I have had rheumatoid arthritis, a very painful and crippling disease, for 22 years. For the first year of the disease, I was an invalid in bed. Because of my pain and extreme weakness, changing my posture was a dramatic event. I needed to heed every little sensation in my legs and feet in order to go from sitting to standing. Getting out of my bed and going to the bathroom took the same kind of focus and attention as going on safari. The people in the zen community where I lived put up a sign-up sheet for volunteers to clean my room, do my laundry, and wash my hair.

At first my conscious life was all pain. Swept up by the power of the pain, overwhelmed and consumed by it, I couldn't feel anything else. I had spent most of my life looking at my body from the outside, mostly criticizing it: Too much fat over here, not enough definition over there. Now I was forced to completely surrender to the physicality of my existence, moment after moment. I wouldn't have chosen to live life on such a basic level, but once I had to, I discovered that there actually were experiences waiting to be noticed besides the pain -- over here is bending, here is breath, here is sun warming, here is unbearable fire, here is tightness -- something different wherever I looked. I began to inhabit my body fully for the first time in my life.

Every day when I opened my eyes I hoped to find my ordeal magically over, that I was waking from a bad dream. But after I had been bedridden for some time, I realized this is the only life I have. And this is the body I have to live it with. This is it, my reality. So I started waking up ready to be whatever I am. I'd say to myself, "What part of my body works today? What can I do with the part that works?" That was thrilling to me, day-planning on such a primitive level. Because I was so ill, nothing was demanded of me by other people: no performance, no self-sufficiency, no multi-tasking. Just me living and breathing. I began to look out at the world, at everything, from the point of view of my body. And this looking out from inside my body, fully inhabiting it, living in its needs for sustenance and comfort rather than in my ego desires -- this shift was the most important in terms of my subsequent happiness.

I've often heard people who have to live with an extraordinary amount of anguish or physical pain in their life say, "I know it would be better if I could accept my situation, and I keep trying and trying, but I can't! I can't accept it; I hate it!" My own feelings about this is --

I think many of us have a skewed idea of what "accepting" a catastrophic situation actually is. If you have the idea that coping well should look something like the proverbial "grace under fire," then you think you should summon the sheer grit to plaster a big cosmic grin on your face, no matter what horrors are being visited upon you. I don't think this is helpful. Actually, just the notion of "accepting" pain sounds to me too passive to accurately describe the process of successfully dealing with chronic pain or mental anguish that lasts for a long period of time. Because It fails to convey the tremendous amount of energy and courage it takes to accept physical pain as part of your life. Truly accepting pain is not at all like passive resignation. Rather, it is active engagement with life in its most intimate sense. It is meeting, dancing with, raging at, turning toward. To accept your pain on this level you must cultivate particular skills. Then after you have developed some proficiency in these skills, dealing with pain feels much more like an embrace, or the bond that forms between sparring partners, than it feels like resignation. Resignation is too passive.

So What are the skills necessary for dealing with catastrophe, pain, anguish that you have day in and day out and probably will have for a long time? If you're in this difficult situation, your job is to (1)acknowledge that stuff and what its costing you, and (2) to enrich your life exponentially.

This is coming at chronic suffering from two angles: one is acknowledging it and understanding what it costs you in terms of your loss, and the other is opening up to a variety of experience, making your life so rich that no pain can commandeer it. Before we lose our creative energy to depression, we can begin to live with our suffering in such a way that life's frustrations and disappointments are part of the rich tapestry of living. In order to have such an attitude, we need to cultivate skills that enable us to be present for all of our life, not just the moments we prefer.

Acknowledging your suffering, just exactly what it is costing you to live with the painful situation you have, is the first step on the path of penetration into the wellspring of energy we often tie up in efforts we make to get away from our despair. I work with people who have degenerative diseases like arthritis, MS, stroke. Many of them have constant, unremitting pain. They say to me, "Why would I want to ack my suffering? To live in the present moment with all my agony? I'd rather distract myself." Why indeed?

MMaybe the bottom line is that if you develop a strategy to deal with suffering that rests on merely distracting yourself, it won't work in the long run. Maybe you can deny it or distract yourself for a short time -- hours or days. Denial is great for the short term -- it can allow you to meet a deadline despite a crisis or it can help you gradually accept an overwhelming circumstance -- but longterm it carries a pretty high price. If you deny your pain or your suffering for a long time, you begin to exist on a bleak tundra of nonfeeling. In order to stay in denial, you have to turn away from all incoming information about your situation: other people's feedback, your own feelings coming up from your gut. So your consciousness gets very narrow and your life continues on one level of your being with no variation or richness or feeling.

You have to live on a very superficial level to maintain the ability to watch TV or work endlessly as a distraction. This is not, by the way, an unreasonable decision to make: that of distracting yourself indefinitely from some unbearable realization or pain. It's understandable that we dont want to expose ourselves to terrible suffering. People say to me what a gift my arthritis, my pain, has been. It's taught me so much patience, compassion. I actually resent being told my pain has been a good thing for me. I don't consider it a gift in any way. What actually happened is that since I was in terrible pain and despair from rheumatoid arthritis, I made good use of it to develop my character. Actually given the choice, I'd rather be able-bodied and superficial.

Earlier I mentioned that one of the skills it's useful to cultivate is enriching your life exponentially. What I mean by that is If at any given moment you are aware of ten different elements -- for instance, the sound of my voice, your bottom on the chair, the sound of cars passing outside, the thought of the laundry you have to do, 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 -- that's too much pain, one out of ten; that's unbearable pain that will dominate your life. But if at this moment 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, for instance, and you have pain along with all those other things you are noticing, then your pain is one of a hundred elements of your consciousness at that moment, and that is pain you can live with. It's merely one of the multitude of sensations in your life.

As a person with a chronic illness who works with other people who have longterm physical difficulties and the despair/bitterness that accompany such difficulties, I'm very interested in what people do that has some influence on their healing process. Over the years I've noticed that among the most important healing experiences that people can have are experiences of deep pleasure. This is true of both physical and spiritual healing. When your suffering is chronic or intense, you cannot let your pleasures come randomly. You need to take the perception of pleasure very seriously and learn how to build the occurrence of such feelings into your life. If you are overwhelmed by emotional stress or physical pain, I advise you to cultivate the ability to recognize pleasure wherever the potential for its existence may lie.


-- Excerpted from a talk given by Darlene Cohen to the Multiple Sclerosis Society in March, 2000