The gift of accompaniment

I remember it from my medical practice; I remember it from dealing with friends with incurable illness: the feeling of helplessness in commiseration. The recognition that my often naïve suggestions, intended to help, were not what was required, nor even wanted, for that matter. Sometimes there are no solutions; sometimes presence –listening- in itself is enough… No, not enough, but at least comforting.

I suppose some people come to this realization naturally -instinctively understanding what is needed- while for others it is absorbed only gradually and after much trial and error. Some issues require solutions, guidance, and expertise, but some require the simpler yet more difficult task of companionship. Being there, often with wordless compassion. Silent empathy.

Not trying for control and directing things can be difficult, but usually there is a time for silence. Sometimes, there is an inevitability that simply has to be accepted. It’s a subject that many of us would rather not confront, and yet we have to -it is important. Perhaps that’s why I was drawn to the short essay in Aeon written by Nicholaos Jones, department chair and professor of philosophy at the University of Alabama in Huntsville. https://aeon.co/ideas/at-times-of-suffering-the-greatest-gift-is-accompaniment-by-another

Jones writes about the issues that often accompany suffering: ‘despair, dissonance and desolation: despair as hopes for the future confront the inevitability of fate; dissonance between an imagined future and present reality; and the desolation of being alienated and isolated when others withdraw.’ We want so badly to solve the problem, and console the suffering person that we find it hard simply to listen without interfering. Indeed, their despair can become our own.

A remedy he suggests -if that’s an appropriate word to use- is one of ‘accompaniment’, and his way of illustrating the process is, in itself, helpful and imaginative. ‘In music, the accompaniment is the musical part that supports the melody or main themes of a musical performance, as when an organist or guitarist accompanies a choir, or a drummer and bass player accompany a lead singer… accompanying another involves lending support to the other in ways that amplify or strengthen their efforts… accompaniment aims to acknowledge and engage with the efforts of another – not for the sake of helping the other achieve some goal that’s impossible to achieve on one’s own, but for the sake of enriching, and making manifest the value of, the other’s efforts.’

So, ‘To accompany another is to give companionship against despair… one who accompanies offers consolation, being with another in their solitude by creating opportunities for testimony, listening and hearing without judgment, and reinforcing the other’s dignity by acknowledging their experience and struggle.’

There’s something about that which strikes a chord, don’t you think? There are times when we need to recognize that not everything can be solved -an exceptionally difficult concept to accept. But, it’s important to embrace a truth the other knows all too well, and in so doing, embrace them. Indeed, ‘It succeeds not by resolving problems but by aligning with the other – experiencing the other’s suffering in common, allowing the other’s struggle to matter.’

I learned something about that in my early years of medical training when, as a third year medical student, I was assigned to the gerontology ward of a general hospital. In fact, it was a sort of bribe, I suspect: in turn for doing entrance physical exams and handling the nighttime preliminary calls by the nurses for the elderly patients, I was given free room and board.

There wasn’t really that much to it, so I spent a lot of time reading, and talking to the patients. One patient in particular, still stands out in my memory, however. Jane was a 94 year old, frail looking woman who always seemed to have her wheelchair placed near a window overlooking a little park in front of the hospital. Loosely strapped in the seat so she wouldn’t fall out when her head occasionally fell forward in a medication-enhanced somnolence, she never seemed to bother with any of the other patients who talked to each other while similarly positioned by the same window.

I was new to gerontology, and, apart from my recently retired parents, I had never before had much interaction with the elderly, so I wandered over to talk to her. I have to say I was a little unnerved by the thinness of her skin, the sparsity of the spiderweb hair remaining on her scalp, and the degree to which her cheekbones were so prominently on display. She kept grinding her gums together, almost as if her tongue was searching for some teeth and she barely looked at me as I pulled up a chair beside her.

“Hi,” I started, a little nervous about how to talk with someone so old. “My name is G -well anyway, that’s what everybody calls me- and I’m the medical student assigned to your ward…”

She turned enough to allow me into her head through two large rheumy eyes that rotated in their sockets as easily as well-greased ball bearings. A tentative smile appeared briefly on her thin lips, and then quickly disappeared. “How do you do?” she answered -rather formally, I thought. “My name is Jane… Did they send you over here to cheer me up?” she added, as if it was what the nurses did if they remembered.

I shrugged, rather embarrassed at the thought that I had been sent on an errand. “No… I’ve just seen you sitting here day after day, and thought I’d introduce myself.”

She studied my face for a moment and then blinked. “I thought perhaps they sent you to convince me to take some more of their pills.”

I wasn’t sure what to say to that -I was just learning to be a doctor. “Pills for what, Jane?”

Her face relaxed into another brief smile, and she looked away again. “Cancer, and pain, mostly…”

“So… Are you not taking them?”

“Sometimes -when the pain gets too bad, I relent a bit.”

“But…”

Her smile broadened and she finally turned her head to look right at me. “But you can’t convince me, G.”

I was confused. “But why don’t you take them?”

She sighed and her eyes softened as she tried to decipher my question. “I’m 94 years old,” she started, her voice soft and confident. “And I’ve had a good life. There’s no cure for Age, nor is there a cure for my cancer. The pills just make me miserable…”

“Are there no other pills they could try?” I was trying to make sense of her rebellion and she must have seen that.

Like two little birds, she sent her eyes to slowly circle my face before she allowed them to rest on my cheeks. I could tell she was trying to read my expression. I must have looked puzzled, because she reached over and grasped my hand to reassure me.

“I’m sure this is hard for a young doctor like you to understand, but I don’t fear Death…” she said, smiling at the notion. “…No more than I fear Life at any rate,” she added.

The idea of accepting death was new to me, and I suppose it showed on my face because she squeezed my hand more strongly this time.

