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.