For my Pains, a World of Sighs

What does pain look like? An intriguing question to be sure, but one I hadn’t even thought to ask until recently. Pain is one of those things that, like St. Augustine’s quandary over Time, presents a similar difficulty in defining. The International Association for the Study of Pain made a stab at it: ‘Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage,’ but somehow, it seems to lack the immediacy of its subject matter –it stands, like an observer, outside the issue. Poets have done a better job, I think. Emily Dickinson, for example: After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs’; or Kahlil Gibran: ‘pain is the bitter potion by which the physician within you heals your sick self’; or even Oscar Wilde: ‘Pain, unlike Pleasure, wears no mask.

But I was reminded of another of Wilde’s observations -‘We who live in prison, and in whose lives there is no event but sorrow, have to measure time by throbs of pain, and the record of bitter moments.’- when I read a CBC article from November, 2016 entitled ‘Indigenous children, stoic about their pain, are drawn out with art’ http://www.cbc.ca/news/health/aboriginal-youth-art-pain-hurt-healing-1.3852646

‘”Aboriginal children feel and experience pain just like anyone else. It’s just that they express their pain very differently,” said John Sylliboy, community research co-ordinator with the Aboriginal Children’s Hurt and Healing Initiative.

‘”They don’t necessarily verbalize their pain, or they don’t express it outwardly through crying or through pain grimaces,” he told CBC News.’

‘These children are socialized to be stoic about their pain, to hold in their pain.’- Margot Latimer, Centre for Pediatric Pain Research, IWK Health Centre in Halifax. ‘”We noticed we weren’t seeing any First Nations youth referred to our pain clinic at the IWK hospital and wondered why that was so.”‘ It didn’t make sense, she thought — especially since research shows that chronic illness in First Nations communities is almost three times higher than in the general population. Aboriginal children are especially vulnerable, says Latimer, with higher rates of dental pain, ear infections, and juvenile rheumatoid arthritis.’

I found it very moving, and yet disturbing, that ‘[…] cultural traditions, and lingering effects from the residential school system, are some of the reasons Indigenous kids pull on their suit of armour against pain and hurt.’ But they’re children, and perhaps not yet completely shackled to all the subtleties of culture. ‘A group of Indigenous children and teenagers from four First Nations communities in the Maritimes were asked to paint their pain, to express their hurt through art. Researchers were hoping to tease out emotions from a population more inclined to show resilience to pain.’ But soon after, the children began to depict not just physical pain, but emotional pain as well. As Sylliboy points out, ‘”These kids told us about loneliness, sadness, darkness, bullying, hopelessness. It’s not the typical anxiety [or] depression. It is more complex than that.” “To these clinicians who are just asking about physical pain and not looking at emotional pain as well, it is important, because Aboriginal kids are showing us that there is no difference between emotional and physical pain”, said Sylliboy. “It’s just pain.”‘

And I learned another thing about pain –or maybe about children – ‘It’s all about creating a safe space for the children when they come to the hospital, says Latimer.  She says it’s about learning a bit about them and gaining their trust. “When they come to the health centre, or a physician or a nurse practitioner, they want to tell their story, but we do not train health professionals to assess pain that way.”’

It reminded me of a patient I first met in the Emergency Department at the hospital when I was the gynaecologist on call one night. Edie, an aboriginal woman arrived with heavy bleeding –she was  apparently in the throes of miscarrying an early pregnancy- and had brought her eight year old son to the hospital because she had no one to take care of him at home. The bleeding settled shortly after her arrival and an ultrasound in the department revealed that there was no further tissue left in the uterus, so fortunately we didn’t have to take her to the operating room. But the process of diagnosis and decision was not instantaneous. Although the little boy, Timmy, was clearly frightened, his face stayed neutral. And yet it seemed as if he was peeking through hole in a fence, and I could see his eyes carefully following my every move. One of the nurses volunteered to sit with him in the waiting room while I examined his mother, but I was the last one he stared at before leaving; I was the thing he didn’t understand.

I decided to let Edie rest on the stretcher for a while before discharge, and I thought I’d reassure Timmy before I left. He was sitting on the too-big chair as quietly and unmoving as an adult and when I approached, he stared at me like a deer hiding in a forest.

“Your mom’s going to be okay, Timmy,” I said with a big smile.

But he still seemed just as frightened, and stayed silent for a moment. “There was blood on her pants,” he mumbled, perhaps making sure I’d noticed. He allowed his eyes to venture out further into the open and he examined me again. “And she was hurting…”

What do you tell a little boy about his mother’s suffering? I knelt down on one knee in front of him so our eyes were on the same level and put a hand on his knee. I couldn’t  think of anything else to do. “She’s not hurting now, Timmy,” I said and smiled again.

