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Psychology

The Punch of Numbers

Do you know that feeling when you are focused on a particular thing and all of sudden you have experiences that are either directly or vaguely related? You hope to get pregnant, (all those decades ago, for some of us,) and start to notice pregnant women everywhere, baby clothes stores popping up in unexpected locations, lullabies being broadcast on your classical radio station? I’m sure you can come up with multiple comparable examples.

Lately, I have been focused on numbers. Numbers people are asking those poor doctors, who struggle to paint a hopeful picture, which might or might not be misleading. Number of stages, of treatments available, number of side effects, number of years that signal a future, or not. Numbers that are given in averages, since that is what basic statistical evaluations will provide. Averages that some happily accept if they speak in their favor, or qualify with “each case is special” if they don’t. Averages that might rely on way too few data points, or be weakened by insufficient randomization. Averages that mean, honestly, nothing if they are not accompanied by information about variability, which patients won’t receive, or might not even know about and consider relevant, if they were not trained as scientists.

Wouldn’t you know it, some complex issues around numbers promptly popped up in my daily readings.

A fascinating discourse on what numbers are used – and which are left out – in the reporting on countries’ death rates from Covid-19, for example. Here I learned about how informations is given in absolute numbers, by news outlets all across the world, telling us how many people died in each country. Huge numbers, to be sure, unfathomably horrifying numbers, if you look, for example, at India. Has anybody noticed that the relative number, when counting numbers of the deceased in proportion to the size of any country’s population, (India has 1.392 billion inhabitants) spells out that pandemic loss of life in the United Kingdom was much higher than what is happening in India? Even if you account for bad data collection and multiply the official numbers given by the Indian government by a factor of four?

Then again, (and I am summarizing what I learned) the numbers that are not captured, either by design or by the difficulty of collecting them, could tell a more complete picture. How many people were sent back to their Indian home villages, dying of poverty-induced hunger or disease, or accidents in dangerous travel condition? What hit did an economy take that had not provided an even barely adequate health care system in a country that has no social safety net?

Closer to home, what numbers were or are suppressed in regard to heightened endangerment of susceptible populations? The elderly are still dying in great numbers in nursing homes, but no-one mentions them anymore after the first wave subsided. The poverty divide, etched along racial lines, is not often captured in the numbers presented in the general news media. (You can get to them by going to governmental/CDC website, which I strongly discourage, given the depressing nature of the data.)

What other numbers never enter the printed press or the evening news? Have you had daily updates on tuberculosis cases, even if every year it causes the death of around 1.7 million people? Or the 1.4 million people who die every year in car accidents?

Was it just that the pandemic was new, affording heightened attention? Or did publication of these numbers have to do with the need to keep populations sufficiently fearful so that they would passively accept heightened lockdown measures and other deprivations, sparing the government the economic and political cost of enacting them by force, police measures included?

Numbers as a form of indoctrination might make you shrug, or confirm your beliefs about statistics as the biggest lies of all. They do have consequences, though. If people who work one hour per week are taken out of the unemployment numbers because, they have, after all, worked!, it points a certain picture that might benefit governmental goals and policies. These, in turn, might hurt some populations and help others, depending what kind of government we elected.

The consequences can be deadly. Here is an example of the typical number problem in service of Nazi Eugenics presented to my parents and their age-mates in the late 1930s in every German middle school book.(Source here.)

“To keep a mentally ill person costs approximately 4 marks a day. There are 300,000 mentally ill people in care. How much do these people cost to keep in total? How many marriage loans of 1000 marks could be granted with this money?”

I do not have to spell out the pathway from these seeds of numerical indoctrination to the T-4 Euthanasia program of 1940, which murdered 200.000 disabled people in the next 5 years.

Given how much of a punch numbers can pull, it is truly important to figure out how they were collected, which were included and which ignored, who collected them, and what purpose they serve. Now I am stuck with the question how all the media seem so seamlessly clued in as to what is desirable to report and what not, even outside of state-sponsored broadcasting. A better preoccupation than worrying about medical numbers, I guess.

Here are fewthrown out by W.A.Mozart, some happy numbers (Figaro) , and some cruel ones…(Don Giovanni.)