“None of us can live forever, Dr. G. Life’s not a battle we have to keep on fighting… Eventually, we’re allowed to walk away if we want.”

I smiled and stroked her fingers with my hand. It was her eyes that smiled at me in response.

Thinking back to that time, I realized I had learned something they’d never covered in my lectures. Of course, Jones was right in his essay about the value of accompaniment, but I have to wonder if it was Jane who was actually accompanying me

Am I anybody’s keeper?

Is it possible to understand the world as if you were another person? Or, no matter the effort, would you still be imprisoned within yourself -feeling what you assume you would feel if you were in the same circumstance as her? That what you manage to sample of her condition is inevitably filtered through your own experience is far from profound, of course, but it is often buried within the empathy you think you are expressing. Empathy is not really how you feel about something; it is about how the other person feels.

But of course you are not the other person, nor have you lived the same life as her. Perhaps, in fact, it is the other way around: the more she has experienced similar things to you -the more like you she is- the more you can empathize with her feelings. Still, this merely reduces empathy to a set of feelings; I suspect there is more to it than this, however. An integral component of empathy is understanding. Much like the philosopher Thomas Nagel’s famous question, ‘What is it like to be a bat?’, surely the central question for empathy would be to ask what it would be like to be the person in question -not just how to feel like her. It seems to me there must be a cognitive, as well as emotional side to empathy.

I found an insightful essay on this multimodal requirement as exemplified in the fictional character of Sherlock Holmes by Maria Konnikova. She felt that Holmes seemed to be able to put himself in the victim’s mind, if not necessarily in their heart. https://aeon.co/essays/empathy-depends-on-a-cool-head-as-much-as-a-warm-heart

As she observes, according to Holmes ‘whatever is emotional is opposed to that true cold reason which I place above all things… It is of the first importance not to allow your judgment to be biased by personal qualities… The emotional qualities are antagonistic to clear reasoning.’

But, how can that be? For Holmes, his ability to understand the problem is based on his creative imagination. ‘In fact, his success stems from the very non-linearity and imaginative nature of his thinking, his ability to engage the hypothetical just as he might the physical here-and-now… So Holmes is an expert at the very thing that makes empathy possible in the first place – seeing the world from another’s point of view. He is entirely capable of understanding someone else’s internal state, mentalising and considering that state.’ But not just that.

An emotional lack may permit a relative freedom from prejudice. ‘[R]ecent research bears this out. Most of us start from a place of deep-rooted egocentricity: we take things as we see them, and then try to expand our perspectives to encompass those of others. But we are not very good at it… Even when we know that someone’s background is different from our own, and that we should be wary of assuming we can understand their situation as though it were our own, we still can’t shake off our own preconceptions in judging them. The more cognitively strained we are (the more we have going on mentally), the worse we become at adjusting our egocentric views to fit someone else’s picture of the world… Our neural networks might be mirroring another’s suffering, but largely because we worry how it would feel for us. Not so Holmes. Because he has worked hard to dampen his initial emotional reactions to people, he becomes more complete in his adjustment, more able to imagine reality from an alternative perspective.’

So, in a way, sometimes it’s actually their difference from us that allows us to judge what the other person is going through more accurately. ‘Empathy it seems, is not simply a rush of fellow-feeling, for this might be an entirely unreliable gauge of the inner world of others.’

In fact, ‘The ability to see the world from another set of eyes, to experience things vicariously, at multiple levels, is training ground for such feats of imagination and reason that allow a Holmes to solve almost any crime, an Einstein to imagine a reality unlike any that we’ve experienced before (in keeping with laws unlike any we’ve come up with before), and a Picasso to make art that differs from any prior conception of what art can be.’ Imagination, and emotion; there’s a commonality: ‘to be creative, just as to be empathetic, we must depart from our own point of view… The emotional element in empathy is itself a limited one. It is selective and often prejudicial – we tend to empathise more with people whom we know or perceive to be like us.’

I was talking to a friend in a grocery store lineup the other day, masked and socially distanced of course, when an elderly  man with his mask hanging from his chin moved into the space ahead of her. He made no apology, nor did he seem to understand the need for distancing in a line. He’d merely seen a space and moved into it.

“The poor old dear,” I muttered, my voice muffled by my mask. I’m not sure if she heard my words, but my friend’s eyes first saucered in surprise at my reaction, and then narrowed into an angry scowl at the intrusion as she turned to glare at him.

“Excuse me, sir,” she said, addressing the old man, ‘The line starts back there…” And she pointed past a number of people standing behind her.

He turned his head slowly and stared at her for a moment. “There was a space in front of you, though…”

“As there is supposed to be,” she interrupted before he could finish his sentence. She sounded angry –righteously angry.

The only indication that he had understood her anger was to shrug and turn his head away again.

“And you are not wearing your mask, sir,” she continued, her anger obviously unsated.

His response was to turn and point to the mask hanging from his chin and smile. “I can’t breathe very well through it,” he said in a soft, firm voice.

I risked a step forward. “He’s just an old man, Janice,” I said, trying to talk softly, but the sound was no doubt further muffled by the thick mask I was wearing. “He’s probably a little confused. Let it go…”

Janice stared at me for a moment. “Then he shouldn’t be shopping on his own, G,” she said, shaking her head as if she couldn’t understand why I would be defending him. “These are dangerous times…”

I blinked, similarly wondering why she was so adamant.

“There are rules, G!” I could see by the movement of her mask that she had sighed. “We can’t just bend the rules because we feel sorry for someone.”

“Maybe not, but it would create less of a fuss for people in the line if we just let him proceed.” I looked at the line behind me and nobody else seemed upset by his action -if they had even noticed. “And he doesn’t seem bothered by them either…”

She continued to stare at me -blankly at first, uncomprehendingly.

