Saturday, January 30, 2016

A gift

We buried my sister Deborah quickly, in accordance with Jewish tradition, two states away in the family plot in New Jersey. A handful of us gathered around the rectangular hole by the graves of grandparents and great aunts and uncles, recited the prayer for the dead, trudged through blowing brown leaves, ate sandwiches at the diner next door, and drove back to Connecticut. My sister Lisa said it felt weird to be leaving her behind. But she won’t really be alone, I said, and we giggled at the idea of Deborah there amidst all those arguing relatives for eternity.

Deborah’s voice, however, wouldn’t be part of the arguments. Born with tuberous sclerosis, which causes benign brain growths and, in her case, seizures and severe intellectual disability, Deborah never learned to speak. For the last 25 years of her life, she lived in a group home in Connecticut, spending most of her time sitting on a favorite brown leather chair, legs tucked under her, eyes focused on nothing in particular.

Deborah was elegant in her own way, slim with thick, shiny, dark hair. In her skinny jeans and Aeropostale sweatshirts, she looked like a pretty teenager even in her 40s. Sometimes she was willing to interact with family, housemates, and caregivers — clapping her hands excitedly in imitation of me or one of my kids, tolerating a game of catch (from her armchair, with a half-deflated yellow basketball), or standing and grasping my forearm en route to the snack cabinet.

Most of the time, she avoided eye contact. Though she’d bend her head down to accept a kiss, she wasn’t comfortable being touched. After one visit involving a chocolate doughnut and some hand holding and ball tossing, my son, then 13, confided in me his belief that if he tried hard enough to connect with her, she’d snap out of it and start talking. I knew that feeling; I’d had it pretty much my whole life.

When, a few days after the burial, Lisa told me she was ready to start planning a memorial service, I balked. It had been an awful few months — really, an awful year — and I wanted to move on. Over the spring, through the summer, and into the fall, an aggressive and ugly cancer had sapped Deborah’s energy, and nobody knew how to interpret her howls and moans. Was this pain? Should we give her more morphine? Was she anxious, or constipated, or hungry? She rattled her primary care doctor, who would call me when something was wrong and talk, doctor to doctor, sparing no grisly detail. One morning, I paced in an empty parking lot in the glaring sun outside a conference center, trying to get cell-phone reception; the doctor’s voice was coming in choppy, something about bleeding and oozing, and I remember feeling a cloud of anxiety expanding painfully in my chest and wondering if this was the beginning of the end. But it wasn’t, for quite a while — until it was.

When home hospice wasn’t enough to ease Deborah’s pain and agitation, we moved her to inpatient hospice. She faded quickly. The muscles of her hands shrank and flattened. She slept a lot, her mouth wide open. Oddly, she seemed more comfortable making eye contact than ever before. Perhaps it was the morphine or the Ativan.

Still, it was hard to imagine how the drugs could sufficiently dull the frustration and puzzlement she must have felt over her inability to get out of bed. Simply grasping a spoon of lemon ice and guiding it to her dry mouth required coordination she no longer had, so we took over — and felt, every time she opened her mouth to accept a proffered spoonful, a faint pulse of joy.

Deborah died on a Saturday morning. When I arrived at the hospice, she was flat on her back, thin hands folded gently and symmetrically at her waist, a flower between them. It all seemed fake. I suspected she hadn’t slipped away so peacefully, and Lisa told me she’d been curled up on her side when she died. I imagined her thin scapula jutting out, face squinched in opiate-blanketed discomfort...

As it turned out, about 30 showed up, and plenty spoke. There was one caregiver who read a lovely acrostic poem she’d written about Deborah, and others who recalled sweet and funny moments from her last few years. There were people who’d worked at Deborah’s group home many years earlier who still thought about her. There was the sister of one of her housemates who said that her sister and Deborah had been best friends. (I’d never realized that Deborah was capable of having a friend.) Her primary care doctor, who had visited her in emergency departments, hospitals, and her home, spoke movingly about how much she had learned in the challenging process of caring for her.

So many people referred to her as a gift. I started to understand that they were talking about selfless love, about how she made people feel good without doing much of anything, simply by being there, sitting on her chair and offering an occasional smile or joyful laugh. With Deborah, there was never an ulterior motive, other than getting someone to hand her an occasional bag of Cheetos.

At the end, a string trio we’d hired played an original arrangement of a Taj Mahal song, “Cakewalk into Town,” that Deborah had always nodded her head to, and it was bouncy and delicate and tentative: “I had the blues so bad one time it put my face in a permanent frown; you know, I’m feeling so much better, I could cakewalk into town.”

The cellist leaned forward, the violinist perched on the edge of her seat, the violist’s eyes were closed, and I closed my eyes, too, swept away by the music and the lightness and pleasure that were so familiar from times I’d spent with my sister.

Anna Reisman, M.D. Gifts. N Engl J Med 2016; 374:208-209
Courtesy of Doximity

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