Here is a short article on Mozart’s fascination with numbers, as well as that of other composers. In case you need to read something a little more cheerful.

Photographs today are of patterns that invite counting.

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Beauty in the Eye of the Beholder

I am generally not a fan of Charles Bukowski’s writings. A thought-provoking essay on the man, his life and his work, some years back in the New Yorker, pretty much summed it up for me: “Bukowski’s poetry,… is at once misanthropic and comradely, aggressively vulgar and clandestinely sensitive.”  The underground poet was born in 1920 in Germany and moved as a three-year old to Los Angeles where he died of leukemia in 1994. He has one of the largest following of readers in contemporary American poetry although he was never accepted into the official canon. He lived a rags-to-riches life, fueled by drugs, alcohol, and general defiance of societal restrictions, prison stints included. “The secret of Bukowski’s appeal: he combines the confessional poet’s promise of intimacy with the larger-than-life aplomb of a pulp-fiction hero.“

However, the poem I would like to introduce today is one I rather like: The Man with the Beautiful Eyes is from the poem collection, The Last Night on Earth. It raises questions that are important, and points to facts that are rarely openly discussed.

The poem is read in the short film clip below, the latter itself a work of art by Jonathan Hodgson and Johnny Hannah. They adopted the style of revered socialist-realist painter Ben Shahn, creating the film with paint, ink and collage rather than digital means and providing visual details that reinforce the ideas – both the direct expressions and the subtle implications – of the poem.

View it here – and then I’ll share my observations.

The poem introduces a group of young boys, told by their parents to stay away from a house with shuttered windows and a gold fish pond hidden behind a bamboo hedge. The film starts out with a view of a poster of a missing child – clearly there is danger in the world and kids do better to listen to their parents. Kids, of course, are drawn to the opposite of what they’re told to do: and so these boys regularly play in the forbidden territory, imbuing it with exotic ambience, Tarzan around the corner. No, they are Tarzan! Unrestrained rulers of the jungle!

One day, and only once, a man appears from the house, with foul mouthed, misogynistic swearing, a bottle of whiskey in hand, a cigar in his mouth, looking completely disheveled. Not only is he friendly, he addresses them in respectful, if mocking (?) terms “little gentlemen,” and hopes they enjoy playing in his run-down realm. They are in awe. They think him, his wildness, enticing. They adore everything they are forbidden to see much less to emulate. In their eyes, he is beautiful.

One day they find the house burnt to the ground, the fish dead in an empty pond, the bamboo scorched. They decide it must have been their parents who killed the man and all that was his. They fear that the future will replicate this assault on beauty, that they will never be allowed to hold it in whatever form.

The film accompanies the narration with images of a suburban father killing every weed threatening his lawn with poison. It ends depicting a storefront with a sign Chinaski‘s – the name for Bukowski’s alter ego in his writings – and a homeless man either dead or sleeping in a dark alley next to the store, people indifferently rushing by.

Do we believe the parents capable of such a crime? They surely didn’t kill a man and left but smoldering foundations? Or did they? Do parents have a right to be afraid for their kids in a dangerous world? Of course they do. Do kids intuit, even if it doesn’t reach the level of an actual crime, that parents want to kill off the other, even if the threat is not directed at their kids, but at the parents’ own well-being? To extinguish all forms of wildness that threatens to throw your own tightly held, and dearly paid-for conformity out of balance?

One of the ways that the beauty of something unruly, unruled, will indeed be taken from you is by making sure that you never trust your own perceptions. Kids intuit what is going on, but are told they are mistaken. Kids, of course, can misinterpret what is in front of their eyes, but their gut interpretation often points to a deeper truth. They, too, must conform and obey the rules (“It is for your own good!”) in preparation for their social acceptance, and if that means to discard subjective assessment of what could be beautiful, so be it.

