Photo courtesy of Richard Cohen
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Chronically Upbeat
After a Stroke, a Song?
By Richard M. Cohen, October 2009
The Emmy-winning TV producer and author writes about living with a chronic illness
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Harvey Alter's voice suggests a man in search of his song. His
speech has a musical tone, but at some moments the words themselves
seem computer-generated, intended simply to spit out thoughts that
make sense. His deeply human laugh begins in his belly when he strains
to say something he knows is funny. But this is a vast improvement.
For Harvey, a 62-year-old criminologist, there used to be only
silence.
His journey began one day in 2003. Harvey was in his Greenwich Village
apartment, putting the leash on his dog in preparation for their
ritual morning stroll around the neighborhood. "Suddenly, I was
disoriented and felt dizzy," he remembers. "I stumbled and
tried to gain control, but couldn't." Harvey was having a
stroke.
Each year, about 795,000 Americans suffer a stroke, and more than
143,000 of those people die. But even for survivors, stroke puts
everything they know at risk—their identity and skills, their
dreams. Harvey's very ability to think, all that rests in his
mind, was in peril that day.
There were workmen in the apartment when it happened. "I tried to
say, 'Help me,' but my speech was gone," Harvey recalls.
"I tried to say, 'Call 911,'" he says. "I
pointed to the phone. I think there was desperation in my eyes."
It seemed to take forever to convince the workmen, who spoke only
Spanish, to do something. Anything. At first, they thought he was
crazy.
Harvey thought of the warning signs of a stroke in progress: a
drooping mouth, uncontrolled movement in the arms, unintelligible
speech. How in the world did he know that? "I give credit to the
media, the talk shows," Harvey says now. "They have taken
time to explain this stuff to us." Recognizing the signs of
stroke in himself, Harvey felt powerless. "I thought I was going
to die," he recalls. "To me, that loss of control meant that
it was a stroke, which equaled death." At the time, his partner
was out of town. Harvey had no advocate—he was alone.
But in a way, each stroke sufferer is alone, he says emotionally:
"So many of us have gone into the Valley of Death. Many of our
brethren did not get out. I am singing to you now, trying to spread
the word." He pauses. Like many people who have experienced
stroke, Harvey has aphasia: a compromised ability to make sense of and
process words. Though some people do recover from this condition, for
many it becomes a lifelong struggle. "I live in the country of
Aphasia," Harvey says. "There is no return. Once you are
there, you're there."
There are two kinds of stroke, ischemic (a clot) and hemorrhagic
(bleeding). Harvey had a clot that blocked the blood flow in the left
side of his brain. This caused paralysis on the right side of his
body. His face drooped on that side. And because the brain's
language center is located on the left, Harvey had difficulty
stringing words together. Mostly, out of frustration, Harvey said
"no."
After two years of difficult therapy that did little to help his
speech, Harvey's therapist at St. Vincent's Hospital asked him to sing. The request seemed
strange: he hardly could talk. But the therapist wanted to try a
technique called melodic intonation therapy. Words usually originate
in the left side of the brain, but music—a magnet for pulling
out words—comes from the right. Harvey began with "Happy
Birthday," and the lyrics began to make sense to him. Harvey was
learning patience, and at last his brain was being trained to adapt.
With much work, he learned to use the rhythms of music to coax out the
words he wanted to say.
Stroke is a leading cause of long-term disability in America. The
journey back to normalcy is arduous and uncertain. To sing loud and
clear—or as close as he could come to that—is what Harvey
did in his desperate effort to find his way home.
Harvey no longer works as a self-employed criminologist. Now he
devotes his life to helping others escape from the country of Aphasia,
running running several support groups at Saint Vincent's Hospital and Marymount College and founding an organization called
the International Aphasia Movement that will provide the latest
information and help to aphasia sufferers by aphasia sufferers.
There is a huge untapped market for such services, and Harvey Alter is
paid precisely nothing to mine it. This is what so many of the
chronically healthy cannot understand about those of us with chronic
illness: how can we muster the energy to serve others when we're
dealing with the same problems ourselves? The answer is that we see so
much suffering around us. We realize there are others much sicker than
we and in need of our help.
I have been asked if I would trade in my MS to be disease-free. I
always answer no. This is who I am, and now I have a job to do that is
more important than any job I have done before. There are no heroes
here, no medals or merit badges. There only are people who care
deeply, flesh and blood like you, individuals who see it all and want
to make life better. Helping others offers its own reward.
Richard M. Cohen is an Emmy-winning TV news producer and author. His column is published on AARP The Magazine Online every two weeks.
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