A Plague on Both Your Houses

The plague –nothing conjures up death quite like that word -after all, the bubonic plague wiped out half of Europe in the 14th century. But there have been others of its ilk –and all probably caused by the Yersinia pestis bacterium. Although the yet-unnamed infectious agent was identified in the 1890ies by the bacteriologist Alexandre Yersin -working at the time in the Pasteur Institute on plague samples from an outbreak in Hong Kong- the name was initially misattributed… Never work for somebody really famous when you discover something important. Personally, I preferred its previous name of Pasteurella pestis because that’s the name I was first taught and I liked the alliteration. But never mind.

The plague has three different presentations, depending upon the organs infected: bubonic plague, from infection of the lymphatic system and localized as buboes (swellings of infected lymph nodes which may become necrotic and turn black in their attempt to defend the body); pneumonic plague –infection of the lungs, presumably from aerosolized droplets from coughing or the like; and the rarest and likely most fatal of the three, septicaemic plague, which is an infection of the blood stream. All are carried by fleas, which are carried by rats, which then carry them to us.

Although we tend to associate the word ‘plague’ with the infamous ‘Black Death’ of European fame -not least because of the shock value of its name, I suspect- there have been several plagues throughout history. The first was originally thought to have been as early as 430 BCE in Athens, but a study published in the journal Cell in 2015 suggests that it began long before that –about 5,353 years before, actually. But perhaps a more assimilable article that outlines the background is found in a BBC news report, also in 2015: http://www.bbc.com/news/health-34603116

‘Samples taken from the teeth of seven bodies contained traces of the bacterial infection in the Bronze Age. They also showed it had, at the time, been unable to cause the bubonic form of plague or spread through fleas – abilities it evolved later.’ You have to love this kind of information, eh?

‘In its early days, it could cause only septicaemic or pneumonic plague – which is nearly always deadly and would have been passed on by coughing. By analysing the bacterium’s genetic code through history, the researchers estimate it took until 1000 BC for plague to evolve into its more familiar form. One mutation – acquiring the ymt gene – allowed the bacterium to survive inside the hostile environment of a flea’s gut. […]Developing a separate gene, called pla, allowed the infection to penetrate different tissues and cause bubonic plague.’

But all things change, don’t they? Things fall apart; the centre cannot hold, in the unforgettable words of Yeats. And yet why would a pathogen evolve to destroy the very hosts on which it depends? Why burn the hotel…?

I suppose an easy explanation might be that of a game in which each side –host/pathogen- continually attempts to outsmart the other. More virulence in the invader leads to more defensive mechanisms in the invaded –things as overt as quarantine or antibiotics, to the more subtle, but hopefully preventative development of immune resources by vaccination or over the longer term, adaptation of endogenous immune defenses: survival of the fittest.

But for me, the intriguingly unanswered question still remains: why kill your host? Why not coexist as, say, a parasite –or even a commensal- in the gut, or create a chronic condition that might weaken the owners, but not eliminate them? Of course, some pathogens are just evolutionary dead-ends – fireworks that illuminate the sky briefly and then disappear as suddenly as they appeared, or maybe finally settle into a desk-job and plod along just under the radar. But I suppose even germs want some time on the pedestal, though. Nothing ventured, nothing gained… Ecological opportunities beg for exploitation –leave a window unlocked, and something will find it.

Of course there are other ways of making a living: attack and retreat to fight again… While not strictly analogous, I am reminded of the Champawat tiger of Nepal (and later in the Kumaon district of India) in the late 19th century. She used to attack suddenly and then disappear before anybody could do anything about her. True, she was finally shot, but not before she’d managed to kill almost 450 people in different locations and instilled fear of her return for years. Fear is like that –especially fear of what Donald Rumsfeld (a once upon a time U.S. secretary of Defence, remember?) oxymoronically called the ‘known unknowns’.

