LymeBlog - BETH'S QUEST: Family crusades against Lyme disease

BETH'S QUEST: Family crusades against Lyme disease
The Newport Daily News, RI USA
By M. Catherine Callahan/Daily News staff

NEWPORT, RI - Rod Bowley took a deep breath and, for the first time, shared with strangers the story that has both devastated and motivated his family.

"It's a story about a young woman who realized the American dream," he began.

She had a storybook marriage, with a new house in the suburbs, a swimming pool in the backyard and two cars in the garage. She and her husband each had a good-paying career and, more importantly, a son in college who was a great kid and an All-American class athlete.

"And then, excuse the use of an old gambler's term, up jumped the devil," Bowley said. "In this case, the devil was a damn little tick that one can hardly see."

The tick bit the woman and she contracted Lyme disease, which went undiagnosed and misdiagnosed for years. It had worked its way into her nervous system by the time doctors figured out what was causing the crippling pain and the physical and emotional deterioration that made her give up her teaching job and robbed her of the ability to run, to knit or to be the mother and the wife she had worked so hard to become.

"In short, her life was in a complete and utter shambles, just because of that little tick," Bowley said. "Her life ended when she was 46 years old; 12 years after the tick bite."

Photo: Provided
Rod Bowley took a deep breath and, for the first time, shared with strangers the story that has both devastated and motivated his family.

Photo: Provided
Stacey Yarrow of Middletown serves as director of the foundation that bears her older sister's name.

It is the story of Beth Bowley Coen, a beloved teacher, a runner and fitness enthusiast, an advocate for the unwanted, a confidante of the troubled and a friend to the lonely.

She was the mother of Liam Coen, the starting quarterback at the University of Massachusetts, the wife of Tim Coen, a successful college and high school football coach, and the daughter of Bowley, who has started a nonprofit foundation in her memory that is dedicated to promoting Lyme disease awareness and prevention.

It is called Beth's Quest.

"We're carrying on Beth's work," Bowley said. "It was her quest to bring Lyme disease awareness and prevention to the public."

Stacey Yarrow of Middletown serves as director of the foundation that bears her older sister's name. Yarrow and her father have put together a 30-minute program and a 10-page pamphlet that provides information about detecting and removing deer ticks, recognizing the symptoms of Lyme disease and tips to prevent the bacterial infection that is transmitted by deer tick bites.

Yarrow and Bowley are eager to take the presentation anywhere people would be interested in hearing it. They emphasize that they ...

have no medical background and are hoping that someone from the medical and/or scientific community will join the quest.

Their goal is to eliminate the pain and the suffering that Coen endured before her death, by prescription medication, in January 2006.

"She chose to end it," Yarrow said.

"In the end, she was pretty much confined to her bed," Bowley said. "It took the biggest toll on Beth because she felt she was a burden to the family."

It is difficult for Coen's family to talk about how she died. They prefer to focus on how she lived before Lyme disease stripped her of her physical and mental health.

She was a history teacher at South Kingstown High School and was on a teaching retreat on Nantucket when a tick bit her in 1993. A colleague noticed the telltale red bull's eye rash on Coen's neck as they drove home.

Coen saw a doctor who prescribed an oral antibiotic. She was fine for a year or two, but then began the chronic sinus infections, migraine headaches, night sweats and muscle spasms.

"What it actually was was the Lyme disease, and she'd have swelling and muscle spasms in the sinus region," Yarrow said.

One spasm was so severe it broke Coen's jaw, her father said. Other spasms wracked her body so violently that her ribs were twisted out of alignment, Yarrow said.

Coen searched for answers and over the years was misdiagnosed with fibromyalgia, chronic fatigue syndrome and other illnesses. Several doctors told her she was crazy, Yarrow said.

"That's the problem with Lyme disease, it disguises itself in so many ways," Bowley said.

She tried yoga and Reiki, a Japanese technique for stress relief and relaxation that promotes healing, to ease the constant pain. Even the prescribed OxyContin and Vicodin were unable to ease her suffering, family members said.

In 2003, an infectious disease specialist in tick-borne illnesses diagnosed Coen with Lyme disease. But the decade of disease had taken a terrible toll.

"The young woman who used to run marathons was confined to her bedroom, her body wracked with terrible pain," Bowley told the audience gathered at the Florence Gray Center on Tuesday night. "The young woman who had a master's degree couldn't even go to the grocery store any more because she couldn't remember how to make change for a dollar. The young woman who taught history in high school couldn't remember to take her medication because she had no concept of time."

Unable to continue teaching, the woman who had spent years helping kids challenged by substance abuse, pregnancy, abuse, abandonment and other serious problems felt helpless and hopeless. She couldn't do any of the things that she loved to do such as knitting and reading because she couldn't keep count of the stitches or follow the words on the page. Her moods were erratic, and her perception, memory and judgment were altered.

"Family relationships became strained," Bowley said. "Regardless of how close a family can be, long-term illness takes its toll."

Coen's family members mourn her and remember her with great love. Beth's Quest is their attempt to honor her and to save others from experiencing her suffering and their grief.

"We'll go anywhere at any time," Bowley said. "We don't want to see anyone else go through this."

LEARN MORE

Anyone interested in having representatives from Beth's Quest speak to a community, church or school group may contact Rod Bowley at RPBESQ176@aol.com. The presentation is free.

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