It’s ten years now since the onset of the chronic pain condition that lives with me as my constant companion. I am impersonal about it, “the” condition -- careful not to say it’s “mine” or “my” pain condition, because, believe me, this pain doesn’t belong to me! If it got lost somewhere on its own path through life, I don’t consider that my body is yippee yahoo where it got found. It may be here for a temporary stay, although after ten years it is clear that it’s far outstayed its welcome. I have come to believe that the pain is nothing personal – it isn’t me, it isn’t mine. It is just the companion who is always here, hidden skilfully in some moments, but turning up like a dirty penny every time it wants me to take notice, and, insecure as it is, it clings, abides with me, fearful of moving on to continue its journey alone. No one wished this pain on me, as far as I know, and, if I were a believer, I am sure no God would have had a hand in placing a plague of pain on me. One thing for sure is that I didn’t bring it on myself!
When it first began, my body responded right away by limping; it was too painful to put my full weight on my right side, the pain emanating from the hip and travelling at will down my leg. When it didn’t subside over time, I went to many types of therapies, looking for “the cure.” My first efforts were with massage, chiropractic and physio, as well as a series of consultations with one type of specialist, then another. I was referred to two different orthopaedic surgeons, both of whom told me that I wasn’t a candidate for surgery. One said I just needed to tighten up my core muscles and the pain would disappear! If only... The other said that nothing would help except narcotic drugs. I suppose I now have encyclopaedic knowledge concerning the types of help available out there! I’ve been for osteopathic therapy, acupuncture, intra-muscular stimulation, TENS machine work, epidural injections, and on it goes.
I had numerous tests conducted – CT scans, MRI’s, neuro-muscular testing, etc. They showed, and I already knew, that I had osteoarthritis from my neck down to my coccyx, some scoliosis, some spinal stenosis, and osteoporosis, all affecting my spine. None of these on its own seemed likely to have caused the degree of pain that I experience, but perhaps the combinations and the exact locations have made “the problem” difficult to diagnose. I have had a bone scan done on my hip twice, and both times my hip looked absolutely healthy. The hip is clearly not the source of the problem but just a random recipient, referred through the nervous system, undoubtedly from the spine.
The pain has continued relentlessly over the years, never mindful of my wishes and desires, and regardless of all therapeutic interventions. Before long, walking was not the only casualty. One by one, activities in which I had formerly been an enthusiastic participant were dropped. I couldn’t handle the tai chi chuan, Yang style, 108 form; dancing, International, Israeli folk dances, ballroom, jive; strolls to the beach, aerobic exercise class, leading groups and teaching when standing was required. For me, it was a lengthy list of losses, much to feel sad about, endless thoughts of “I can’t,” “I used to,” and inevitably, “poor me.”
Not only did I stop a number of activities of my own accord, some friends stopped calling me. One, who I used to walk on the beach with, just stopped phoning, coming to the conclusion that because I couldn’t walk as fast as she could, there was no point in making plans with me. This hurt. I had thought that our friendship was bigger than that. I knew inside that I was still the same fun-loving person, the same person who loved a deep and heart-felt conversation, that there was more to me and to friendship than walking, but I was dismissed. Most others were nicer to me, thought of alternatives if walking was too difficult, and asked me what other ideas I might have as alternative plans.
I know that I wallowed in the pain for a while, wallowed in the state of feeling sorry for myself, and then would promptly go to the opposite pole and deny everything about it; I was fine, fine, fine. I’d suffer in silence, not wanting people to feel sorry for me; not wanting too much time spent talking about it or focusing too much attention on me.
