My Path with Arthritis

Darlene Cohen shares how she used mindful awareness of her arthritic pain to push beyond her own expectations.

Darlene Cohen
5 September 2010
Photo by Jake Thacker

I’ve had rheumatoid arthritis, a painful and crippling disease, for more than thirty years. Back in the mid-seventies, my rheumatologist recommended I try a number of risky medications to curb my RA, but told me frankly that I would not be able to take any of these drugs for more than ten years because of their impact on the liver and kidneys. I thought, well then, why not strike out on my own right now and find out how to control this disease without medicine?

Despite the bravado that decision implied, I often felt afraid and alone, reckless even—as my doctor insisted I was. He threatened many times to stop seeing me. In those days we didn’t have the plethora of helpful information that is now coming out about neurophysiological research on pain and suffering, and the radical impact that a meditation practice has on both. Validation for my path from the pain research available today would have been a joyous, consoling bosom on which to bury my anxious head.

As I began to feel my way along a dark corridor, I was guided by eight years of Zen meditation training. I had been taught to study in depth the objects of consciousness—not only thoughts and feelings, but body sensations as well. In one weeklong period of meditation, I had been able to watch a cold slowly develop in my left lung, hang out for a day or two, and then clear. This is, of course, the business of Zen meditation: awareness of the relentless, implacable present. The relevance for pain intensity is that it is only in the present that you can cultivate the mental stability that is required to practice nonpreference for the conditions of your life. I discovered that the main reason to stay present in unbearable situations is that the suffering can’t pass through you unless you’re paying attention—vibrating, pulsating with the waves of pain you feel, aware of your own breathing and grounded by it.

I’ve tried to live on the edge of my abilities, having discovered that the right amount of challenge dramatically reduces my perception of pain. Fully inhabiting my body, despite its devastation, attentive to every little sensation and its implications for my state of mind, has allowed me to explore my body’s latent possibilities.

When I lived half a block from the San Francisco Zen Center, I used to try to go to dinner there once a week. It was a challenge, with a reward at the end. Traveling that half-block was exhausting; each hip, knee, and foot resisted my weight as I shifted from side to side. I asked myself, What is it about walking that is so hard? What I called “walking” was the part of the step when my foot met the sidewalk. For the joints, that is the most stressful component of walking. They get a rest when the foot is in the air, just before it strikes the pavement. I found that by focusing on the foot that was in the air instead of the foot that was striking the pavement, my stamina increased and I was able to extend my walking territory by several blocks.

Later, I began to organize arthritis workshops to teach people to notice their tendency to clump together disparate failures into a hardened idea of limited motion, and to replace that thinking with their actual body sensations. In one workshop, when I hauled out carrots and a cutting board, everybody groaned: “I can’t cut carrots with my arthritic hands!” But when they actually held the knife, feeling its heavy wooden handle and sharp, solid blade, and touched the vulnerable flesh of the carrot on the cutting board, they were having an experience of what they could do rather than an idea of what they could do. Each wrist went up and down, up and down, and the orange wafers of carrot piled up on the board, and they realized: “I can cut carrots.” Tears actually came to people’s eyes.

I believe that the practices of meditation and mindfulness refine the consciousness in much the same way researchers now theorize that meditation fine-tunes the ability to maintain sensory equanimity. That is, if at any given moment you are aware of ten different elements—for instance, the sound of a voice, your bottom on the chair, the sound of cars passing outside, the thought of the laundry yet to be done, the hum of the air-conditioner, the sliding of your glasses down your nose, an unpleasant stab of sharp back pain, cool air going into your nostrils, warm air going out, a dog barking—then that one painful sensation out of ten is too much pain. That unbearable pain will dominate your life. But if you are aware of a hundred elements, not only the ten things you noticed before but more subtle things—like the animal presence of other people sitting quietly in the room, the shadow of the lamp against the wall, the brush of your hair against your ear, the pull of your clothes against your skin—then your pain is one of a hundred elements of your consciousness at that moment. And that is pain you can live with, because it’s merely one of the multitude of sensations in your life.

This is certainly not passively accepting pain. I avoid the word “acceptance” because it does not convey how active, creative, dynamic, and energetic the process is by which we learn to stay with and pay attention to our pain. As J. David Creswell discovered from his brain imaging study, the brain is very active when we’re paying attention: “By simply observing and noticing how you’re responding, you’re actually enlisting resources to regulate that response.”

A participant in one of my pain workshops complained all day of his knee pain as I led the group in mindfulness practices involving slow awareness movements, walking backward to break neural habits, and awareness of breathing while speaking. At the end of the day he pronounced his pain sadly undiminished. But more than a year later I received a letter from him thanking me for that day. He said he had been passively at the mercy of his pain until that day of neural exercises demonstrated to him how active he could be in his own perception of pain. He didn’t realize it until later, but the profound teaching for him had been that he could do something about it.