Life

Some years ago I read a book by a young woman named Jenny Monis who one day climbed out on a dangerous ledge to save a toddler, but ended up falling herself, becoming paraplegic. In the hospital, the doctor who broke the news to Morris called her new reality “tragic” — a statement that infuriated her. “No one can call my life a tragedy but me,” she fumed, even at that moment when her life was dividing steeply into “Before” and “After.” In the years subsequent to the accident, Morris built a new life for herself, including a notable career as a disabilities activist and writer. Morris became one of those living examples of that bedrock adage of the disabilities community: that when God closes a door, She opens a window. It may take a long time, it may feel like it’s never going to happen, but eventually God opens a goddamn window.

Most non-disabled people (and those who have not, in some way, been significantly pruned back in life) live largely unexamined lives — closing off doors and windows all over the place that they’re not even aware of. In contrast, in the chronic illness group that I belong to, for example, veteran members routinely inspire the rest of us through their example of intimacy with examined life. They specialize in acutely recognizing every nook and cranny of their free will. What they can do, can’t do, have to do, don’t have to do, truly must do for their own mental health: This hour, this day, last winter, next year, at 4 a.m., at the end of the day. Unlike the “un-pruned,” who are privileged to carry on in life fairly sloppily, these veterans have actually learned, for example, how to say “no” to things they do not want to do — which is very rare, especially for females. At any given moment, they inerrantly know the precise status of each of their “doors” and “windows.” Organizing their lives in luxurious, symbiotic relation to what really matters, they make some of the “un-pruned” of this world look almost comically blindered and driven.

A fair number of people who become disabled in adulthood face the prospect of changing vocations. In my support group, one woman who used to be a lawyer became a fabric artist. Another was a clerk, but now she works in religious education. When we talk about “careers,” the discussion is strikingly different from such conversations in the nominative, healthy world. The physically compromised often come to their vocations after years of messes and disappointments and turnings aside. Lots of closed doors and windows. Lots of brambly walks through the valley of the shadow. When these people finally hack through the mess, however, their work takes on the character of a beshert “calling” — a career sent to them, specifically, by God.

I remember one meeting of my group in which a middle-aged woman told a weepy newcomer (who was depressed because she could no longer work in her profession) about her own career trajectory. She said, as a lot of people in pain do, that the biblical Psalms were an important source of comfort to her, but that she used to sit in church and feel completely irritated by the last line of Psalm 23.

“That’s my favorite Psalm,” she told the newcomer, “but the last line [‘I shall dwell in the house of the Lord forever’] pissed me off because I could never get it. How does someone ‘dwell in the house of the Lord forever?’ What does that mean? I had long given up any hope of working in my profession again,” she said, “and I was volunteering at a wildlife sanctuary, work that eventually turned into a part-time job, even though I had no training in that area. One day I was hand-feeding a hawk, and I realized that this was a wonderful thing to do. This was okay. This was it. I was ‘dwelling in the house of the Lord forever.’ I had come home to the whole psalm. That’s where work had led me.”

The story was a profound moment for members of the group. We realized that not very many people — especially not the “un-pruned,” towards whom we often felt envy — could brag in quite this way about their domestic partnership.

Debbie Perlman, the author of a beautiful, pocket-sized new book, Flames to Heaven: New Psalms for Healing & Praise, is a twenty-year cancer survivor whose many rounds of radiation and chemotherapy left her with a chunk of lung missing and a daily dietary supplement of wheelchairs, physical therapy and ventilators. Still, Perlman says, she considers her life “a very good one.”

“My medical history leaves people aghast,” Debbie explains, “but you learn over time that there are many ways to live with illness. Pretty much, I have a really good life. I can’t go out and buy a new body, but I can do the things that are important to me. I have a loving family. You can be constantly angry or you can choose to adapt. I choose to adapt. I don’t want to say I’m in a ‘state of grace’ — that sounds kind of theologically goyishe. But I’m content. I am. I really am. Which is not to say I don’t get really tired of all the medical shticks I have to do every day.”

Perlman, who is 47, was trained to work as an occupational therapist, but her illness, instead, led her haltingly but decidedly to a sui generis career. She is Resident Psalmist at Beth Emet Synagogue in Evanston, Illinois. She is the only Resident Psalmist in the world, holding a job that’s been unfilled for three millennia.

And what does a “Resident Psalmist” do?

