“I can,” was the curt reply to my request that she actually see Kyle walk. After an hour’s drive and a ten minute obstacle course pursuit for a wheelchair, Megan and I sat in the small examination room with Kyle and his Neurologist, a renowned practitioner in a major Boston children’s hospital.
Her examination resembled a scientific inspection of a petri dish full of interconnected nerves instead of a human moment. Tap this. Pull that. Push here. At the end of it she said my son was “at the same baseline” as he was two appointments ago. “He’s in a fucking wheelchair,” I replied sans the adjective. Her direction was for another full body MRI to detect any change in the spine long cyst running down his back, an exam with a Pediatric Orthopedist and a follow-up with her. Given the backup in the system, the former two dates won’t occur until some time in February. I hope my boy is still walking by then. When I asked her opinion on his recent degeneration, she cited stiffness in his joints related to what she believes is symptomatic of Cerebral Palsy. To that I had to ask her to re-prescribe Physical Therapy. I’m hopeful that bending the boy like a pretzel and getting him riding the stationary bike again will increase his flexibility and strength so walking will be easier. We’ll see.
In Michael Moore’s healthcare documentary, “Sicko,” there’s a reference to a “breakdown in humaneness,” describing our system in the US. I don’t know this doctor personally, and I cannot imagine the psychological impact of treating a parade of patients, many more affected than my Kyle, but doesn’t human connectedness matter in medical treatment? I do think that medical specialization is contributing to the disconnect. In this case, “missing the forest for the trees” is ignoring a young man’s silent fears of losing the ability to walk.