Life Is Now is offering Pain Care for Life stories of chronic pain and people in pain

My Pain Memoir 5

Chapter Five: The Sari Quilt; Love and Challenge; A Brain Changer

In September, 2016, everything began to change in my life. Not that I was doing much. Outwardly. I’d stopped paying attention to what was going on in the world.

On September 1st, a South Korean palm oil company was accused of setting vast tracts of tropical forests aflame in Indonesia. On September 2nd, Samsung Electronics issued a recall of Galaxy Note 7 smartphones with fire-prone batteries. And on September 3rd, the President of the Phillipines, Rodrigo Duterte, declared a nationwide “state of lawlessness” following a bombing in Davao City that killed at least 14 people. I was ignorant of all of this, locked in a battle with crippling pain that demanded all my attention. I was becoming a shut-in, rattling around the house in a terrycloth bathrobe.

But inwardly I began to experience the most profound changes. My belief systems, self-image, remembrance of the past and vision of the future, all of it came up for question. The revelations astonished and bewildered me, freed me and tied me in knots, and I will always look back on that time in wonder and amazement.

 

At midday on Saturday, September 4th, 2016, I lay on the living room floor, unable to move. It was my birthday and we were seating 12 for lunch. What an assinine idea, to host my own 60th birthday bash with crippling lower back pain!

I knew I needed to challenge the pain. Under Neil Pearson’s care in 2012, I’d virtually recovered from decades-old “chronic” upper back pain, with a recovery plan that included gradual physical challenges. My upper back gave me little trouble these days, but in the fall of 2015 my lower back started going “out”, and repeat episodes had severely restricted my life. I was fighting back now, and challenge was part of the strategy.

Pearson is far from the first specialist to incorporate physical challenge into recovery programs for people in pain, of course. Rehabilitation medicine has been around forever. Only, people with so-called “chronic” pain, like me, had been told there was no help for them besides medication or temporary relief from massage, hot packs or similar aids. That paradigm, however, was beginning to change.

Lying there on the floor I cursed inwardly. I thought I’d paced myself well. Exercises in the online self-management program — body scans, breath awareness and gentle movement practises — had kept me afloat while I dusted, made beds and baked granola, preparing for an influx of house guests. Obviously I’d overdone it.

Most of the guests were sitting around the dining room table chatting softly while we waited for the last two to arrive. I was grateful no-one hovered, that they gave me space while I considered options. Take another Baclofen? I took 10 mg of Baclofen and 75 mg of Lyrica daily for pain. I’m a cheap stone and while another 5 mg of Baclofen might not touch most people, I could be high or falling asleep in my soup.

Besides, pain killers didn’t always work.

 

This party was a gamble. As a shut-in who avoided people, absorbed in the battle with pain, I sorely missed the love and laughter that flowed when family and friends were around. But Pearson and pain scientists like Lorimer Moseley stressed that socializing can release feel-good chemicals our bodies naturally produce. Love could open this “medicine cabinet”. I was about to experience that for a fact.

“The pain must be bad, eh?” my brother asked with concern as he arrived. I could only nod.

“We brought the quilt,” he said, holding up a big plastic bag.

“Oh! The quilt!”

Before I realized what I was doing I’d rolled onto one side and stood up. A moment before I’d been in too much pain and fear to move. I put it down to adrenaline. I was so excited I was shaking, and I couldn’t wait to see this extraordinary gift from a woman I didn’t know very well.

The quilt was a present from Veena, a graceful, petite East Indian-born woman who’d belonged to my mother’s Friday night dinner-and-a-movie widows club. I’d coverted a gorgeous bedspread she’d made out of old saris. In spring I emailed, asking if she’d accept a commission. I’d pay well for such practical beauty.

“Alas,” she replied, “I have long given up quilting. Body stopped cooperating with my hobbies.”

I’d heard nothing more from her. Then, on August 30th, a totally unexpected email from Veena appeared in my inbox.

“It’s ready”, the subject line stated.

I felt my mouth form an involuntary “oh!” and my hands come together automatically as if to pray. As a former dancer I observed my body from a distance, curious, not having been raised in a religious tradition that included prayer. I reached for the mouse and clicked.

I’d met Veena at the Friday night club in my mother’s final years, when I started joining the widows so I could offer Mum my arm to hold. She’d started falling down but refused to use a walker. She groused to her friends about the bossy “Mum police” (as I titled myself, to both acknowlege the dire truth and give us a laugh), but she didn’t want to end up in Emerg again with a split lip and bruised knees.

Mum’s spirited friends often talked politics at dinner after dissecting the film. While I enjoyed their conversation, I also appreciated Veena’s calm and quiet presence. It soothed me, and I admired the gentle humility that augmented her sari-clad beauty. One night we discovered a mutual interest in meditation, to the consternation of most of the others, all but one of whom were suspicious of such esoteric practises. After that we’d just catch each others’ eye sometimes and exchange a secret smile.

This was the extent of our accquaintance, to date.

Until this email at the end of August.

