“We’re just going for a walk down the hill.” As he passed by me, I saw a sense of pride and almost playfulness in the father’s eyes. He seemed to relish going for a walk with his daughter on a beautiful spring day in Achham. I had met his daughter, sixteen years old, on the inpatient ward here a few days before. They had travelled over 36 hours to reach Bayalpata Hospital. She had suffered progressive weakness over the course of a year to the point where she could not walk and where the use of her hands was becoming increasingly difficult. This was the first time she had sought medical attention.
On our examination, she had diffuse spastic paraparesis throughout both her arms and legs, tongue fasiculations, and otherwise normal sensory, cerebellar, and cognitive functions. She had no lymphadenopathy or organomegaly. She was severely wasted from malnutrition. All of this seemed most consistent with an Upper Motor Neuron disease such as an early form of Lou Gehrig’s disease, though definitive diagnosis of that was far beyond the capabilities of our modest lab. X-rays of the spine and lungs, sputum and skin tests for tuberculosis, complete blood counts from our QBC machine, chemistries from our i-Stat machine, liver function tests, ESR, HIV, Hepatitis B, were all unrevealing as to a source. We thus planned to have her seen in Nepalgunj (about fifteen hours away), where she could receive additional testing. The travel and medical costs would surely amount to over a year’s income for his family. Most importantly, given it was quite likely that this was a progressive, relentless condition without specific treatment, she would see a specialist to help fit her for a walker and provide other exercises. For the severely disabled in Far Western Nepal, living—and dying, which appears quite likely in the next few years for her—with dignity is a tragically unjust challenge.
So it was that going for a walk with his daughter meant hoisting her gaunt frame on his back. Watching her father carry her joyfully down the hill, himself barely five feet tall, I thought of the challenges ahead. The bed sores, the pneumonias, the contractures, the frustrations of a body whose muscles are failing—all for a family whose nearest hospital was a day and a half away and who could ultimately offer them so little. I thought, selfishly perhaps, of my own sons, of that sense of wonderment I feel in Anand and Umed when they ride on my back. As he disappeared over the ridge, I could only hope to have the strength of that girl’s father, a man who had given me the honor of being his daughter’s physician for a brief moment in their long walk together.
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Duncan Maru, MD, PhD is the co-founder of Nyaya Health. He is currently a resident in the Internal Medicine – Pediatrics program and fellow in Global Health Equity at Brigham and Women’s Hospital and Children’s Hospital of Boston.
