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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Leave Me Alone

I have lived in a hospital as an on-call obstetrician on more days –and nights- than I can count over the years; hospitals were the grudging homes for me ever since medical school and the subsequent ages of specialty training that fell upon me like unbidden hats. And despite the palimpsest of colours I was forced to wear, hospitals have been the lodestars in my ever-changing world.

They weren’t all pleasant, although each beckoned with what seemed, from a distance at least, to be tempting endowments of knowledge and experience. Gifts are gifts, no matter the source, and I accepted each with gratitude, if not a little experientially-acquired caution. But although one must often stride boldly into the unknown to arrive at a destination, adaptation follows close behind. And then comes a fondness for what seemed, initially, to be strange. Chaotic. Frightening. And yet the utility of the situation breeds an eventual reconciliation. The disturbing, becomes assimilated into the quest for advantage. The hope for reward.

At least, that’s how an employee –a doctor or a nurse, especially- might rationalize the initial anxiety in a hospital: ‘short term pain for long term gain’, as the trite political aphorism would have it. But one can only wonder how the experience might strike a person who, travelling along the avenue of illness or accident, is forced to endure the unexpected and probably unwelcome distress.

There was an interesting article in an old BBC News article that questioned whether going into hospital might actually make you sick: http://www.bbc.com/news/magazine-35131678

A Dr. Harlan Krumholz at the Yale School of Medicine became interested in in the statistic that ‘about a fifth of patients who leave US hospitals are back within a month.’ At first glance, this may seem obvious and uninteresting –the original cause for their admission may not have been completely dealt with, or perhaps there were complications from it that only surfaced after their discharge. Indeed, in many countries ‘re-admission rates are taken as a measure of the quality of care a hospital provides.’ But Krumholz realized that ‘only about a third of patient readmissions were related to the original cause of hospitalization. Patients’ reasons for returning to hospital were diverse and linked to their immune systems, balance, cognitive functioning, strength, metabolism and respiratory systems.’ He felt this was an entity unto itself and called it PHS (Post Hospital Syndrome): http://www.nejm.org/doi/full/10.1056/NEJMp1212324

Basically, it assumes that hospitals unwittingly engender stress in patients by imposing disruptive and often intrusive regimes –some of which could safely be postponed or modified at night, for example. Patients already feel vulnerable and powerless in the face of illness or accident, and few would dare complain for fear of alienating those who are the providers of their badly-needed succour.

*

Vesna was not one of those. From the moment I saw her in the Emergency department with a severe and unresponsive pelvic infection, it was obvious she did not intend to relinquish control. Indeed, it was something of a diplomatic coup that one of the ER docs was able to convince her to allow an intravenous catheter to be inserted into her arm. She had to point out one of the only remaining veins –she knew her arm well- and direct his hands when he tried, unsuccessfully, to enter the tiny vessel that was hidden under a tattoo on the skin above her elbow.

It was around 2 A.M. when my resident called me about her, and just as I entered the little cubicle, someone dropped a large metal pan by the door. Before I could introduce myself she yelled at me. “I’m not gonna use one of those f– things, doc!” and she pointed to the bedpan on the floor.

The nurse looked up apologetically. “No, I’m just taking it out of the room, Vesna. It’s not for you.”

“Do I have to stay down here all night, doctor? It’s too f– noisy!” She said this all too loudly, ostensibly so her voice would be audible above the noise, but despite the outburst, despite the angry expression on her face, for a fleeting moment her eyes seemed to betray her when she glanced at me: they twinkled contritely, as if trying to excuse the behaviour of their owner.

My resident shook his head. There was apparently a bed available for her up on the ward so she’d be moved up shortly.

At hand-over rounds the next morning, the resident looked exhausted. Apparently Vesna had complained that the patient in the bed next to hers was snoring so she couldn’t sleep. And the nurses insisted on talking in the corridor whenever they walked by; the medicine carts they pushed were too noisy; or somebody kept coughing in the next room. So, Vesna demanded a sedative. That, of course, required the okay of a doctor first. And then, later, her IV stopped working –it had been inserted into a vein that would not ordinarily have been used- and the so the resident had been called to order the antibiotics to be given by some other route. The ones she needed were not available by mouth, so the only remaining way was by injection into her muscles. Vesna objected, of course, and so the resident had to go up to the ward again and explain things to her.

The hospital food was certainly not to Vesna’s liking –she said it made her sick- although, in fact, it was probably a side effect of her antibiotics. I’ve never liked institutional food either, but there seemed no end to her complaints while she was in hospital. We learned to tolerate her, of course, but I remember deciding to buy coffee for the resident staff when we discharged her.

I suppose I fell prey to the uncharitable assumption that Vesna was simply a grumpy person –someone whose circumstances had taught her to be suspicious of everything around her; someone who had learned to be tough and difficult to befriend. It was a wall she was forced to live behind -makeup she applied to protect the skin beneath.

She was supposed to come to my office for a follow-up visit a week or so after discharge but I have to admit that I wasn’t surprised when she didn’t show up for her appointment. My secretaries had actually double-booked me for her time, suspecting as much.

A few weeks later, I saw her name on my day sheet again but the woman who sat nervously in the waiting room pretending to be absorbed in a magazine was nothing like the Vesna I’d met in the hospital. This time she was dressed in slim black jeans with a frilly light blue cotton pullover. Her auburn hair was neatly combed and her ears adorned with enormous golden earrings that threatened to snag her curls every time she moved her head. When she saw me approaching, she smiled and stood up to extend her hand.

“I’m sorry I missed my last appointment, doctor,” she said, as soon as we were settled in my office, the embarrassment written in her eyes. “I had to be admitted to another hospital so I couldn’t make it…”

“The infection came back?” I said, concerned that we had discharged her too early.

She chuckled merrily at the thought and shook her head, making the earrings dodge in and out of her curls like it was a game of tag. Then the look of embarrassment returned. “Overdose.” She took a long breath and then shrugged. “Occupational hazard, I’m afraid.” She looked out of the window behind my seat for a moment. “Interesting, though…” she said slowly and deliberately, as if something had just occurred to her. “Same source, same amount… Never happened before and my boyfriend was okay so he couldn’t have cut it with bad shii…” She glanced at me and quickly corrected herself mid-word. “…ah, stuff… so I wonder how I could have overdosed.” She sat back in her chair and shrugged it off. “Maybe somebody’s trying to tell me to change my ways while I still can, eh?” She giggled like a school girl -and for a moment, she was.

Was she a victim of PHS or, in her case at least, the recipient of an opportunity? Were the two events even related, or in my rosy-eyed naiveté, am I projecting my own hopes on an otherwise indifferent world? I don’t know, of course, because I never saw Vesna again, but I’d like to think that something changed her. But for the better this time… Could PHS do that too?

I remembered the words of Emily Dickinson:

‘Hope’ is the thing with feathers that perches in the soul                                                                                    And sings the tune without the words and never stops at all.’