The Real Thing

Stepping on to the boat, I think how fragile, how ephemeral, is autonomy. The regular ferry off Canna was cancelled (wind), but then my host wrangled a private boat, so I’ll get back to mainland, Maillag, on schedule. I pass a small gift—an authentic shot glass emblazoned with a covered bridge, and the word “Vermont”—to Gordon, the island coast guard/toilet-cleaner/bird-guide. He has a positive way about him. His term for the dog barking at 4AM in the resonant tin shed next to my caravan: “a Canna lullaby.”

Between tune-swapping with other isle folk at Canna Cafe, Gordon told me about the birds of Canna. He once sighted “amateur” [Scot for immature] Golden Eagles talon-grappling in the north sky. Talon-grappling is normally a courtship dance, and Gordon was surprised that amateurs were doing it. Two eagles join, talon-to-talon, drop hundreds of feet, swiveling with abandon, then catch the air again, un-folding their wings to save their lives. Teenagers.

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With an inscrutable twinkle, Gordon conveyed a bird-guide’s power: “At the end of a tour, if we haven’t seen any Golden Eagles, and someone’s especially determined to see one, I’ll point to a buzzard and say ‘There’s one, a Golden!’ and they’ll believe me.” Such a betrayal! Does he lie to his birdwatchers out of kindness, or to be thought of as the best bird-guide ever? You can’t tell if he’s kidding—perhaps neither can he. It’s now an experimentally demonstrable fact that, as Lord Acton said, power corrupts, weakens our empathy, our scruples; I guess that’s as true of bird-guides as it is of the rest of us.

In Izmir, Turkey, I once had the temerity, or the innocence, to ask a merchant whether a stone he was selling was really the kind of gem he said it was. “What does it matter?” he responded. “If you like the stone, you can call it whatever you want.” What did I really want, he seemed to say, value that I recognized for myself, or that others recommended? Was I so dependent on social currency that I would deny my own senses? I remember my father’s enthusiasm when he took me bird-watching—“Oh look!” he said, pointing. How I strained to see what he saw.

The boat landed us in Maillag, where I found the Steamer Bar and B&B. At the bar, another customer approached me. “Aycheldach” I think he said, with an expectant look. I’m just off the boat, scruffy jeans, bristled, toting a guitar; must look like the real thing. Others at the bar look on with curiosity. “Aycheldach” he repeated a few more times before figuring out I don’t get Gaelic. “Sorry, I don’t get it.” “Not many people do” he consoled me.

Soon they’re slapping me on the back, asking me if I’m good enough to play a song. I tell them I am. Right now I’m neither Scottish nor American, and don’t have to live up to anyone’s expectations. The barman turns down the disco, and as I start singing, about 20 people in the adjoining restaurant attend. They applaud, they like the songs. I tell them I’ve been to a Headache Meeting. They all want to buy me a pint. I wrap up—I’ve got an early train to catch.

Back in 6th grade, I learned from my dad one of the wonders of the world, that a writer could make up his own name. His friend Whittaker was “E.L. Frimbo” when he wrote about trains for The New Yorker, and I’m sure Frimbo wrote about the Scottish West Highlands train, the one I’m on now.

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Through its magical windows you can see stags run over the heath, sunny glacier-carved mountain tops crest over fog horizons, lochs, sheep. This line was used to film Harry Potter movies, so there are usually one or two Harry Potter aficionados riding it. I’ve heard they’re quite willing to scold the innkeepers in towns like Crianlach and Glenfinnan if they’re not up on their Harry Potter trivia.

The passenger across the table from me, a young scientist from Oxford, has a remote look. He’s been hiking, hoping to find some remote places in the highlands, but there were always other hikers. I found a place though: up on Canna’s high hillsides; I kept my eyes on the sky, looking for eagles. Oh look—two eagles, square dancing at 300 feet. Just as they come together, they sail behind the mountain top. Or were they buzzards? I look down at what seem like a million little cow-paths, evidence of cow-autonomy printed on the angelic sedge. I meander back to my caravan; so many beautiful ways to get back home.