The plague has managed a similar trick over the centuries, flaring up in one region, only to hide, then reappear in a totally different region later –often much later. ‘The most recent plague epidemics have been reported in India during the first half of the 20th century, and in Vietnam during wartime in the 1960s and 1970s. Plague is now commonly found in sub-Saharan Africa and Madagascar, areas which now account for over 95% of reported cases (Stenseth, 2008)’ [https://www.cdc.gov/plague/history/index.html]

But, even those of us living in North America are not entirely safe -remember that Hong Kong plague that Yersin was studying in the 1890ies? A ship from there arrived in San Francisco in the summer of 1899 with plague found among some stowaways, two of whom escaped and drowned in the Bay. An epidemic of plague hit San Francisco nine months later. Whether it was from them or from rats that swam ashore, is not known, but the disease has been with us ever since.

http://www.livescience.com/51792-plague-united-states.html  ‘Plague cases occur sporadically in the United States — between 1970 and 2012, an average of seven plague cases occurred yearly […] But plague cases don’t show up everywhere. Rather, most occur in rural areas in western states […] the CDC says. One reason why cases of plague are restricted to the West is that the rodent populations there carry the disease […] “Prairie dogs are one of the major rodent species that serves as a reservoir for plague, and they tend to be west of the 100th meridian” in the United States. For this reason, this line of longitude is sometimes referred to as the “plague line”.’

What, will the line stretch out to th’ crack of doom? asks Macbeth. I suspect that he would have found it fascinating that any of us would think we might be immune from history. And yet, despite all its bad press and the terrifying epithet of ‘Black Death’, plague cases in North America are rare. They can occur when people visit rural areas, says, Dr. Adalja, an infectious disease specialist at the University of Pittsburgh’s Center for Health Security, although ‘people are more likely to be infected with tick-borne illnesses such as Lyme disease, than plague.’

Uhmm, I’d be careful with squirrels in California, though…

 

 

 

 

 

 

 

 

Peekaboo

Seeing is believing, my mother used to say when she saw I hadn’t finished the spinach on my plate despite my protestations to the contrary. But what if the belief were to persist in the absence of visual corroboration? Suppose I simply closed my eyes and pointed at the plate? My mother, no solipsist, would merely laugh and tell me it would still be there if I ever chose to open my eyes again. I could never win at that –her open eyes trumped my temporarily closed ones every time. I tried that ruse so many times, I got so I could actually see the spinach and the plate even with my eyes firmly clamped shut.

Perhaps I was a slow child, but it did make me wonder about what seeing actually meant. Was it something that could continue even when I tried to turn it off? In the bedroom at night when the blinds were drawn and the room was black, I could still navigate fairly well -and if I did bump into something, I could usually sense it just before the collision.

People talked about noticing things out of the corners of their eyes –meaning when they weren’t looking at them, I guess- and when I grew older, I learned about the sensitivities and image resolution of different cells in the retina. The cone cells in the macula –which you use when you are actually looking at something- were good for colour discrimination and fine resolution, whereas the rod cells, peripheral to that, were more sensitive to light, but not at resolution.

That weird sensation of thinking someone is looking at you, I assumed, was something detected in that peripheral part of the retina by the rod cells –noticed, but not readily identified, and maybe, therefore, not consciously processed until you turned to focus your cones cells on it. It made sense, but every so often I am thrilled to find others who continue to be intrigued by the process: http://www.bbc.com/future/story/20170512-what-causes-that-feeling-of-being-watched

I had assumed that it was fairly straightforward –light hits the retinal cells in the eyes, the signal travels to the visual cortex in the brain, and then it makes us conscious of what the signal means. But, of course, it’s not quite as simple as that. ‘Once information leaves our eyes it travels to at least 10 distinct brain areas, each with their own specialised functions. […] The visual cortex supports our conscious vision, processing colour and fine detail to help produce the rich impression of the world we enjoy. But other parts of our brain are also processing different pieces of information, and these can be working away even when we don’t – or can’t – consciously perceive something.’