Deviance, it is taught, is bad, might get you ultimately killed. If you violate established cultural, contextual or social norms, never mind legal ones, there will be consequences. There is not a single culture that does not have negative connotations regarding deviance (although what counts as deviance is malleable, across cultures, or across time within a single culture.) Social control ropes deviants in, maintaining social order with a system of rewards and punishments, some formal, many informal. Children don’t want to be forced into the straight jacket of societal norms, they still crave freedom, but it is a losing battle. Those, like the man with the beautiful eyes, who have not given up on a similar desire, must be wildly strong, but they will also pay a price (if only an accidental house fire caused in a drunken stupor, or the revenge of an abused and mistreated lover, that costs him a roof over his head.)

Rarely mentioned is the fact that deviance can also be positive. It has been a motor for social change through the ages, from behaviors questioning gender hierarchies (think Suffragettes, women’s liberation) to racial injustice (think norm refusals during the civil rights movement, Rosa Parks) to the fight for LGTBQ rights or the protests around fossil fuel extraction. In fact there is a whole area of study in health psychology these days, centered on Positive Deviance, on how to employ it to produce positive change.

Bukowski might have pleaded for acceptance of a self-destructive life style, not exactly an example of constructive change to society’s norms. But the larger truth, that deviance can contain beauty and is a threat to imperative conformity, was clearly understood by the kids in the poem, and feared by their parents. It’s all in the eye of the beholder.

Music has had its own encounters with the label “deviance.”  Norm promotion has led to labeling certain composers or styles of music as negatively deviant, not worthy of being considered the future of music, a threat to culture, to religion, politically unacceptable, or evil. This has, of course been particularly true if the music was associated with other categories that threatened the status quo, race being among the strongest. The Blues comes to mind. Here are some favorites.

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Narrative grab

Yesterday’s NYT had an opinion piece on aliens – you know, the extraterrestrials who are rumored to exist, evidence of whom is alleged to have been carefully hidden by US State agencies. It is actually a thoughtful piece that offers a Gedanken experiment as to what would happen if we would indeed find some alien flight object crashed onto Oregon soil. What would the consequences be for the world, how would we react, as individuals, as a nation, as part of humanity at large? Would it unite or divide us?

A particular aspect that struck me was the discussion of not a land- but a narrative grab, a competition for interpretation that would have enormous consequences in allocating resources (let’s arm ourselves even beyond our teeth vs. let’s fund science to explore space and find these visitors,) or influence reactions (this is ours! No-one allowed to look at it! vs. let’s share among nations, since all of humanity is at stake.)

We don’t have to look to the extraterrestrial universe – the reality of narrative grabs is all around us and astoundingly dangerous. Whether we are talking about the Big Lie about a stolen election, or the conspiracies peddled by anti-vaxxers, or the testimony given during trials of police shootings, or the current tragedy unfolding in the Middle East – narratives are developed and disseminated to peddle influence, justify actions, distort the real picture, gain attention and adherents, shape tales of heroes, villains and victims.

This is particularly true if a conflict has hardened. It is also true if the narrative can no longer be controlled by those who were used to control it. If people can videotape events, if police have their own camcorders recording, the narrative from the reports can be offset by the visually documented history. To control the damage to those who used to call the shots, it becomes imperative to stop disseminating these sources. Whether it is police recordings that no-one is allowed to see, or iPhone videos that are blocked by undefined censorship rules on social media platforms like Twitter, Instagram, FaceBook or whatever, the narrative is shaped by those who have the power of the domain. (One of the few things the Right and the Left agree on, by the way, each claiming to be silenced in egregious ways in different instances.)

There is a different psychological aspect of narrative grab, though, that we are also exposed and victim to, namely the way language shapes the way a situation is framed, and the way interpretation disambiguates a potentially ambiguous photograph in ways consistent with a particular narrative agenda. The overused “my terrorist is your freedom fighting martyr” example aside, there are other ways of shaping opinion.

Portland is a Warzone comes to mind, a description of protests that shaped the national conversation last summer, when really that was only when you saw select images and paroles on the Internet. Not that the city did not suffer from destructive action, or that those actions had consequences for more peaceful protests, but overall life was as undisturbed in most parts of the city as it had been. Which would be hard to believe if you consumed photographs of fiery walls, smoke filled streets, phalanxes of the feds and rioters, snapshots ripped out of the larger context. Note my wording: rioters, not protesters; phalanx as a military term; smoke filled streets hinting at fires out of control. Choice of words structure the narrative.

