Different Flavours

There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy –so says Shakespeare’s Hamlet. I suppose as one ages, there is a tendency to become, if not indifferent, then less surprised at the plethora of variations that exist when they are sought, less amazed at the range of combinations just waiting for discovery. Like ice cream, the world does not come in only one flavour.

But perhaps it is not just the array that so bedazzles, but that we could ever have presumed to define what is normal in anything other than in a statistical way. A Bell Curve distribution confronts us wherever we look –reality is a spectrum no less than the rainbows we all profess to admire. So, then, why is it that in some domains we are less than accepting of mixtures, less tolerant of difference? Why is there the overwhelming need to categorize things as either normal or abnormal? Natural, or unnatural? A macrocosm of only us and them?

Is it just the benefit of retrospection that allows me to notice that no one of us is the same? Or a corollary of Age that lets me thank whatever gods may be that it is like that? That not only do we differ in our tastes and thoughts, but that the discrepancies in our appearance, if nothing else, allow us to recognize each other?

At any rate, I have to say that, as a retired gynaecologist, I was pleasantly surprised to rediscover a world I thought I had left behind –intersex. It was an article in the BBC News that caught my attention: http://www.bbc.com/news/world-africa-39780214 In my day, however, we still hewed to the label ‘hermaphrodite’ if both male and female gonads were present, or even more insensitively, to something like ‘disorders of sex development’, with the medical community taking it upon itself to assign and surgically ‘correct’ the anatomical features at variance with some of the more prominent features of the melange. All this often before the person was able to decide whether or not to identify with either or both traditional sexes. I don’t for a moment believe that this was done malevolently, however, and I think we have to be careful not to apply current sensitivities to another era. Historical revisionism is always a temptation…

But the spectrum of variation is so wide in both anatomy and physiology, not to mention time of discovery, that assignation of gendered roles is fraught. For some, the worry has been that of acceptance –acceptance of any divergent anatomy, any dissonance, by society at large, but also acceptance by the individual themselves (even pronouns become problematic –assigned as they usually are by gender).

It is common nowadays (UN Office of the High Commissioner for Human Rights) to use the (hopefully) neutral term of intersex to define people who ‘are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. Intersex is an umbrella term used to describe a wide range of natural bodily variations. In some cases, intersex traits are visible at birth while in others, they are not apparent until puberty. Some chromosomal intersex variations may not be physically apparent at all.’

Of course attitudes are as disparate as societies themselves. Not all have been as tolerant or accepting of difference as one might hope. The BBC article, for example, describes the attitude in some rural areas in Kenya that a baby born with ambiguous genitalia should be killed. ‘Childbirth is changing in Kenya. Increasingly, mothers are giving birth in hospitals, rather than in the village. But not so long ago the use of traditional birth attendants was the norm, and there was a tacit assumption about how to deal with intersex babies. “They used to kill them,” explains Seline Okiki, chairperson of the Ten Beloved Sisters, a group of traditional birth attendants, also from western Kenya. “If an intersex baby was born, automatically it was seen as a curse and that baby was not allowed to live. It was expected that the traditional birth attendant would kill the child and tell the mother her baby was stillborn.”’ The article goes on to say that ‘In the Luo language, there was even a euphemism for how the baby was killed. Traditional birth attendants would say that they had “broken the sweet potato”. This meant they had used a hard sweet potato to damage the baby’s delicate skull.’

‘Although there are no reliable statistics on how many Kenyans are intersex, doctors believe the rate is the same as in other countries – about 1.7% of the population.’ But the thrust of the article was really to discuss how  Zainab, a midwife in rural western Kenya defied a father’s demand that she kill his newborn baby because it was intersex. She secretly adopted the baby –and indeed, even a second one a couple of years later. ‘In Zainab’s community, and in many others in Kenya, an intersex baby is seen as a bad omen, bringing a curse upon its family and neighbours. By adopting the child, Zainab flouted traditional beliefs and risked being blamed for any misfortune.’ But she represents a slow, but nonetheless steady change in attitudes in rural Kenya.

‘These days, the Ten Beloved Sisters leave delivering babies to hospital midwives. Instead, they support expectant and new mothers and raise awareness about HIV transmission. But in more remote areas, where hospitals are hard to reach, traditional birth attendants still deliver babies the old-fashioned way and the Ten Beloved Sisters believe infanticide still happens.’ But, ‘It is hidden. Not open as it was before’.

