was approaching, we wondered what kind of holiday we would have in the hospital. The thought sounded grim, but we were in for a surprise. Just before Yom Kippur, a woman was ushered into the room right next to mine. Her children were with her and when it came time for davening they came to my room, and with the most melodic voices they sang the davening. It was truly uplifting.
“Over Yom Kippur, we had several visitors who walked to the hospital to see us. All in all, that Yom Kippur was one of our most memorable ones.
“I am blessed to live at a time when there are technologies that keep me alive such as the ventilator that breathes for me, and the incredible computer that reads my eye movements so I can communicate.
“While life is full of difficulties, pain and suffering, there is so much to be grateful for. I choose to focus on the positive parts of my life, and that keeps me going. There are my wife, my children, family, friends and you. I have the opportunity to learn and teach Torah. There is the hope that in the future a cure will be found or perhaps a miracle even sooner.
“Each of us has so much good in our lives. Even within the suffering and difficulties there is so much good to be found. Focus on the positive in your life and see all the love that is around you. There is so much you can do, and so much more you can give.
“May you have a good and sweet year, and may Moshiach come and put an end to all the suffering. The time has come.”
“Is there anything else I should be asking?” I ask him.
In response, he reads another post from his blog:
“The past few weeks have been trying for me. You know that I suffer from ALS. I am not able to move most of my body and I can’t talk. What I can do is smile and move my eyes. With my eyes, I am able to control a computer that reads my eye movements. With my eyes, I communicate with my family and write Torah articles. I am also able to text and email. My joys in life are my wife and children, lifting the spirits of others and teaching Torah through my articles.
“Over the past few weeks I couldn’t get my eyes to focus on the letters I wanted to write. I don’t know if it was psychological or physical, but my eyes weren’t cooperating. Writing one word took as long as five minutes. I can’t even begin to tell you how frustrating it was. I tried everything from relaxing to praying. Not being able to write to my wife and children, I felt useless as a husband and father. Not being able to write Torah articles, I felt useless and irrelevant. I felt like I was in jail. My thoughts were, what possible purpose could I have if I can’t communicate?
“That is where having a good wife comes in. My wife, Dina, said to me, ‘It is obvious that Hashem wants something else of you and that writing is not the only way, or perhaps less but more meaningful writing from the heart is what Hashem wants from you. On Shabbos, when you don’t use the eye gaze computer, you are still there and relevant. Maybe you should think of it like Shabbos, even if you can only see and look at people. That is meaningful to us. If you are alive it means that you are relevant to Hashem, and that you make a difference.’
“She also organized a farbrengen in my honor, where people took on good resolutions in Torah and mitzvos, in kindness and in living life in the ways of Hashem. And people around the world have also made resolutions, said prayers and sent me well wishes.
“You don’t know how powerful your Torah, mitzvos, kindness, prayers and resolutions are, and I am grateful for every one of them. I am also grateful to all of you who prayed for me at holy sites.
“So far, I have not gone wrong listening to Dina’s advice. She lifted me up, helped me reframe my situation and brought meaning back to my life.
“Thank you for all the love you have sent my way.”
“On Shabbos, when Yitzi can’t use the computer, we have ABC charts instead,” Dina says. “I’ll show you how it works.” She lifts a transparent plastic board with colorful letters printed on it and moves the computer away. She slowly follows her husband’s eyes as he attempts to spell a word using this board. It’s clearly far more difficult for both of them than using the machine.
“The board hardly weighs anything, but when that’s your means of conversation it gets heavy after a few words. It’s also a lot of work trying to figure out where he’s looking. Then if you’re as tired as I am and the word has more than six letters, by the time he gets to the seventh letter you’ve already forgotten the first three. So we try to do small words, five letters or less, and that’s what we use on Shabbos,” she explains.
“He’s really good with the chart. He can articulate a message in the fewest possible words to get it across,” says Dovid. “He won’t tell you something complicated.”
“I think you communicate very well without the machine,” I tell Yitzi. “I’ll tell you something I observed, and tell me if I’m right or wrong. With healthy people we don’t focus so much on their body language. But with you I can see your emotions in your eyes.”
“I agree,” says Mrs. Hurwitz. “Sometimes I want to move away from the machine so we can get that. It’s hard when we walk in and he right away looks at the machine to talk. The other thing is that when you usually talk to someone, you start to think about what you’re going to answer as soon as he starts talking. You completely stop listening to what the other person is saying. Yitzi once told me that he was learning to listen a different way because he’s not worried about a response; he’s just listening to what you’re saying.”
There is a moment of silence. It’s inspiring to watch this amazing team of husband and wife interact with each other.
The time has come for me to leave. I’ve been with the Hurwitzes for over three hours, and evening is starting to set in.
“It was really nice to meet you,” says Rabbi Yitzi. “Thank you for coming.”
“Thank you so much. I hope I can come back in the future. This was so inspirational.”
“She’s the real hero!” Rabbi Yitzi exclaims.
Mrs. Hurwitz’s smile widens.
As I leave the house I have no doubt that they are two amazing heroes.
Reprinted with permission from Ami Magazine. Photos by Shlome Zionce.
