When I was 19, I woke up one morning and found that I couldn’t get out of bed. My hips were stiff, my back was sore, and my arms just weren’t strong enough to sit me upright. Something was wrong. I called out to my housemate, who helped lift me out of bed. That was the first time I needed help standing up. There would be many more.
It had been building for a while. I’d sat in university lectures and on buses feeling tremendous pain around my neck, shoulders, and lower back. I stared blankly at the doctor when she told me I had ankylosing spondylitis, an autoimmune disease that attacks the spine. In a normal spine, the bones in the back are buffered by cartilage. In my spine, the bones were fusing together.
Back then, aIl I knew about the disease was that there was no cure. I didn’t know how much my back would come to hurt, or much I’d struggle with fatigue, or how little I might be able to move.
All I could do was focus on making changes to get better. I took up exercise, having studiously avoided it since school. I cut back on smoking and drinking. I changed my lifestyle and resolved to look after my body better. But the biggest change of all wasn’t in my body; it was the unexpected transformation of my religious beliefs. Getting sick made me doubt the Judaism that had been such an integral part of my life.
I grew up in a Liberal Jewish community, the U.K. sister of the American Reform movement. My Marxist parents had initially resisted raising me religious, but even as a child I’d been so drawn to Judaism that I insisted on dragging them to synagogue. Our community, based in a large commercial town surrounded by countryside just outside London, would meet weekly in a small shared chapel. We’d head out to a local farm for the pilgrim festivals. We’d plant trees at Tu B’Shevat and harvest fruit at Shavuot. We even camped out in the chilly English autumn for Sukkot. I adored getting to go out to the countryside. I loved cheder and getting to spend my weekends with other Jewish children. But more than anything else, I loved prayer.
There was something in Jewish prayer that filled me with joy. From the collective singing of “Mah Tovu” at the start of the service to the barn-storming shouting of “Adon Olam” at its end, I felt like I was part of an amazing community. Our liturgy, especially, filled me with hope. It spoke with such certainty about the sureness of progress. People whose lives were difficult now would get better. Society, though broken, would be perfected. The whole world was on one unfettered journey toward a messianic age of truth and righteousness.
I can still recite by rote the words from the siddur: “You support the fallen and heal the sick; you free the captive and keep faith with those who sleep in the dust.” This, I believed, was a G-d who actively intervened in everybody’s lives to make them better. I learned to say in English: “We hope soon to behold the glory of your might when false gods will vanish from our hearts and idolatry cease forever.” This, I thought, was an unabashedly optimistic religion.
I found that optimism everywhere. At home, my parents were convinced that the workers’ revolution was just around the corner and a new age of peace and equality would soon come to replace our capitalist system. At school, I learned that I could achieve anything if I worked hard enough. All of us could become astronauts or prime ministers, if only we put our minds to it. No matter who was right—the religious, the Communists, or the aspirational—the future was going to be great.
As I child, I held tightly to that view of the world.
There was never exactly a moment I stopped believing. I drifted away. I went to synagogue for the major holidays. Then I went back to living my life. But as that life became more complicated, so did my relationship to Judaism.
Dealing with chronic pain meant I had to question everything I thought I knew about the world. People’s lives were supposed to be stories of progress. We’d start out from a difficult place, we’d struggle, but as we went on, things would get better. G-d would support us. How could I believe that now, knowing that my health would gradually deteriorate?
Every year, autumn brought cold rain and my condition would flare up anew. Each time, it got worse. I found myself in more pain, struggling to cope with daily tasks. I could no longer sit cross-legged, and it hurt to sneeze. Each time my disease got worse, my religious questions came back to the fore. I needed to understand how I could get so sick and have my life derailed so badly.
I went to work in Turkey, fearing that if I didn’t get out and see the world before my spine fused any more, I might lose the chance. I persisted with my questions about faith. But I resolved to start going to synagogue regularly again—to look for the answers I couldn’t find in my daily life. I sat each week in an old Sephardi synagogue on the Bosphorous, where old men struggled to make a minyan, wondering if there was anything G-d could do. I started bargaining, praying to have my disease taken away. I quit smoking. I quit drinking. I took my painkillers. I did yoga every day.
I ached in my muscles, and I ached in my soul, heartbroken by every answer I could think of. Had I done something wrong to be exempted from the linear, progressing life everyone else was meant to get? Was G-d not interested in people’s lives enough to intervene and relieve suffering? Was G-d not even there at all? The thought crushed me, but I didn’t want to let go of the optimistic theology that had filled me with such wonder as a child.
