Rabbi Naomi Levy rarely answers the phone on Shabbat. But nine years ago, she made an exception, and on the other end of the line was a doctor with grim news: Levy’s 6-year-old daughter, Noa, had a fatal degenerative disorder called ataxia-telangiectasia (A-T). How Levy faced life in the wake of the devastating diagnosis is the subject of her third book, “Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living” (Doubleday, $23). Levy, who lives in Venice, Calif., with her husband, Jewish Journal editor Rob Eshman, and their two children, Adin and Noa, is the founder and spiritual leader of Nashuva, a Jewish prayer community and outreach organization in Los Angeles. She was also among the first group of women to study at the Jewish Theological Seminary in 1984. Levy spoke recently with the Forward about the spiritual toll of the diagnosis, the way she learned to flourish amid uncertainty and her daughter’s health today.
There’s a very powerful scene in the book in which you first learn of Noa’s condition. How did you respond in the immediate aftermath of that news and in the years that followed?
At first, I literally buckled to the floor. My life as I knew it stopped. I stopped teaching, I stopped speaking, I stopped traveling. I spent my time taking my daughter to different doctors, to physical therapy, occupational therapy, speech therapy, swimming therapy, vision therapy. My life became, literally, sitting in waiting rooms. And metaphorically, my life was a waiting room.
After the initial diagnosis, you were told it would be seven years before doctors knew for sure whether or not your daughter had A-T. You write that the protracted waiting game threw you into a “spiritual coma.” What was that like, and how did you emerge from it?
I didn’t know what to pray or how to approach God on this. There was this irony in that I was finishing a book of prayers called “Talking to God,” and suddenly I felt mute. There were times when I felt like God and I were tugging on the same child, and I was saying, “You can’t have her, she’s mine”— as if God was a body snatcher. But then I would watch the same child pray and I could see how prayer strengthened her. And over time, I had these little shifts in my relationship with God. I started to see that maybe God hadn’t abandoned me or Noa or anybody. I started to understand more deeply that God wasn’t anyone’s personal bodyguard; that’s not God’s job description.
Waiting can be so deeply uncomfortable, especially, I imagine, for a parent waiting on news about her child. Do you have any advice for those who are living in a state of not knowing?
As a rabbi, I’ve spent so many years counseling people who were waiting for their lives to begin. They say, “My life will begin when I fall in love” or “when I get married” or “when I have a baby” or “when I get this job” or “when I get out of debt.” I’ve always counseled people to see that this day is my life, perfect or not. No matter what we’re waiting for, the preciousness of today can get really lost.
More often than not, people talk about hope as something that you have to seek out, rather than something that comes after you. So why the title “Hope Will Find You”?
My daughter has physical disabilities and also learning disabilities. When it came time to begin studying with her for her bat mitzvah. I was worried that I didn’t know how to teach her. I started teaching her and we found together all sorts of creative ways to make the parsha come alive. When I asked her, “What does your haftarah mean to you?” she started saying all these beautiful things. She said, “I think what it’s saying is that if you don’t like your life, if you try really hard you can find hope.” Then there was a pause, and she looked at me and she said, “No, hope will find you.”
How did you understand that message?
I literally gasped when she said it. I realized how long I’d been trying to find hope, and for how many years I had been trying to hold onto hope. What Noa was telling me was that I didn’t have to strive so hard or hold on so tightly; it was about letting hope in. That’s what we say in the 23rd psalm, that most famous psalm, “Goodness and mercy will chase after me, it will pursue me.” We just have to let it catch us.
After years of spending so much of your time in waiting rooms, you ultimately returned to the pulpit. Tell me about the genesis of Nashuva.
I was having breakfast with two very dear friends, and they said, “It’s time for you to start leading people in prayer again.” I thought that this was insane; I wasn’t in a state of mind or a time in my life where this would be possible. But instead of smiling and putting that thought away, I decided to call one place — a church I used to drive by, when I would visit patients at UCLA. I said, “Is the reverend there?” and the voice on the other end of the line said, “This is she.” I said, “I’m a rabbi, and I was wondering if you’d be open to a bunch of Jews coming to pray in your church…” She said, “Nothing would make me happier than to have Shabbat services at the church.” [When we met], I looked at her, and it was like looking at myself. She said, “I’ve known you my whole life,” and I said, “I know.” From that moment on, every aspect of Nashuva felt like some form of “hope will find you.”
Noa is now 14 and, while she doesn’t have the fatal disease with which she was originally diagnosed, her condition still remains very much a mystery. How is she doing?
She’s doing beautifully. She does have disabilities with coordination and balance, but her determination is just so strong. It’s not a fierce determination; it’s a joyful determination that gives her a certain kind of buoyancy. She’s learning all the time ways to work with her disabilities and her abilities. She’s actually got quite a powerful voice for writing.
Gabrielle Birkner is the Forward’s web editor.