More MS news articles for Jan 2002

Left Unspoken

http://www.charlotte.com/

Jan   17,  2002
By SUSAN KINZIE, Staff Writer

CARY - Erick Polsky used to be the quiet one. He would come home from another long day at work at an energy software company and his wife would chatter away. She'd tell him about her day, about funny things people did at her office or, after their son, Benjamin, was born, what the baby did that morning.

But before she had even turned 30, Rachel Polsky lost her words.

It began just before Halloween in 1998, when she started having trouble remembering things; it felt like words were at the tip of her tongue. Her brother-in-law was visiting and she couldn't think of his name. The next day, her vision was blurred and Erick took her to the emergency room. In the next few days, she got worse and worse. She couldn't see. She couldn't move. She couldn't talk.

Erick thought she was going to die. But after a few days she began to get better, regaining her vision and some movement. Her husband stayed at the hospital with her for weeks, holding her foot when they slid her into the MRI machine because he couldn't hold her hand.

Doctors soon figured out Rachel had brain damage, but they couldn't figure out why. She couldn't talk, but she understood everything. Still, when the doctors and nurses came into her room, they always addressed Erick. "For two months in the hospital it was like she didn't exist," he said.

Rachel, the doctors finally determined, had multiple sclerosis -- a disease she didn't know she had until it almost killed her. The attack left her with aphasia, a language disorder caused by brain damage that leaves her able to understand everything around her, but often unable to find words to express herself. In the three years since the attack, she has learned to walk again, to drive, to take care of Ben. But the aphasia lingers, and that's what cuts her off from others.

"I can't talk," she said recently, half laughing at herself, but with a little tremble to her mouth. "I can't talk."

More than a million people in the United States have some form of aphasia, most of them stroke victims. It varies depending on how badly the brain was damaged and where; some people have trouble understanding speech, producing words or stringing together a coherent sentence. Some people are unable to speak at all. Some chatter away in nonsense words or make odd patchworks of nouns and verbs. Some have aphasia briefly. But many have it for the rest of their lives.

That often leaves them socially isolated, said Maura English, a speech-language pathologist who just started an aphasia center at Duke University Medical Center to try to prevent that. Strangers may not be able to understand them at all, and friends and family have to fight to keep the same closeness with someone who can hardly speak.

Erick and Rachel had always understood each other without needing to talk much. Now he needs every bit of that understanding.

The skill of chit-chat lost

Rachel was always bubbly, always talking, always laughing, ever since she was a little girl. Growing up in Ohio, she and her sister, Leah, would make up stories and plays together. They moved so many times with their mom that it seemed like they were always the new kids.

"She got the skill of being able to chit-chat with just about anybody," Leah Breckstein said. The echo of Rachel's voice is in her sister's -- giggly, the words tumbling over one another, story after story.

Rachel Breckstein met Erick Polsky at Kent State University, and within a week they were talking about getting married.

"We just knew," he said.

And after 10 years together, after they'd volunteered on a crisis hot line, graduated from college, backpacked all over Europe, swam with octopuses in Greece, moved to North Carolina and started a family, they didn't need to talk to understand each other. "I knew what she was thinking by the way she looked at something," he said.

By the time his wife received the diagnosis of MS, after weeks of tests, Erick Polsky had turned their whole world around. He sold their two-story house and bought and renovated a one-story home in Cary, ripping out the shag carpet, adding a wheelchair ramp to the front. He found day care for Ben, who turned 1 while Rachel was in the hospital.

Rachel came home. She could only say yes and no.

At first it was pretty horrible, her husband said. They still didn't know many people in North Carolina, and suddenly he felt isolated. And instead of feeling like best friends, husband and wife, it was more like nurse and patient for a while.

"So ... frustrating," she said, her fists clenched. "I ... can't stand it."

Suddenly he, with the help of their family, was the one taking care of Ben, the one paying the bills, the one making plans. He had to become more outgoing, more of a talker, to make up for her silence.

But slowly, with speech therapy, she was making progress, stringing words together. Sometimes she surprised everyone by smoothly rolling out a phrase; sometimes she seemed to go backward.

She made mistakes that seemed bizarre. "There'd be a glass of milk there," Erick said, "and she'd say, 'Oh, can I have a sip of rutabaga?'"

Once, after the exterminator came, she started to write a check to pay him but couldn't think of the word "fifty."

But over time, she was becoming easier and easier to understand.

At first it really helped her to sing; for some reason, if she was stuck on a word, Erick could warble the question and she might be able to sing a response that she couldn't say. Then she learned to trace words with her finger -- called skywriting --in the air in front of her and to read the letters as she went.

After a while she began volunteering at the library in Cameron Village to get out of the house, be around people, feel helpful again instead of helpless.

One day she went -- on her own -- to the store next door to buy a bottle of water. "That was a big deal," he said. She was terrified. They couldn't understand her. They thought she was weird.

But she got the water.

Back to chit-chat

The Polskys' insurance covers limited speech therapy, but now they're going to inexpensive weekly group sessions at the new aphasia center at Duke University Medical Center. Erick likes it because it's the first speech therapy they have done that didn't offer just one technique as the solution -- lots of techniques have helped them.

He has become much better at understanding her limited words. So have their friends and family. Recently her sister, while trying to figure out what Rachel was trying to tell her, realized with delight, "Oh, you just want to chit-chat!"

There are still serious hurdles ahead: She would like to be able to work again, someday. She wants to be able to speak well enough that Ben understands her as well as his father. She'd like to just be able to answer the phone without fear.

But she and Erick have overcome the scariest challenge: To not lose each other to silence. And in strange and unexpected ways, the lack of words has even helped them understand each other better.

Erick was always a good listener, but now he has learned to listen to what she doesn't say as much as what she does.

"The hardest thing is now I have to do both sides of the argument," he said. "If I want to go to Disney World and she wants to go to Canada, I have to give her side." Even when she agrees with him, he second-guesses her, wondering if she's just nodding because it's easier than arguing.

"We've had to become more honest with each other about stuff," he said, "because miscommunication is so much easier to have now."

Erick has learned from the aphasia group at Duke to ask Rachel yes-no questions when he can, double-check the answer to make sure he's not getting it wrong, and not interrupt all the time to guess at what she means -- that drives her crazy. But now they can have conversations that go way beyond yes and no, too.

"3D," she said.

That's what they used to call their deep conversations. They can do that, now, though they have to plan it.

"A long time," she said.

"We have to get someone to take Ben to the movies to have a solid block of time," he said.

The details aren't so important anymore.

"Concepts," she said, drawing circles around her head. "I used to say. Um. The words ... make the meaning. Um. Concepts."

What she means is it's the big picture that matters, and that looks pretty good right now, despite it all. Erick has completely rearranged his life -- instead of working 80-hour weeks he comes home early to see Rachel and Ben.

"A lot of change," she said.

There is a long pause. "Together time -- is -- lot of fun."

She pointed to her husband. "September. To mountains."

They went camping, he explained.

"Yeah," she said, nodding. "A lot of fun."

"We lived here for years and never went camping 'til Rachel was sick," he said.

"It's good," she said. "It's all good."

Erick told the story of how they met, a series of chance meetings in college. "We knew," he said, and she smiled.

"Long time from now," she said.

She shook her head. Wrong word.

"Ago. Whatever."

"Whatever," her husband said, and they both laughed. He knew just what she meant.

Staff writer Susan Kinzie can be reached at 829-4760
 
 

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