So what would happen if your visual cortex were destroyed by a stroke or trauma of some sort? You’d lose your conscious vision –your cortical vision… but ‘cortically blind is only mostly blind – the non-cortical visual areas can still operate. Although you can’t have the subjective impression of seeing anything without a visual cortex, you can respond to things captured by your eyes that are processed by these other brain areas’ –Blindsight, as a researcher name Larry Weiskrantz called it.

The BBC article reported on a study of a man with just such a condition. They were able to do a functional MRI to watch his brain while faces were presented to his ‘blind’ eyes. ‘The scanning results showed that our brains can be sensitive to what our conscious awareness isn’t. An area called the amygdala, thought to be responsible for processing emotions and information about faces, was more active when TD [the patient] was looking at the faces with direct, rather than averted, gaze. When TD was being watched, his amygdala responded, even though he didn’t know it.’

Exciting stuff. ‘[…]research like this shows that certain functions are simpler and maybe more fundamental to survival, and exist separately from our conscious visual awareness. Specifically, this study showed that we can detect that people are looking at us within our field of view – perhaps in the corner of our eye – even if we haven’t consciously noticed. It shows the brain basis for that subtle feeling that tells us we are being watched.’

The article reminded me of something that happened long ago in my gynaecology practice. At the time it seemed a rather trivial incident, but I suppose the fact that I can even remember it suggests that I found it intriguing nevertheless.

Prisha –I think that was her name- was a young woman whose baby I had delivered, a few years before. She returned every two or three years for her pap smear but I remember being surprised to see her again only a few months after her last visit. A tall, beautiful woman with what seemed to me to be an exquisite taste in saris, it was hard not to notice her in the waiting room whenever she visited. Long black hair that never managed to hide the large gold earrings, and the red bindi in the middle of her forehead marked her as an immediate attraction for whatever children happened to be playing on the carpet with their toys.

That day, however, their attention seemed to be focused on an older lady sitting beside her like a queen. Regal in bearing and bolt upright in posture, she was wearing a dark blue sari with gold trim, and as I recall her snow white hair was tucked away under a lighter blue scarf. I suppose what drew my attention to it was that she sat beside her daughter with her eyes closed even when she talked. A tow-headed little boy with large, blue, curious eyes was standing a few feet away staring at her. He would have been too young to have been Prisha’s son, so I assumed he was just fascinated, as I always was with the saris that Prisha wore. But it was more the older lady that had captured his eyes. As soon as I walked across the room to greet them, the little boy ran back to his mother who was sitting beside the window, but he continued to watch from the corner.

I was welcomed by a big smile as I approached Prisha. “I’m so happy to see you again, doctor,” she said, “but this time it’s my mother, Lakshmi, who needs your help.”

Her mother pursed her lips, but didn’t extend her hand to shake mine as I had expected. Her mouth drooped slightly on one side, but a smile broke through nonetheless.

“She is blind,” Prisha explained, “So I have come to help her, if that is alright with you. She only speaks Hindi, though, so I will also need to translate…”

As Prisha took her mother’s arm and helped her down the corridor to my office, I noticed a distinct limp and obvious weakness on one side.

“Mother had a stroke and lost her vision,” Prisha explained, when we were in the office. She’d settled her mother in a chair beside my desk and pulled another beside it for herself. The two talked for a moment while her mother fussed in her seat. “She says she is very nervous about consulting a man, doctor, but I have just reassured her that I trust you.” She smiled at her mother. “She can see nothing at all now, and with the continuing bit of paralysis, I think she feels particularly vulnerable.”

They chatted to each other in Hindi for a moment, when suddenly her mother’s face changed and I could see her tightening her grip on Prisha’s arm.

“Is there something bothering your mother?” I asked, wondering if perhaps she’d changed her mind about being examined by a man.

Prisha immediately smiled, but I could sense her tension. “She says someone is staring at her…”

I blushed and looked down at the surface of my desk. “I’m sorry, I didn’t mean…”

Prisha shook her head. “No, it’s not you, she says.”

