Read Knocking on Heaven's Door: The Path to a Better Way of Death Online
Authors: Katy Butler
Tags: #Non-Fiction
He told me about shooting a coiled, hissing, poisonous snake
called a puff adder in the rocky foothills, about putting a loud
but harmless homemade bomb on the Cradock railroad tracks,
about breaking both arms slipping from a homemade trapeze
that his father, who ran the town’s struggling daily newspaper,
hung from a backyard pear tree. He bought me
Oliver Twist
and
the African adventure novels of H. Rider Haggard.
He gave me the Christmas presents he’d yearned for as the
youngest of five children growing up in the Depression: a Lionel
train set, a working model steam engine, and a tiny airplane with
a high-pitched motor that flew on a wire The love he showed me
settled deep in my heart and marrow, in a place far below thought.
In the evenings we would lie on the carpet before the fire,
and I would touch the scars on his cheek, his calf, the back of
his hand—his body a map that I loved to make him explain.
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“Tell me the story,” I’d say, “how you lost your arm.”
During the Second World War in Italy, he’d volunteered for
armed reconnaissance, seeking out and destroying small pock-
ets of retreating Germans as the Allies fought their way up the
Italian boot. A shell burst over his foxhole in the mountains near
Siena. Shrapnel hit his head and both hands, and his left arm
was shredded. After he came to—and here my father would
raise his one hand, his fingers splayed out in the firelight—the
first thing he did was reach for his gun.
“It was then,” he would say, “that I knew I was a man.”
In a field hospital set up in an Italian farmhouse with a red
canvas cross on the roof, my father’s left arm turned black with
gangrene. They weren’t sure he’d live through the night. A mor-
tar hit the roof. Before he passed out, a shower of white dust fell
from the rafters onto his face.
Doctors amputated his left arm at the shoulder and saved
his life.
To fight the infections coursing through his bloodstream, they
shot him full of a miraculous new drug first discovered in London
in the 1920s but not widely deployed until the Second World
War, when American and British scientists and military person-
nel teamed up to manufacture it on a mass scale, using a hardy
“mother” mold discovered on a rotting melon in a market in Peo-
ria, Illinois. I never heard my father thank God for his miraculous
survival. He thanked Sir Alexander Fleming and penicillin.
Now we were thousands of miles and decades away from South
Africa, England, and Italy. The medical advances that saved
him as a twenty-one-year-old had once again been deployed.
But how far could miracles reach? The man who taught me how
to take a bath would never again take one on his own. The man
who taught me to revel in words and stories could not speak.
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An orderly walked into the room: a short, squat man in his
fifties with longish hair, a belly pushing against his green V-neck
hospital scrubs, and a blurred blue anchor on his right bicep. He
carried a can of foam, a plastic bowl half full of warm water, a
disposable razor, and a hand towel. After nodding to my mother
and me, he sat down on a plastic chair, perpendicular to my
father’s wheelchair, and looked at his face.
He did not banter, talk down, or coo. He pressed white
lather into the palm of one hand and softly daubed my father’s
ruddy cheek. He held my father’s chin and stroked his razor up
that cheek with tenderness. He took all the time in the world.
He paid close attention to what he was doing and invested the
moment, the room, with a presence I can only call sacred.
The hospital may well have saved my father’s life with thou-
sands of dollars’ worth of oxygen, liquid nourishment, saline,
X-rays, intravenous lines, feeding tubes, barium-swallowing tests,
catheters, and other sophisticated treatments and diagnostics.
Now I watched someone tenderly touch him.
Fearful of the notorious impersonality of modern hospitals,
I’d taped family photographs above my father’s bed to make
sure nurses knew we cared what happened to him. My South
African mother told everyone who entered the room that her
husband lost his arm in the Second World War—“fighting for
Demaacracy,” she’d say ironically, in a broad American accent,
as she was fighting for his dignity now. But the orderly did not
need family photographs or a war history to treat my father with
reverence. We were in an oasis of caring, everything the modern
hospital aspires to be and rarely is. And I was learning, from a
fat man with a tattoo whose name I didn’t know, how to love my
helpless, broken, and infinitely slowly dying father.
My mother twisted her hands in her lap and sat, uncharac-
teristically quiet. Among the photographs I’d stuck above the
bed was a family favorite, taken in 1946, of her and my father
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katy butler
on a playing field at Rhodes University in South Africa’s Eastern
Cape. She was twenty-two in the photograph, and he was twenty-
four. It was taken only a few months before they walked out of
the Grahamstown church together, all dressed up and grinning,
with her white veil thrown back and his black hair flecked with
confetti and rice. Two years before they sailed away to England
with me in a bassinet, and more than a decade before they sailed
the Atlantic, this time towing three young kids, relying mainly on
each other and their own guts to build a successful, even elegant,
American émigré life. In the photo, they were both buttoned into
my father’s army overcoat, as though he were the mother kanga-
roo and she the baby. They had not yet bickered and shouted and
taken each other for granted and quietly contemplated divorce
and seen each other through disappointments and softened and
reconciled. They were laughing. My mother was barefoot. She
had just won a footrace, and it was starting to rain.
The orderly dipped his razor into the water.
