(Today's guest blog is by my dear friend, Phyllis Stark, about her Aunt Kathryn, a woman who handled her burdens with an unimaginable grace. It's a beautiful story about the power of family and a reminder to accept what the day brings on its own terms, which was something I really needed to hear today. - Melinda)
It’s hard to imagine getting a diagnosis more devastating than being told you have ALS. Also known as “Lou Gehrig’s Disease,” ALS is a cruel and terrifying malady. A progressive neurodegenerative disease, it affects nerve cells in the brain and the spinal cord, causing gradual loss of muscle movement—including speech—eventual paralysis and death.
But for one remarkable woman, my Aunt Kathryn, an ALS diagnosis provided an opportunity to live life to the fullest. Before her death last year, Kathryn lived with ALS for a remarkable 14 years, and became an inspiring role model for everyone around her.
Well into her diagnosis, Kathryn was still sculpting pottery and writing poetry. When her hands stopped working but she still had her voice, she’d share her ideas with her pottery teacher, who would then hold Kathryn’s hands in place so she could continue to create. When her voice gave out and her only remaining movement was in her eyes, she used special computer equipment to write three volumes of poetry, forming words and phrases entirely through her eye movements. Common themes of her poetry were care giving, patience and the joys of life.
While she regretted each physical diminishment, she never mourned its loss. Kathryn never complained about her disease, and always found some joyful reason for waking up in the morning. She adopted the motto “as is,” also the title of one of her poems. A magnet she made for me with that motto on it sits in a spot on my refrigerator and serves as a daily reminder of her courage. My father has adopted the same motto for his own battle with Parkinson’s Disease.
A brilliant college math professor, Kathryn was blessed with beauty, athleticism, and a happy marriage to my Uncle Gerry. She was the mother of four accomplished children, and grandmother of 10.
Throughout her illness, Kathryn continued to do the things she loved, including eating in restaurants—even after she had to be fed—and traveling. She never let pride get in the way of living life. When travel was no longer feasible, the equally remarkable Gerry planned a week where they “visited” a different country every day. He’d bring home music and movies from each country on their “itinerary,” and then take her to a corresponding ethnic restaurant for dinner each night.
When she wanted to dance at her youngest son’s wedding, Gerry put her feet on his—as a father might with a young child—and danced her around the floor.
She felt a kinship with dragonflies because she said they provided a “glimmer of immortality,” and she featured dragonfly themes often in her pottery. She loved the ocean, and long after she couldn’t walk her sons would carry her into the surf every summer so she could feel the water and waves. After her death, her family scattered some of her ashes in the sea. When they returned to the spot on the beach where they’d left their belongings, a dragonfly was hovering nearby.
Kathryn and Gerry were extremely active in the Greater Philadelphia chapter of the ALS Association and were instrumental in the annual Walk To Defeat ALS, organizing the Kathryn’s Krew team that continues to bring in significant dollars for the charity, now in Kathryn’s memory. This year’s walk was held Nov. 3 at Citizen’s Bank Park in Philadelphia.
As my mother wrote in a eulogy she read at Kathryn’s funeral, “Instead of embracing sadness, anger or self-pity, she miraculously found a way to find joy and purpose in every ordinary day.” May we all strive to do the same.
Dec. 9: ALS Association
(Ali Nielsen, ALS Association, 312 Norristown Road, Ste. 260, Ambler, PA 19002
In memo line please write “Kathryn’s Krew”)
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