Another example is yesterday’s generalized accusation by Germany’s Federal Commissioner for Jewish Life and Anti-Semitism, Felix Klein, that Muslim youths are responsible for the current antisemitic acts in the country and need to be flushed out by police. German-Jewish reaction has been one of disbelief: the pervasive German anti-Semitism, more and more unabashedly out in the open, has been exchanged for a narrative that puts blame on another stigmatized minority, immigrants.

Given that we can probably agree on the fact that narratives are created, controlled and used for particular purposes, I believe we have the obligation to collect narratives from all sides, to learn about differing perspectives before we make up our mind about fact and/or fiction. This might be harder when sources are scant and monopolized, but it is possible. It is also more difficult when a particular narrative has dominated discourse for ages, prohibiting glimpses of the accounts of the other side.

I try to read widely nonetheless, not just the sources I trust and find comfortably echoing my own political inclinations. I welcome suggestions for reading sources I might not even know about that provide food for thought. It is work, agreed, and undermines all those nifty heuristics our minds use to make life easier, confirmation bias, anchoring and representative bias among them (I wrote about these cognitive short-cuts in reasoning and decision making in detail some time back here and here.) It is also our only chance to break patterns that are obstacles to finding solutions for dire problems, even life-threatening ones, be they pandemics, war or colonialism.

And just maybe, aliens.

Photographs today are open to differing narratives. Are those cute little insects helpers in the garden (aphid patrol) or pests that will go on to eat everything? Or both? Or different ones at different times? Unambiguous answers only.

Music today is about the Queen of narratives: Sheherazade. All she grabbed was time to live….

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A Shift towards Healing

All I can do is to recommend something as I write this on Earth Day – but, oh, do I hope you take me at my word and make some time this weekend to check out this essay from BBC Future. The article is devoted to a discussion of how we can handle our emotions regarding climate change and all the dangers it implies. Although it centers around ecological grief and anxiety, I believe that its teachings can be easily transferred to other kinds of traumas we are dealing with, the experience of living in a pandemic-struck world included.

At its core is the question how we can avoid denial, disavowal or paralysis when exposed to a barrage of fear-inducing news, since these reactions prevent us from taking needed steps to tackle the issues. How can you integrate climate anxiety – not a pathology but an appropriate reaction to what we have learned about the likely future of our planet – into your life and the ways to live it without letting it suffocate everything? How do you make decisions – many young couples, for example, worry about starting a family – during times of emotional upheaval?

The authors, Rachel Clissold, Ross Westoby and Karen E McNamara, guide us through ways that trauma has been handled by traditional peoples across history as well as in contemporary settings. They focus on connectivity, stillness and contemplation, insights about the amount of time it might take to approach healing and how social connections help process our emotions. Each of these topics is presented with lots of information on how those processes work or have worked for groups of people in the past who experienced existential threat and upheaval.

One of the facts that certainly registered with me is that taking small steps, even if they seem utterly futile for the larger picture, does provide a sense of agency that dampens the more negative emotions. You don’t have to become an activist, or invent a weather machine or start living in a plastic-free cave (should these still exist) to find some form of healing. Not into biking? Going vegetarian? Stop buying clothes before you’ve worn out the old ones? There are always alternative steps. Start taking shorter showers…

In any case, if you’re not up for reading, then watch the documentary (currently on Netflix) that is introduced in the beginning of the piece: My Octopus Teacher will lift you up.

Photographs today are from New Mexico where indigenous tribes, nations and pueblos knew how to live in unison with nature for centuries before colonial ravagers arrived. The images were taken on an early morning solo hike at the Kasha-Katuwe National Monument exactly 2 years ago. I wrote about the history of the place here.

Here is the view you are rewarded with when you make it to the top.

And here is today’s (sort of) musical contribution of someone who makes a difference.

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Shift in Beliefs

Let’s assume you are – unjustly – accused of a crime since you happened to be on site when the police arrived. They drag you with them to be interrogated, convinced you are lying when you profess your innocence.