I suppose it is progress… No, it is progress –however slow, and frustrating the pace may be, as long as there are people like Zainab there is hope. But it still leaves me shaking my head.

For some reason Robert Frost’s poem, The Road Not Taken, springs to mind, in a paraphrase of its last verse: I shall be telling this with a sigh somewhere ages and ages hence: two roads diverged in a yellow wood and she, she took the one less traveled by, and that has made all the difference

Please.

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Aphantasia?

We are a culture of categorists. Slotists. Namists. It is a society of Nomino, ergo sum. It’s as if we can sleep more securely knowing we have named and categorized everything we have seen that day –no matter how bizarre, no matter how unimportant. No matter, even, how mistaken the belief that by so doing, we have added something of substance to the world at large. I suppose what concerns me, though, is when to stop the naming? How finely do we divide the gradations before asking if we are really labelling something different?

And, does the act of naming something reify it –make it a real thing, in other words? Or does it merely select it from an otherwise amorphous background where it existed all along? Or, to identify yet another permutation, is it more like taking a shape, say, from a Rorschach ink blot and privileging one interpretation as gospel?

We are all different in many ways –some, interestingly so, others not as noticeably until pointed out by otherwise underemployed taxonomists. I accept this, but still question whether each variation from a norm is deserving of a separate name. Might we put ourselves in greater danger of muddying the water the more we stir it? Losing what we could previously identify in its depths? And for what? Are there really ‘more things in heaven and earth, Horatio, than are dreamt of in your philosophy? as Hamlet might have asked – More things requiring unique and quirky names?

So, what provoked this mini Jeremiad? Well, I suppose I am as much to blame as the taxonomists in my relentless search for novelty. As I poked and prodded my way through –what else?- the BBC News app, I came across an article on Aphantasia. http://www.bbc.com/news/health-34039054 At first, I wondered if it was a reminiscence about that Disney film which was set to classical music. I was about to scroll past it, but the ‘Ph’ spelling aroused my etymological curiosity.

It turns out that Aphantasia is a neologism that borrows from both Greek and Latin roots: a –meaning ‘without’, and phantasia –meaning ‘image’, or even ‘a making visible’. It refers to the inability to produce a voluntary mental image of something when it is not actually present. So remembering a mental picture of a face might be a problem for someone with aphantasia, although they would still be able to remember non-visible facts about the face –things that stood out, perhaps, like a large nose or a patch over an eye… Attributes, not images.

It may well be a spectrum of loss, however, as Professor Zeman, at the University of Exeter, points out in his study: ‘..the majority of participants described involuntary imagery. This could occur during wakefulness, usually in the form of ‘flashes’ (10/21) and/or during dreams.’ http://medicine.exeter.ac.uk/media/universityofexeter/medicalschool/research/neuroscience/docs/theeyesmind/Lives_without_imagery.pdf  I find this interesting; their capacity to form the internal visual memories is not lost apparently –more the ability to retrieve them at will.

But the very acknowledgement –and naming– of this edge of the normative Bell curve set the neuroscientists scurrying to find its other perimeter and they found it: hyperphantasia –perhaps more easily described as hyper-imagination. I have less faith in this category as a distinct entity, though –I would suspect it wanders terribly close to the edge of more classically defined psychopathology, as in the outer border of bipolar disease, for example, or the imaginative excesses often found in schizophrenia.

So, what has this study purported to identify? Boundaries. After all, up to a certain point, we classify difference as merely a variation from the mean –a quirk of behaviour. A nuance, not an epiphany. And yet boundaries are slippery and once determined, are heavily scented with unintended consequences. As the BBC article pointed out, ‘One person who took part in a study into aphantasia said he had started to feel “isolated” and “alone” after discovering that other people could see images in their heads.’ After all, a boundary had obviously not existed until it had been defined, and then, sadly, the person found that he was on the wrong side of it. What is normal and unremarkable to one, is alien, or at least unexpected for another.

But all of us are on one side or another of some line, aren’t we? Our very uniqueness requires it. It is something to celebrate, something to admire. And yet, not to appear unduly Cassandroid, there are dangers in names –in difference– unless Society learns to honour the mosaic. Cherish it for the montage it weaves into our cultural fabric. Accept the ever changing clothes despite any unwanted flesh it may expose.

I may sound like I’m against the free and unexpurgated pursuit of scientific curiosity -I’m not. Against the inductive method of interrogating nature -again, I’m not. Nor am I content to drift with the tide, happy to land wherever wind and water direct. But curiosity is a watchful cat that lurks in our shadows with hungry eyes and eager claws. It needs to be fed and nurtured constantly, but sometimes carefully. Respectfully.

