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Thursday, November 5, 2009

After a Stroke, a Song?

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Chronically Upbeat

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 Stroke Survivor
aphasiamovement@aol.com
Aphasia Support Group
Marymount Aphasia Group
St. Vincent's Aphasia Therapy Group
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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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