Obituary: Carol Lynn / Minister, pillar of the Myasthenia Gravis Association
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The Rev. Carol Lynn, who survived a fatal diagnosis at 18 to minister to those with disabilities and be a pillar of the Myasthenia Gravis Association of Western Pennsylvania, was 75 when she died Wednesday of cancer.
She couldn't smile, because she couldn't move those muscles. But Donna Kalisek, the administrative coordinator at the Myasthenia Gravis office who had known Rev. Lynn since her since her own diagnosis in 1968, pictures her smiling.
"She always said it was an upside-down smile," she said. "Her attitude conveyed it. You heard it in her voice and her laugh and the twinkle in her eye when she talked. She was an inspirational person."
During her first semester at Bethany College, the Brookline native struggled to breathe and to walk. Her arms were too weak to carry books. She returned home for months of misdiagnosis.
"Psychiatrists said it was because she hated her mother. Stupid things like that," said her husband, James Lynn, Jr., of Hampton.
When she was diagnosed with the neurological autoimmune disorder, the prognosis was grim. She wasn't expected to reach her 21st birthday. Then, as now, the cause and cure of the rare disease that saps muscle control was unknown.
Patients in the 1950s routinely died because they could no longer breathe or swallow, said Barb Lefler, executive director of the Myasthenia Gravis Association of Western Pennsylvania. Today it is rarely fatal.
But she responded well to an early drug to control the symptoms.
There were always periods when she couldn't walk or talk, but she never gave up. She enrolled at the University of Pittsburgh and asked Mr. Lynn, a high school classmate and Pitt student, to drive her.
They fell in love and would marry in 1958.
Meanwhile her father, George Sayenga, saw a newspaper ad for a meeting of a Myasthenia Gravis Association. Desperate for information in that pre-Internet era, he went. But the woman who had run the support group was so ill that she announced she was shutting it down. Mr. Sayenga took over and built it up.
In addition to support groups, camps, advocacy and education for patients, it runs a clinic in partnership with Allegheny General Hospital.
"Most neurologists see one or two myasthenia gravis patients in a lifetime. Ours see a dozen cases a week," Ms. Lefler said.
Long before her ordination as a United Methodist minister, Rev. Lynn gave constant support to others with myasthenia gravis.
That's how she met Ms. Kalisek who, at age 9, was much younger than a typical patient.
"She was such a hopeful person for me and my family," said Ms. Kalisek, who remained close to her. "She laughed at everything and didn't take it so seriously. There was just an aura about her that made you feel that you can get through this. We had a lot of the same symptoms, and she was easy to talk to and easy to cry with when you needed to."
When she wasn't volunteering for the association, Ms. Lynn was busy raising two sons, teaching piano, being a Cub Scout den mother and singing in her church choir.
After the boys were grown, she enrolled at Pittsburgh Theological Seminary. She was ordained in 1986, with the goal of being a hospital chaplain.
In the 1990s, she spent about five years as a chaplain at Allegheny General Hospital. She had a gift for soothing dying patients, Mr. Lynn said.
"She could talk to them because she understood," he said.
"She could help them not to be afraid, not to worry. She helped people let go."
In 1997, she became chairman of what is now the Disability Concerns Team of the United Methodist Conference of Western Pennsylvania, a role she kept until this summer.
She was a key organizer of an annual retreat for those with disabilities and their caregivers and constantly promoted grant programs to help congregations become more inclusive of people with various disabilities.
"She just amazed me with how much she was able to accomplish and how dedicated she was to making sure that people with disabilities were included in ministry, activities and programs," said Jackie Campbell, who works in the communications office of the Methodist conference.
She officially retired in 2002 but stayed busy with church and association work.
Already the author of a pastoral care manual for the laity, she wrote a novel, "Covenant Dilemma." It tells the story of a pastor who must decide how to respond when a gay couple show up at church.
In the end, the main character concludes that "we have all come from God, and we have to accept everyone and love them no matter what," said her son, Scott, who helped with editing.
It was published on Kindle shortly before her death.
Rev. Lynn had been diagnosed with pancreatic cancer in November.
"I really didn't believe it," Mr. Lynn said. "We had been told so many times that she might not make it. She's had 22 surgeries. She survived breast cancer. She beat them all. When they said that she only had three to six months to live, I thought, 'You're crazy. Nothing will defeat my wife.' Unfortunately, this one did."
In addition to her husband and son Scott of Washington, D.C., she is survived by a son, J. Curtis Lynn III of Hampton; a brother, Donald Sayenga of Tucson, Ariz.; and one grandchild.
A memorial service will be held in Bakerstown United Methodist Church, Gibsonia, today at 11 a.m.
Gifts may be made to the Bakerstown church, 5760 William Flynn Highway, Gibsonia 15044 or the Myasthenia Gravis Association, 490 E. North Ave., Suite 410, Pittsburgh, 15212.
First Published October 1, 2011 12:00 am