Risk Perception

Risk is something we all need to assess from time to time. The problem lies in how we do it. If there are factors we fail to take into account that affect our risk perception then our evaluation may as likely be wildly unrealistic, as appropriate. Emotion tends to skew things in one direction or other, as does as the degree of perceived asymmetry between the benefits and dangers –if we really desire or enjoy something, we might be less risk averse than if we were not keen on it in the first place. The status or acceptance acquired from smoking for a teenager, say, might counterbalance the long-term dangers; it might not be seen that way by an older, more confident adult. And immediately experienced risk –driving a car with faulty brakes- may be more influential than future risk such as lifestyle changes for cardiac disease prevention. And then, of course, there are cognitive biases –our own subjective mythologies, expectations and intuitions- not to mention cultural biases, all contributing to the overall assessment of the acceptability or not of the risk.

But I suspect that a major obstacle in risk perception lies in its probabilistic nature. People have enough difficulty in understanding the simple Bell Curve distribution of likelihood let alone the mathematical Baye’s theorem which ‘describes the probability of an event based on conditions that might be related to the event.’ Our estimates are more intuitively driven than statistically. Understandable, to be sure, but unreliable in most appraisals. Misleading. Dangerous, even.

It’s hard to grasp the concept that even doubling a risk when it is almost imperceptably low already, still leaves it almost imperceptable. So, at what stage does it become unacceptable, if it wasn’t really perceived to be that in the first place? Is any risk acceptable if we know about it, no matter how small and unlikely? What about the background risks that are inherent in most things –be they visible and published or not? Riding a bicycle, for example, or running on a treadmill, walking to work… At what point do we merely turn off and get on with life?

The problem is certainly manifest in Medicine. Most of us invest health –especially our own- with an appropriately significant amount of concern. But it is more of an emotional than intellectual process, and we tend to interpret the concept ‘improbable’ as the much more personal ‘but possible’. Shadows, despite their insubstantiality, hide ‘what-ifs’ –or worse still, unrealistic fears that favourable probability cannot disguise.

Martha was one of those. I would never have guessed it to look at her, though. She sat relaxed and confident in the waiting room, surveying her adopted realm like a tall queen. Crowned with long brown hair, the curls danced from her shoulders as she stooped to pick up a child’s toy, then returned it to him with a smile that would have melted an older stranger. Fifty-ish and surprisingly thin, she was dressed in loose, faded jeans, orange sneakers and a light blue designer tee shirt that said ‘Dare Me, eh?’ She was in control of all she surveyed: monarch of the room.

She stood when she saw me approaching and extended her hand before I was half way across the floor. “I’m so glad to meet you, doctor,” she said loud enough for all to hear, and squeezed my hand like she was doing an exercise in the gym. A full head taller than me, I had to look up to see her face. For a moment, I felt like that little boy whose toy she had rescued, and as I led her back down the corridor to my office I had the distinct impression that, despite her being behind me, nonetheless it was me being taken for a walk like a small dog on a leash.

She sat down on the chair opposite my desk and waited for me to settle into mine before starting the interview. That’s how it felt: she was interviewing me like a reporter hot on a story.

“I’m here,” she said without the usual preliminary pleasantries, “because of a disagreement with my family doctor…” She left her thought unfinished so she could study my face for its reaction, and when she saw nothing but curiosity written on it, continued. “She seemed to feel that my worries about hormone replacement therapies were unfounded.”

She immediately folded her arms across her chest to -as her tee shirt invited me to do- dare her to defend herself. I wondered if she’d chosen it specifically for the visit. I smiled to diffuse her arms, but her body had hardened into place; everything remained on guard, and her eyes perched on her face like a pair of eagles watching me from their aerie in a tree.

I thought I’d keep it simple. Basic. “She felt you needed hormones?” A regal, no-nonsense nod. “And why was that?”

“Hot flushes.”

I duly typed this on my laptop, although I sensed it might be only the tip of a rather unpredictable iceburg. So I waited.

I could sense she was testing me, and the eagles shifted impatiently on their branches. “I don’t need hormones, doctor. I was just going in for my pap smear and she asked me about hot flushes.” A smile passed across her face like a shadow crossing a stage. “I think she just wanted to compare notes with me…”

I tried to concentrate on her mouth, her eyebrows, hair –anything but those unnerving eyes that seemed constantly on the verge of attack. “So you’re not bothered by them?”