“Ever since your interest, two saris volunteered,” Veena wrote, “so I started on this venture. It was slow going, but it is ready now.” She’d sent two photos. The quilt was a generous 7 x 8 feet. It looked light as air. My pain flared when I threw heavy blankets off in the middle of the night, but I’d be able to toss this coverlet to one side without feeling a thing.

Veena had sewn six panels together. On one side, a generous expanse of royal blue silk surrounded an intricate central mandala in white, navy, pale blue and peach tones. On the other side the multi-coloured theme prevailed.

What serious physical challenges had a woman in her late seventies overcome to produce this exquisite creation? How many hours had she laboured over it? If she’d started in early May, it had taken nearly four months.

When I phoned to express my gratitude, ask the price, and inquire gently as to what physical restrictions she’d overcome, and how, she said she had bad arthritis in her hands, but making the bedspread had been such a joy that now she was thinking of making another one, to give to another friend. She refused to accept payment. “Think of this as a paying forward gift,” she said.

 

I’d invited Veena for the birthday weekend, but she didn’t like to travel any move, so my brother’s partner had arranged to pick up the quilt and bring it. When Bobby pulled it out of the bag we all oohed and ahhed. The silk was covered in a running-stitch motif of stars and swirls, and the thin fabric shone in the sunlight as one of my sister-in-laws fingered it with reverence.

“This is handsewn, you know.”

“It is?” A non-sewer, I gaped at her stupidly.

“Every stitch.”

I looked at it more closely. Of course it was. I’d just assumed that Veena would have used a sewing machine. I was even more stunned at her accomplishment now. Wrapping it around my body, I felt love roll all over me.

 

I’ve been blessed with a lot of love in my lifetime. I have the deep close love of my husband, the affection of family and friends, and the appreciation of students. Once, the mother of a ballet pupil brought me a silver-plated cake lifter. I’d only been teaching her daughter a few months, once a week, but she pressed it insistently into my hands. “So beautiful, the dancing!” she exclaimed in stumbling English. “So much grace.”

Sometimes love came from strangers, in the form of applause at curtain calls, or smiles like that of a woman on the street outside Vancouver General Hospital whose radiant expression warmed my heart for a whole morning as I sat by my mother’s bed in Intensive Care. Veena’s love was like that. There was nothing personal about it. It wasn’t about me. This was a selfless compassion.

I hadn’t told Veena that I was in constant pain and weathering one of the blackest periods of my life. Nor had I told her that at first I’d wanted a pink quilt. I wanted to be “in the pink”; but lately blue and white hues had begun showing up in my meditations.

It wasn’t until I sat down at the table that I realized that my pain was gone. Had I taken another pill? I couldn’t remember. Pain played havoc with my short term memory at time. Could I have opened the drawer where they were kept and swallowed one absentmindedly in my excitement? Not likely. But even if I had, Baclofen had never done this to me before, not even a double dose. I felt absolutely transported.

“You all know I have a bad habit of making maudlin speeches,” I said, rising to my feet and raising a glass of wine. “Well, it’s my birthday, and I’m going to take full advantage of that!”

We toasted each guest. I saved the last toast for my brother, saluting the heart and courage of a man who as a child had been almost phobic about blood and needles, but had chosen medicine as a profession.

As the weekend progressed, each guest found a private moment to say that there was a really special feeling in our house, and how good it felt. I knew that feeling was love: theirs, ours, and Veena’s.

 

Love and challenge saw me through the weekend. But as it drew to a close, my lower back was so tight and sore I didn’t dare walk downstairs to wave goodbye from the gate, our proud tradition. Something broke inside, and I pasted a fake smile on my face as we all hugged, but there was a taste like ashes in my mouth and in the quiet house afterwards I fell into Joe’s arms, sobbing.

I had to get out of the pain prison.

 

Notebooks from that time document what happened next. On Sunday September 11th I wrote: “Make plan for day. Respite, Calm, Challenge.” (These three pillars anchor the Life is Now program: respite or “escape” breaks during the day; exercises to calm mind, body, and breathing; and physical challenges.) I didn’t make a plan, however. My thoughts were racing now from the moment I got up, and I couldn’t focus. Besides, writing down plans required sitting. Instead, like a bird I’d just perch on a chair for brief moments during the day and note what was happening as I tuned in to my body, thoughts, and emotions.

“As I write, I feel excitement as a hum in my chest. Lips tense, R shoulder pain…recedes as pay att’n and tell (tension) to relax.” Or: “Emails — caught mind still clinging, envisioned best possible outcome, calmed down.”

This was progress. The pain would not just magically recede, it took a lot of focus, but to watch it change and grow gradually dimmer when I tuned in was huge. This progress was not a straight line, however, but an on-again, off-again thing.

One morning, as I struggled to finish a “to-do” list after breakfast, distracted by brain fog and a sharp ache in my lower back, the pain started moving around. It jumped to my right shoulder; then the left side of my back and hip began to shout mercilessly. What fresh Hell was this?

Giving up on the list I threw down the pen and stepped outside. The beauty of our 300-year-old Arbutus tree, the Douglas-Firs, cedars and maples that border our property, and the dahlias in bloom in the garden below were all wasted on me. Pacing up and down, I decided to try talking back to the pain.