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Lost & Found

I’m in Scotland, and I lost my hat. The one that was supposed to do for me what my father repeatedly suggested to me when I was young: “Get your head screwed on boy!” I took it kindly. It was an encouragement towards mindfulness, or core strength. And now, the screwing entails some deduction: by now, if I’d left my hat in the cab, the Glaswegian taxi driver would have turned it in to the Convention Center where he dropped me off, so I must have left it at the ticket counter at the Queen St. Railway Station. Two days after losing it, I’m here, hopeful, making a precise description of a non-descript black hat to the lady at the station’s Lost and Found desk. She disappears for an intolerable number of seconds into a room full of lost things, then re-appears with .… that’s it! We smile at the hat.

And now I’m sitting on the West Highlands train, rolling headlong into the mountains, delighted how things come around. The ferry connection will get me to a lodging gracefully called a “caravan,” Scottish for a corrugated rectangle containing some of the comforts of home.

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the caravan

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view from the caravan

 

Surrounding the caravan, the Isle of Canna, which may be too small to be a Hebride, though I shouldn’t second guess it. It has, in any case, a similar density of sheep, lichen, and off-shore seals embracing its polygonal coast.

The weather in Scotland, like in Vermont, strikes one pose after another.

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Maybe it was the fog blurring their horizons that made the Scots such persuasive, persistent scale makers, meting out this spectral, mysterious world in numbers and categories, all the way back to Lord Kelvin with his Absolute Zero Temperature scale. More recently, the head trauma cases coming in from the local highways gave neurosurgeons Teasdale & Jennett the idea for the Glasgow Coma Scale.

I have a bit of that ornery, Scottish measurer/categorizer in me, and come by it honestly, from the McQueens and McPhedrans in my ancestry. (McPhedran—in fact it’s not the name for a Scottish herbal stimulant.) I felt their presence when I stood at the microphone with a question for the speaker in a large, dark Glasgow auditorium, and the moderator was about to pass me over for a second time. “Hellow!” blurted my inner Scot. The moderator heard the W, and promptly apologized.

“Do you think the disposition to placebo and nocebo response resides in the same person? Or are they in different people, as though we’re either optimists or pessimists?” I don’t remember the response, which probably means it was 65 seconds of polysyllabic gesticulating, academic for “I don’t know.” Aykhh. When it comes to reviewing medication side effects, clinicians would like to know which among their patients is prone to side-effect-by-suggestion, nocebo.

I used to think I’d avoided “social infections,” but since I’ve attended the “European Headache & Migraine Trust Conference,” I’m not so sure. Here, a social infection is something like what the Italian experimentalist Benedetti caused when he sent over a hundred students, clambering guinea pigs, up a 10,000 foot Alp. And now, the bad magic, the sorcery: simply by whispering into the ear of one of the climbers “You will very likely get a headache during the climb; it’s from the high altitude, …” Benedetti increased the headache rate at the mountain top from 52% to 86%. That’s social primates for you, spoiling the picnic with a contagious headache, algesia-by-suggestion. I wanted to ask if Benedetti, like any good experimentalist, ran the study twice, to reproduce his results. Recruitment could be a problem … But I forgot to ask him, as I was missing my hat at the time.

The nice thing is, it seems you can save the picnic with a placebo, though only the nocebo headaches respond to it; it won’t touch those original, 52% of headaches. There is a way, however, to fortify a placebo. It’s all about expectation: tell the consumer that there’s a very low chance—one in ten instead of the usual 50-50—that he’s swallowing a placebo. He thinks, correctly, “this is most likely the real stuff,” and so, even when it’s a fake, it works, better than a work-a-day, 50-50 placebo; or Prozac; or molasses.

Wrangling expectations can be a social thing. Or not. Now that I’ve got my hat again, I’ll carry it in my hand, and ask my expectations to be nice. They’re bound to listen.

 

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Getting Over It

Yerevan

Yerevan

I’ve returned to Vermont, but I’m not letting go of Yerevan. There’s something about this city, at once wide open to imagination, and rife with wicked problems. It’s responsibility, not disaffection, that drives the breakup–I’ve got to return to my post.  But I don’t want to get over Yerevan.