Then, when I smiled behind my mask, I think she saw the wrinkles from my eyes because her aggressive posture seemed to relax. “Well, maybe just this once, eh?” she said, and shrugged.

Empathy in action…

Look the other way, please.

There really are inconvenient truths, aren’t there? There are some things that seem to slip quietly under the radar -things that go unremarked until they  are brought our our attention. And even then, they are perhaps dismissed as unimportant -or worse, accepted and rationalized in an attempt to justify them as tools that enable the greater good of humanity. We, after all, are what it’s all about; our welfare is paramount, not to mention our survival. And when you frame it in those terms, there is little room for noblesse oblige. Survival of the fittest, quickly becomes survival of the ruthless -of the remorseless.

Perhaps I should explain. I live on a little hobby farm in the country, and when I was actively breeding sheep, chickens, and llamas, I was well acquainted with interested visitors, both two and four-legged. Everybody, it seemed, had or wanted, a stake in the game. Friends wanted eggs for their breakfasts, colleagues wanted lamb for their dinners, and I wanted an escape from the city. But, to share with some, was to share with all.

That’s how Life works, I suppose: word gets around, and soon there are all manner of uninvited guests -not all of whom knock, or ask permission. Some just appear -like carpenter ants- but some try not to advertise their arrival, and in fact seem to want to stay out of sight, if not out of mind. They’re the ones I used to worry about -if they’re in the barn, where else might they hide?

Of course I’m talking about rats -not so much the mice which kept my three cats busy in the night. No, the rats who hid in the engine of my pickup truck and ate the plastic off the wires to my distributor, or the battery wires in my car; the rats who patrolled the barn and left their distinctive trail through the uneaten bits of grain I fed the sheep; the rats who also holed up in the woodpile in my garage, and wherever else they could gather relatively undisturbed.

And yes, I declared war on them with spring traps baited with peanut butter, and put warfarin-like pellets in short, narrow little PVC pipes so the cats couldn’t get into them, but alas, the rats outlasted my efforts. Only when I retired and the chickens died in a well-fed old age, and only when I sold the sheep and llamas did the supply of grain eventually disappear -only then did the rats disappear. And I’ve never seen a rat, or droppings since. It reminded me of  the last stanza of Longfellow’s poem The Day is Done:

                                 And the night shall be filled with music,

                                      And the cares, that infest the day,

                                Shall fold their tents, like the Arabs,

                                     And as silently steal away.

I know, I know -they’re only rats, but their leaving seemed so sudden; I came to think of them as having made a collective decision to move their troupe away to greener fields -sort of like the Travellers in Britain with their little trailers, able to leave when conditions are no longer hospitable for them. I suppose I Disneyfied them in my over-active imagination, and yet there was something about their migration that softened their attributes. I’ve never been fond of rats -especially their tails- but on the other hand I’ve always found it hard to believe all of the sinister lore attached to their sneaky habits. After all, they’ve lived with mankind and our middens from the beginning, I would imagine… and we’re both still here in spades. You have to assume a certain degree of intelligence to coexist with us for so long, despite our best efforts to exterminate them.

As these things happen, I tripped over a tantalizing essay co-written by Kristin Andrews, a professor of philosophy at York University in Toronto, and Susana Monsó, a post-doctoral fellow at the Messerli Research Institute in Vienna. https://aeon.co/essays/why-dont-rats-get-the-same-ethical-protections-as-primates

The first three sentences of the article hooked me: ‘In the late 1990s, Jaak Panksepp, the father of affective neuroscience, discovered that rats laugh. This fact had remained hidden because rats laugh in ultrasonic chirps that we can’t hear. It was only when Brian Knutson, a member of Panksepp’s lab, started to monitor their vocalisations during social play that he realised there was something that appeared unexpectedly similar to human laughter.’ And then, okay, they tickled them. ‘They found that the rats’ vocalisations more than doubled during tickling, and that rats bonded with the ticklers, approaching them more frequently for social play. The rats were enjoying themselves.’

Of course, there were some other features, that if further substantiated, we likely don’t want to hear: ‘We now know that rats don’t live merely in the present, but are capable of reliving memories of past experiences and mentally planning ahead the navigation route they will later follow. They reciprocally trade different kinds of goods with each other – and understand not only when they owe a favour to another rat, but also that the favour can be paid back in a different currency. When they make a wrong choice, they display something that appears very close to regret.’ I’ve left the links intact, for reference, in case the reader’s credulity level sinks to the Fake News level.

But, for me at least, ‘The most unexpected discovery, however, was that rats are capable of empathy…  It all began with a study in which the rats refused to press a lever to obtain food when that lever also delivered a shock to a fellow rat in an adjacent cage. The rats would rather starve than witness a rat suffering. Follow-up studies found that rats would press a lever to lower a rat who was suspended from a harness; that they would refuse to walk down a path in a maze if it resulted in a shock delivered to another rat; and that rats who had been shocked themselves were less likely to allow other rats to be shocked, having been through the discomfort themselves.’

The reason the essay intrigued me, I’m sure, is because it has long been a practice to utilize rats (and mice, of course) as mindless fodder for our experimental quandaries. And, there’s little question that it is better to experiment on an animal than on a human, and especially a time-honoured nuisance and villain like a rat rather than a chimpanzee, or whatever. I don’t think I would be prepared to argue their utility for this, nor that until we have devised non-living alternatives -cell cultures, or AI modelling, perhaps- some things will require validation in functioning organisms to advance our knowledge for the benefit of the rulers (us).

My hope, however, is to point out that our hubris may tend to blind us to the increasing likelihood that rats, are not mindless protoplasms living forever in the ‘now’ of their experiences. Are they sentient beings…? I suppose their sentience , like ours, is on a spectrum, isn’t it?

