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Wife's Devotion Helps Husband Conquer
a Debilitating Stroke
At night, I open the window and ask
the moon to come press its
face against mine, breathe into
me. Close the language-door and
open the love-window. The moon
won't use the door, only the window.
-- from "The Soul of Rumi," translated
by Coleman Barks
John Quann remembers sitting in his wheelchair
at the nurses station, waiting for Eileen to arrive. The massive
stroke that nearly killed him had taken away his power to
even pronounce his wife's name. But, with his entire being,
he called her anyway.
"Leen. Leen."
And, day after day, when Eileen Quann arrived
at the rehabilitation center, she saw the face of the man
light up with unspeakable joy.
"If someone had told me when I was
21 years old and a bright, ambitious college graduate that
I would someday be married to a man who had difficulty speaking,
couldn't write and could barely read, I would have lived in
dread. . . . How could I, who placed so much importance in
literacy and education, have believed that this man would
be my great love?" she writes in "By His Side: Life
and Love After Stroke."
She hopes the book she has published herself
will help other people on this journey.
She and John met in 1982 at a party at Goddard
Space Flight Center. She was 34 and a contractor managing
a team of software developers. He was 45 and deputy director
at Goddard. When they married 2 1/2 years later, it was a
second marriage for each of them. Both had grown up in big
Catholic families. Both were veterans of balancing single
parenthood and careers.
They were funny, smart and fiercely independent.
It seemed when they argued, it was about who was in control.
When Eileen's two sons became teenagers, life became particularly
tense, but their marriage survived. Each poured a tremendous
amount of energy into work. Eileen had started her software
training company, Fastrak, and John had retired from Goddard
and become vice president of a firm that provided engineering
services to NASA.
As with many couples, they were moving in
their own orbits, taking much for granted -- including each
other -- at the height of their health and power.
Then in 1997, during a visit with his mother
in New York, John suffered a stroke at age 59.
"All of a sudden, I couldn't see, "
John recalled recently at the couple's home in Highland. He
remembers "nothing at all" about the next two weeks.
But those days are scorched into Eileen's
memory as the time that changed everything. From the confusing
call that something was wrong, to her drive to New York the
next morning, feeling mildly inconvenienced, to her shock
in hearing the truth from the doctor.
"We'll know in the next 48 hours if
he will live."
She wondered whether he would awaken, and
if he did, who would he be? Would she spend the rest of her
life sitting by his bedside holding his hand.
"You discover you are both entirely
vulnerable," she said. "All the barriers come down.
You start with absolutely nothing."
John remembers lying still, his hands folded
on his chest. He recalls believing he must be dead as someone
covered him.
Slowly, in the coming days, he would awaken.
But he had suffered a massive intracerebral hemorrhage. Doctors
did not know if he would ever move his right arm or leg again,
or whether he would regain the ability to speak.
Yet Eileen clung to shreds of hope, the
incoherent words John began to mutter, the tiniest movement
of his right foot, the time he tried to slip his fingers under
the cuff of her shirt and stroke her arm.
He spent two weeks at Maimonides Medical
Center in Brooklyn, then he was taken by ambulance to the
Kernan Hospital, a rehabilitation center outside Baltimore
that is owned by the University of Maryland Medical System.
That was where the real work began.
At first, John did not respond to the simplest
oral commands. Eileen was not sure if he knew who he was --
or who she was.
"Did he even know what a wife was?"
she wrote in her book.
"He was so vulnerable, and so trusting.
I wanted to protect him. I looked at John and he smiled. I
smiled back and squeezed his hand. He squeezed mine. We were
in this together."
There were hours of therapy each day, and
Eileen was there.
"I couldn't see, say, read. Couldn't
anything," remembered John. "Eileen helped everything.
Eileen made it perfect."
She wrote a two-page essay for John's team
of therapists about the man he had been. "They needed
to know he was a reader, a writer, a traveller, a biker, a
jogger, a mathematician and an engineer," she wrote.
Making herself a part of the team, she helped
John relearn how to brush his teeth, feed himself. Two weeks
after arriving at Kernan, he was taking his first hesitant
steps. After a month of work, he lifted his right hand.
But the struggle to rescue John's mind turned
out to be far more daunting and complex. John was suffering
from aphasia, a loss of language that can occur when stroke
or injury harms the brain.
The little-known condition affects an estimated
1 million Americans, said Joan Peters, the executive director
of the National Aphasia Association in New York. Some, however,
are never even diagnosed.
At Kernan, John used a combination of words,
gibberish and charades to communicate. When he failed simple
comprehension tasks such as matching a pencil with a picture
of a pencil, Eileen developed new tests just for him.
She made up her own study materials, using
pictures of things he loved such as a bicycle and a satellite.
She told him stories about his travels, a raft on a river,
the Sphinx in Egypt.
Eileen found ways to help John that only
she could, said Charlotte Mitchum, a University of Maryland
speech pathology researcher who got to know the Quanns in
the course of John's recovery.
"They both have such a positive attitude,"
said Mitchum, who spends her days working with people with
aphasia. "If I could just bottle it."
It has been nearly five years since the
stroke, John reminded Eileen on a recent afternoon, as they
relaxed in their ranch house filled with art, fabrics and
antiques collected in their travels. Their two buttery leather
armchairs sat, facing one another.
"You could have been a royal pain in
the neck," she told him, good naturedly. "You had
been in your former days. . . . Suppose all the flaws are
reinforced and the virtues disappear?"
Words still sometimes escape him, but in
their absence, something else has flowered. "When words
are gone, communication becomes elemental," Eileen said.
"John became very physical, needing a lot of physical
contact. It was good for both us."
The careers that used to define themare
gone. John is retired on disability. Eileen has scaled back
her work significantly.
Some stroke survivors struggle with depression,
but John appears to have been spared. "Now everyday I
just. . . ." He had no word for this feeling. So he simply
hummed, very tenderly. "Now every day, I'm absolutely
happy."
Some of his old crotchets return. But when
he and Eileen fuss at each other, they always seem to end
up laughing.
"You yell, I yell, and 30 seconds later
it doesn't stick," she said, grinning. They have both
been softened by the catastrophe, she said. "Your ego
is not there to get bruised.
Each day they live. John is driving again
but mostly doing small errands. Neighbors and the staff of
the post office and grocery store have helped him get back
into his routines. And the Quanns are traveling again, adding
to their collections of fossils, relics, rarities.
On this day, John brings out two small aged
bottles, 75- and 100-year-old balsamic vinegar he bought in
Italy. He carefully pours a teaspoonful and offers it to a
guest.
It is dark sepia, sweet as 100 summers,
with an undertone so poignant it could bring tears to the
eyes. He recalls the trip to the restaurant in Modena where
he bought it.
They communicate with words and silences
in their sunny kitchen.
The pink sticky-notes that she once used
to label objects in the house -- the television, oven, refrigerator
-- are slowly disappearing. There is one left, however, in
the corner of a picture on the wall. It says "aphasia,"
a word they are still both learning: its pain and mystery,
and even its strange gifts.
Eileen Quann is selling her
book, "By His Side: Life and Love After Stroke,"
on her Web site, www.fastrak.com. It is also available at www.amazon.com.
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