In his book “Understand Pain, Live Well Again”, Pearson had borrowed a suggestion from pain researchers Butler and Moseley: asking yourself, “Is this really dangerous?” when pain flared up. This had never worked for me. I couldn’t get past the idea that any movement might be dangerous, if it hurt. How did I know what was dangerous or not?

This sort of thinking wasn’t logical. There were all kinds of things I avoided every day because I knew they caused damage. Who would put a hand on a hot burner on the stove, for example?

But some things that were supposedly dangerous, weren’t. Like when I was 11 and a ballet teacher had done a visualization exercise that made me relax so deeply my tight hip joints completely let go, and my legs to fall into what had always been an “impossible” position for me. Under normal circumstances to get my legs into this position would have required great force and I’d surely have damaged something. So, how did I know what was dangerous?

On the other hand, the way the pain was flitting about made no sense at all. That’s right, it’s nonsense! I told myself. I felt less inclined than ever to take it seriously. I was ready to experiment.

I decided to imagine that the pain was a child who kept interrupting a conversation I was having with another adult. The child wanted more attention, but I’d given her plenty of attention already.

“Not now,” I said silently, calmly but firmly.

The pain screamed.

I sighed. And then I felt a certain strength invade my core. I felt the “child” beside me, outside of me, small and insistent.

“Later,” I continued calmly, “you’ll realize you just got overexcited.”

I felt distanced from the pain then, above it. The image of one of my sisters-in-law came to mind, and the sound of her serene, intelligent, compassionate voice. I felt as if I was in her body just then; not that I could possibly know what that felt like. And yet I felt I looked like her in this moment: chest lifted, heart open, spine aligned, hips strong above grounded feet.

My sister-in-law spends a lot of time in her garden. She grows organic fruit and vegetables and mindfully prepares food for her family’s table with this luscious produce. Her earthy grounded nature is attractive and reassuring, a balm to my excitable and tempestuous temperament, and as I stood there on the deck, picturing her and talking to my pain, it instantly dropped from about a 6 –on a pain scale of 1 to 10 — to a 2. It was still there, but in comparison to a second ago, a mere dull blip on the radar.

I couldn’t believe what had just happened. I had greatly reduced my pain.

With a THOUGHT.

A shiver of excitement rippled my spine. I had changed the neural pathways in my brain, and changed the pain.

I knew in that moment that the theories were true. I could teach my brain to unlearn the pain. All I had to do was find the right words.

 

I was so excited, I wanted to tell everyone I knew. As Joe came up the stairs to make himself a cappucino in the kitchen I blurted it out to him. Then I phoned a few family members, getting all worked up, my body tensing with excitement. I couldn’t afford to get worked up. It hurt. I needed to calm down, and I used relaxation exercises and a hot bath to help.

The next day — September 12th — I wrote: “change the story. The story is wrong. Faulty wiring — firemen show up.”

In his videos about the science of pain, Pearson explains that pain is a protective mechanism, and when it persists, you have to change the story you’re telling yourself. I started imagining firemen who show up to protect me. Only there was no fire to put out, and their intense activity — bright lights blazing, sirens blaring, motors roaring, their shouts as they dragged heavy hoses around — only made matters worse. I needed to send the firemen home.

I grabbed a notebook and began to draw, something I hadn’t done for decades. I needed to see these firemen. Only I found myself drawing Viking warriors instead. They were standing on our driveway in their helmets and armour, looking up at me on the porch.

“It’s okay, you can go home now, I’m fine!” I said in a comic strip balloon. “No problem!”

One was disappointed.

“I was hoping to rescue you,” he said glumly. “On the other hand I really am quite tired from working so hard.” He decided he’d enjoy a rest. Another wanted to have a beer before he crashed. They all started yawning.

From that day on I imagined firemen or Vikings when the pain came on, and told them to relax and stand down. It didn’t always work, but it tended to calm down the pain considerably, and sometimes it would stop it altogether.

All this was further evidence that I could “unlearn” my pain.

 

When I’d first mentioned Neil Pearson’s methods to my brother, four years ago, he’d seemed skeptical. Now though when I told him how I’d “changed my brain”, he said enthusiastically:

“Good for you!”

“I know you may not believe in Pearson’s methods, but…”

“No!” he said firmly. “I do!”

If my brother’s mind was changing, what about the thinking of other medical professionals? Was our medical system beginning to catch up with this new approach to pain as a mindbody disorder? A Google search brought me to a TED X talk by University of British Columbia brain researcher Lara Boyd.

“Everything we do changes our brains,” she said, emphasizing that the key was to practise.

I vowed to keep practising. That morning was challenging. The pain would grip one glute, then the other, but I threw one technique in the online program after another at it: breath awareness, a breathing exercise using a Sanskrit word, gentle yoga, and watching educational videos about the science of pain. By noon I had no pain, and this state of bliss lingered through lunch.

The pain free periods were getting longer.

 

I continued to work the Life is Now program, and at the same time, to read Steve Ozanich’s book, “The Great Pain Deception”. Pearson’s program gave me a way to structure my recovery. Ozanich’s story strengthened my courage and my resolve.

 

to be continued…