But if we are to continue to utilize them as unwitting research subjects, it seems to me that we should treat them with kindness and a degree of respect. Remember the words of Gloucester after he has been blinded by Cornwall, in Shakespeare’s King Lear: ‘As flies to wanton boys are we to the gods. They kill us for their sport.’ Let us not stoop to that…

Blow, Blow, Thou Winter Wind

There is a time, a dark time, when normal daylight thoughts are banished. A time when what remains are skeletal shadows, atavistic remnants of ancestral fears, unbidden fragments of anchorless dread which in the fullness of a sunlit day, are sheer cotton. -translucent at their best. It is when doors are left ajar and watchmen sleep. It is a time when filtering is impossible, and  vetting unreliable. It is the time of night when even the moon is asleep, or hiding…

And normally, so am I, but age and diet sometimes conspire to rearrange diurnal rhythms –shuffle the deck- and if I allow the shards of my imagination any attempts to organize unsupervised, the resultant patterns are not ones I would recognize in the light. Nor accept. It is an existential angst, a dark time of the soul.

A few weeks ago, I awoke sweating, and in the nocturnal silence of a moonless night, seemed trapped in an airless blanket of dread. I couldn’t see, and everything around me was still. Unmoving. Mute. If it had been preceded by a dream, I couldn’t remember it; all was numbed by the intensity of the terror, and I was helpless in the current swirling noiselessly around me. Suddenly, the sure and certain knowledge that I would be blinded from complications of impending cataract surgery gripped me like the jaws of an unseen, unexpected predator, and the ensuing silence convinced me of the extent of my coeval deafness. I was, and would be for all time, trapped in a silent darkness -solitary confinement on the authority of cast dice.

Of course the feeling passed, and my daylight remembrance of the event was suitably tailored in the sun, but the feeling lingered. What would it be like to be forever trapped in both silence and darkness, I wondered? What would be left of life? And for that matter, what would be the use of a gift I could no longer use? No longer experience… except as a living, solitary hell?

I suppose I’m being overly dramatic about a highly unlikely confluence of events, but even the possibility makes me shudder -makes me fearful about the fragile egg-shell in which I am encased, and the delicacy of the components it is charged with protecting. It is perhaps a wonder that we as a species –and more specifically, I as an individual- have survived at all, let alone this many years.

With this in the back of my mind, I am surprised I had not heard of Usher syndrome before, although perhaps my specialty of Obstetrics and Gynaecology quarantined me from an extremely rare condition that results in both blindness and deafness as well as a host of other non-gynaecologic impairments. But it was the subject of a BBC article that caught my eye and quickly brought back the horror of my panic attack: http://www.bbc.com/news/disability-38853237

It’s the story of a young girl, Molly, who ‘was born severely deaf and learned to lip read. But, at the age of 12, she was diagnosed with Usher syndrome, a degenerative disease which causes sight and hearing loss. Now aged 22 she has just 5% of sight left in one eye.’ The eye condition is called retinitis pigmentosa which progressively affects peripheral vision and results in night blindness as well.

And, as if deafness and blindness were not enough, she was also a teenager struggling like every other teen, to negotiate the serpentine interstices of social life. She did receive speech therapy, so communication was possible, but as she admits, ‘”I have to strategise everything I do. I am night-blind and so when I go out I would often ask to hang onto a friend. I will only go out with the close friends who do not make me feel a burden.”’

There are also mental health issues with Usher syndrome, not surprisingly, and Molly has a bipolar disease which can complicate her ability to cope with her disabilities at times. Also, ‘Her experiences are often dictated by the support she receives. While she says college restored her faith in humanity, she left university early due to a lack of assistance. “Lecturers didn’t have the time to understand my condition. Training and awareness sessions were set up for staff and nobody turned up. I just needed materials to be made accessible – large text, for lecturers to wear a radio aid that connected to my hearing aids – it’s as simple as that.”’

Some people are truly special, aren’t they? I suspect I would have sunk into an irremediable depression and yet ‘Molly has set up her own charity – The Molly Watt Trust – to support others with Usher and has spoken at prestigious institutions including Harvard University and the House of Commons [UK] outlining how capable people with Usher are.’

But perhaps the spirit soars, even in captivity –or maybe especially in captivity. I’m reminded of Victor Frankl’s book Man’s Search for Meaning and his thesis of ‘tragic optimism’: ‘How […] can life retain its potential meaning in spite of its tragic aspects? After all, “saying yes to life in spite of everything […] presupposes that life is potentially meaningful under any conditions, even those which are most miserable. And this in turn presupposes the human capacity to creatively turn life’s negative aspects into something positive or constructive. In other words, what matters is to make the best of any given situation. […]an optimism in the face of tragedy and in view of the human potential which at its best always allows for: turning suffering into a human achievement and accomplishment […] and deriving from life’s transitoriness an incentive to take responsible action.’

I suppose that it is difficult to judge a response like Molly’s from the outside, though; I suspect that true empathy –experiencing something through another’s mind- is nigh on impossible for most of us in her case. After all, it would require relinquishing all of that which we have come to accept as normal –sight for as many years as we have lived, and the sounds that have accompanied us through the years… An existence unimpeded -until now, perhaps- by significant impairment. The contrast between then and now would be overwhelming, I think.

And yet, as Helena says in Shakespeare’s All’s Well That Ends Well, ‘”Oft expectation fails, and most oft there where most it promises; and oft it hits where hope is coldest, and despair most fits.”’

Thank you Molly!

