Despite my discomfort with establishment religion, I am comfortable with my cultural identity. It’s cool to be a Jew, as long as you hold it down to Hanukkah and Passover, with an occasional nod to Rosh Hashanah, the Jewish New Year. Actually I have a deep respect for Jewish literature, history, and music. I knew I wanted to talk to religious leaders about hope. Jews will think anything to death. It was the inevitable death of a child, the daughter of a female rabbi on the West Coast, that caught my attention.
Venice, a beachfront neighborhood of Los Angeles, has been called Union Square, New York, on steroids. Both Union Square and Venice are packed with street vendors and musicians, Krishna followers and break-dancers. During the early twentieth century it was considered the Coney Island of the Pacific. An extended visit is not necessary to understand why that label stuck.
Gondolas cruise canals lined with palm trees, which seem straight out of that other Venice halfway around the world. Perhaps they are more like something you would find in Disneyland, only forty miles to the east.
There is an old-fashioned boardwalk populated by snake charmers and fortune-tellers, mimes and musicians, jugglers and tarot card readers. There is the weight lifting mecca of Muscle Beach. There is also a greater concentration of artists, eccentrics, and bohemians than in any other venue in Los Angeles.
In the midst of the sideshow, a rabbi tends to her offbeat flock and struggles to stave off a family tragedy. Naomi Levy shares her home with husband, Rob Eshman, publisher and editor in chief of Tribe Media, a multimedia company based in L.A. Their son, Adi, and daughter, Noa, fill out the family, joined by chickens and two pet pygmy goats in the backyard—positively de rigueur in Venice Beach. When she was a child, Noa was tentatively diagnosed with ataxia-telangiectasia, or A-T, a progressive, degenerative neurological condition. The disease affects various organs in the immune and nervous systems. Invariably, A-T is fatal.
In 1984, Levy was in the first class of women to enter the rabbinical school at the Jewish Theological Seminary in New York. In 1989, she became the first female Conservative rabbi to have her own pulpit on the West Coast. She remained there until 1996, when she stepped down to have more time for writing and teaching and taking care of her two small children.
In 2004, in another unconventional move, Levy founded a Jewish community called Nashuva, which translates from the Hebrew to “we will return.” Nashuva is a community that has no official membership and no dues. There is a focus on outreach to unaffiliated Jews and to those in interfaith relationships.
The growing community has a special appeal to those who have wandered away from Judaism, as well as to Jews who are deeply involved in social justice movements. Shabbat, or Sabbath services, feature rock music, African, and reggae mixed with traditional Jewish songs and prayers. Naomi adds meditation to the mix, which she says has long been a part of the Jewish tradition.
After our initial contact, I wanted to reach out to the rabbi to continue our conversation about how she had coped with her daughter’s illness, but I had difficulty connecting. I grew weary of message machines. Then Naomi left a message for me, explaining that she had been out of touch because she herself was in the midst of three complicated surgeries. She sounded guarded, offering no further details. When we finally connected, the rabbi told me what had been going on during the period of radio silence.
Naomi had been diagnosed with an infiltrative basal cell tumor on her face. That wasn’t as serious as the melanoma she had feared, but it still required several invasive surgeries. “They got really good margins, but they took off my nose,” she said about the surgeries. Say, what? I thought.
“They had to take off other things, like parts of my forehead and my scalp. They had to create a nose for me. It looked like a freak show because my forehead was connected to my nose.” Dire as this surgery sounded, Naomi seemed strangely calm about the situation.
“I am taking it one day at a time” was her only comment to me. I already felt for her, and we had not yet delved into her daughter’s illness. I asked her to talk to me about Noa.
At the time of Noa’s diagnosis, Naomi and Rob had known for some time that something was not quite right with her. The child’s speech was slurred, and she did not walk until she was two. By the time Noa was five, she still did not walk normally. The couple was alerted by doctors that this might well be serious. “We were in the dark about it. We had no idea what it was,” Naomi explained. “We went doctor to doctor, test to test. People were unsure what it was and how to deal with it.”
During this period of uncertainty, Naomi encountered a woman whose twenty-year-old daughter, Rebecca, was struggling with ataxia-telangiectasia. In January 1999, the woman asked Naomi to deliver the keynote address at a fund-raiser for Rebecca. After Naomi’s speech, the woman asked her to bless Rebecca before the hundreds of people who had gathered to support the young woman and her family. During the blessing, Naomi could hear many people weeping.
