December, 2011
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.
