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.