Immersed in the Story

Author from Hilton writes novels while battling with MS; writes by hand, then dictates to computer

By Mike Costanza

 

Tom Smith likes to immerse himself in his novels.

“When I write, I truly become a character in the book,” the 72-year-old said.

Smith has created five novels since he took up the pen in 2021, turning them out while coping with multiple sclerosis, an incurable disease that strips the coverings from the body’s nerve fibers.

Those afflicted can experience increasing numbness, a weakening of the muscles, difficulty walking, vision changes and other symptoms.

Though his right hand has a very firm grip, the disease has seriously weakened his left hand and arm and rendered Smith’s left leg unusable. He wears a brace on his left leg and has to get around with a cane and motorized wheelchair.

Despite those limits, the lifelong Hilton resident continues to write, using his right hand to pen his words on lined paper. He then speaks them into his laptop, which transcribes them.

All the proceeds from the sales of his self-published works have gone to nonprofits that are dedicated to finding cures and treatments for dread diseases, including MS, and to one local food pantry. Smith has donated thousands to them down through the years and he has another book in the works.

Smith was diagnosed at the age of 25 with the relapsing-remitting form of MS. In general terms, those suffering from that type of the disease experience symptoms or relapses that usually improve partially or completely. After they improve, the disease can be in remission for months or even years, before another relapse occurs. Smith went through such relapses and remissions down through the years.

“I was blind in one eye for a whole year and I got 95% of my vision back,” he said.

Medication helped to ease Smith’s symptoms and slow MS’s progression and he spent 40 years in tool-and-die work before retiring in 2013 as the manufacturing manager for a local firm. By then, he’d developed secondary-progressive MS, a form of the disease in which the symptoms grow worse and worse over time.

That didn’t stop Smith from penning his first novel in 2021. He was vacationing in Florida with his wife, Sharon, and the weather was too hot and muggy to go out. So he decided to work on the book he’d long talked about creating.

“I told a lot of people, my mother included, and people kept telling me ‘You’ve got to write that story,’” he said. “I used to laugh, because I’m not a writer, I’m a mechanic by trade.”

Grabbing a pen and a sheet of paper, Smith began writing the book by hand.

“I’m not proficient at typing on the computer,” he said. “I can’t keep up with my mind.”

He continued working on it after they returned to their Hilton home and “Static Charge” was soon finished. Without giving too much away, let’s just say that the plot involves a stolen weapon that creates lightning, a German WWII veteran who wants to help his country take over the world and a former Army Special Forces soldier. Smith’s friends praised the self-published work and the professional reviewer he hired gave it three out of four stars, so he decided to write a sequel, “Final Strike.”

Three other books followed. A conversation with a friend led to the writing of “The Signature,” which is about boyhood friends who grew up in 17th century colonial America. “Girl in the Lighthouse,” Smith’s latest work, arose in part from his and Sharon’s love of lighthouses, statues of which decorate their home. “Island of Secrets” is the story of two young archeology students who join a veteran archeologist in the search for a team of scientists that had vanished on an Alaskan mountain. He is currently working on a sequel to “Island of Secrets.”

Smith’s books are sold at Brockport’s Lift Bridge Book Shop, the Heart of Hilton Gift Shop and on Amazon. The author also offers his works at local festivals and farm and flea markets.

Altogether, he’s taken in more than $5,000 in proceeds from book sales, all of which has gone to four nonprofits, including The National Multiple Sclerosis Society, the Sean M. Healey and AMG Center for ALS (amyotrophic lateral sclerosis) and UR Medicine’s Wilmot Cancer Institute.

The fourth nonprofit, the Hilton Parma Emergency Food Shelf, provides necessary groceries, personal hygiene products and cleaning items to those in need who reside in the Hilton School District. Tina Zebulske, the food pantry’s director, said the more than $1,000 it has received from Smith since 2021 has been very welcome. Though the nonprofit accepts food donations, it also has to purchase foods and other goods to meet its clients’ needs.

“We use those donations to buy special dietary foods, stuff we don’t get donated normally,” she said. “We buy diapers, we buy formula, we buy the special stuff people need.”

In addition to supporting the food pantry with cash, Smith and his wife travel to a local Target store each week, load their pickup truck full of food the store is ready to throw out, and deliver it to the food pantry.

“People like Tom Smith are the blessings we have that help us,” she said.

Smith doesn’t seem ready to slow up anytime soon.

“For somebody that’s has MS as long as I have, I’m doing remarkably well,” he said.