Zoom Out



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”


Heads and Tales

Clinic. The DNA report is in; it is read to the parents, and they weep. A life can be sorely rattled by a mistake in a sodium channel gene–seizures, rolling in from the horizon, wave upon wave, with more heavy weather expected. The neurologist helps to little avail, adding medicines, piling up sandbags against a tsunami. The parents should be checked, as the report says, considering the genetic counseling implications. More dreadful prospects.

[Perhaps the most widely applied “genetic counseling” technology, if you will pardon the expression, is ultrasound: when the sound waves say “it’s a girl!”–oh woe, an abortion may follow. One source says that the sex ratio for 3rd births in Armenia is over 2:1, boys to girls.]

The doctor is frank-there is no cure-Boozh. But we can try. With this syndrome, the child may walk, communicate, but the balance is often poor, vocabulary limited. How will the family cope? What village will raise this disabled child, whose promise seems so small? This life, dashed repeatedly on the rocks of status epilepticus, will surely be briefer than most. The parents’ worried faces show how they are taking in the prospects.

No wonder social stigma has followed the shocking, unconscious behaviors of epilepsy through its whole history. Stigma is a kind of “social death,” as the anthropologists call it. I’d call it a direct descendant of dread. Epilepsy, with its un-predictable, occasionally lethal, fits, prompts dread on several fronts: economic, psychological, and social burdens. Like bad magic, the perseverations of dread whisk those future losses right into the present. As songwriter Nicky Mehta said, “worrying is like praying for bad things to happen.”

Clinic; as the next family initiates their visit, opening the hallway door, looking in tentatively, then walking in. A 20 month old, recently hospitalized with strokes from Hemolytic Uremic Syndrome, has made a remarkable recovery: from a mute, twisted, vacant child, to a shiny joy, attentive, gesturing, though still with dystonia in all her limbs, unable to sit. Her father and grandfather cope with the anxiety of the visit by antics and pantomimes, seeking her smiles.

At one point, the father tells the neurologist that she, among other doctors, had been overly negative in discussing prognosis during the hospitalization. Like any doctors, guides in a mysterious jungle, we neurologists may forget to say “chem garogh asem” (I couldn’t say). In Armenia, as back in the States, when you hear a neurologist mention god, it is probably because they are trying to avoid making a prognosis-“God only knows.” Being foolish mortals, we no doubt succumb to downward pressures on our prognoses: embarrassed by the plain and common fact that we are incapable of healing, we forget what our patients can do for themselves; or, pretending that we are protecting them, we lower parents’ expectations of us by talking gloom. The miracle of such a recovery, feckless and un-reliable as it is, brings humility and joy all at once.

The visit seems long at 50-some minutes. Later in the afternoon, my host vents, “I am 45 minutes late in my appointments.” I think I know why. I think she did what I do: compensate for parents’ disappointment by giving more time, as though to re-gain solid footing on some buoyant craft we are meant to share–our optimism.