Do you have a clue what behaviors to avoid so you won’t reinforce the false assumption that you are lying? Should you avert your gaze or consistently meet the interrogator’s eyes? Should you sit extra still since fidgeting might be misinterpreted? Should you avoid rapid blinking or fiddling with your hair, yawning, complaining or covering your mouth while speaking? Should you cross your arms or your legs or avoid either? Should you concentrate on the pitch of your voice unless it is too high or too low? Should you be strongly emotional or rather reserved? As you might have guessed, these behavioral cues are believed to be evidence of lying, to the point where police and administrative agencies like the TSA print them on training manuals available for agents tasked with lie detection.

There is just one problem: a l l of them are believed to be behavioral signs of lying and n o n e of these have been proven to be reliable indicators of lying. Decades of scientific research both in the lab and in real-life, field scenarios debunked the notion that behaviors of certain kinds enable lie detection. (I am summarizing the long version of the findings which can be found here.)

Many international police departments have acknowledged these facts and are retraining their personell. Not so in this country where police and TSA stick to their old assumptions, regardless of the tragic consequences. People have served decades for murder in prison because they were found too stoic or too hysteric during interrogations, only to be later exonerated by other evidence.

In fact, departments are offering workshops and courses, spending inordinate amounts of money on them, that are reinforcing the old stereotypic beliefs, offering pseudoscience if not outright junk science as an alternative to the real thing. You wonder why. Why is there no shift in beliefs? Seriously, what is the motivation? Particularly since we have indications that there are other, more effective ways to actually spot lies, ways that do not focus on behavior but verbal cues? Give a suspect more time to speak freely in interview and they are likely to provide contradictions if lying, allowing the interviewer to spot liars accurately way above chance. Or access spatial memory, by having suspects draw maps of the crime or alibi scene. It turns out truth tellers report many more details in comparison to liars. UK police now regularly use this sketching method, having seen a significant improvement in lie detection.

Here are a few hypotheses about administrative preference for pseudoscience from researchers in the field who struggle to find more reliable ways of detecting lies.

  • “…unlike scientific knowledge, pseudoscientific claims offer immediate and easy solutions to complex challenges. They are thus particularly enticing. For example, the work of security and justice professionals could be facilitated by the use of highly accurate lie detectors during their daily face-to-face interactions. While science cannot offer such devices because they simply do not exist, pseudoscientific claims can be tailored to the needs of professionals and appear to be nearly infallible. Practitioners with limited knowledge of science and seeking a silver bullet might find these claims quite appealing.” — Science is complicated. Even if you are open to science you might nonetheless bite when someone dangles a simple solution in front of you cloaked in scientific jargon.
  • “The lack of specific or general scientific knowledge could partly explain why some organizations turn to pseudoscience and pseudoscientific techniques. “if organizations in the fields of security and justice do not lack specific or general scientific knowledge, they might turn to pseudoscience because they ignore the importance of science to improve their professional practices.” — Our national failure to provide good science education has long-lasting consequences.
  • “Some organizations in the fields of security and justice have probably turned to pseudoscience because they underestimate the disadvantages (and overestimate the advantages) of using programs, methods, and approaches that, on the surface, seem scientific but, in reality, are not.” — This is possible, but two other factors need to be added when comparing how backward we are as a country compared to others in their approach to adequate interviewing. One factor is sheer size: to re-educate a few hundred or even a couple of thousand officers, sheriffs and the like in, say, Great Britain, is easy compared to the number of police we have in this country. The outreach would be an enormous undertaking. Which brings us to the second factor: we have no centralized control of the police in this country. There are so many diverse organizations, so many different power hierarchies, varying from state to state, that unified reform is practically unthinkable, even if the will existed.

If I say it’s harrowing yet unsurprising, in a nation where science bashing is fashionable and power structures are cemented in, I ain’t lying.

Photographs today are of a place that calms me down when I am thoroughly irritated as when thinking through the issues above.

Music by contemporary composer David Lang, about what else, cheating, lying, stealing…..

And a shout out to the kind beings who drove me out there and back, patiently shuffling alsongside of me…

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Of Kites and Camels

I thought today is a good day to express my appreciation – love having you all around. Seriously.