After the blessing, a doctor who was receiving an award for his breakthroughs in A-T research also spoke. He said that Rebecca’s disease was a blessing because it had led to the funding of such important research. The statement horrified Naomi because she saw no blessing, only pain and suffering. I have met my share of doctors whose feet stay firmly in their mouths.
Noa’s doctor had suspected she, too, had A-T, but the jury was still out. “I could not begin to imagine the torment Rebecca and her parents were living with daily,” Levy later wrote in Hope Will Find You, her book about Noa’s struggle for health.
“What did I believe? Did I believe in a God who could cure Rebecca? . . . [Who] would miraculously undo what nature and genes had done? No, not exactly. But I wanted to believe it. I prayed for that kind of faith in God’s supernatural powers and at the same time I prayed for Rebecca’s doctors. I hoped scientists could learn to correct the problem, treat the problem, cure the problem.”
Two years passed. On a Friday evening in July 2001, at the start of the Sabbath, Naomi and her family were gathered for dinner when the phone rang. It was the same physician who had shocked Naomi at the fund-raiser for Rebecca. “I had a suspicion I was right about her,” the doctor said of Noa. “The tests took months . . . She has A-T.”
Naomi’s world had shattered. “My legs crumbled beneath me,” she wrote. “I was sitting on the floor. I started squeaking. Crying . . . I was pinned to the floor by a gravitational force so strong I felt like the wood beneath me was about to give way and I would be sucked into the center of hell itself.”
What a way for a physician to break tragic news. The call was brief and without empathy. “I was caught off guard,” Naomi remembered. She had believed no news was good news and was stunned by what the doctor said. Naomi exploded in agony. She wrote that the doctor told her, “‘Most parents are so grateful when I give them the news.’” Naomi’s response was swift: “‘Grateful? They’re GRATEFUL?’ I hung up. I hung up on my daughter’s doctor.”
Despite what the doctor had said on the phone, the diagnosis still was considered tentative. Other physicians Naomi consulted told her they would not be able to be certain of the grim prognosis until seven more years passed, when Noa would be about thirteen. The subtext was, if she lives that long. By that age Noa would be growing stronger or weaker, and they would have their answer.
A-T is devastating. Respiratory infections and malignancies are common. The breakdown of the body is slow but steady. Once the doctor delivered his bad news, everyone in the family watched Noa closely, looking for any of the changes that had been described to them. All understood how frightening the possibilities were. So began the long family vigil.
Did you hope at that time? I asked Naomi. You are a rabbi. Did Judaism tell you how to hope? “In Jewish life, there is not a lot of dogma,” she answered. “No one is checking your faith system when you come into a synagogue. No one is asking you to proclaim a certain doctrine of hope. But hope is a very important Jewish word. The name of Israel’s national anthem is ‘Hatikvah,’ which means ‘the hope.’ The hope ‘to be a free people in our own land’ is two thousand years old.”
Next year in Jerusalem is the phrase that ends both the Passover seder and the Yom Kippur services. That defiant and hopeful cry speaks to the Jewish longing to one day rebuild the temple that was destroyed two millennia ago and to return home. For Naomi and Rob, however, home was under siege.
Naomi clearly remembers the jumble of emotions she felt as she tried to make sense of Noa’s illness, to figure out how to live with the terrible uncertainty. “I went through many different phases and, honestly, some did not make us hopeful at all. It was like a thick blackness that didn’t seem to have any contours.”
How did you function as a rabbi during this time? I asked. “It was a time I didn’t know how to pray or what to pray for. Should I pray to God to take this away? Did I really believe God had given this to her? I couldn’t believe that God would do that.” The same questions she had asked when she saw Rebecca’s suffering were surfacing in her own life.
The cries of Why me? What have I done to deserve this? are natural, if not inevitable. Even Job, the Bible’s long-suffering servant of god, never lost faith.
I asked Naomi if her own faith had cracked. “My faith is a complicated thing. When I was sixteen in Brooklyn, my father was murdered. A lot of the work I did to figure out where I stand vis-à-vis God, I thought, was done. I already had fought that battle. I no longer saw God as a superman. I was not waiting for God to protect us.”