“But…” I was confused. “Didn’t you say she couldn’t see anything?”

Prisha smiled, embarrassed. “Nothing at all. The neurologist says she’s completely blind… But she says she can sometimes feel things,” she continued and then shrugged.

Lakshmi seemed to be staring at the office door –if ‘staring’ is the right word, so I glanced over at it. The door wasn’t completely closed, and through what little space remained I could see a pair of large blue curious eyes examining us like a visitor in the zoo. And then, realizing they were noticed, they disappeared, and the pounding of little feet echoed down the corridor.

Lakshmi’s face relaxed and she said something to her daughter.

“It’s okay now, doctor,” she said, looking at her mother with a bemused expression. “She says the eyes are gone…”

There are more things in heaven and earth, Horatio… Blindsight? I don’t know, but whatever it was, I think I was privy to something special that day so long ago.

 

 

 

 

 

 

 

She wears her faith but as the fashion of her phone.

Everything is a matter of time, isn’t it? Everything changes. Like the apocryphal monkeys typing away infinitely, everything will be written. Everything will be transmogrified somewhere. Some time. Somehow. I suppose that should be a comfort, but I can’t escape the nagging feeling that there is something unrequited in all that: an imbalance between now and then -no bridge to mediate between what is, and what some nebulous future may unfurl for our children’s children.

And yet, an article I found offers some hope that I might have missed the entr’acte, missed a vital link in the ever lengthening chain of progress –or at least underestimated its importance. I’m talking about the smartphone. I grow old… I grow old… I shall wear the bottoms of my trousers rolled, as T.S. Eliot wrote –that, at least, may be a suitable mea culpa for my inattentiveness, perhaps.

I should have seen that with all of the changes occasioned by the phone, other subtle philosophical alterations might well hide within its shadow. ‘He wears his faith but as the fashion of his hat; it ever changes with the next block’, as Beatrice says in Shakespeare’s Much Ado About Nothing. Who would have thought that religion itself might live the same fate? http://www.bbc.com/future/story/20170222-how-smartphones-and-social-media-are-changing-religion The mobile phone Bible seems to be replacing the book Bible –at least with many of the younger religious crowd. And the result may have been a loss of context –no thumbing through the pages looking for something, just an arrival at whatever nugget was requested –like looking it up in Wikipedia. In other words, an information Christianity, a virtual religion. ‘“A new kind of mutated Christianity for a digital age is appearing,” says Phillips [director of the Codec Research Centre for Digital Theology at Durham University in the UK]. “One that follows many of the ethics of the secular world.” Known as moralistic therapeutic deism, this form of belief is focused more on the charitable and moral side of the Bible – the underlying tenets of religion, rather than the notion that the Universe was created by an all-seeing, all-powerful leader.’

Although I hold neither religious affiliation, nor any particular interest in the Bible, I have to say I am intrigued by the philosophical machinations the smartphone seems to be engendering –the moralistic therapeutic deism, as it is increasingly being referred to. The results of interviews with three thousand teenagers were summarized in (sorry) Wikipedia, and seem to establish the tenets of this theism. First of all, ‘A god exists who created and ordered the world and watches over human life on earth.’ And ‘God wants people to be good, nice, and fair to each other, as taught in the Bible and by most world religions. The central goal of life is to be happy and to feel good about oneself.’ But what I found particularly interesting was the idea that ‘God does not need to be particularly involved in one’s life except when God is needed to resolve a problem.’

And why do I find this  so-called ‘moralistic therapeutic deism’ so interesting? It seems to me it may be the early phases of an evolution of religious thought engendered by the way we are beginning to assimilate information. Or perhaps I should say they are –the millennials. I suspect that we elders –or should I say just ‘olders’- still adhere to the belief that data does not necessarily spell knowledge.