Case. 5 month old with recurrent intracranial hemorrhages–can you help us with this problem? The neurosurgeon opens up the CD for us. The hemorrhages are sub- and epi-dural, bilateral, of varying ages. The collections undoubtedly explain the child’s hypotonia, even as he looks alert, tuned in. Whatever the cause, there is no fix, other than tender loving care. The child’s brain will have to heal itself up. “Hypotonia is the least of this child’s problems” says the surgeon.

Why these hemorrhages? No known trauma or bleeding problems. But “non-accidental trauma,” as the euphemism goes, typically presents with the history “no trauma.” I suggest long bone films, an eye exam, for evidence of mistreatment. My colleague looks doubtful. “No, we don’t see this … because in Armenia, children are gold” she responds. They are gold everywhere, I think, even if parents, in non-accidental fits of physical rage, sometimes forget.

Brain injury in abused infants stems ultimately from an interaction that, while not accidental, has lost track of its intent. The caretakers’ anger blinds them to their responsibility to get over frustration, to not let a tempest in their brain’s limbic system shut down their restraining frontal lobes.  I’m sorry for the jailed parents who lost their moral compass in an emotional storm, and for their battered children.

Gohar Droshagiryan's Drawing for Like Water On Stone, animation of Dana's novel.

Gohar Droshagiryan’s Drawing for Like Water On Stone, animation of Dana’s novel.

Getting through such a storm, autonomically speaking, is a journey through some woolly peaks and valleys, and it’s a little different for each of us. You can divide us according to the alacrity with which our stress responses erupt with sweat, fear, and pounding heart, and how quickly they simmer down. If we quarrel, I may have thought things through (all right, you apologized, I accept …) before you’ve really settled down (but I’m still upset about it and we’ll both just have to deal with that until …“)? Reconciliation doesn’t happen all at once.

Case 3 year old boy, losing weight, and hakarak, aggressiva–increasingly contrary and aggressive. But his weight seems OK, and he won’t let go of the doctor’s chocolate snacks for the gait examination. Off to play therapy. Play, among other things, is a good way to learn how to go in and out of frustration in peace.

Neuro-responsibility. At what age do we lose that gold, that innocence that should assure us respect as children? And how can we verify the capacity for knowing intention that makes us responsible, culpable for our mistakes? In the 19th century, there was a trend for some poor mothers to plead temporary insanity when their babies were found murdered. And the juries were sympathetic.

Temporary insanity was a well-established legal defense in Europe–a gift of the psychologists to the lawyers you might say–when, in a Berlin street in 1922, an Armenian shot and killed Talaat Pasha, one of the primary architects of the Armenian genocide. The assassin was acquitted–temporary insanity. His defense lawyers made the case with photos and narratives of a horror whose legacy was still in its infancy. That trial brought Armenia as close as it ever came to a proper public disgracing of its frenzied murderers. The evidence gathered became a study guide for Raphael Lemkin, who later coined the term genocide.

Music. Aram, my oud teacher, has brought his duduk-playing friend Sevada so that I can purchase one of his duduks for Jeff, back home. A flute made from an apricot tree, and resonated by a bamboo reed, the duduk makes one of the most soulful sounds you can hear. Before we close the purchase, Aram and Seva play Hov Arek, Come Breeze, by Komitas, who is said to have been driven insane following his imprisonment in Istanbul in 1915. It pulls my heartstrings, this tune, and I pull back. I keep re-playing it, but I still haven’t gotten over it.

Zoom Out

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Dance Dana shoots her left foot out 3 feet behind her and the young man passing by almost trips over her leg. He better watch out, the women are dancing Madzoon, “stirring the yogurt,” in a circle at the Naregatsi Center, where a hundred dancing bodies are heating up with Armenian rhythms. We greet our dancing buddies, who take our hands again.

Intensive Care. A one month old with seizures, absent corpus callosum–the problem is ultimately genetic, though chromosomes were normal. What about a DNA test? In clinical work, genetics presents a jagged coastline–the closer you come, the longer it gets. You couldn’t explore all its fjords in a lifetime.