I’m not just a bad hip, but what am I? Who am I now? I knew that I had to acknowledge the pain but at the same time I needed to explore alternatives. I drove up to Queen Elizabeth Park one morning, managed to get from the car to a bench near the fountain, and sat down to write. I found myself drawing up a list of losses. Let’s just get it all in black and white, so I know what I’m dealing with. That was my modus operandi. This was my statute of limitations:
Unable to work, Loss of income, Limited lifting, Difficulty standing, Often stuck in the house, Frustration, Depression, Pain on bending over sink to brush teeth or rinse a plate or fill coffee pot; Pain picking up things from floor; Tying shoes, painful; Cutting toenails, I’m in pain; Putting on socks, difficult; Getting in and out of the tub, don’t ask; Getting in and out of the car, why mention it; Anticipating the threat of pain before undertaking any activity, I cringe, I tighten, I stress; Moving too slowly; Vulnerability; Can’t make definite plans re future; Can’t join many social activities – going for a walk, dancing, exercise classes; Big risk of overdoing
No sooner had I written down this list of limitations than I began to envision what I could do about it, what was reasonable to expect of myself. OK, I can’t dance, but what can I do? I can’t dance for more than ten minutes, but can I for a fewer number of minutes? Are there more sedentary activities that I can enjoy? When my mind opened to possibilities, another list began to develop. Writing, at last time to do some writing! And knitting! I haven’t knit since Grade Six, but think of what I could make for my grandkids, my friends, myself! Maybe I need a refresher course in knitting, a little expertise in a particular area – I’ll call the wool shop and see when they have lessons coming up! Is there a type of exercise that I can do? Something that still makes me feel that I am actually burning calories or working up a small sweat? I join classes in seated aerobics, standing during the class whenever I can, I take Pilates for a while, yoga for a time, and rely a lot on the stationary bike, which somehow allows me to spin my wheels, even if only for short periods at a time. Let’s see. I can:
Stretch; Strengthen; Move slowly; Take small steps; Do short sessions of any exercise – even 5 minutes; Continue building body awareness through meditation scans (Jon Kabat-Zinn); Create a regular healing time in my life, healing activities: Meditation, Body scan, Mindful yoga, Exercise bike, Breath work – penetrate the pain with breath; Read; Move but make frequent stops, rest; Go short distances; Plan one-stop shopping; Sit to cut up vegetables; Use crayons to do therapeutic art – colour the pain; Do music therapy; Bring mindfulness to daily activities; Do chores mindfully; eat mindfully; Do chores in stages I can handle – vacuum one room a day; Pace myself; Use the portable TENS machine; Go for massage just to pamper self; Keep body as limber as possible, relax; Take bubble baths, with candles ... and with wine!
Fortunately, I am a “yes-butter” in a positive way. Tell me something negative, and I’ll immediately say, “Yes, but couldn’t you do this instead?” This is second nature to me, part of my argumentative temperament . And perhaps that way of being is what led to a turning point in my thinking; it certainly contributed to it. But the main turning point itself, the moment that mattered most, had to do with a new understanding -- a whole shift in my thinking, my attitude. The moment that mattered was the one when I realized that how I see the pain is the determining factor in how I am able to deal with it.
I have been a long-time meditator, for several years now, and I do a lot of reading about the teachings of the Buddha, and how they can be realized in our everyday lives – general mindfulness practice, being awake in the present moment, being aware of the now rather than dwelling on old worries or new ones anticipated. But there are many other teachings that turned me around when it came to pain management.
Pema Chodron, Zen teacher, writes of recognizing our suffering. She tells us to stop pushing it away; stop struggling with it – this reactivity will just make it worse. Look at it directly and examine exactly what is threatening us. When we become ill or get old or don’t get what we want – just recognize our suffering as suffering. Be curious about it. Notice it and its manifestations. Be mindful of our own reactions. Pain, of whatever sort, is a part of life, the shadow side of pleasure. We don’t want it, but it is bound to arise anyway. Pain and pleasure go together. They are ordinary. Pain is not punishment! And pleasure is not reward! Both are just ordinary. We need to stop resisting those parts of ourselves that we find unacceptable, for whatever reason. Breathe them in, breathe into them. Get to know them intimately and see them as your companion. Look deeply and honestly, and give your deepest compassion to the pain itself and to yourself for the pain you are bearing.
My view changes gradually. I see myself in a kinder light. I have compassion for the pain and for myself having to cope with it. This attitude doesn’t take the pain away, but it helps me, somehow. It’s more useful to me than self-pity. I go to a workshop on meditation and writing, given by Ruth Ozeki, author and now Soto Zen Buddhist priest. She asks us to walk outside, and to notice -- the sounds, the sights, the details of everyday nature. We are to pay attention. It’s a beautiful spot in Stanley Park. All of us are overcome with the setting, feeling such gratitude for each tiny leaf, the vein-work so delicate, for the sturdy bark on seasoned Douglas firs, for the pathways of crawling, climbing insects, for the deposits and growth of many mosses.
I can’t walk too far and stay in the garden area, using my cane, as always, to help me balance and to share the weight of my body’s exertion. Suddenly, my eyes fill with tears. My heart opens. I realize for the first time the enormous work being done by my left hand, holding the cane, but gripping for life, accepting the energy it must outlay with every step. It has never spoken up to complain. It has suffered in silence. And I am overwhelmed with the knowledge of what it is willing to experience to help out the right side, to compensate, to be a friend, to give its every ounce of strength for another. I feel immense gratitude and appreciation, immense compassion for the task it has taken on without question.