She shrugged, but if I hadn’t been staring at her, I might have missed it. I sat back in my chair, wondering where the thread-bare conversation was taking us.

She could see my confusion, although I had tried to hide it behind an Oslerian mask of Aequanamitas. I sometimes find it doesn’t quite cover everything, no matter how I wear it. “Look, she’s a nice woman and I think she was just trying to be kind.” She hooded the eagles and looked over my shoulder at something for a moment. “It was a girl thing, I suspect –you know, an attempt at empathy, wearing my shoes, or something.” One of my eyebrows started to move before I could rein it in and she noticed it and grinned sheepishly. “After I left her office, it dawned on me that she’s probably on hormones herself. An example of the play within the play of Hamlet: The lady doth protest too much, methinks.”

Martha was obviously not your average patient –she even put the ‘methinks’ at the end, where its supposed to be. I was impressed. “You think she was trying to convince herself that hormones were safe?” Might as well cut right to the chase.

She nodded. “I made the mistake of arguing with her and it rolled downhill from there. I shouldn’t have been so righteous, but from my reading, I felt she was mistaken.”

I could tell being a referee in a contest where one party has done extensive research on the subject, and the other was speaking to the contrary out of vested interests would not be easy. Martha had probably read more Shakespeare than me as well. I approached the issue carefully. “What did you find troubling about her opinion?”

She smiled; her trap was laid. “Well,” she started equally carefully, “for a start, the risk of phlebitis is increased by about three hundred per cent on hormone replacement therapy…”

I inclined my head slightly –it was meant to acknowledge the number, but not succumb to it. “Well, in fact the exact incidence of DVT” –I used the acronym for deep vein thrombophlebitis, to show her I had some trifling knowledge of the subject- “is unknown because of the inaccuracy of clinical diagnosis, but if you want to look at another way, its incidence is up to six hundred per cent higher in the first year of use…”

Her smile broadened –she’d been validated. She had been right to worry.

“But,” I added when her smile looked as if it was going to split her face in two, “Six hundred per cent of what?” I let it sink in; I didn’t expect an answer.

“Well, six hundred per cent higher than in non-users…” Her eyes were hunters again –hawks this time, I think. The tone of her voice said that it was obvious. “Six hundred per cent higher, doctor! Six hundred…”

I briefly flirted with some sort of aerial fight, our eyes meeting each other somewhere over the desk in a dominance combat . But I’m not like that. “So, six hundred per cent higher than in non-users in the first year? Otherwise, -what did you quote, three hundred per cent higher?- after the first year of use, I guess you mean?” She nodded impatiently, as if she was being patronized. “And the rate in non-users?”

This time I did expect and answer… Or did I? Three times anything seems like an awful lot more. And six times…? She shrugged as if it were not that important. The relative increase was what mattered. “Well, given that I said that the exact incidence was hard to determine, the figure in many studies has been estimated at around 80 cases…” -I stretched it out for effect- “ 80 cases per 100,000 people. Give or take.” I paused for a moment again. “So, even six times that is –what?- 480 people per one hundred thousand. That’s…uhmm… 0.48 cases per hundred people per year?” It sounded about right… But I have trouble with decimals sometimes.

“Whether I’ve got the numbers exactly right is not the issue, really. The point is more that six times very little, is still very little.”

I could see her mulling it over in her head; doubt lingered on her face, but at least she’d put the hawks away for the day. “An interesting way of looking at it, I have to say… but certainly not intuitive at all, is it?”

I allowed myself a smile that I hoped was non patronizing. “Probability –statistics- is not very intuitive.” Her face stayed neutral. “If I told you I had a way of increasing your chances of winning the lottery by 100% would you be interested?” She nodded, as I knew she would. “It’s simple, really…” She rolled her eyes –no eagles there anymore. “Just buy two tickets.”

She sat back, but I couldn’t tell from her expression whether or not I’d convinced her –or even held her interest. “So tell me, doctor, if I were your sister, would you suggest I go on hormone replacement?”

I sighed; she’d asked for honesty, not medical rhetoric. I locked eyes with her. “If you were my sister?” She nodded –earnestly, I think. “No.”

She seemed surprised after my attempt at explaining probability and risk. “Why not?”