It is also a good day to remind all of us, now that you’ve listened to the song and Stevie Wonder’s expressed desire to fly kites and ride camels, that playfulness and adventure is not just a luxury, but a necessity to live fully nourished lives.

The visual representation of today’s claim then, is the one found on my resumed neighborhood walks, or should I call them shuffles….

A fist raised in defiance to all that stands in the way of calling in what we really need for more than sheer survival.

Bring on the camel! I’ll soon be ready to ride.

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A Case for Waves

Installment #3 of visual representation(s) of current ruminations. Let the waves roll.

Some of the most frequently uttered phrases I heard during the last year contained the word “wave.”

“I am overwhelmed by waves of sadness.” “I was flooded by a wave of rage.” “I can barely keep in check the waves of despair.” “Fear comes and goes in waves, night and day.” These are all, mind you, not just reactions to personal illness but communal response to the events in the world, our 12 months-long exposure to serious isolation, to threats to our health and livelihoods, to the acknowledgement that mental health is at stake as much as anything else. And that’s before we even get to politics…

Waves, in these contexts, describe an onslaught by a powerful force, ready to bowl you over, if not drown you. Yet if you asked me about my spontaneous associations to waves, they would be primarily positive.

There are the gentle waves lapping at the shore at sunset during a perfect beach get-away.

There are the waves that steadily, across millennia, chisel away at seemingly unsurmountable obstacles. A soft but patient force producing change in a hard substance, relentlessly opening space that seemed impenetrable. Channels are carved that allow for flow rather than blockage.

(Imagined) Dinosaur tooth guarding the action since the Mesozoic era….

Waves leave beauty behind, in constellations and patterns, in scars and markings that tell tales of survival and resistance.

And then there are the waves of my childhood summers at the North Sea. I cannot adequately describe the joy that a little girl experienced at the pure physicality of jumping into the waves, letting them pummel you, resisting your small body and swallowing it at the same time. I never participated in sports, and had few outlets to let the body rip, except peddling my bike at top speed. Waves allowed you to throw yourself around, wildly thrashing limbs, leaning in, ducking under, rolling and diving. Once a little further out they carried you in sinusoidal motion, lying on your back while ignoring parental yelling to come back, being rocked like an infant, water brushing against all that skin that was usually covered neck to toe. Feeling body without shame and hesitation, calmed by fluidity all around you, but also thrilled by your own daring.

Perhaps we can focus on that perspective, then, a reappraisal of the power of these waves. They can serve us just as they can overwhelm. Those waves of anger will need millions of years before they grind us down, the waves of sadness soften us to feel what we once blocked. The waves that scar us are the same that cradle us until we are ready to move on. Moving on to waves of joy, of gratitude, of re-immersion onto sounder footing. And before I get lost in sermonizing, let’s remember you can always rent a boat! Preferably the one envisioned by Ravel, gliding through some of the most beautiful waves music has ever produced.

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March Hares

Installment #2 of a visual representation of current ruminations. Meet the March Hares.

The photograph’s central characters are a bunch of bunnies, looking disoriented in all kinds of directions, with an upright sentinel standing guard in the background. They are surrounded by tea cups – March Hares love themselves a tea party after all – and a little doll – Alice, exhausted? – lies prone behind them. A candle burnt down to a stump stands in front. The silver bunny is tarnished, the Netsuke one has a scratched coat and the porcelain ones have postures and facial expressions that remind of the German compound word Angsthase (fear bunny,) our equivalent for Scaredy Cat.

Life-threatening illness does that to you. Having prided yourself all your life of not being a scaredy cat, you find yourself being an Angsthase, hyper-vigilantly monitoring every blip in your body, noticing every scrap of tarnished decay, crouching paralyzed, directionless among your fears, too embarrassed to voice them all. A burnt down candle? Why, life is about to melt away. A doll keeled over? A sign, an omen! Everyone looking in different directions? Loneliness personified. The world interpreted through the looking glass of experienced disaster.