“We have one more case for you.” This 12 year old girl’s delicate face is marred by a naso-gastric feeding tube-she has been vomiting for 20 days. No other symptoms–“the story is long, and yet with nothing else to tell” say my colleagues. I find a watchful, thin girl with no nystagmus, a normal exam. This can’t be labyrinthitis. GI workup was extensive, negative. As I coax her to sit she abruptly falls back, eyes close, pulse steady. In 3 seconds, she wakes up, fluent. “What is this?” asks the intensivist. Conversion Disorder–psychosomatic. One doctor says this is rare in Yerevan, but I wonder if he’s really stepped back to measure.

Performance Review. To teach, alas, is to judge. When a trainee seems weak, our responsibility to her future patients demands that we single her out, as we say “we don’t want you to feel singled out.” Is she over-confident, self-abnegating? It’s a Goldilocks thing, medical confidence.

We strive to pool perspectives to get the best view. Often, our impressions scatter with the coherence of bugs on a windshield–a good sign of reviewers’ independence. Wisdom of Crowds (Surowiecki) makes the point that it’s often better to trust the pooled opinion of 100 independent lay folk than that of a few experts. Can we be both?

Clinic. The parents, sitting opposite my colleague, each hold a twin. The 5 month old brothers study their doctor intently over the pleasant bodily wobbles common to their age. When their head ultrasounds were done, as premature newborns, both showed the ominous echo pattern of white matter injury that strongly predicts cerebral palsy. But their neuro exam doesn’t yet show definite signs.

So put down that reflex hammer and step back, take a look at their General Movements. This is a kind of gestalt impression of spontaneous infant behavior, introduced around the same time as the head ultrasound, though much more melodic. See the fidgety movement–good sign! The GM assessment was devised by Heinz Prechtl, an Austrian ethologist and bird-watcher, whose baby-watching methods are catching on. One brother shows ominous cramped, synchronous movement. But I’m un-sure if the parents would welcome this long view. I don’t let on.

Martyrs Day. This week the Armenian nation commemorates one of a series of massive stuttering slaughters of its people in what is now western Turkey–1895, 1909, 1915. These were the serial genocides conducted by Ottomans, who deployed some of their cruelest citizens, some even released from jail for the purpose, to kill Armenians, or lead them into the desert to starve. Frustrated by governments’ denial, historians went pointillistic, bringing thousands of accounts to international tribunals. Though you can hardly meet someone in Yerevan whose family wasn’t affected, the Turkish government dismissed these histories, as though the Armenian people were suffering an epidemic psychosomatic disorder, a confabulated Freudian memory of childhood abuse. I wonder how often in history, if ever, has an ethnic group’s sub-conscious produced confabulations of murder, persisting over 3 generations? Do nations cry wolf in this way? Meanwhile, “1915: I Remember and Demand” say the street signs. Agreeing on history sometimes requires a long hard look at the big picture.

Cameraman and Mt. Ararat at Tsitsernakaberd, the Armenian Genocide Memorial

Cameraman and Mt. Ararat at Tzitzernakaberd, the Armenian Genocide Memorial

"I Remember and Demand"

“I Remember and Demand”

Strange Territory

Arriving to Yerevan sets off dozens of soothing little clicks in my brain. Like suddenly remembering that Marshrutka #29 goes to Nora Gyugh, that my feet can trace out the steps of the Papuri dance in unison with a score of strangers, that my colleague’s office is up on Mamikoniants Street, half way down the hall on the right. There is comfort, a sense of mind and body aligning, in suddenly remembering the arrangements of streets, of the people on them, of their beautiful faces. Like a dream, or finding that some old clothes I’d nearly forgotten suit me as well as ever; it’s a perception that works like the mind’s own hospitality ethic, the one that lives in a dozen ancient cultures–make yourself at home.

