Clinton author with MS finds her voice after losing her speech

Deborah Livesey found her voice even as she lost the ability to speak. The 63-year-old Clinton woman wrote a book about family and the secrets kept from and between siblings and parents. But Livesey could not just sit down and type up a chapter, a word, or even a letter. Livesey has multiple sclerosis, a degeneration of the nervous system. Essentially, Livesey’s beautiful mind — one that creates stories about a daughter dealing with the pains of her past and the repercussions in the present — is trapped in a frail and increasingly uncooperative body.

Debbie Larson visits with Deborah Livesey

Deborah Livesey found her voice even as she lost the ability to speak.

The 63-year-old Clinton woman wrote a book about family and the secrets kept from and between siblings and parents. But Livesey could not just sit down and type up a chapter, a word, or even a letter. Livesey has multiple sclerosis, a degeneration of the nervous system. Essentially, Livesey’s beautiful mind — one that creates stories about a daughter dealing with the pains of her past and the repercussions in the present — is trapped in a frail and increasingly uncooperative body.

Losing command of herself was a sharp turn for Livesey. She formerly served as an officer with various states’ Democratic Party offices, even as a delegate in the 1988 presidential election, worked full time and loved — still loves — traveling.

Today, she is unable to speak having lost control over her vocal chords a few years ago. Only her left hand remains hers to control, which means she must sign individual American Sign Language letters rather than entire words, which can require two hands to communicate.

Yet word by word, sentence by sentence and chapter by chapter, Livesey was able to get out this semi-autobiographical fictional story with the help of a trusted friend.

“Somehow I want people to know disability isn’t the end of the world,” Livesey signed, translated by her husband of several decades, Malcolm Cumming. “It can happen to anyone, so be kind.” 

Six years ago, Livesey started working on her book, “The House on Round Hill Road,” out now at Moonraker Books and available online. Cumming, a computer science expert, was still working and needed someone to look after Livesey while he was away. He put an ad in the South Whidbey Record for a companion, and they received much more than they ever thought.

Debbie Larson of Langley saw the classified advertisement and decided she could at least see what it was about. She and Livesey quickly became friends, and Larson still visits at least once a week for a few hours.

“Something about that caught my eye,” Larson said, sitting next to Livesey and rarely taking her eyes off her, looking for the next hand sign.

“(The) best thing that came out of this is we’ve become good friends,” she added.

Livesey’s speech began to fade in 2010. Larson helped teach her the sign language alphabet so she could form words.

“We developed this crazy way of communicating,” Livesey signed to Larson. One example was that Livesey would sign the first letter of a character’s name, then wiggle her eyebrows to indicate it was the character.

Dictating the story, the characters, the motives, the settings, the dialogue took a long time between Livesey, Larson and Cumming. But Livesey is used to her body’s limitations.

“Deb had to explain every cut and paste maneuver,” Cumming said.

It was a learning process for all three of them. Larson laughed when asked if she had ever worked on transcribing a manuscript or publishing a novel.

Livesey was diagnosed with multiple sclerosis in 1983, but stayed active for several more years. Cumming and she recalled taking a trip to Paris in 1988 and walking throughout most of the city. Livesey held his hand a little tighter and just a bit longer than usual as they strolled the streets of Europe’s most romantic and romanticized city.

As Cumming told the story of their travels, Livesey began to sign to him that she was grateful for his help, even as he was receiving a liver transplant in 2012. Shakily and slowly, she signed that he maintained the “W-H-E-R-E-W-I-T-H-A-L” to help her while he recovered from the surgery.

Livesey is far from finished. Signing to her husband, she said she had three more ideas for books.

“The House on Round Hill Road” is not a tale about Livesey’s condition. Instead, it is a reflection and recollection of Livesey’s lively spirit, she said, of a 4-year-old girl who hiked Mount Washington alone on a whim, of a woman who had a challenging relationship with her mother, and of growing up with exciting friends and family.

 

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