He looked at my hand and then he finally smiled. “Can she go home now?” When I nodded, he reached out and carefully touched one of my fingers, and then when I didn’t pull away, he patted my hand.

I never saw little Timmy again, but a few weeks later, Edie came to my office for a follow-up visit and to thank me for seeing her in the hospital in the middle of the night. “Timmy was really impressed,” she said and smiled. She ruffled through her purse and brought out a rumpled piece of paper she’d nonetheless folded carefully. “He drew this for you, doctor,” she said proudly, and handed it to me.

When I opened it up, it was a drawing of a hand in red crayon.

“He said it was to thank you…” She seemed embarrassed, and hesitated before continuing. “I asked him why he drew it in red…” she said.

She still seemed embarrassed, so I stayed silent until she felt ready to continue.

Edie studied me for a moment with her big brown eyes, still uncertain. Then her face relaxed and a big smile appeared. “He said maybe you were one of us, now…”

I could have cried.

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Prove it!

If there’s one thing that a long life has taught me, it is that most of us seldom stray far from the path. Once launched, our trajectory is largely predictable. I suppose this is necessary for co-existence –that there are societal norms is, after all, what binds us together as a group. Knowing what people want –what they are comfortable with- makes it possible to plan ahead with a reasonable expectation of success.

And yet, what if circumstances change? Even Science admits it runs on statistical probabilities. Nothing is forever the same, despite our expectations; despite the hopes of even the most enlightened that it will not deviate too much from that to which we have become accustomed. But progress depends on change, depends at least on altered perspective. That someone can look at the same data and interpret it differently –see different patterns in it, perhaps, or even apply it to something entirely different- is what we have come to expect of our modern world.

But there is often an inter regnum, that can be confusing -a time before the paradigm shift is complete; when wisdom, -no, expectations– demand that we judge the results of whatever investigations we have done, in the light of what the past, or experience, has taught us. And as a consequence, not only do we limit our inquiries to those things that seem to prop up those views, but we discard, or criticize data that fail to validate them. Same information, different eyes. It’s often called the Confirmation Bias and I’ve written about this in one form or another before: https://musingsonwomenshealth.com/2015/05/15/the-polarization-bias/

The problem is that it seems to be a Mobius strip, and the same data are used to prove opposite contentions. There are rules that can be applied, of course –methodologies that help to sort out interpretive biases:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1126323/  but it’s all too easy to fall back on what seems natural to us: to assume that what has been found either substantiates what we believe it should, or to criticize it for its presumed deficiencies or mistakes if it does not.

There seems to be no end to the variations on that all too familiar theme. It’s certainly not unknown in Medicine, and a recent example springs to mind.

I remember Jerra -partly because of her unusual name, I suppose. When I saw it on the office day sheet, I assumed it was a typo and thought I would correct it as I introduced myself to her in the waiting room. She was the first patient booked for the day and none of the few other early-risers in the room looked anywhere near 62.

“Jerri,” I said with a smile, walking directly over to a thin, grey-haired woman sitting bolt upright in the only chair by the window. Her first reaction was to assess me from head to toe with hostile green eyes that, had they not been restrained, might have attacked me as I approached.

“It’s Jerra,” she said, ice congealing on the words as they approached my ears.

I blushed. “I’m sorry, Jerra,” I stammered, embarrassed at my rash decision to modify it.

“And it’s Mrs. Tandill…” she added haughtily, refusing –or perhaps not deigning– to shake my extended hand.

The waiting room went quiet, all eyes on us, as she followed me reluctantly across what now seemed a long hike over the floor and down the corridor to my office.

Once inside, she glanced quickly at the sculptures, and plants, and repositioned the chair further from my desk. She did not want to be here, and was letting me know in the bluntest possible way.

“You seem uncomfortable, Mrs. Tandill,” I said when she seemed settled in her seat. “I’m sorry we got off to a rather rough start…”

“So am I, doctor,” she said, still glancing around disapprovingly at the art work hanging on the walls. “I am only here at the behest of my GP, you understand.”

I smiled, hoping to diffuse the tension, but her face didn’t change. She was an attractive, if severe looking woman. Dressed in a loose black silk dress that brushed the tops of her shoes when she walked, tiny silver hoops in her ears, and a matching silver brocaded scarf that hid her neck, she carried herself like royalty. Even her short, greying hair sat regally on her head like a tight-fitting crown, not a curl out of place.

And me? I was still dressed in my OR scrubs –albeit freshly changed- after an unscheduled 8 AM Caesarian section that made me late for the office. The stark contrast with her apparel and the thwarted expectations of how a new specialist should present himself may have stoked her anxiety with the visit.