“You’d argue with me every time we met…”

To Have, or not to Have

There are two worlds out there, two Magisteria. Two contrasting inclinations that pass each other on the street without a wave. Strangers who sometimes know each other well. They sit, unwittingly close to each other, in the waiting room of my office. They chat and smile obligingly, trusting that their ignorance of the other is no impediment to friendship, however brief. Indeed, there is no barrier, only a perspectival boundary: Weltanschauung.

And yet, I don’t want to make too much of the difference; it is often in flux, and can mutate even as we watch –Time has a way of adjusting viewpoints,  justifying decisions. We all try to vindicate ourselves in the end. Validation requires exculpation, does it not? Absolution in the eyes of those who matter…

So the stronger the tradition, the societal apologue, the more the justification and guilt assigned to those who stray from it. There is a sort of canniness in the collective –or at least strength. Acceptance… And it is easier to regress to the mean, than defy the group. Especially when it comes to attitudes towards pregnancy –or more specifically, the decision whether or not to have a baby.

I’ve just read an incredibly powerful  book, whose title captures some of the agony and guilt attending those who dare to deviate from societal expectations: Selfish, Shallow, and Self-Absorbed. It is a collection of 16 well-written and generally thoughtful essays -13 from women, and 3 from men- about choosing not to have children. None are from paedophobes; and only a few are from those who decry the notion of pregnancy in others. They are not outliers –except perhaps on a carefully constructed Bell Curve- nor could they be construed as deviant. Each has merely made a personal decision not to accept the tyranny of the Norm.

The essays took me back to the early days of my practice, when, as a newly minted obstetrician, the very idea that someone would not want to have a child at some stage in her life, was anathema… Well, perhaps curious would describe it better –memorable, at any rate. And yet, it was not unknown. It was always a difficult decision in those faraway times to accede to a request for sterilization in a young woman. Contraception, yes, and although this closed the door effectively, it did not lock it. We were suffocatingly parental in those days: we knew she might change her mind –she was young and inexperienced, after all. Like a child, she had to be protected; it was our responsibility to keep her future mutable and open. We –society- were the guardians of that door…

But there are surely two issues at play here. It is one thing to criticize a decision made prematurely –before the kaleidoscope of life has fully displayed, when the future is more chiaroscuroid, more obscure and uncertain- and another developed in that fullness of time when a considered, even retrospective analysis of the factors leading to the choice can bear fruit.

This, too, can seem arbitrary, I realize. Is there a difference between a thoughtful twenty-five year old woman who -in her mind at any rate- has weighed the risks and benefits of having a baby and decided against it, and a forty-five year old who, on looking back at the way her life has unfolded, is grateful and reconciled to never having a child? It is a vexing question on several levels, I think.

In these days of autonomy and non-maleficence when it is considered medically paternalistic and politically incorrect to suggest that a decision need not be vetted by experience, we forget the other ethical duty of a health care provider at our –her- peril: beneficence –serving the best interests of the patient. It seems to me that this entails both a mature and non-directive dialogue and a list of other, more malleable options that would not only adequately serve her needs, but would also allow for change at any stage. Some form of reliable and non-intrusive contraception, for example, might respect her desire to avoid pregnancy, and yet enable some flexibility should she change her mind, or harden her decision for a permanent solution.

But I have to confess that I am still troubled. On the one hand, it seems to me that wisdom is the ability to judge a situation based both on knowledge of what it entails, as well as experience of how it usually turned out in the past. It is why elders were revered in the days before the plethora of information technology that assails us today. I am trying not to be Ludditic here but what the elders contributed, that Google often does not, is digestion. Analysis over time and place. Evaluation. Information can be coloured by current trends and bent by traditional assumptions –but of course so can needs. We must not forget that.

I have always been leery of ‘facts’ divorced from context. Are they then still facts or do they inhabit some terra incognita we have yet to fully occupy? A territory of collation, a thesaurus that is able to list endless variations on whatever theme we decide applies to us, so we can pick and choose the reality we prefer?

It is not the decision to have, or not to have a child that should preoccupy us, but rather the reason it has been chosen. And for such an important life-changing resolution, the depth and –dare I say- maturity of  thought that has gone into the consideration is paramount. It is not, nor should be allowed to fall under, the purview of political correctness and thereby escape a more cautious and examined approach. There is no correct answer, no unquestionable myth that can justify any position. We may have a spur to prick the sides of our intent, to paraphrase Hamlet, but it is a different one for each of us. We must take care that we, and those we counsel, are not –Hamlet again- hoisted with our own petards.