“I write Psalms for each new birth in the congregation, for anniversaries, for holidays, for special crises and opportunities in the life of the shul and its members,” Perlman explains. “People need to be blessed, and they need to bless. A new psalm gives people strength, helps them recognize that their lives are sacred, that we are very much connected to the prayer book and the Bible that we hold in our laps. That life has more holy moments in it than we think. When people tell me they pray with my words . . . I can’t imagine anything more amazing. It blows me away.”

In Perlman’s introduction to her book of 160 psalms, she explains where the psalms “come from.” When a woman with recurrent cancer, for example, calls Debbie and asks, crying, ‘How did you feel when [the doctors] said you might not make it?,’ Debbie has no answer. “That’s where a psalm comes from,” she explains, “from that place of giving answers where there aren’t yet answers.”

Perlman’s “answers” include “Psalm One: A Song for Comfort Before Surgery,” dedicated to “H.J.L.,” through “Psalm One Hundred Sixty: A Song of Praise.” In between there are numbered psalms with subtitles such as “One Year Later,” “Tu B’Shvat,” “For the Waiting Ones,” “After Hearing Avinu Malkeinu,” “For Changes/ Outside the Student Union,” “Hospice,” “Sabbatical, For P.S.K.,” and many others.

Debbie’s life as a Psalmist started in 1991 when her wheel chaircould not be negotiated in the snowy slush outside Yad Vashem, Jerusalem’s Holocaust memorial. While her husband and daughter visited the buildings without her, she sat and wept, feeling inexorably sorry for herself, reading a palm-sized Book of Psalms that she had purchased the day before at the Israel Museum.

“Shortly after that I wrote a psalm for a dear friend who was facing something very frightening. Then I wrote another, and another. There were an awful lot of things that needed to be said. A lovely man died, a friend had a friend facing infertility. I started to feel strongly that there was a reason that I was writing these things. There is always more to say, and it started to feel like it was my turn to say it.”

A friend of Debbie’s, only half in jest, claims that Debby is “channeling” for King David, and Perlman, in some sense, concurs. “I do feel called,” she says simply. In her introduction to Flames to Heaven, Perlman explains how, when she began on this new path of psalmody, she felt as though “the ancient rhythms that stirred King David and the other psalmists were reverberating in me. Somehow, I belonged. I was next in that line. I wasn’t trying to write; the words were just there. When the biblical Psalmist wrote the 150,” she says, “that wasn’t the end of it.” Like many people who have had transformative spiritual experiences, Debbie adds, “I like being in the in-group.”

A frequent question to Perlman is how — when her lot in life has been so fraught with struggle — she can praise God again and again. “Sometimes it’s really hard,” she answers honestly, “Like in the morning prayers when we thank God for ‘opening our arteries.’ I have a morning breathing treatment that involves my attaching this noisy machine called a nebulizer to my tracheostomy tube. The two treatments — praying shacharit and the pulmonary regimen — take the same amount of time, about 25, 30 minutes, so I do them together. How can I thank God for health while I’m doing this thing that’s grossly called ‘pulmonary toilet?’ Well, there’s such a continuum of health and non-health. Being well enough to say the blessing has to mean something. Being in a place that you’re aware enough and alert enough to davven is a privilege. I don’t believe that God makes illness. God gives us strength and opportunities to survive whatever it is we have to survive.”

“Sometimes,” Debbie says, “I read one of my psalms and I cry, which is ridiculous at this point, I’ve read it a million times. But it comes back to me how it felt to be that ill, that close to death.” The power of psalms, indeed (both the original 150 and these new 160), comes explicitly from being in extremis. If you are not in pain, you miss the power. “Psalm One,” says Debbie, “was written for a friend who was terrified of surgery. In this psalm I’m grabbing God by the elbow. ‘Listen!’ I’m saying, I’m shaking God. ‘Listen! Because I’m really scared. I’m scared, so please listen to me.'”

Debbie Perlman’s work reminds us that, on some unexamined level, we imagine the Hebrew canon as permanently closed, but it’s not. It’s a door that opens — we just forget to try the handle. We can still, in Perlman’s words, “weave lasting threads” into the fabric that is Judaism. The sacred books are still unfolding; our voices are not irrelevant or cut off. There are doors and windows all over the place. We are part of the stream, we are deeply connected.

When the Hebrew Scriptures were canonized, says Debbie firmly, “that wasn’t the end of it.” Our voices and words continue to make God’s heart beat, continue to help God breathe. Each of us has an everlasting shot of being in the in-group, of coming home to the whole psalm.