 

 

The Trigger Warning

Call me naive, if you will, or maybe even uninformed, but not insensitive. Not indifferent; I am neither.  Unaware, perhaps comes closest. And, until recently, the concept of trigger warning was not one that I thought would have arisen in the day to day world of office gynaecology. But I was wrong.

A trigger warning, I have since discovered, is an alert to the audience (or patient) that what you are going to say might inadvertently offend or upset them –especially if they had experienced a related trauma. Theoretically, at least, it gives them an opportunity to prepare themselves beforehand, or inform you that they would rather not hear that part of your discussion. Many university lecturers have taken to issuing these warnings in their preparatory notes, or at least at the beginning of their lectures, I understand.

And at first glance, it seems the reasonable thing to do. If something in the lecture might offend or distress some students, then they should have the opportunity to opt out of that particular lecture without punitive consequences. On the other hand, to withhold some of the contents from the entire class in case it offends someone, seems like censorship. So I think that a prophylactic warning beforehand is in everybody’s best interest.

I suppose it could get out of hand, however.

Jennifer was a patient that I had seen for the first time in the hospital colposcopy clinic for  a rather long history of abnormal pap smears. I had looked at her cervix through a colposcope (a microscope with a long focal length so it can visualize the cervix even high up in the vagina) and biopsied an area that was likely responsible for the pap smear change; she had come to the office to discuss the findings.

A young woman in her late twenties, she seemed quite self assured as she sat quietly in the busy waiting room reading a magazine oblivious to the noise around her. Dressed in black designer jeans and a baggy yellow sweat shirt that said ‘Really?’ in bold blue letters, she looked capable of weathering any disturbance. But, as absorbed in the intricacies of the magazine article as she seemed, her eyes immediately locked on mine when I appeared in the room. Brown, curious eyes, as I recall; eyes that, once engaged, held their target until it turned away –or responded as I did, with a proffered hand.

When we were settled in my office, and she had inspected the room, a sudden and unexpected smile appeared on her face. It was, I suspect, an attempt to force me to give her good news about the biopsy. “So what did you find, doctor?” she said, with a lilt in her voice.

It’s often difficult to discuss an abnormality with someone who seems sure that nothing is wrong. Obviously her GP had chosen not to. “Well, you remember that the pap smear that brought you to the colposcopy clinic in the first place was abnormal…”

“Yes,” she interrupted, “but it was only mildly abnormal…”

I smiled in what I hoped was a reassuring fashion and nodded. “Pap smears are an early part of a screening system that helps us to decide whether or not to investigate further. They’re just cells that we collect by scraping the surface of the cervix after all.”

Her expression immediately changed and her previously cheerful face tightened. “What are you trying to tell me, doctor?” she said, and straightened in her chair. She stared at me for a moment, but before I could formulate an answer, words tumbled from her mouth. “Do I have cancer? Is that why you brought me in today instead of letting my GP tell me?”

I kept my eyes calm, and shook my head. “No, far from it.” Once someone has used the C word, I often find it’s important to disavow them of it immediately or it festers in the background. “You have a moderate abnormality on the biopsy I took.” I avoided using the Bethesda system’s alternate label of ‘high grade’ to help her to process the news. “It’s definitely not cancer, but if you left it for a while, it might certainly take that route…”

“Left it how long?” she asked, trying, unsuccessfully, to keep the panic out of her voice.

I shrugged, to show her that I wasn’t particularly worried. “Years, likely… but we usually treat it soon after we diagnose it… Just in case.” I added thoughtfully.

Her eyes were dinner plates and her mouth was trembling; I thought she might burst into tears, so I handed her a tissue.

“And… How do you treat it?” She managed to look out the window behind my back for a moment. “Surgery?”

I nodded reassuringly. I was about to describe a small five or ten-minute operation we do in the outpatient’s department under local anaesthetic when she exploded in tears.

“I will not let you take my uterus out, doctor!” she said between sobs. “We’re trying to get pregnant!”

“I won’t let me take your uterus out either, Jennifer,” I said, trying to lighten her mood, I guess. But it backfired.

“You seem to be taking this whole thing rather lightly, doctor. I would have hoped you would be more sensitive…”

My face fell. “I’m sorry, Jennifer. I was just trying to reassure you that removing your uterus was not the kind of surgery I had in mind. It was a rather clumsy attempt, though. I’m sorry…”

Her forehead softened and she grabbed another tissue and relaxed a little on her chair. “Remember, we want to get pregnant soon,” she said, her words tentative now. “We’ve already lost one… I had a miscarriage last year,” she added hastily for fear I might not understand. She stared at me for a moment. “Could I wait till after I’ve had a baby and then do the surgery?

I looked at the findings from the colposcopy once again. She had a rather large lesion and the pathology report suggested that some areas of the biopsy might be more severe -not cancer, but certainly meriting treatment. “You always have a choice, Jennifer…”

“But…”

I realized she probably felt there might be different opinions for management so I sat back in my chair to show her I was willing to listen, but she just continued to stare at me with a mixture of anger and disbelief on her face. “Would you like me to ask your GP to send you to another gynaecologist for a second opinion?”

She didn’t say anything, so I decided to describe the operation I usually perform for her abnormality: a LEEP (Loop Electrosurgical Excision Procedure). It involves taking the abnormal cells off the cervix by removing a thin disk of tissue. I drew on a diagram of the cervix and uterus as I was describing it so she could understand it a little better. I even gave her the diagram to take home with her.

As I was finishing, she looked up from the paper and locked eyes with me again. “And the complications?  Am I going to be able to have children?”

I smiled at her again. I had been about to discuss possible complications with her. “Well, hopefully it won’t interfere with that, but if you look it up online, you’ll see a few complications listed. In my experience they’re not very common, though.”

My attempt to put the complications into some kind of perspective for her obviously didn’t reassure Jennifer. “What are they?” She said, rather harshly I thought.