But hey, it’s March! Bunnies congregate (once they’ve relearned to socialize after the eternal Covid isolation) to frolic, never mind to engage in ever more pleasurable activities. In fact Mad as a March Hare is an English idiomatic phrase first found in the 16th century, referring to the strange and excited behavior of hares during the breeding season. Spring is around the corner, and the historical morphing of March hares into Easter bunnies is linked to the empowering (if perhaps illusory) belief that light can rise from the darkness, life from death.

Let’s look at certain forms of over-excitability as a life force then, not mental decline. And let’s remind ourselves that the famous tea party for Alice forced a serious re-evaluation of philosophical concepts, time included, offered dryly by the March Hare. Strange new worlds we might find ourselves in, but they do allow for re-negotiation. What was important might no longer be, what wants to be pursued might have changed. A fresh start then, rather than paralysis, just like spring in its affirmation of renewal.

Maybe if I say it often enough, I might actually start to believe it……

Here is Beethoven’s Violin Concerto #5 – Spring Sonata

Alternatively, you can peek at a mad, mad version of the tea party… and ingenious but hard to process opera by Unsuk Chin.

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Mix and Match

Let’s do some experimentation to bridge these weeks where I am not at full strength – brain and body alike – with something focussed on a single photograph.

My choice of image was based on how well the picture captures what’s going on in my current state. Here is today’s visual representation of the status quo.

The central characters are stuck at a cliff edge. Looking ahead, fog envelopes the landscape, with no clear view of what the future holds. The blossoms are curled into themselves, with tear-like rain or dew drops attached. The path towards the edge is filled with broken pieces of granite, pebbles, sticks and stones that make for precarious footing.

I’m stuck as well. Not necessarily at the cliff edge, but with little predictive power as to how the future unfolds, with the fate of lung capacity uncertain. I have so little stamina after two consecutive surgeries, and so little breath available that I can slowly walk for only 30 minutes. Forget hiking. Water drops cling to me as well, be they tears or be they frequent night sweats that try to push all the medication out of my body. The path has been anything but smooth, and now we have to wait until early April to determine if I need yet more surgical repairs.

But, oh, look at the defiance of these Penstemons!!! They make due in the harshest of conditions, are luminous in their rebellious purple, smartly planting themselves in the vicinity of a natural wall that protects against the harsh mountain winds. They don’t have to go anywhere, the world comes to them, pollinators grateful for a destination, hikers silent in appreciation of the unexpected beauty.

Count me their cousin. I might be purple in the face from huffing and puffing, but it is a purple of determination to get this body back to working. Conditions are somewhat harsh, the Covid isolation making everything more complicated, the pain requiring a delicate balance between weaning off the meds while not have pain interfere with healing. I, too, however, am graced with the shelter of my surround, practical and emotional support arriving from all directions, some intermezzos of calm before the winds arise again. Things could be worse!

Mahler’s 3rd captures the mood to perfection.

How is that for a mix and match?

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Stigmatism and Health

This essay was supposed to be up on Monday, but we lost power for literally 4 full days, with no heat, no internet, no telephone. Luckily the contents are not bound to a specific time; I tried to convey general knowledge by health psychologists, oncologists and research teams about what we know about stigmatized diseases.

A dear friend sent me an extraordinarily beautiful piece of music. It will be your reward after making it through the troubling and/or enraging facts I am going to introduce today.

I want to talk about the consequences of being diagnosed with a disease that is generally stigmatized in our society, consequences that affect both the individual patient and also the general fight against the disease. I will need to cover some general statistics, but my focus will be on the psychological and societal effects of living with or dying of a disease that carries a large stigma. (I have by now read widely on the issue, but am too tired to put all the references in order – you just have to trust me. General sources for many of the details can be found here and here. These were the most recent data I could find, maybe lagging by two years or so.)

It used to be the case that AIDS was the prototypical stigmatized disease. General homophobia had plowed the ground for condemnation of sexual “lifestyle” choices that resulted in this deadly illness. People were judged to be, if not deserving (according to bigots), then at least responsible for their own fate, given their sexual behavior. In addition to carrying the stigma of being gay, they now were perceived to be spreaders of the plague, usurpers of medical resources that could have been devoted elsewhere.