I attend a retreat given by Christina Feldman, Vipassana teacher. She knows nothing of my particular pain, but she knows the human condition, the human pain which all of us experiences. With eyes closed, she asks us to focus on the body as a whole, to scan it, observantly, noticing sensations – perhaps tingling, warmth, or pressure – and to stop if there is an area that keeps calling us, drawing our attention. My focus immediately rushes to my hip, my poor hip. She asks us to breathe into that area, to bring the breath and the refreshment of oxygen into that part. She asks us to notice whether the sensation is constant or if it changes. Explore it, examine it, and get to know it. When I get to know it deeply, I don’t have to keep focusing there – it has run its course of attracting me. I know it’s there, but I can look beyond. Christina says to notice how much of our body is taken up by this part, and I see that the pain takes up maybe 10% of my body, maybe not even that much. She asks if we’d paid equal attention to the other parts of the body, the other 90%. Again, as I had felt in the meditation and writing workshop, the rest of my body had been so ignored, so left out, had sat so unappreciated while I chose to focus on the pain. Christina called for a spacious view – to put a lot of space around the painful area, and to pay attention to that space, that huge and vast space that we’ve back-burnered for so long. “Expand the attentiveness beyond the difficult situation, to the entirety of the space, the whole.” This was another moment, perhaps the moment that caused the greatest change for me in my attitude. The spaciousness arose, full, rich, filled with wonders, filled with abilities, filled with ethical characteristics of unconditional support and compassion for the painful area. I saw that cringing, holding, wishing the pain to go away were all things that contracted me, made me suffer more. I recognize the poison in that, how it can become obsessive and patterned, how I could have been identified with the pain and seen myself as the woman in pain, the woman with the cane. Spaciousness is inclusive; it’s all of it, the big picture. As Christina Feldman put it, when we notice the bird flying in the sky, we see the sky, too, not just the bird.
Christina then asked a question, the answer also pivotal in my journey. “What do you allow to be the gatekeeper of your happiness?” Is being pain-free the only condition of my happiness? No! I will not allow myself to depend on being pain-free to be a happy person. I wrote in my notebook: “My happiness in life does not depend upon being pain free.” What a healing and freeing set of words!
To look at healing, as Jon Kabat-Zinn says, “You are already whole... let’s shift away from fragmentation and isolation towards wholeness and connectedness.” I now can relate differently to this chronic pain. I can come to terms with it, with things as they are, and stop wishing them away. It seems to me that if I can accept life as it is, it will bring me inner peace, something that can sit at the heart of my health and well-being.
A few years back I had tried some epidural injections, to no avail, but in July of 2010, I was given the first of several nerve blocks – steroidal injections to the lower spine. With the injection at L5 nerve root, I at first felt no difference whatever. But when I had to go on Tylenol 3 for some dental work a few days later, I suddenly realized that the pain in my hip was gone! It was a serendipitous shock! When I spoke to the doctor, he told me to continue to take the T3’s for as long as they helped, and I did that. The nerve block, in combination with the codeine in the T3, was a magic formula that lasted for more than two months. I was then told that I could have these injections every three months. I waited and waited to be called for the next one, but it didn’t happen. The pain specialist somehow didn’t send in the referral and then was terribly ill, himself, so that nothing was done for several months. Finally, in total agony, I got in again in February of 2011. It was another beauty. I did very well till late May or early June. When the injection was to be repeated in June, the exact location of the inserted needle felt different to me -- it is a very exacting task -- and sure enough, I had absolutely no response to that nerve block at all. By that time I had changed the Tylenol 3’s for Emtec, a similar medication but without caffeine added to it. The Emtec, no matter how much I took, did not help. My son was to be married on August 20th, and I called in desperation to tell them that the June injection hadn’t worked and that I really didn’t want to be writhing in pain at my son’s wedding! After much manoeuvring and behind-the-scenes sleight of hand, my pain specialist was able to arrange another injection. With five days remaining before the wedding, I went in to the hospital. The order had been placed for the S1 nerve, which I didn’t understand, as previously, it was the L5 that had worked so well for me. I begged the radiologist to listen to me, and he therefore put most of the shot at S1, but reserved a small bit for L5. I immediately felt that he’d hit the right place this time, but unfortunately, I was to have very little relief once I started the Emtec again.
As I look back at this lengthy and difficult journey, I see none of it as tragic.. I have learned so much that I am well able to accept how things are right now. I am booked for another nerve block at L5, am waiting for a specialist at the spine clinic for the possibility of a foraminotomy, a surgical procedure that could give the L5 nerve root more room, and in the meantime I am taking a larger dose of Emtec in order to at least take the edge off the pain. I realize, looking back, that I have lived a life for these past ten years, a full life. I still have wonderful friends, a family that brings me much joy, and so many activities that provide me with meaning and purpose. I knit, I write, I do volunteer work, I still take part in two formal exercise classes a week, go on my exercise bike in between times, meditate daily, belong to two meditation groups, go on retreats when I am able to do so, read voraciously, and keep up with books, articles and talks on the current state of education, the Jewish-Palestinian situation, elders and the environment, and mindfulness.
You see, I have come to see the pain as a gift. It has taught me to be kinder to myself, to honour my body and all the work it does for me, that there’s more to me and to life than its effects, and that I can live a happy, productive and full life without depending on its exit.