But, as the article points out, ‘[…]a separate strand of Christian practice is booming, buoyed by the spread of social media and the decentralisation of religious activity. For many, it’s no longer necessary to set foot in a church. In the US, one in five people who identify as Catholics and one in four Protestants seldom or never attend organised services, according to a survey conducted by the Pew Research Centre. Apps and social media accounts tweeting out Bible verses allow a private expression of faith that takes place between a person and their phone screen. And the ability to pick and choose means they can avoid doctrine that does not appeal. A lot of people who consider themselves to be active Christians may not strictly even believe in God or Jesus or the acts described in the Bible.’

I doubt that this phenomenon is exclusive to Christianity, either. Any religious doctrine which has a credo that can be digitized, is susceptible -nuggetable into bite-sized digestible portions. Wikipediable.

I think that is what two girls were talking about at the bus stop a few days ago. Both wearing delightfully colourful hijabs, they were huddled around their smartphones giggling.

“Where did you find that?” the taller of the two said shaking her head. She was dressed just like any other teenager –running shoes, jeans, and a bright orange leather jacket- but a dark blue hijab seemed almost tossed onto her head and barely draped over her shoulders. Perhaps it was the wind, but the almost-studied disarray was charming.

The other girl, stouter and wearing a long black coat, also sported a red, hijab-like scarf that barely covered half her head despite her constant readjustments. “It’s Al-Quran [an app, I later discovered],” she answered as if that should have been obvious.

The taller girl tapped on her screen for a moment and then nodded her head. “But, you know that’s not what Abbad said…”

The other girl just shrugged. “He always thinks he knows everything, Lamiya.”

“Well…” I could see Lamiya sigh, even though I was trying not to watch them. “He usually gets it right, Nadirah… I mean, don’t you think…?”

I couldn’t help but smile when Nadirah rolled her eyes. “He only gets it right when you don’t know! If you don’t check on it…”

Lamiya seemed to pout. “I just, like, took his word for it…”

“You can’t do that blindly, Lami… Not anymore.” She made another attempt to readjust her hijab in the biting wind. “Not when you can look it up!” She shivered deeper into her coat and I could see her breath whenever the wind died down. “Things just aren’t what they used to be for our parents… We can actually, like, check,” she said as their bus pulled up and they got on, leaving me still informationless in the cold.

 

Sheep in Wolf Clothing

I suppose it has always happened -there’s very little that’s really new around; I still wonder why it’s necessary, though. Even through the lens of my white male privilege –my through-a-glass-darkly upbringing- I continue to wonder about these things. Why, for example, do I even have a lens? Was it necessary simply because in the chromosomal lottery, I got the Y? Or is it rather because others lack one? Others? There’s a difference, I guess: one side brings children -even the Y’s- into the world, and nourishes them until they are old enough to be independent; the other side… what, fears  that ability, despite experiencing it themselves? I’m sorry, I don’t understand. Call me naïve, but does that not make us interdependent? Partners in survival?

Anyway, despite my anguished jeremiad, and notwithstanding my somewhat childish credulity, I love it that people have always pressed against boundaries. Crossed borders. Transcended gender constraints. Limits which have been arbitrarily imposed have been challenges from time immemorial.

Until we searched, records of past successes were unfortunately few in number -hidden, or at least difficult to access- not necessarily because they failed, but more often I would suspect because history is written by the dominant. Controlled by those who commanded the prevailing power structure and had greater access to whatever educational resources were available at the time. Military and church, after all, were predominately unisexual, so it seemed rare to read about females that stood out for things other than pandering to male needs, or gaining fame as consorts to royalty.

A few exceptions proved the rule, of course. To pick only a few of my favourites of the many historical examples we were once offered: the fourth century Greek mathematician and philosopher, Hypatia; Lady Li, an artist in tenth century China; the twelfth century polymath Hildegard von Bingen. She was not only a Benedictine abbess, but also a philosopher, natural historian and writer -and she first came to my attention for her musical compositions; Fanny Mendelssohn, a composer and pianist, the talented sister of the more well-known Felix. And then there was the nineteenth century novelist Georges Sand, albeit perhaps more famous for her association with Chopin (and other famous men of the time) than her writings.

