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Reconnecting with the world

01:00 AM EDT on Sunday, October 12, 2008

By Arline A. Fleming

Journal Staff Writer

Dan Aubin, of Warwick, helps push Maggie into the van after a church service. The specially equipped van was purchased through private donations.


The Providence Journal / Glenn Osmundson

She could have been any young woman taking a break from a church service, the sun warm on her freckled face.

Instead, Maggie lay back in her tilted wheelchair, eyes closed, except when her mother pushed open her eyelid to ask her a question.

Church friends gathered around Maggie Worthen, touching her hand, saying hello, hugging both Maggie and her mother.

“It all felt so normal,” said Nancy Smith Worthen of the trip to church she took with her 24-year-old daughter, her only child.

There has been little normalcy in these past 28 months, since Maggie stopped talking, walking and functioning on her own, the result of a stroke. It happened in her dorm room at Smith College, a week before she was to graduate, in May 2006. She was alone, writing her final paper.

Since then, there have been near-death moments, and Maggie has moved from one hospital to another, from one nursing facility to another. Major decisions have had to be made on her behalf.

Among them, a decision to purchase a van to take the wheelchair-bound Maggie out into the world, and now a computer sensitive to her eye movements — the hope is that she’ll be able to communicate that way.

Both van and computer have been purchased primarily through donations from strangers who read about Maggie, and from three fundraisers last year. The computer is in the beginning stages of use, and may need adjustments and additional programming to make it right for her, Maggie’s mother said. Meetings have to be arranged with computer specialists, and her speech therapist has to be involved.

Just last week, Worthen learned that her daughter could attend the Boston College Campus School in Chestnut Hill, Mass., to learn how to use computer technology the college has developed “for people like Maggie,” as her mom put it.

Nancy will bring Maggie there weekly. During the first lesson, Maggie was able to control the cursor on the computer with her eye movement and actually played a few games.

Having a wheelchair-equipped van has allowed the mother and daughter to venture away from the nursing facilities and spend a few hours at a park, at home, or at the East Greenwich church they attended.

“This is what people do,” Nancy Worthen said. “Go to church together. It’s motivating.”

MOTIVATING FOR HER, and she feels, for her daughter, who in February was tested at the Neurological Institute at Columbia University Medical Center.

The doctors involved would not speak to a reporter, but Nancy Worthen wrote in an e-mail:

“Maggie has been diagnosed for 18 months as being in a persistent vegetative state. At the same time, I was as certain as I could be without medical evidence that she was conscious.

“So, of course, I wanted to tell the world about her change in diagnosis to ‘at least a minimally conscious state,’ ” with the results of a functional Magnetic Resonance Imaging test, or MRI, indicating that “she is probably at a level better than minimally conscious and in fact is relatively locked in.”

Dr. Douglas I. Katz, an associate professor of neurology at the Boston University School of Medicine, and Maggie’s neurologist, helped Worthen understand the results, she said. “As I understand it, the MRI study explains that specific parts of her brain are working, the areas that understand language and that name things and that control visual perception.”

Worthen said the three days Maggie was in New York City produced a series of reports indicating that her daughter’s brain seems to be functioning “like a normal brain in many ways.”

Katz, in a phone interview, was more cautious. He said that while he is aware of the outcome of the study, “it’s still hard to tell” how aware Maggie actually is and how much she will be able to do in the future.

Katz said he sees her every few months, and that if she “demonstrates consistent MRI responses, then we would have hope. Basically, I’m saying we don’t know.”

WORTHEN RECALLED the first days after her girl was stricken, when doctors in Massachusetts told her to take Maggie off life support, to let her go.

She didn’t take that advice then, or after, as months passed with few signs of a positive outcome.

“I’ve been fighting for Margaret,” said her mother, who is a coordinator of AmeriCorps at Ready to Learn Providence, an agency dedicated to early education.

She’s still fighting as she struggles to understand complicated medical terminology, and now, the technology that may help her communicate with her daughter.

In early July, Worthen said Maggie was able to use her left eye as a computer mouse, shifting her eye to move the cursor in the direction she was asked. Worthen said she felt progress had been made, and will continue to explore emerging technology to help her daughter communicate.

Conducting research into the technology takes time. Testing takes time. Equipment costs money. Worthen said she often feels impatient wanting to see big results, wondering all the while, as she works to earn a living, if she should be doing more.

“Everything takes longer than you expect,” she said, a few days after taking Maggie out to a beach house to visit with cousins.

Earlier in the week, Maggie’s speech therapist, Robyn Fraser, asked her if she wanted to go to the beach. Through eye movement, her mother said, she indicated that yes, she wanted to go to the beach, but no, she didn’t want to go in the water.

The questions that Maggie can answer through yes-or-no eye movements “are limited by our own imaginations,” her mother said.

FRASER IS MAGGIE’S speech language pathologist at the Middleboro Skilled Care Center, in Massachusetts, working with her two to three times a week.

Fraser helped develop the yes-or-no system with Maggie.

“She is unable to open her left eye on her own. We tape it open with medical tape.”

Fraser said Maggie then moves her eye, following an object, or directing it down for yes, and up for no. Maggie is unable to do so with her other eye.

When asked if she thinks Maggie will be able to operate a computer in the coming months, Fraser said, “Absolutely. We will work with her. It’s a long process.”

Maggie is “very motivated to use a computer,” Fraser said.

How does she know?

“Because she participates.”

Some days Maggie doesn’t.

“It’s frustrating. Everyone has those days. You see a person’s potential. Her bad days are when she doesn’t participate.”

NANCY WORTHEN has been asking her daughter questions during the past two years, since the young and healthy woman went silent. Until a few months ago, Worthen felt as she did when she asked her newborn if she felt hungry, or cold, or needed to be changed. There would be no answer.

There is still no answer, not in the way that Margaret Worthen once answered. Smart, athletic, independent, she’d respond smiling, or shouting, or with a determined no.

She played Frisbee, volunteered at the South Kingstown animal shelter, met her high school boyfriend on a Chariho school bus. He became her college boyfriend, too. Josh Guleserian visits her still, and had a lot to do with the fundraiser Mags Wheels, held in June 2007 to purchase the specially equipped van.

Her father, Paul Worthen, of Charlestown, visits her, too. Maggie seems to respond to their voices, Nancy said. The couple have divorced.

“The potential is there,” her father said of the computer. “I’m really excited about it.

“It’s brain activity that will bring my daughter back. That’s what we want.”

Nancy Worthen is grateful for the $35,000 in donations that let her buy the van and put a ramp on the family’s South Kingstown home. She continues to update friends — and all those loving strangers — at her CaringBridge Web site, www.caringbridge.org/visit/margaretworthen

“When I am impatient, I try to look at the positive,” she wrote recently, “and when I do, I am always awed by the progress that Maggie has made.”

A recent visit with young cousins reminded Maggie’s mother that yes, there has been progress. But she said, “It was so sad because before, she would have been taking the boys swimming and kayaking. It’s just so poignant. I find it so hard sometimes.”

ON A SUNDAY morning, Nancy Worthen kissed her daughter’s forehead, picked up her bag, and pushed the wheelchair toward the van. The service at the Westminster Unitarian Church in East Greenwich was over, and the coffee hour and socializing had thinned out.

This mother, like any mother, wants her child to be accepted, to be part of a community, though she is part of it in a way far different from what she once was.

But those who surrounded her at the church, Worthen said, embraced her daughter sensitively. “She was held gently and kindly in the arms of all who were there.”

Nancy Worthen hugged and thanked her church community, promising to return.

Then she drove her daughter back to the Middleboro care center, and Maggie’s mother went home.