Sunday, July 15, 2018

Taking the Stage for Aphasia

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Show Me The Booster Box

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From the StrokeConnection Archives
BY MARY JO SANTO PIETRO, PH.D., CCC-SLP

John Daggan, now 62, was out running one day in 2009 near his home in Staten Island, New York, when he had a stroke. As he tells it now, somewhat haltingly due to his aphasia: “I was running, running here, and then falling down. And I said, ‘Hmm. That’s weird.’ . . . And doctor said, ‘It’s going to be fine. It’s okay. You’ll be down . . . five or six days, tops.’ And I said, ‘Oh. Okay.’ Drugs were really good. But then another one! And then it’s . . . bad. And I have a-a-aphasia.”

Life stopped. John could hardly speak; his right side was paralyzed. He could not return to work. He could no longer manage his role as an archivist in the Lutheran Church, nor talk with his kids and grandkids. His wife, Jeanie, her innate effervescence drained, continued to work at their gourmet wine shop, but life would never be the same. The following year, John and Jeanie enrolled in the Kean University Center for Communication Disorders in Union, New Jersey, where John would work to overcome his aphasia, and Jeanie would attend the caregivers support group. It was an uphill battle. As John described it, “Well at first, I was. . . I was out of luck. Just ‘Hi . . . hi, how are you?’ . . . Words were just terrible. But slowly and surely, it’s coming back.”

The center operates on a “life-participation” model. Clients with aphasia work individually with graduate student speech-language therapists and participate in group activities with other people with aphasia, as well as with their families, in special events and projects.

During one summer session, John and his student clinician, Shenee, worked on documenting and writing John’s life story. In the process, Shenee discovered something about John that did not appear in his medical records: He had earned an MFA from the University of North Carolina, and in his youth, he had been a successful actor in New York, a card-carrying member of Actors Equity, the prestigious union of professional actors. John had done three seasons of summer stock at the Indiana Repertory Theater, and he and Jeanie had both done summer stock in New Hampshire. John brought his professional actor’s “head shot” and resume to show Shenee, along with several photos and programs from productions in which he had performed. Everyone at the center was impressed.

Not long after that biography was completed, John got a motorized scooter. And while Jeanie was at work at the wine shop, John began embarking on long trips to Manhattan to get out of the house and visit old haunts. The trips were arduous. He first took a bus across Staten Island to the Staten Island ferry terminal, then rode the ferry to lower Manhattan, where he could catch the subway from Whitehall Street to Times Square. The trip took about two hours each way. Jeanie worried, but John felt alive. He often stopped for a beer on the way home.

As John tells it, one day while he was riding his scooter through Times Square, he noticed he was outside the headquarters of Actors Equity. On a whim, he decided to take the elevator up to their offices to see whether his name might still be on Equity’s membership roll. Although his aphasia made communication difficult, he found out that he was, indeed, still listed as an “inactive member” and that he was still eligible to audition for Equity productions, if he were so inclined.
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On the two-hour trip home, an idea took shape in John’s head: He was planning to go to the next open audition for a Broadway play.
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Thanking the woman at the desk, John stopped to get a bite in the Equity cafeteria and enjoy the sound of the show business chat before he headed back to Staten Island. At the time, he thought, ‘These people don’t have any idea what aphasia is. Two million people in this country have aphasia after their strokes. It could happen to any of these folks, and nobody even knows what it is.’

On the two-hour trip home, an idea took shape in his head. When he got back to his new speech therapist, Allison, the following week, John told her he wanted some help in writing and memorizing an audition script. After checking the listings of auditions on the Actors Equity website, he explained that he was planning to go to the next “open audition” for a Broadway play.
Open auditions in New York have been dubbed “cattle calls” because scores of Broadway hopefuls line up for blocks early in the morning, often in the freezing cold or pouring rain, just to sign up for an appointed audition time later in the day. Anyone with an Equity card is entitled to a five-minute audition. Did John think that five years after a severe stroke, still limping with a cane and struggling with aphasia, he was going to score a part in a Broadway show? Of course not, but maybe, just maybe, he could take the opportunity to educate people in the public eye about aphasia.

“Script therapy” is an evidence-based communication treatment frequently employed for persons with Broca’s (expressive) aphasia, so while Allison was not too sure about the purpose of John’s mission, she was happy to help him write and practice the script. 

The final product went like this:

Seven years ago, I had a stroke.

I was running and then I fell down.

I said, “This is odd.”

I collapsed in the park.

When I got to the hospital, the doctors said, “It’s okay.

Everything is fine. You’ll be home in five or six days.”

And I was thinking, ‘Okay.’

But then I had a big stroke. It was bad. Very bad.

Jeannie, my wife, cried. And I cried, too.

My first words were, “Damn, damn, damn, damn.”

The nurse said, “Oh, he’s going to be bad. He’s going to have a feeding tube.”

My second words were, “No, no, no, no, no!”

Then there was a long road ahead of me, a long process to recovery.

I now have limited movement on my right side.

My legs and arms on one side are now dead. Oh well.

I am getting better, but slowly.

And as a result of the stroke, I now have aphasia.

You’ve probably never seen it. Right?

Aphasia. It’s a language disorder. Your words are muddled up.

But then I found Kean University in New Jersey.

It has an excellent program in aphasia. Words are coming back — amazing.

And well, that’s it. Thank you very much for this. Thank you.

John’s first audition required a long wait in line outdoors early in the morning in order to sign in, and a return for the actual audition late in the afternoon. Given his four-hour round trip to Staten Island, it was an exhausting day, but John returned home triumphant. The next day, everyone here at the center was amazed at his determination. “How did it go?” everyone wanted to know. “Amazing!” was the gleeful answer. He was absolutely delighted with his personal effort to spread the word about aphasia.

As of this writing, John has performed his script at more than a dozen Equity auditions in New York and three more at the State theatres in New Brunswick, New Jersey, an 11-hour round trip by public transport from Staten Island. The reactions of directors, playwrights and casting directors have been varied. “Sometimes they just sit there totally shocked!” John said. “Sometimes they are silent and look dumbfounded, and sometimes they are very interested in what I’m saying. It’s great!” The satisfied smile on that handsome face says it all. This ambassador for persons with aphasia has succeeded in his mission. Take a bow, John Daggan.
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