Naomi had written about this earlier tragedy in her book To Begin Again, which tells of her journey back to believing in God after a long period of anger and darkness. The god Naomi serves, she told me, is not a god who intervenes in a direct way, changing people’s lives. I knew she was thinking of Noa’s struggle.
With the grim news of Noa’s disease, Naomi once again had to fight her way back to the light, to a feeling of hope. Despite being a rabbi and having been through intense suffering before, there were years when she felt lost.
Naomi was angry. When I asked about that, she spoke slowly and carefully about her reaction to the prospect of losing her daughter. The anger she felt at that time was unavoidable, she said. She believes rage in the face of such a horror is natural, even inevitable, and she offers no apology.
After the diagnosis, Naomi was determined to identify any therapy that might help Noa. Naomi discovered that taking Noa on endless rounds of doctor appointments was grueling. Handling the paperwork required by her insurance company became a full-time job. She gave up her rabbinical duties.
Becoming a caregiver rather than a rabbi upended Naomi’s sense of self. She had accomplished so much in her work and won acclaim as both a rabbi and writer. “And now look at me,” she wrote plaintively, almost as a cry. “I had no ambition. None left. I was so tired. I didn’t know where I ended and Noa began.”
Yet even in the early days of her pain, Naomi was able to take refuge and find joy in the arms of her family. The love of those we hold close offers a deep reservoir of hope. I learned that from my own family during my struggles with sickness. There is an unbreakable emotional link between parents, children, and siblings. Rabbi Levy recounted how the wisdom of her children offered its own brand of solace.
“My son, Adi, who is two years older than Noa, is the only person in the world who treated Noa like just another kid. That’s how he saw her. Noa was a little sister. Adi was a big brother.” Adi was resolute, insisting on seeing his family as normal. “He just thought, oh, all little sisters can’t walk. Just watching Noa steal a toy out of his hand, it gave me hope.”
Naomi’s husband, Rob, was also a strong source of support. At the time Naomi felt most lost, Rob somehow had found an inner compass and become more productive and active than ever. “I was drowning and Rob seemed to be rising,” she wrote. “I wanted him to describe the world as he saw it, the world of hope.”
Naomi’s prayer life was in a state of turmoil, and she began leaning hard on her husband. “Rob, who had always been a skeptical Jew, began making all sorts of bargains with God,” she told me. She would watch Rob in the synagogue. She said it calmed her to sit beside him when he was deep in thought.
“I wanted to know what he believed, what he was saying to God.” He told Naomi, “It can’t hurt to pray.” She said, “Rob was praying to Just in Case—that was the name of his God.”
Rob told Naomi he would be at work and suddenly be seized by fear. Panic over Noa’s condition gripped his chest and sent his heart racing until his body was covered in sweat. But he would willfully push the fear out of his mind. Naomi asked him how he was able to do that. As she wrote in her book: “‘Denial,’ Rob said, ‘don’t underestimate it.’” Naomi says she was terrible at denial.
Naturally, I recognized his line of thinking, since I am also a student of denial. Denial has been a powerful coping mechanism during my many skirmishes with sickness. I have lived through crises and been able to survive emotionally by denying the inevitability of possible outcomes. The line between probable and a done deal is conveniently blurred.
Denial has allowed me to expand my life. Even when the odds are stacked against me, denial allows me to keep spirits up and anxiety down. Distilled to its essence, I believe denial can be an effective strategy for fostering hope.
Gradually, Naomi began focusing on the good in her life. She traveled to Boston to visit her mother, always a source of strength for her. The night Naomi fell apart after hearing Noa’s diagnosis, her mother had found just the right words to say to her, as she recounted in Hope Will Find You: “‘How can a doctor who calls with bad results during Shabbat dinner possibly know anything?’”
After the trip to Boston, Naomi wrote, “I could see something was beginning to shift inside me. Yes, Noa was still struggling. Yes, [Noa’s ordeal] was all so unfair. Yes, there was that question mark hanging over our heads. But I was beginning to see the blessings of the moment.”
Naomi seemed to have developed a new strategy for finding her feet. It was not clear if this was her way of preparing for the worst or of making the best of the bad hand they had been dealt. I did not have the heart to ask what those blessings were.
What Naomi did say about this inner shift was that she had discovered an important lesson in her life: “You can’t live your life wishing things were different from what they are. The truth is, things were ambiguous and scary and they were also wonderful.”
“How were they wonderful?” I asked.