In the early 1970s, after graduating from Wesleyan, I’d given up
my shared rented apartment and driven cross-country to Cali-
fornia, part of the great baby-boom diaspora from small towns
to cities on the coasts. I was doing what generations of middle-
class children have done since the Industrial Revolution: going
off to seek my fortune, forgetting that blood is thicker than
water, and not looking back. By then, my father and I had long
been estranged, our easy early intimacy lost to years of fights
over my undone homework and messy bedroom and his bad
temper and expectations, never met, that I get straight A’s.
Desperate to become a writer, I landed in San Francisco
chasing the success I secretly hoped would make him proud
and that I was sure would elude me as long as I remained within
the force field of his baleful doomsaying. I wrote for an alterna-
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tive weekly and then for the
San Francisco Chronicle,
the big
morning daily. Twelve years later I quit to freelance for maga-
zines. I married and divorced. I made my own life. I visited my
parents once a year, and sometimes not even that often.
Of course we kept in touch. When I was still in my twenties, my
father wrote me a remorseful letter acknowledging that not long
after we‘d come to America, he’d “become insanely ambitious for
you and let all the love go out of the relationship.” Our edges soft-
ened. He lent me half the down payment for my first San Francisco
house. On my birthday, he would write me tender, formal, almost
Victorian letters. Several times a year, I would send him articles I’d
written, like a teenager still yearning for Daddy’s approval.
Every March, after teaching a writing workshop in Washing-
ton DC, I would take the Amtrak Acela north and be picked up
by my parents in New Haven. When it was warm enough, my
father and I would linger over breakfast on the deck beneath a
lattice of pale green, unfurling Dutchman’s pipe vines, parrying
happily over something in that morning’s
New York Times
while
my mother washed the dishes
.
We’d duck and dart behind walls
of words. Often I wasn’t sure what he really thought.
The rest of the time, I was comfortable loving my parents from
a distance.
The orderly asked my father to turn his cheek.
As my father turned his head, his eyes caught the glossy
stitching of the red chenille sweater I was wearing, bought at
a secondhand store. It was the kind of visual detail he’d rarely
noticed when his powerful, professorial left brain was intact.
The stroke had stripped away our shared vocabulary of
oblique love along with his capacity to speak. In the years to
come, I would express my love for him less in words than in
acts. And as my father cast off the husks of his old life, I found
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myself overwhelmed by a deep underwater love rising from
depths I was just beginning to plumb.
Finding the right word for one of the first times since the
stroke, he said, “Beautiful.”
Later that day, or early the next—I don’t remember—the hos-
pital’s “discharge planner” told us that my father had to be
transferred to a center for neurological rehabilitation at once.
Only later would I understand the rush: the hospital was los-
ing money on him with every passing day. Out of $20,228 in
services performed and billed, Medicare would reimburse Mid-
dlesex Memorial only $6,559, a lump sum based on the sever-
ity of my father’s stroke diagnosis. (Such losses are absorbed
by charitable donations and, in what is known as cost-shifting,
revenue from more profitable departments and better-insured
patients.) This lump-sum system, known as the DRG (for diag-
nosis-related group) was instituted in the 1980s during a period
of rapid medical inflation to force hospitals to control costs. But
it also incentivized rapid discharges, turned patients into items
on conveyor belts, and eroded the hospital’s traditional role as a
place for nursing, convalescence, and healing.
I drove my mother to the closest place with an available bed,
a high-rise rehab center in the poor city of New Britain. In a
panicked rush, she accepted it—the first but not the last snap
decision she would make in her new role as my father’s medical
guardian. We followed my father’s ambulance there and ner-
vously watched the orderlies unload him. I was terrified he’d
somehow shatter, like a cracked glass.
The place had been recommended by Dr. Fales, my parents’
internist. The TV blared in the day room all day, there was no
access to the natural world, and my father, who was spontane-
ously recovering some speech, strung together enough words to
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tell my mother vehemently, “Get me the
hell
out of here.” She and I drove south to Gaylord Rehabilitation Institute in rural Walling-ford, and my hopes lifted when we toured its leafy campus, with
its Disney-like indoor “Main Street” where the brain-damaged
could practice buying apples or toothpaste or simply walking in a
straightish line holding onto a rail. In 1989, six months of intense
rehabilitation at Gaylord had helped a young Salomon Brothers
investment banker, whom the newspapers called the Central
Park Jogger, learn to walk and speak again after her skull was
bashed in with a brick.
Perhaps my father, too, could be fixed.
I was thinking in confused ways then. First I’d fantasize
about sending for Berlitz language-immersion tapes and drilling
my father until he could speak and understand English again.
Then I’d hope he’d have another stroke and die. The one sce-
nario I didn’t consider was the likely one, spelled out for us in a
brochure from Gaylord: stroke victims tend to improve rapidly
for about a year and then the gains taper off. They live, on aver-
age, with varying degrees of disability, for another seven.
Gaylord had no empty bed.
I sprang into action like the reporter I was, like the man my
father had been, and like the substitute husband my mother now
needed. I spun her Rolodex. I negotiated with a social worker at
the New Britain rehab. My mother called a friend whose former
husband was on the Gaylord board and whose daughter was
a doctor. I called the daughter. We begged. We waited. I said
we’d cover whatever charges Medicare wouldn’t pay. It gave us
something to do. We thought we were making a difference. It
was just about the only way we could show our love.