With classic, joyous hospitality, Dana's cousins swooped us from the airport to a feast in their home

With classic, joyous hospitality, Dana’s cousins swooped us from the airport to a feast in their home

Travel also re-arranges geography in a pleasant way: when I’m here, Yerevan moves closer to Vermont than it was, or seemed to be, when I was in Vermont. So it may be with other kinds of fields–the intellectual kind. A trainee in child psychiatry joins me weekly, in clinic at UVM, and I strive to extend hospitality, make her feel at home by focusing our discussions on the psychological dimensions of the cases. Opportunities for this kind of intellectual hospitality arise when we see cases like one I saw last week in Arabkir Clinic, Yerevan:

Clinic. He is 10, and sits with the emotionless stillness, the poise I remember from Armenian children at this age, even though their brains have just cranked through a programmed developmental revolution, the kind that changes the furniture arrangements. I hear that he was referred here by a logotherapist–a speech therapist.

My colleague turns to me and asks whether in my work as a pediatric neurologist I see referrals for stuttering. “Not since the last time I was here.” She laughs, that happy-side-of-despairing laugh, for this referral signals a mis-understanding in her medical ecosystem, and she explains as much to the mother. But then there’s more–he can’t feel his palms. Just like that, the chief complaint around which the encounter should orbit has just re-positioned by 1000 light years. We don’t de-brief, historicize the numbness–but get right to brass tacks. Well nothing that sharp really. We check his nervous system.

The neurologist breaks a wooden swab and tests him–sharp vs. dull–through his face, shoulders, neck, arms, and finally his palms. He pauses longer, but identifies the sensation correctly throughout. Dismissed.

This is a scene I recognize: one care is addressed, and another swims to the surface, and none of the concerns speak of any serious pathology, just bewildering phantasms emerging in a Sisyphean interview. Why this tsav–hurt–that our tools can’t heal? We merely predict that it will pass, and then it does. But not before the parent leaves our office wondering, “an artifice of my child’s mind? Why?”

Back in Vermont, discussing such cases with my child psychiatry trainee, I venture that, perhaps for both the child and his parent, this un-satisfactory transaction exemplifies what the psychiatrist Chefetz has identified as the mind’s imposition of a “phony coherence that is better than confusion”: for the child, if they are at the doctor’s office, there should be a reason; for the parent, being a medical puzzle may make more sense than their child’s confusing somatizations.

At the end of the day, my child psychiatry trainee confides that she feels more comfortable here in Neurology Clinic than she had expected. Success! But then, I want her to be more daring, to venture further with her curiosity into Neurology’s dark forests. Curiosity, like music, signals a sense of safety, of security, and sometimes inviting curiosity, nudging it a little, can catalyze that safe feeling. Especially if the music is from the heart, if the questions come from wonder at the strange territories around us.

Save the Children

Mashtots Poghotz Walking the streets of Yerevan, Charlie Chaplin often turns up on T shirts and storefront posters. Maybe it’s because Charlie’s side-kick, Jackie Coogan, helped to raise millions of dollars for starving Armenian orphans in a 1920s media blitz organized by Near East Relief. The campaign was so effective that you probably heard their meme relayed via your parents’ parents: clear your plate, remember the starving Armenians.

Near East Relief, ancestor to the Peace Corps, retained artists, actors, singers, even made a film, to make their pitch. The campaign proved how well photos and films that depict sad, beautiful faces can compel a critical bit of behavior change: donation. The millions that were raised in this un-precedented effort helped thousands of survivors of “death marches,” like Dana’s grandma. They came south and east, from Western Turkey into Syria, through the mountains.

Lecture Hall, Yerevan State Medical University The largest congregation of pediatric professionals I’ve seen is convened on a Friday to hear New York child psychologists, talking heads beamed over to a large screen in the hall. The discussion is about losing our children to media–to computers in particular. The Americans (ironically enough) are emphasizing what these clinicians already know: the animations and interactives that pour out of the US, among other sites, are endangering family relationships.

As in the US, a high percentage of Armenian children and adolescents continually focus on those pocket computers that we label innocuously as “cell phones.” Toddlers aren’t exempt: television stunts their language development in dose-dependent fashion. I doubt there is a pediatrician practicing in the US today who hasn’t been out-competed by such a machine in her attempt to have a discussion, to build a relationship, with a young one. I know the seated maestros of “World of Warcraft” and its like possess an extraordinary suite of skills, but I don’t want to play, so I can’t relate.

