As a college student, Leslie Smith dreamed about the world and future that awaited her.
At age 25, Smith learned that her life’s path would be vastly different after being diagnosed with Myotonic Muscular Dystrophy.
The incurable genetic disease eventually killed her father. The symptoms are more severe for successive generations; her father was diagnosed at 67. It was the year 2000, and Leslie had just turned 25 and her brother was 26 when they were tested because it’s hereditary.
She recalls vividly that initial diagnosis, when a doctor described in great detail how her body would slowly stop functioning.
“His description of the lives we were headed for was the single most depressing thing I’d ever heard. Our life expectancy would be shortened. We should not have children. Our muscles were going to deteriorate one by one. Before long, we’d be incapacitated and in wheelchairs,” Smith said.
A writer at heart, Smith journaled her anguish and fear as she tried to find a reason to get out of bed each day. Eleven years later, her writing would become a memoir in a desire to inspire others to go on in spite of life’s unexpected hurdles.
The book, “Spitfire: A Story of Adversity, Acceptance & Resurrection,” had a quiet launch on Gloucester’s Brier Neck where the author was surrounded by friends, family and neighbors who have been part of her journey.
“The words poured out of me and whether I wanted to write or not, I couldn’t stop,” she told the small gathering.
Smith, 47, grew up in Middlebury, Vermont, and summers in Gloucester, near Good Harbor Beach, one of her favorite places in the world, and a continued source of spiritual nourishment.
She attempted to write the book more than a decade ago, but was soon frustrated by the effort. That was until the fall of 2020, when her mother, Gail Smith, discovered papers filled with her daughter’s writing when she cleaned out a desk drawer. With her mother’s encouragement, Smith, then 45, forged ahead to finish the memoir with the help of editor Jennifer Berkshire.
Early on
Smith’s early symptoms included an intense fatigue, which caused her to spend most of her college senior year in bed, while being told by physicians that nothing was wrong, she said.
The natural athlete learned that a wheelchair would be in her future. The diagnosis, however, brought an understanding about why she had suffered such fatigue and other unexplained symptoms.
The book’s title comes from the author’s nickname when she was born premature at 3.2 pounds, and unable to breathe on her own. She spent her first weeks of life in an incubator where the NICU nurses called her “spitfire.”
When Smith was around 8 years old, she took up tennis and found great success in the sport. In fact, she excelled at all sports, from skiing to horse-back riding.
She was named an All-American tennis player her freshmen year at Scripps College in Claremont, California. As a young adult, she became a tennis instructor. Now decades later, she still plays tennis, but from a wheelchair. She has found acceptance with this reality.
After college, Smith earned a master’s degree in social work. But the life-changing diagnosis threw her into a downward spiral.
She talked about the work it took to resolve her feelings and emotions and find acceptance of her reality.
“There was anger, confusion, fear, unhappiness, despair, but most of all anger,” she wrote. “I started writing about the myriad thoughts I was dealing with, as writing has always been a tool that I’ve used to make sense of my life.
“To untangle and clarify what I was grappling with. During the process of writing, the most amazing thing happened. All the fears and emotions, the loss of my soul, the emptiness, my broken heart, the lack of confidence and low self-esteem had been healed by telling my story.”
Moving forward
Smith is eager to share that she is not defined by her diagnosis or disability.
“It follows me around like the shell of a turtle because it is part of who I am, but is not what I am,” she wrote.
In the memoir, Smith touches upon compassion, passion, hope, faith and gratitude, sprinkled in with the vicissitudes of her personal story.
“I often have wanted to give up, throw in the towel, and end any form of suffering,” she wrote. “But I don’t. I keep going every day; even when small tasks seem insurmountable.”
Smith had a pacemaker implanted at age 29, and at 34 she had a pacemaker/defibrillator placed in her chest because of disease-related heart issues. But she continued her quest for acceptance.
“I was always searching for acceptance in any form I could. Acceptance of me, acceptance from others, and most of all the grace to stop my reckless angry behavior, escape my smothering depression, and accept my life in a new, redefined way,” she wrote.
“It is interesting to me that I am extremely accepting of others and so much less accepting of myself. … Realizing that I am going to deal with loss and work towards acceptance every day of my life makes me feel so tired at times that I could cry. Waking up every day in pain with crushing fatigue is acceptance in itself.”
Smith takes great inspiration from Anne Morrow Lindbergh (1906-2001), author of the 1955 “Gift from the Sea” and wife of the famous aviator whose first-born child was kidnapped and died.
“I can be in harmony with my universe and myself when I have the sand between my toes, the sun on my face and the vast emptiness of the ocean before me,” Smith wrote.
Like Lindberg, Smith too keeps a small shell on her desk to remind her of the place she can go to find an inner peace without all the distractions of the world swirling around her.
Smith emphasizes the importance of finding small parts of life to give thanks for on a daily basis.
“I must continue creating and cultivating gratitude. Otherwise, I will end up alone and bitter,” she wrote. “… Reality must be faced and finding a new, clear perspective is what my ongoing journey is about. While I try not to let the tides of depression drown me, I look for a way to forge ahead and use my introspection to lead me.”
Writing is Smith’s way to navigate her thoughts on her journey of survival.
In the chapter “Moving Forward,” she sums up the reason for writing the memoir when she says: “If I can use my writing as a way to help others bear the pain of their journey, I will have succeeded.
“I not only want to be a light in the darkness but to lighten the darkness for others.”
Gail McCarthy can be reached at 978-675-2706, or at gmccarthy@gloucestertimes.com.