“I have a husband who is my soul mate,” she said to me. “We have two incredible children and an adorable dog who is always destroying things.” I get it. I travel that road. Those are reasons for gratitude, important ingredients in the life of a family.
“I was a lot of things at once. At the same time, I was just a mother playing with her kids. It was not just one tone, one color. For that I am grateful. I didn’t have the luxury of not being a mother to my children. Both of them were my salvation.”
For those of us blessed with kids, I believe doing well by them and guiding them toward a meaningful life are the noblest of all pursuits. Making money and winning promotions, collecting awards or accruing power, somehow seem empty compared to raising our children to be good people. Our other job is to protect them from harm at all costs. That was something Naomi felt powerless to do. Her fears for Noa sometimes overwhelmed her.
In her effort to control her level of fear, Naomi experimented with Buddhism. A few years after Noa’s diagnosis, Naomi began attending meditation sessions. One day, the instructor told the class she would teach them the death meditation. The central message was that death can come at any minute for anyone.
The meditation did not comfort Naomi. It terrified her. Then she thought of the teachings of a legendary Hasidic master, Rabbi Nachman of Breslov. Rabbi Nachman told his followers life is brief and perilous, and we therefore must live it without fear. Fear can paralyze a person. Naomi began to see that the awareness of death did not cast a shadow over life; instead, it was a route to living a fuller life.
“This teaching became my mantra when I was worrying over Noa and the death sentence the doctor had put on her,” Naomi wrote to me. “I could feel the power of the death meditation working through me. I was becoming more aware of how little time I had left, and I felt a new courage to try things I had never tried before.”
As time passed, something inside Naomi continued to stir. She was realizing how durable and resilient Noa herself had become. The child was blessed in many ways, calm and wise in the face of her illness. Rob called her his Zen master. As Noa struggled with a failing body, her spirits seemed to soar.
Naomi told me about a morning when Noa was having problems with balance and walking. Naomi said it would be okay for her to stay home from school, but Noa made it clear she wanted to go. If she could just pray, she said, she would be okay. Naomi watched Noa singing her morning prayers in Hebrew.
“She was just praying from joy,” Naomi told me. “I could see how prayer would give her the strength to pick her body up. Prayer would give her the strength to walk. You just forget how much something as simple as a prayer can say to you.”
This was a scene Naomi included in her book. “A serenity started to flow through her body . . . Her mood changed, her posture changed, her expression changed. When she was done singing, she walked straight up to me with strength and steadiness and said, ‘I’m ready for school now.’ And she was.” Naomi read this episode in her daughter’s life as Noa’s hope reborn, and she took comfort from it.
After the seven-year waiting period doctors required before they could make a definitive diagnosis of A-T, Naomi and Rob saw that Noa was growing stronger. If she really did have A-T, the disease would have ravaged her body by then. Noa’s neurologist had been telling the family for some time that she did not present as a typical A-T child. The doctor believed Noa had a static condition she would continue to live with, though he had no name for it.
Noa’s death sentence had quietly been lifted. Shaking off the dreaded letters, A-T, was the end of the treacherous journey. Life gradually changed. It was as if Noa had clenched her teeth, tightened her muscles, and pulled herself up and out of the deep hole. There was no high drama, no moment of claiming victory. There only was immense relief.
As Noa neared her thirteenth birthday, it came time to prepare her for her bat mitzvah. Studying for the ceremony began many months in advance, and Naomi was uncertain that Noa would be able to master the complicated Hebrew required. However, Noa learned so rapidly that Naomi was astounded. She was taken with the emotional depth of Noa’s understanding of the portion of the Old Testament she had to read.
The passage was from the Book of Isaiah. Fittingly, the words were about hope. When Naomi asked her daughter what the reading meant to her, Noa answered in words from the passage that gave Naomi’s book its title. “‘Maybe God is telling us that if you don’t like your life, if you really try to enjoy your life, you will find hope. No . . . hope will find you.’”
That is a powerful belief, and perhaps a message to all who are sick. For Naomi, it was a reminder of Psalm 23, of the line that reads, “Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the lord forever.” As Naomi wrote in her book, “Goodness and mercy are stalking you. That is what Noa was saying.”
Noa and Naomi had traded roles. Who was the parent, and who the child? Who the teacher, and who the student? That no longer was clear. “There is no question,” Naomi told me. “Noa raised me.” They had come full circle.