At 25, I lost the ability to walk properly. I could only push my limbs outward in robotic movements. I didn’t have enough time to cross roads in the time it took for the lights to turn from red to green and back again. I couldn’t sleep because with the slightest turn I woke myself up with the sound of my own screams. Every muscle in my body was tensed up. I lost more than 25 pounds.
Dealing with pain, it was hard to think at all, let alone to think positively. I absorbed all the books on Jewish thought I could find, searching for answers. If I wanted to hold on to the view of G-d I’d had as a child, I needed to come up with alternative solutions. Perhaps I was being tested—eventually I’d do enough mitzvot and I’d be relieved of the pain. Perhaps I was being punished. Maybe this was G-d’s plan after all.
Last year, I came back to the U.K. Doctors put me on regular doses of ibuprofen, then naproxen, then coxibs, none of which did anything. Unable to focus because of pain, I lost my job. I felt like I was no longer useful. But just as I was giving up hope, I followed a friend along to a weekend of non-denominational Jewish study in London.
This was Jewish study like I’d never encountered it before. We pored over Aramaic texts, guided by incredible scholars, to consider life’s big questions. We sat in small groups studying passages from Torah, Talmud, and modern Jewish theology. We were led by rabbis and academics, but mostly we were led by our own desire to see the world differently. One of the major themes we discussed was why people suffer.
There were people looking for answers in just the way I was. An emergency nurse who’d seen too many children come in mangled from car accidents. A community worker who felt like she was losing her faith. A student, grieving for his recently lost parent. All of us encountered Jewish texts afresh.
We read Ecclesiastes, that beautiful poem, bordering on atheistic, which says: “The righteous get what the wicked deserve, and the wicked get what the righteous deserve. This is all meaningless.” We read Job, afflicted with diseases and losing everything, crying out to heaven: “Withdraw your hand far from me, and stop frightening me with your terrors,” to which G-d replies: “Will the one who contends with the almighty correct me?” We read, too, from the Talmud, where Rav Johanan goes to see Rav Hiya bar Abba, lying in bed and unable to move. Rav Johanan asks him, “Are your sufferings dear to you?” and Rav Hiya replies, “Neither them nor their reward.” Only then is he able to stand up.
I realized that all the problems I’d had—both physical pain and existential doubt—weren’t just mine. They’d all been experienced before. Rabbis, prophets, and Hebrew poets had all struggled with the same sicknesses and questions I had. They couldn’t answer by promising some great progression of life. Nobody would tell King Solomon, the author of Ecclesiastes, that everything would be fine. Nobody would tell Job that his suffering had meaning. The Babylonian rabbis wouldn’t let their friends make martyrs of themselves for hurting, either. Instead, they just expressed their worries and let the questions stand. Suddenly, I felt much less alone.
People throughout history managed to go on being Jewish in the face of far worse suffering than mine. They’d stuck together, prayed together, and asked life’s most difficult questions together. They hadn’t answered with hope. They’d answered by being there for each other. And now, through their words, they were here for me, too. Through their words, Jews from generations past reached out through time, took my hand and said: “I’m hurting, too.” Through prayer, I try to answer them: “I’m with you.”
Over the last year, I’ve taken to prayer with new vigor and meaning. Jewish prayer doesn’t have to be about senseless faith in a better future. It can be a way of feeling radical empathy and solidarity with everyone else who is struggling. It can give me the strength to get through a day. It can give me a sense of gratitude when I don’t feel any. It can help me feel despair when I just need space to grieve.
I’m not waiting for a better future anymore. I’m praying for today. Whether we’re in synagogue together or I’m mumbling away in Hebrew at home, I’m part of an international community of people who are giving one another strength.
I think about everybody else hurting, grieving, questioning and learning. There are millions of us. People having their welfare cut and people who never had it. People struggling to pay bills and people struggling to get up in the morning. Through prayer, I can offer up some empathy and solidarity. I can feel like I’m having it returned.
Right now, I’m in a much better place, both physically and mentally. I know that wouldn’t have been possible without prayer. A sense of faith, of community, of support, can make more difference than people realize. It’s not that an invisible hand has reached down from the sky to take away my afflictions. G-d doesn’t work like that and never has. The miracle of prayer isn’t that it takes sickness away—it’s that it makes it bearable.
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Lev Taylor is currently doing an MA in Jewish Studies at King’s College London and is part of the U.K.-based anarchist-Jewish collective Jewdas.