front page article from the newport daily news' weekend paper (april 28-29, 2007)
NEWPORT - 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 darn 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."
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 [email protected]. The presentation is free.
Posted by Lymetoo (Member # 743) on :
How terribly terribly sad.
Posted by Kayda (Member # 10565) on :
Hi Lymetoo,
This is a terrible tragedy that never would have happened if drs. had properly diagnosed and treated her.
I commend her family for turning their grief into positive action. They are doing the work I'm sure she longed to do herself.
Kayda
Posted by kayru (Member # 2749) on :
how sad, i don't know what to say, but felt the need to at least recognize this post and the strength and courage of this wonderful family to work hard to make her life meaningful.
peace, kathy
Posted by Tincup (Member # 5829) on :
I just wrote a letter to the editor thanking them for writing this article.. and a letter to the family to let them know I appreciate their efforts and I am sure Beth would be proud of them.
And as always... a prayer.
This breaks my heart.
Posted by Lymeindunkirk (Member # 7118) on :
Everyone should read this.
Posted by klutzo (Member # 5701) on :
This is indeed sad. I know that feeling of being a burden all too well. My heart goes out to her family.
Did anyone else catch that it was an ID doc who finally dx'd her with Lyme?
That jumped off the page at me, since it was the last thing I would expect, considering the attitude of the IDSA.
Klutzo
Posted by Kayda (Member # 10565) on :
Hi,
This really got to me. I'm her same age and I know I have Lyme in my heart, brain and CNS. I've spent a year bed-ridden, suffering in horrible pain and muscle spasms that felt like post-surgical pain without medication.
I'm doing all kinds of stuff to strengthen my body, but I've yet to be put on antibiotics. the dr. says I'm too sick to handle what would happen.
I don't want to die. I want to live for my family! They need me!
Kayda
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by klutzo: Did anyone else catch that it was an ID doc who finally dx'd her with Lyme?
It may have been Dr D who dxd her. An LLMD.
Posted by DolphinLady (Member # 6275) on :
So heartbreaking.
Posted by Tincup (Member # 5829) on :
Kayda...
You said... "I don't want to die. I want to live for my family! They need me!"
You are not going to die from this, I know. You will get help. Hang in there.
TC
Posted by 5dana8 (Member # 7935) on :
This is so tragic & my prayers go out to the family Posted by Kayda (Member # 10565) on :
Hi Tincup,
I know you know alot about Lyme, so your words mean a lot. I sure hope you're right.......
Each time I see my LLMD, I ask about antibiotics. Each time he says, "No, you're too sick, you've too many allergies, you're too weak or x,y,z"
It's been 2 years since I got my diagnosis (I'm CDC positive). Been sick for years.
Kayda
Posted by Katcon (Member # 9812) on :
I sent this to all my friends and family, asking for prayer for this family, also to remind them and be aware of the signs and symptoms of lyme disease.
This is truly heartbreaking. Somedays I pray for the courage to deal with disease another day, this story sounds all too familiar.
![[Frown]](frown.gif)