Questions from the audience: “Can you tell us in what ways social media have been studied or used to improve children’s health?” “We now label cigarettes for their negative effects on health; what do you think about doing the same for video games?” “We hear your advice to guide parents to restrict kids’ video game hours, and TV, but how should we do this? We are trying to guide parents and it doesn’t seem to work. What really works?” Stunning, insightful questions that set the experts to spin: “Clearly, we need more studies … No studies have been done … ”

One happy picture of parenting shows us simply admiring the old-fashioned child’s play, the kind that doesn’t rivet their attention through micro-chips, from a distance. A nice way to convey the principles of self-determination–competence, autonomy, relatedness–all at once to ones we love. Interventions for parents of kids with behavior problems like ADHD borrow this approach, and have parents narrating, extolling, though never influencing the play itself. “Avoiding boredom is one of our most important purposes.” (Saul Steinberg) A milestone! You’ve rescued yourself from your own boredom! thinks the watching parent. Meanwhile, these machines fit into the lonely caves of our boredom like a key in a lock.

In Dana’s book (Like Water on Stone), set a few years before Near East Relief flew into action, there’s a moment when a three year old is alone at home, waiting for her brother, fighting off boredom by swinging her feet. In 1915, she lives far from the electronic media networks that will soon help rescue her.

Song: feet up, feet down

Future Selves

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Clinic, Yerevan This 7 month old was fine until the last 3 months: decreased visual interaction, increased flexor tone, keeping hands fisted. MRI shows leukodystrophy, and my colleague’s first thought is metachromatic. Or Krabbe–how is the head growth? The interview takes place standing, in one corner of a colorful, windowed playroom. The parents smile at how his gaze reaches for me as I say his name. Repeatedly, during the interview, he seems to grow sleepy, then he revives, as though it’s important to stay present.

Another family watches from the other side of the room. Perhaps they are related?  But they keep their distance, 15 feet. As I come to realize that they are in fact the next consultees, my mind scrambles to reconcile the dissonance of the confidentiality breach. Aha!– they are like family. It’s in the gravity of their gaze. If there is curiosity there, it isn’t morbid; if there is empathy there, it minds its fences. Though the two families have never met, I wonder if they know what I know: after this meeting, they are like family.

The confidentiality practices in Armenia stir a bit of anxiety in me, but I’ve been keeping that to myself (until now). As an ethical principle, confidentiality doesn’t just protect us from social hurts in the here and now (e.g., stigma, gossip). It also protects our future selves from pigeon-holing, from financial disadvantage, from getting nudged into a ditch somewhere down the road. Of course we may be our future selves’ worst enemy, under-estimating and abusing them with static expectations (“I always … I never …”).

We move over to the family across the room; now they are lit with the first family’s gaze. Their articulate, economical responses to my colleague’s questions are no more ruffled by their neighbors’ attention. Hemiparetic, she reaches her right hand across the front of the doll’s house to open its side door, playing seriously while her parents talk. Her seizures have significantly reduced on Depakene. She is 4, and just now starting to relate to peers. Her condition– infantile hemiparesis—was first described by Freud before he turned to other brain problems.

Later, the first parents come un-announced to my colleague’s office. Their faces look beautiful together as they gaze at the translucent MRI film: grandfather, rough and stubbled; tidy, composed grandmother; laconic, equanimitous mother; her infant child, eyes also searching. Their joint attention transcends the image of disaster they behold.

I have a strong impulse to photograph them … if I ask, they might feel they have to assent … they have enough to worry about … will others see their beauty in a photo, ricocheting around the planet? … it’s not like I’m family.

I leave that office turning over my inhibitions, with a new ambivalence about confidentiality rules. “Treat people as if they were what they ought to be, and you help them to become what they are capable of being” (Goethe). And what if we ought not to defend our future selves so carefully? I still think of that family, looking through an MRI towards a window they can’t see; maybe they are like family.

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“OK, you take my picture”