“Well, in pregnancy, the cervix has to remain strong enough to hold the baby inside until it’s ready. If too much of it is taken away with the surgery, then it might open prematurely –incompetent cervix it’s called- and the pregnancy might be lost…” Her mouth fell open and her eyes narrowed. “But,” I continued before she could say anything, “nowadays that first ultrasound you get in pregnancy can look at the cervix and pretty reliably reassure us that it’s not likely to happen.” I kept my face as neutral as I could in an attempt to disarm her growing distress. “And if it seemed likely that the cervix was shortening, or if we discovered a problem later in the pregnancy –the baby’s a lot bigger then, remember, and so it exerts more pressure on the cervix- we could put a stitch called a ‘cerclage’ around the cervix to keep it closed. Then, near the end of pregnancy when the baby is old enough to be born safely, we untie it…”

She could barely speak, she was so angry. She glared at me through predatory eyes and then, with clenched teeth and a barely open mouth, she managed to say something. “You know, I’m really disappointed in you doctor! With all your experience and with all I’ve heard about you, I’m really disappointed.”

I suppose my expression changed to one of puzzlement –astonishment, really- because she immediately began to put on the coat she’d kept on her lap.

“You knew I’d had a miscarriage –it’s on that form I filled out in the hospital for that clinic. And I told you here in the office just a minute ago. You could see I was worried, and yet you still kept talking as if it was simply business as usual…!” She grabbed another tissue and dabbed both eyes again. “I had a hard time recovering from the pregnancy I lost… But you didn’t care!”

“I’m sorry… I…” But she wasn’t listening.

“Any doctor who was sensitive to their patients –anybody for that matter- would have known to give a trigger warning…” she said and stood to leave. “I’m going to ask my GP to send me to someone more empathetic,” she said and turned on her heel and stomped angrily out of the office.

I felt terrible too; I felt I’d failed her -even though there’s no easy way to tell people things they don’t want to hear. Thinking back on it, I suppose I was insensitive to her needs. And yet…

It’s hard to be anything but humble in this field…

 

 

The Empathy of Age

I am intrigued by the concept of empathy. Variously defined as caring, psychological identification, or even sharing another person’s feelings, it is nevertheless a quality incumbent upon those of us in the health profession in whatever capacity.

Empathy is a word that has, in some minds, become synonymous with other altruistic traits such as sympathy, compassion, or even pity, but it is broader than those -and perhaps that is what makes it so valuable -so unique as a descriptor. Sympathy, for example, is more restricted in emphasis: more of a feeling of concern for another who is in need; compassion, on the other hand is what we may feel when another requires our help –a motivator.

Empathy encompasses these, and more. I like the definition in Wikipedia: Empathy is the capacity to understand or feel what another person is experiencing from within the other person’s frame of reference.

But is empathy something like a genetic gift? Something that pushes those who possess it to self-select into the helping professions? Or is it more like courage: you don’t know if you have it until it becomes necessary?

No, apparently it can be taught –although I must say I must have missed that lecture in medical school because, along with things like ethics and cultural safety, it was an assumed quantity. If you were going to be a doctor, that meant you had it… But, like St. Thomas Aquinas’ understanding of Time, it was an entity that was only definable when you didn’t try -or the philosopher Krishnamurti’s objection to naming God, because it confined the concept…

Over the years, though, I have tried to confine it –or at least experience its various manifestations. And although these are no doubt legion, I am still thirsty. Readers of these essays have perhaps already had their fill of my insatiable insistence on the art of listening before speaking (For example: https://musingsonwomenshealth.wordpress.com/2015/06/30/when-silence-is-golden/ ) But I’m afraid there was yet another news article that caught my eye: http://www.bbc.co.uk/news/magazine-33287727  and I thought I’d try it out at the first opportunity. I’m always looking for new tricks.

Radical listening –that sounded easy. And familiar: “…be present to what’s really going on within – to the unique feelings and needs a person is experiencing at that very moment” and, in practice, “Let people have their say, hold back from interrupting and even reflect back what they’ve told you so they knew you were really listening.” Perhaps that’s what I have been doing all along, but not consciously aware of it, though. Or maybe not –maybe all doctors think they listen, but possibly what we are actually listening to is ourselves –our prepared judgements, our sure and certain feeling that we have the answers. Or, at least an answer… Science uses inductive methods: start with the data and then establish a theory that seems to fit. But maybe, despite our protestations to the contrary, we sometimes resort to a type of deductive reasoning: start with a theory and then make the data fit -or at least search around until we find some that do. Because if we don’t have an answer… what good are we?

Time for awareness. I thought I’d start with someone with a relatively common problem –a non-gendered one so I could more easily slip into their shoes, as it were. I scanned my list of patients for the day but none seemed suitable. I simply could not easily cohabit a mind filled with fibroids or endometriosis.

Loren was different. A woman with persisting hot flushes seemed initially excludable from my naïvely chosen criteria, and yet it soon became apparent that the hot flushes were a sort of proxy. She was a young looking 62 with barely a wrinkle on her face. Fashionably thin and elegantly dressed, she seemed to have ignored the years that have exiled so many others -stranded them, as it were, on a foreign, uninviting coast. No, Loren was a professor at one of the universities here in the city, and much in demand both for her human rights advocacy and her several books on the subject that seemed to be quoted whenever federal immigration policies were in the news.

“I get these hot feelings in the most unfortunate circumstances, doctor. They usually occur when I’m in a social situation where my reaction to them would be noticeable –giving a lecture, for example. Or an interview. I’ve never embarrassed easily, but if some commentator manages it, I find myself almost overwhelmed by a need to wipe my forhead –not a sign of strength.”

