The Hedgehog Review

The Hedgehog Review: Vol. 20 No. 3 (Fall 2018)

Neglected in the House of Medicine

Justin Mutter

The Hedgehog Review

The Hedgehog Review: Fall 2018

(Volume 20 | Issue 3)

“The White Coats Are Coming,” he announced with a wry smile. A fitting title for his book, I thought, but then found myself looking down at my own white coat, wishing I hadn’t worn it to my clinic today. Noticing my discomfort, he added kindly, “Well, I’ll have to write a different…thingy…for you.” I breathed an inaudible sigh of relief, and smiled back. I was off the hook. Maybe. When Tom, as I’ll call him, said “thingy,” he meant “another chapter in my book,” but in the course of trying to speak, had been unable to find the right words. He was fighting a condition known as primary progressive aphasia, most likely attributable to an early stage of dementia. Though he was gradually losing command of his words, Tom had decided to write a book about his experience with the health care system. Not to be sidelined by his illness, he had set a goal of finishing the book before further decline in language made it impossible. He had a story to tell.

It is a familiar one. Faced with complex cognitive and psychological symptoms, and increasingly unable to work, Tom had hopped from doctor to doctor, white coat to white coat. Tests were ordered. Lab samples were drawn, again and again. Neurological imaging was obtained, and even a spinal tap was performed. All of this was inconclusive. Tom’s clinical signs and symptoms were somewhat atypical. Neurologists thought the underlying cause was psychiatric; psychiatrists thought it was neurological. Because no one would offer him a clear diagnosis, he couldn’t qualify for disability services. At sixty-two—just when he had expected to be winding down a career and finalizing retirement plans—he had instead found himself jobless, plagued by economic hardship. Not yet Medicare eligible, he had been paying an extraordinary monthly sum for two years to maintain his health insurance under the Consolidated Omnibus Reconciliation Act (better known to those who have had to seek recourse to it by its distressing acronym, COBRA). By the time I met him, Tom hadn’t been back to see a doctor in nearly a year. Exhausted from being guided in different directions, his financial resources drained by a mountain of medical bills, he had decided to get off the medical map. But when his disorder progressed, he warily returned to the house of medicine.

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Justin Mutter is a fellow at the Institute for Advanced Studies in Culture and assistant professor of geriatric medicine and faculty.

Reprinted from The Hedgehog Review 20.3 (Fall 2018). This essay may not be resold, reprinted, or redistributed for compensation of any kind without prior written permission. Please contact The Hedgehog Review for further details.

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