Many patients internalized a sense of shame or guilt (even if they acquired the disease through non-sexual contact like blood transfusions) and suffered from the taboo to reveal it. But patients were also diagnosed relatively young and increasingly able to live long, full lives on pharmacological regimens; subsequently, many of them had the years and motivation to become advocates and fundraisers that pushed research in to treatment and cures forward.

These age characteristics are not true for lung cancer, another deadly scourge that carries the great stigma of having been self inflicted, through smoking. Lung cancer can be triggered by genetic factors, by external pollutants like asbestos and radon, by exposure to second hand smoke – but about 80% of patients do have a smoking history, often barely remembered in their youth, stopped long ago, which comes back to haunt them.

The disease has a dreadful prognosis, when detected late which is mostly the case (only 16% are detected early, I am one of the lucky ones.) More than half of people with lung cancer die within one year of being diagnosed. It is the leading cancer death among men and women (these days almost as many women are diagnosed as are men,) killing more than colon, breast, and prostate cancers combined. Blacks die from lung cancer in larger numbers than Whites, even though they smoke less than their counterparts. Mediating factors seem to be worse access to good health care, genetic factors, co-morbidity of other ailments, and additional exposure to environmental pollutants.

The guilt over having smoked, or fear of being judged as a morally weak person for giving in to the addiction (never mind that the product, cigarettes, is made addictive and cleverly advertised to promote sales) has many patients wait to go to the doctor until it is too late. It also leads to self recrimination and depression which are not conducive to an engaged fight against the disease. Lung cancer patients have one of the highest rate of refusing treatment because some of them feel they deserve their fate.

The hesitancy to admit to a lung cancer diagnosis for fear of being shunned isolates people, preventing joint advocacy for better treatment conditions. Being on average diagnosed around age 70 and having such short survival rates does not help either with advocacy. As a result, non-profit fundraising for research and treatment developments is woefully meager, complicated by the fact that people do not want to give money to people who they feel caused their own suffering.

The money raised for breast cancer, for example, is five-fold compared to what lung cancer receives. In absolute terms, lung cancer accounts for 32% of cancer deaths while receiving 10% of governmental cancer research funding. The difference is staggering and has a “spill over” effect—fewer dollars attracts fewer researchers which leads to fewer breakthroughs. We do start to see targeted therapies and immunotherapies, but it is sparse in comparison to other cancer research successes.

Here is the crux: many oncological researchers advance a “utilitarian” argument, insisting that it is not lives saved that matter but years of life overall – and that is of course correlated to the age of diagnosis (again late in life for lung cancer) and the speed of spread of the particular cancer. Saving a 40 year-old with a cancer that has less of a tendency to ravage all parts of your body in no time, gains more years of life than saving several crones for a short while before they come down with likely metastases. It is a rational argument, and a devastating one, not unlike the considerations we have seen in Covid-19 situations where limited resources led to triage decisions that involved statistical life expectancy. I get it.

I think the tendency to hold people responsible for their own fate – you should never have smoked!! – can be sourced back to a much deeper psychological need, the maintenance of an illusion of control. “If I do the right thing, nothing bad will happen to me. If they didn’t do the right thing, then no wonder that bad things ensued…” – That logic protects you from the disquieting fear that something ripping your breath away and taking the very source of life with it might lurk haphazardly around every corner. But the logic also requires to stick to blaming the victims in obvious ways, even if they were young, uneducated or unknowing, acquiring the seeds of the cancer in the 1960s and 70s.

To stigmatize – describe or regard as worthy of disgrace or great disapproval – for a single behavior, irrespective the qualities of a patient as a whole, allows distancing from the fear of a miserable death.

A cruel assessment, from the perspective of the patient, let me tell you.

Photographs are of posters in an exhibition about smoking and advertisement at the Museum der Arbeit In Hamburg, Germany.

Music as promised. Dedicated to my Beloved the day after Valentine’s Day, since I could not make it through all this without him.

A shout-out also to the cardiothoracic surgeon Dr. David G. Tse and the oncologist Dr. Dilip Babu, both at Kaiser Permanente. Their medical expertise was matched by their kindness, both valuable in more ways than I can count.

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