She paused, no doubt waiting to judge my reaction as to whether that was a common feature. Mentally rubbing my hands and determined to try my new tricks, I smiled reassuringly. “So these hot flushes occur in social situations where to acknowledge them would be awkward..?”

She nodded, and then as if she’d been given permission to speak again: “I’m worried, frankly. I never used to be like this.” She considered it briefly, and her eyes turned inward for a moment. “I’m beginning to see it as a type of physiological dementia –a sort of bodily facsimile… an early protoype of things to come…”

The thought seemed to bother her and she studied my face for a refutation. “I can see you’re worried, Loren,” I replied slowly. “I’ve never heard hot flushes described as a type of nascent dementia, though.” Good; I was proud of that succinct encapsulation of her thoughts and looked at her contentedly. This wasn’t so hard.

She sighed, but I wasn’t sure whether it was out of satisfaction at finally being heard, or frustration. “And words don’t come as easily as they used to any more. I’ve been blaming it on the hot flushes because the two seem… coeval.” She glanced at me, her eyes frightened birds huddling in their cages. “Like just now –I couldn’t think of another word that meant ‘at the same time’ quickly enough, so I substituted ‘coeval’…”

Another long pause; I wondered whether this was the time to reiterate –the word ‘regurgitate’ entered my head and I almost smiled, but her face looked so anguished I decided to go for it. “Words don’t come easily anymore –and you blame it on your hot flushes… I like the word ‘coeval’ I have to say.” I blushed at my amateurish attempt at precis this time…

She didn’t sigh this time, but I could tell her eyes were about to leave their nest. “I suppose all of us experience this after a certain age…” She diverted her attention to the picture of a peasant woman leading a horse that hung on the opposite wall. “But words have been my world, and their loss –or at least their current drying up to a trickle- terrifies me.” She continued to stare at the picture, as if the answer lay in the coloured sketch, its almost random lines a reminder of her words. Suddenly she turned to stare at me. No, to study my reaction. I could sense her dividing me into grids, mathematically precise areas for analysis. “Hormones didn’t help before… Do you think it would help to go back on them?”

It was a plea, begging for an answer. A solution. Anything to give her hope. It was going to be hard to stick with my radical listening approach… Or had I already done it? I tried to smile intelligently at her, tried to find some words to help, but like her, I was struggling. “Words…” I started hesitantly, aware that I was blushing at my sudden blank. It was like my head was an empty screen. “…don’t come easily to you anymore…” The look of frustration at my repeated attempts to incorporate her own words into my response was becoming glaringly obvious, and I could almost feel her anger. I sighed and abandoned my tactics. “Words don’t come easily to any of us after a certain age, and its not only embarrassing, it’s frightening. They are my world as well –they’ve been what have defined me not only as an explicator of the arcane, but also as a person. Words are friends I’ve called on whenever the need arose. They’re still there, but as with you, the words that arrive in response are often friends of friends. Acquaintances from books I’ve read and long since forgotten. Clumsy words. Opaque words with only approximate relevance that people merely skip over when they hear them, thinking I’m just being clever. Metaphorical.

“And then the words, like branches floating past in a slowly moving river, make way for others –more familiar, perhaps, but moving all the same. And the conversation continues with probably only me who noticed all the substitutions…”

Loren sat back in her chair with a look of satisfaction on her face. Her eyes, caged once again, sat twinkling at me from their lairs. “You know,” she said, apparently finding her words with ease, “I should go to doctors more frequently.” And with that, she reached across the desk and squeezed my hand. “That’s all I needed to…” -a slight pause, almost unnoticeable- “assimilate…”

We looked at each other and smiled. We were of an age.

The Miracle (part 2): a woman’s story in 2 parts

“Emily.” It was the doctor’s voice, and he was leading her into a seat in his office as if she were an old lady. “Emily, it’s good to see you again…” his voice trailed off as he inspected her. “But you were supposed to have come back to see me a month or so ago, remember?”

Why was everybody always asking her if she remembered something or other? She was here wasn’t she? And besides, he knew she couldn’t keep running back to him with every little complaint until she was sure.

“Now remember last time you were in, you said you were having some…ah…” He referred to a folder that lay open on his desk. Couldn’t he remember, she wondered? It hadn’t been that long ago. “You were having some trouble with your bowels,” he continued as if he hadn’t really forgotten. “Constipated, bloated, vague discomfort in your pelvis…”

‘Vague discomfort’? Had she really said that? She became aware that he was drumming his fingers on the desk. It was all very funny, really. He was obviously expecting her to say something but all he would do was look at her quizzically over the bridge of his glasses. His straight, mouse-brown hair was too long for his thin body, she thought. And he was wearing the same creased grey suit as last time. What kind of a doctor only owned one suit?

Finally he ventured to speak again. “What’s been happening lately?” But she only smiled. “Bill told me you’ve been quite sick…” Again the look, and again she refused to be manipulated. “He said you’ve had some more pain and have started to vomit.”

She shrugged. Damn that Bill! This was all supposed to be so different. Why did Bill care anyway? He was never around much and even when he was, he was merely there. But so was she -trees in a meadow: untouching, indifferent, one or the other always in the shade.

Doctor Brock looked annoyed and was having trouble disguising it. “Bill said you wanted to see me Emily.”

She stared at the open file in front of him filled with writing in blues and blacks. Why would he use different colours, she wondered? And some things looked as if they had been underlined; this puzzled her as well. She didn’t think she’d ever told him enough to underline. She blinked, trying to resolve whether or not the line went through or under a sentence. Even doctors made mistakes. The chart was too far away to see clearly, however, so she leaned forward slightly, and as she did he cleared his throat.

“What did you want to see me about Emily? You’re still feeling unwell, aren’t you?”