The list has recently become much, much longer -and growing- as we begin to delve into historical documents more thoroughly. It would seem that our knowledge of the past is directly proportional to the prevailing ethos –the effort expended… There have always been women who’ve excelled, but there have not always been people who wanted to hear about it…

I do, though; I’m always inspired by anyone who is able to critically assess that which represses them, and come up with a solution. I suppose most of the answers are variations on the same methodology, and yet they still make me want to cheer. An article I found in the BBC news was particularly heartening I think –especially its little twist: http://www.bbc.com/news/magazine-39705424

It’s the story of a woman in Tanzania who ran away from an abusive husband and ended up in the ‘small Tanzanian town of Mererani, in the foothills of Africa’s highest mountain, Kilimanjaro – the only place in the world where mining for a rare, violet-blue gemstone called tanzanite takes place.’

Only men were allowed in the mine so, like in a fairy story, she disguised herself as a man and went to work. She called herself ‘Uncle Hussein’. ‘”I acted like a gorilla,” she says, “I could fight, my language was bad, I could carry a big knife like a Maasai [warrior]. Nobody knew I was a woman because everything I was doing I was doing like a man.”’

And, just like in a real fairy story, ‘after about a year, she struck it rich, uncovering two massive clusters of tanzanite stones. With the money that she made she built new homes for her father, mother and twin sister, bought herself more tools, and began employing miners to work for her.’

But, as in all parables like this, ‘her cover was so convincing that it took an extraordinary set of circumstances for her true identity to finally be revealed. A local woman had reported that she’d been raped by some of the miners and Pili [Uncle Hussein’s real name] was arrested as a suspect.’

Of course, the truth was soon revealed and she was released. ‘But even after that her fellow miners found it hard to believe they had been duped for so long. […] Pili has built a successful career and today owns her own mining company with 70 employees. Three of her employees are women, but they work as cooks not as miners. Pili says that although there are more women in the mining industry than when she started out, even today very few actually work in the mines. “Some [women] wash the stones, some are brokers, some are cooking,” she says, “but they’re not going down in to the mines, it’s not easy to get women to do what I did.”

She has married again, although ‘Finding a husband when everyone is accustomed to regarding you as a man is not easy, Pili found, though eventually she succeeded. “The question in his mind was always, ‘Is she really a woman?'” she recalls. “It took five years for him to come closer to me.”’

‘Pili’s success has enabled her to pay for the education of more than 30 nieces, nephews and grandchildren. But despite this she says she wouldn’t encourage her own daughter to follow in her footsteps. “I’m proud of what I did – it has made me rich, but it was hard for me,” she says. “I want to make sure that my daughter goes to school, she gets an education and then she is able to run her life in a very different way, far away from what I experienced.”’

I love the kind of story of someone encountering and then overcoming seemingly overwhelming odds. I suppose we all do –it’s a classic fable, isn’t it? A veni, vidi, vici episode to be sure. But I am still saddened that it has to be like this. Not that there have to be challenges, you understand –it would be a boring world that offered none- nor even that only a few manage to see it as an opportunity, a fence that needs climbing. No, I’m sad that after all this time, whether out of fear or mistrust, there are still walls like this.

And yet, I remember lines from a poem by William Ernest Henley –‘Invictus’: ‘In the fell clutch of circumstance I have not winced nor cried aloud. Under the bludgeonings of chance my head is bloody, but unbowed’. And, more especially, the last stanza: ‘It matters not how strait the gate, how charged with punishments the scroll, I am the master of my fate, I am the captain of my soul.’

Let us all hope so…

 

 

 

 

 

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.

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 Temple of Clothes

I caught someone inspecting me the other day. Okay, it wasn’t an inspect exactly –it was more of a look… Well, maybe a glance, but it bothered me all the same. I could feel her eyes doing a quick little dance on me. They started on my mud-caked running shoes, before appraising the hem of my rumpled jeans where they had partaken of the same puddle. Then they scampered up over the tattered edge of my untucked sweatshirt before flitting around my face like barn-swallows looking for insects. I felt violated, even though it certainly wasn’t my first encounter with eyes.

