The paths of those affected by Lambert-Eaton myasthenic syndrome (LEMS) hold many twists and turns.
Our family has experienced many ups and downs since our daughter Grace was diagnosed. The promise of treatment brought elation, but the reality of minimal results from that treatment would send me into an emotional downward spiral.
Grace’s life-altering LEMS symptoms left me feeling desperate. She also experienced overwhelming sadness as her abilities diminished. She felt afraid, alone, and hopeless.
I knew it was my job to guard her heart from perpetual discouragement and move her into a story of hope despite her circumstances.
One of my pleasures in life is to read.
I love a good story. A true story is even better. So, when I was faced with depression and discouragement, I knew it was time to look for inspiring stories to encourage and bring hope, camaraderie, and purpose to our situation.
Immediately, my mind flew to the many inspiring stories I have read over the years. I knew I needed to share these stories with Grace. I wanted her to see characters who were filled with resilience, compassion, and strength in adversity.
The first book I pulled off my shelf was “The Hiding Place” by Corrie ten Boom. This is a true story about a woman living in the Netherlands during World War II. She and her family were thrown into a concentration camp for helping Jewish people escape the Nazis. It’s a story of suffering and heartache, but ultimately focuses on redemption and forgiveness.
Next up was the classic “The Secret Garden” by Frances Hodgson Burnett. The plot centers around Mary Lennox, a girl who loses both of her parents in the cholera epidemic. She is sent to live with an uncle and arrives as a grumpy, tantrum-prone young girl. Her nature transforms as she learns about the tragedies in her uncle’s life. This is a story of great empathy and growing compassion for another’s plight.
“Fish in a Tree” is a novel by Lynda Mullaly Hunt. The main character struggles with dyslexia, and throughout the novel, we see her confidence grow under the nurturing of a gentle teacher.
Grace especially loved “Out of Darkness: The Story of Louis Braille” by Russell Freedman. Blind since 3 years of age, Braille developed a system of raised dots that eventually enabled the blind to read and write. It is truly an inspiring story of how one person can use his disability for good.
There are so many stories that inspire in the face of unthinkable circumstances: “The Diary of a Young Girl” by Anne Frank, “Joni: An Unforgettable Story” by Joni Eareckson Tada, “The Story of My Life” by Helen Keller, and “Wonder” by R.J. Palacio.
We do not need to look very far to see how stories shape our perception and outlook on life.
After reading these together, Grace realized she was not the only person who faced uncertain circumstances or physical limitations. She was inspired by these people who lived their lives well despite their situations.
I leave you with one of my favorite quotes from “Fish in a Tree,” which inspires me to see each person’s unique and individual strengths: “Everyone is smart in different ways. But if you judge a fish on its ability to climb a tree, it will spend its whole life thinking that it’s stupid.”
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
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