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Living with ALS: Bennington parishioner trusts in God's plan for her life

Kathy Keenan and her husband, Dr. James Keenan, pose in their Bennington home. She lives with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease, but that has not stopped her participation in the life of her parish, Sacred Heart St. Francis de Sales in Bennington. Photo by Cori Fugere Urban Kathy Keenan and her husband, Dr. James Keenan, pose in their Bennington home. She lives with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease, but that has not stopped her participation in the life of her parish, Sacred Heart St. Francis de Sales in Bennington.
BENNINGTON—Kathy Keenan is almost poetic when she reflects on the disease that has changed her life: “Why me! Why not me? I never blamed God. I felt God was using me. He had a plan…. Is it a coincidence or God’s plan? Why me or why not me. I never blamed God.”
 
These are words that came not from her lips or even from her fingers typing on a keyboard.
 
They came from her eyes, her sparkling brown eyes.
 
Mrs. Keenan, 53, has ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease. It is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe.
 
Mrs. Keenan, a parishioner of Sacred Heart St. Francis de Sales Church in Bennington, uses a motorized wheelchair and has difficulty speaking. She often communicates with the help of Eye Gaze technology on a Tobii Dynavox computer donated by the Gleason Foundation in New Orleans. It looks like a computer monitor on a stand.
 
She can sit in her wheelchair at her kitchen table, computer at eye level in front of her. All she has to do is look at the part of the screen she wants to activate – like email, texting, Kindle or computerized voice.
 
This cutting-edge technology allows her continued involvement in parish life.
 
Mrs. Keenan schedules the altar servers using her Tobii Dynavox. But more than letting them know when it is their turn to serve, she ensures coverage when she goes to church and has been known to wheel up the aisle at church to find someone to fill in when necessary, nodding toward the altar to let them know they are needed.
 
She uses her computer to help with parish fundraising emails and to gather materials for the Bible study she organizes every other Wednesday for Catholic women at her home.
 
Mrs. Keenan hosts an ecumenical Bible study once a month and attends a monthly community book club she began 17 years ago.
 
The computer’s voice technology allows her to prepare comments ahead of time, typing them with her eyes then playing them aloud for her listeners.
 
In addition, a fellow parishioner visits her every Friday to discuss the readings for the upcoming Sunday, she attends Eucharistic Adoration on the first Friday of the month in the church’s chapel, and someone brings her Communion every Wednesday and Friday.
 
“Kathy is fully engaged in parish life,” said Holy Cross Father Robert Wiseman, administrator of Sacred Heart St. Francis de Sales Church. “She always has a smile, and everyone knows that Christ is the center of her life.”
 
There are two different types of ALS: sporadic and familial. Sporadic is the most common form of the disease in the United States and accounts for 90-95 percent of all cases. It may affect anyone, anywhere; it is what has affected Mrs. Keenan. Familial ALS accounts for 5-10 percent of all cases in the country and is inherited.
 
A lifelong Catholic, Mrs. Keenan grew up in Kingston, N.Y., and attended Catholic elementary and high school. At Le Moyne College in Syracuse, N.Y., she met her future husband, James Keenan.
 
She earned a bachelor’s degree in biology there, then a master’s in human genetics from the University of South Carolina in Columbia and worked as a genetic counselor and teacher at Albany (N.Y.) Medical Center.
 
The Keenans moved to Bennington in 1998 so he could work as a radiologist at Southwestern Vermont Medical Center.
 
The couple has three children: Katie, 24; Luke, 21; and Bridget, 16. “All accepted and mirrored faith in God's plan that they see in Jimmy and me,” Mrs. Keenan said.
 
Early in 2008 the couple moved her in-laws to their street, planning to help them. Her parents moved to the neighborhood in 2010 to help her and her family.
 
Always active in the parish, the community and at The School of Sacred Heart St. Francis de Sales when her children were in elementary school, one of Mrs. Keenan’s many activities was coaching soccer. But when she couldn’t tie a shoe for children on her team and also had difficulty playing the piano, she knew something was wrong.
 
At first the Keenans thought she had some kind of neuropathy caused by the way she positioned her hands on her bicycle handlebars, but after many tests and doctor visits, Kathy Keenan was diagnosed with ALS in 2008.
 
Though she always knew what is important in life – faith, relationships and health – that awareness became more acute.
 
“Her disease really made a whole lot of people realize what is important in this world,” Dr. Keenan said. “Kathy continues to be a huge part in people’s lives.”
 
As they spoke to a visitor – he often repeating her words for clarity – he sometimes dabbed her tears with a tissue, noting that ALS can heighten a person’s emotions, making him or her cry or laugh more easily.
 
Mrs. Keenan has a team of caregivers to ensure someone is with her at all times. Dr. Keenan, who now works part time, is her main caregiver.
 
Her faith never weakened, and she always finds ways to honor and give glory to God by helping others: She is a good listener, shares her wisdom and assists others with cooking tips and home finance guidance.
 
“I have a good life,” she said, speaking in soft words that those closest to her can best understand. Among her most precious blessings she counts her husband and children, her parents and in-laws, her caregivers and friends, her parish and her faith.
 
“Before the (ALS) diagnosis, our life was just perfect,” Dr. Keenan said. They have wonderful children, Mrs. Keenan remains active in the community, and they find Bennington a great place to live. “The thing we don’t have is Kathy’s health,” Dr. Keenan said.
 
Sometimes Mrs. Keenan dreams about being able to walk and run, but she does ride a stationary bike, and her husband often takes her on 14-20-mile bike rides on their special tandem recumbent tricycle. “I want to ride and I want to pedal,” said Mrs. Keenan.
 
“Riding makes her feel like she is not sick,” Dr. Keenan said, seated at the table with these words from St. Paul’s Letter for the Philippians inscribed on the wall in front of him: “I can do all things through Christ who strengthens me.”
 
Mrs. Keenan surrenders to the plan she believes God has for her. “I have no worries,” she said.
 
Last modified onTuesday, 04 October 2016 16:07
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