Frankly, I hadn’t expected the examination on a trail. It’s true I am not at my best in the woods. I am an anticipatory dresser; my couture is seldom haute even on city streets, but when I have to be en garde for roots, wary of curiously moving bushes that extend onto the path, and on the lookout for riparian sinkholes, I like to move carefully and blend in. Not make myself more of a target than necessary. And looking shabby, and unostentatious is all part of it –I do not dress for passersby, although I often wave.

I heard them coming before I saw them –a little girl’s shrieks of delight as she ran along the trail ahead of her more cautious mother. The girl was tanned, perhaps six or seven years old, and dressed in jeans and a grey sweat shirt that seemed several sizes too large for her. Curly black hair that tumbled and bounced on her shoulders as she ran, the forest held no terrors for her.

Her mother, though, was wary, looking from one side to the other, and then at her child, uncertain just what to expect. She was wearing a dark-coloured cloak that partially covered her head, and was making her way slowly over some roots and stones on that part of the path when I first saw her.

It was the mother who noticed me first, and then grabbed her little daughter and sheltered her from my advance, lest I lunge at her. I suppose I should have admired her courage –I could have been a criminal for all she knew. Or maybe a fugitive bent on taking them hostage. I mean, you just can’t be sure with men in forests nowadays. Her eyes were lasers, bullets aimed squarely at my clothes, but she was in mother mode.

Her daughter, on the other hand, was in child mode. Curious mode. She whispered something to her mother, who instantly shook her head. “Stay away from him!” she must have said, because the little girl began to pout.

Finally, she broke free of her mother’s tether and walked a few paces towards me. We had all stopped to declare our territorial boundaries by then, and she knew precisely where to halt.

“You live here, mister?” she asked slowly, her expression flirting with wonder. I thought I could detect an accent, and suspected the girl might be encumbered by a beginner’s vocabulary.

I had to smile at the innocence of the question. I shook my head and lowered my eyes to disarm the mother who by now was hurrying to restrain her child before she got too close to me.

“Where you live?” the girl continued.

I shrugged. “In the city. How about you?”

The mother had caught up with her by then and I could hear the urgent whisper but the only word I recognized was a name: “Nattie!”

Nattie looked up at her with adult eyes, and shook herself free of her mother’s grasp once more.  She said something to her that I didn’t understand and then turned to face me again. I suppose I must have looked puzzled, because she then translated it for me. “’Why not speak?’ I say.” There was a big smile on her little face. “Can we be friend?” she added, glancing at her mother out of the corner of one eye.

I smiled and nodded, but her mother still looked worried –terrified, actually- so I decided not to move.

Nattie went into a sort of huddle with her mother and the two of them began to argue –or maybe it was just a discussion -I couldn’t tell. But eventually Nattie turned to face me, her eyes sparkling. “My  mother want your name…” And as she said this, her eyes sought refuge on the ground. “She say is important…” I could hear her mother say something again for Nattie to translate. “She is afraid for strangers, but I say her this is Canada, not Afghanistan.” She seemed pleased at being able to communicate so well.

“My name is Gary, Nattie,” I said, uncertain about whether or not to offer my hand to shake –especially under the still-suspicious stare of her mother.

But little Nattie came right up to me and extended her hand. “Nice to meet you Gary,” she said, as if she’d memorized the phrase for just such an occasion. Then her face puzzled up. “How you know my name?”

I smiled again to reassure them both. “I heard your mother say it, Nattie…”

She immediately turned to her mother and said something, and her mother laughed and waved at me. Nattie turned back to me with a little giggle. “I say you must speak little bit Pashto, Gary… She okay now.”

We all smiled and laughed, and I suddenly realized how similar we were -no matter how we dressed for the woods. There are no strangers on a trail.