“My GP says I need a hysterectomy,” she said, suddenly glaring at me like a vexed mother with her child.

I checked the very thorough history her GP had sent with the consultation note. Jerra had presented to her with postmenopausal bleeding, years after her periods had finished. She had sent her for an ultrasound which had confirmed that there was a thickened lining in the uterine cavity, and had even done a biopsy of the tissue. The pathology report of the biopsy did not find cancer, but rather an overgrowth –hyperplasia- that can be a precursor to cancer.

Jerra was still staring at me when I looked up from the computer screen. “Dr. Hannah gave me a copy of the pathology report, doctor,” she said, sternly. “And I researched it further.”

“And what did you find, Mrs. Tandill?” I needed to know what she had read before I could put the results into some sort of context for her.

Her body seemed to relax at being given an opportunity to discuss it, but I could see her face was still wary. On guard. “First of all, that there are several types of hyperplasia” –she pronounced the word very carefully- “… and that some types are further along the spectrum towards cancer.”

I nodded slowly, not wanting to challenge her interpretations unless warranted.

“The type that seems most predictive of cancer, is the abnormal hyperplasia…”

Atypical,” I interjected, just so she’d know I was listening carefully, I suppose.

She managed a rigid, if fleeting smile. “Atypical. Thank you.” She referred to some notes she’d folded into her purse. “That word was not mentioned in the report, and I even showed it to a friend of mine -who is a nurse- and she agreed.” When I didn’t object, she lashed out at her GP. “I’ve been going to Dr. Hannah for several years now, and I usually trust her judgement, but I think she’s made a mistake here… I’ve never been on hormones,” she added as a kind of preemptive rebuttal of an accusation she expected to hear. “She says the biopsy may have missed a more… atypical area and so to be safe, I should have my uterus removed. You doctors always seem to want to remove things.” She settled back in her chair having made her case, and prepared to fend off the denial.

I took a deep breath while I decided how to approach the problem. I agreed with the concerns of her GP -at her age, there shouldn’t be much of a lining in the uterus at all, let alone one that was sufficiently thick to bleed. Something must have caused the hyperplasia. And yet, I could also understand Jerra’s anxiety. “I suppose our problem in cases like this is one of certainty, isn’t it? On the one hand, the pathology results as they stand could explain the bleeding and the ultrasound, but not with complete certainty. There could be some even more abnormal tissue hiding in a corner of the uterus that was not sampled with the endometrial biopsy…” I’m sure her GP had already gone over this with her, but it needed to be repeated. “And if that were the case, and we left the abnormal cells in place, we might all regret the decision later.”

She sat straight up in her chair shaking her head the whole time I was speaking. “Dr. Hannah kept saying the same things, doctor.” She sighed and stirred restlessly on the chair. I could see her clasping and unclasping her hands on her lap. “Let me be clear -as far as the pathology report is concerned, there is no cancer. I have…” she referred to a copy of the report in the bundle of papers again carefully folded in her purse. “… I have ‘simple hyperplasia’ –which, as I understand it, is far removed from the cancer end of the spectrum. I find it reassuring, and I fail to understand why you do not.” At this point she actually crossed her arms tightly across her chest and nailed me to my chair with an angry glare. “You’re looking at the same data as I am, and yet you are interpreting it totally differently,” she added, as if she were paraphrasing something she’d read online.

I smiled, again, but it did nothing to diffuse those eyes that searched for a permanent foothold on my face. “I suppose I’m just being careful, Mrs. Tandill. Experience teaches me that…”

Medical schools teach you, doctor!” she interrupted angrily. “Mentors that have been through the same system instruct you how to think about these things.”

I sighed, and I’m afraid I was not very successful at disguising it from her. “Have you had any more bleeding –since the biopsy, I mean?” She shook her head dismissively, and I sat back a little on my chair, all too aware I had also been revealing my discomfort at her anger. “Would you feel better if I did another biopsy…? To confirm the first one?” I added this in hopes of walking the middle road between her wishful thinking that the biopsy was indeed reassuring, and at least not denying the possibility that it may have missed something worse.

At that point she got to her feet, still scratching at my cheeks with her eyes. “No, I would not feel better! You would probably continue to recommend biopsies until you found the result you anticipate, doctor, and I will simply not play that game with you.”

And with an angry shake of her head she turned and walked out the door.

But maybe she was on the right track; maybe compromise -the middle ground- only re-routes the problem and detracts from whatever the data purport to demonstrate. No matter the number of repetitions, an interpretation of the results is still required. And if the data warrant it, a stand on one side or the other must be taken and we must live with the consequences. I think there comes a time when we must disagree with Macbeth when he says to MacDuff ‘Damned be him that first cries, “Hold, enough!”’