There he goes again, she thought -just like Bill: he hadn’t asked, he’d stated -accused, actually. As if feeling unwell was wrong -no… expected. She was amazed at the stupidity of the man. How could she confide in someone who couldn’t understand how she felt about it all? She should have gone to a woman.

He sat back in his comfortable leather chair, determined to wait her out. Why was he so stupid? No, obtuse; she knew he wasn’t stupid exactly, just unable to relate to a woman’s needs at a time like this. She stared at him, confronting him silently with her unblinking accusation. She needed someone else; she was sure of it.

He coughed at her quiet threat, as if the noise might dissipate it -make her blink first, maybe. But she was determined. “I’m sorry doctor, you just don’t seem to understand.”

The sudden flurry of words made him jerk forward awkwardly in his chair. She got up to leave. “But you haven’t even told me what’s wrong, Emily. How can you expect..?” She was through the door before he could finish.

“It’s a woman doctor I need,” she told Bill in the car. He may have heard, but he didn’t turn his head or even shrug; it didn’t really matter anymore.

*

Dr. Heath was very young -something the Yellow Pages didn’t mention. But at least her door had the usual trappings of confidence: a sedate, cream-on-plastic plate with the requisite number of letters after her name -a few extra, even, as if to invite entry.

As soon as she got inside, though, Emily realized she had made a mistake. It was cheery enough, with heavily carpeted floors and a large double-glazed window with a view of the city; the plants were nice, if a trifle under-watered; and there were pictures on the walls of babies: babies with hats, babies in diapers, babies at breasts… It wasn’t the office that bothered her. It was the age of the patients that seemed strewn about like clothes: teenagers -all of them. Some pregnant, some with skirts up around their waists -a rogue’s gallery of young people, all staring impudently at her as she crossed self-consciously in front of them to the front desk.

The receptionist couldn’t have been much older, and as Emily gave her name she thought she caught a fleeting smirk that never quite surfaced. “You’ll have to fill in this form for the doctor, Emily. And I’m afraid she’s running a bit late today.” It wasn’t an apology, simply a statement. Take it or leave it.

The form was simple enough: allergies, major illnesses, medications and the like. Nothing too personal -she liked that. The doctor, however, was.

Dr. Heath was a pleasant little thing of about twenty-five, blond, smartly dressed and with eyes that seemed to hunt like spotlights when they hit. She fastened them on Emily. “My nurse mentioned something about you being late for your period, Emily,” she said noncommittally.

Late? That was a laugh. But Emily nodded. “It’s been four or five months now.”

The doctor didn’t seem surprised -or at least her eyes were calm. “Were they regular before?”

Emily closed her eyes impatiently. Of course they were regular. What was she getting at? She took a deep breath. “Yes.” And then she opened her eyes and stared out the window.

“I see,” said the doctor. But Emily didn’t believe her. Her eyes were too steady to be real; nobody was that calm. Dr.Heath wrote something in the chart then looked up again. “Any other symptoms?” She actually smiled when she said that, but Emily was not taken in.

“Maybe you should just examine me, doctor.” It was a simple statement, made calmly, quietly, but the doctor’s expression immediately changed.

“I’m afraid I’ll need to know a few more things about you before we get to that.”

“I’ve filled in the form, so it should all be in there, doctor,” she said confidently. You had to get control of these things early.

Dr. Heath stared at her intensely for a moment, obviously deciding what to do, then shrugged and pointed to a narrow door that Emily had not noticed when she entered. The doctor looked smaller now -pale even. “You’ll find a gown on the table in there. Please undress from the waist down. I’ll be there in a moment.”

It was long moment and Emily could hear voices through the door, but not clearly enough to understand. The doctor’s though, sounded excited, agitated. Had she made the doctor uncomfortable? Emily thought about it for a moment and then rejected the notion: she’d been civil. They were both adults.

The examining room was cold but she stripped to her underwear and sat on the examining table huddled under the flimsy gown. Soon it would be over. Should she tell Bill? He would eventually find out, she realized, but could she count on his support? She chuckled at the thought.

Dr. Heath suddenly appeared at the door, smiled wanly, and asked her to  lie back. “Where does it hurt, Emily?” she said softly.

Emily lifted her head. “Hurt? Who said it hurt?”

The doctor straightened her shoulders a little. “I’ve talked to Dr. Brock.”

“You had no right…” she started, tears forming in her eyes. “What I told him was… just between us.” But she realized how silly that sounded and looked down at her feet.

“Emily, Dr. Brock was concerned. I’m concerned.”

“You had no right,” she repeated, fighting back a sob. “I suppose my husband talked to you as well…” The doctor nodded. “You’re all trying to make it all so… so abnormal,” she said grabbing for her clothes. “Can’t any of you accept it for what it is?” Her cheeks were wet now.

Dr. Heath didn’t move. “What is it Emily?” she said in a soft, sad voice. Emily glared at her and finished dressing. “What is it?” she repeated and grasped her shoulders.

Emily broke free and forced her way past the doctor. “A miracle,” she said between sobs.

“Emily!” There was no mistaking the tone this time. “Emily I’ve talked with your doctor…”

She was through the door but she stopped by the window, near the doctor’s cluttered desk. The cars had their lights on now and it was raining; the sky barely cleared the tops of the buildings. Why was it always like that, she wondered.

“Emily, please listen to me…”

But she just shook her head. Tears rolled gently down her cheeks and she made no effort to wipe them away. Why should she listen? She was living with the proof right here in her abdomen. Her hand reached involuntarily for the palpable swelling growing quietly inside. There. It moved again; she was certain it did. Nothing they could say or do would convince her otherwise. Perhaps another doctor… Yes, that was it, another doctor -an older, more experienced one this time.