MIDDLEBURY — It wasn’t all that long ago that Leslie Smith was a triple-threat athlete, confounding opponents on the tennis courts, ski slopes and field hockey pitches. She was a standout during her Middlebury Union High School career, and earned All-American status in tennis as a freshman at Scripps College in Claremont, Calif.

Smith was a meteor, fueled by grit, determination and the encouragement of her mom, Gail Smith, Middlebury College’s legendary tennis coach (1971-2000). Leslie seemed destined for big things.

Until the waning stages of her high school career, when she began experienced crushing, mysterious fatigue. A subsequent diagnosis dealt her a life altering blow that has shortened her long strides into baby steps: She learned she had Myotonic Muscular Dystrophy, or MMD, a genetic disorder that can affect muscle systems in the body that move the limbs and trunk, and operate the digestive system and heart.

Smith, now 46, wakes up in the morning feeling the same way a healthy person feels at the end of a long day of work.

“It’s a constant struggle for me between doing what I want and doing what I can,” she said. “If I overdo it, I’m (laid up) for around a week. I don’t recover. I’m on fumes, and when the gas tank dries up, it’s not good.”

But MMD is more than about feeling tired. Leslie was fitted with a pacemaker in 2004 and then a defibrillator in 2009, after having been diagnosed with cardiac issues. She’s also had cataract surgery, another byproduct of her affliction.

“I got this raw deal, and what am I going to do?” she asked herself after her diagnosis in 2000. “Am I going to sit in the corner and turn into a puddle, or am I going to fight every step of the way and make my life the best I can?”

She chose the latter path, and is finishing up a memoir about her life experiences living with MMD. It’s titled “Spitfire,” which happens to be her nickname. Plans call for “Spitfire” to be published next year, and Smith hopes it’ll inspire others afflicted with MMD while imparting an inspirational message to anyone, regardless of their health.

Flip the calendar back to the mid-1990s. Leslie Smith was equally lethal with a racquet, skis or field hockey stick.

“I never sat down,” she said with a laugh.

Until the end of her junior year at MUHS. She’d lost her physical endurance. Short sprints and lunges remained within Leslie’s athletic repertoire, so she was able to continue playing field hockey and tennis. But she’d lost her capacity for sustained exercise. Simple pre-game jogs became marathons she couldn’t complete.

Her frustration followed her to Connecticut and the Loomis Chaffee School, which she attended for 12th grade. And that’s where MMD forced Smith to back-pedal on her rigorous athletic schedule.

“My struggles continued to get worse, but I tried to power through,” she said. “I beat myself up, did anything I could do. And then I couldn’t.”

She reluctantly quit field hockey, but held on to tennis, her top sport, as she transitioned to Scripps College in 1994-1995. Smith earned All-American status as a freshman, while serving as an assistant tennis pro at a local country club.

Then, once again, her body betrayed her.

“I had lost the ability to stand on my toes,” she explained. “All my weight transferred to my heels. If you can’t be on your toes, you can’t run, you can’t move quickly. That limited my ability to play tennis, completely.”

So Smith made the devastating decision to end her college tennis career, confining her play to occasional tournaments with her mom.

She couldn’t understand what was happening to her. Her young body was betraying her at a time she should be entering her prime. Imagine suddenly not being able to read or write, she asked.

“I got very angry at myself and everyone else, and I got depressed,” she said.

GETTING A DIAGNOSIS

It was time to find out exactly what was wrong with her. And one of the most cathartic sections of “Spitfire” details Smith’s journey from 22-year-old standout athlete battling fatigue, to being told at the age of 25 that she had MMD.

She recalled, as if it were yesterday, going to the Muscular Dystrophy clinic at UVM Medical Center, where she said, “the doctors totally destroyed my life.”

Smith said the physicians were more than unapologetically frank; they were “rude and callous,” stating that her “life was over.”

Adding more misery to a bad day was confirmation that her brother Colin — who had been experiencing similar symptoms — also had MMD. Physicians reasoned MMD was passed to them by their late father, who himself was confirmed to have had a less severe version of the disease.

The Independent in 2013 wrote a story about how Colin had connected with an adaptive sailing program.

Any hope Leslie Smith had of simply “fixing” her affliction through medication quickly evaporated like a Roscoe Tanner serve.

“They said, ‘Don’t have children. You’ll be in a wheelchair in a few years. You’re going to die young,’ ” Smith said. “It was the worst thing I ever experienced. Being told this at age 25 — how do you wrap your head around it?”

All she could say during her ride home from that fateful appointment was, “Who’s going to want me now?”

Well, her husband Rob Nicholls and her mom have been at her side every step of the way, as she’s learned to cope with her affliction and live a fulfilling life — which still includes athletics. She didn’t want to completely lose her grip on tennis. Her hope was restored around six years ago when she learned of wheelchair tennis through the Wounded Warriors Project. Smith has taken to the sport, but sadly, COVID has resulted in suspension of many wheelchair tennis events.

Always game for a challenge, Smith has found it in wheelchair tennis.

She’s far from a “ringer” when she plays her opponents.

“I’m at an advantage because I have the strokes and the knowledge, but I’m at a disadvantage because 90% of people who play are in a wheelchair 24/7,” she said. “Their movement, mobility and awareness are so much better (for the sport).”

But the fun comes with a cost. Any exertion requires a lot of recuperation for an MMD patient.

For more than 20 years, Leslie and Colin Smith have made annual trips to Johns Hopkins University in Baltimore to see neurologists, cardiologists and other MMD specialists. They also have physicians in Vermont to troubleshoot their medical problems.

TURNS TO WRITING

While Smith doesn’t clasp a tennis racquet and field hockey stick with the confidence she once did, she’s become quite adept with a pen since 2011. That’s when she made a habit of journaling about important moments in her life — including, of course, the onset and progression of MMD in her body.

LESLIE SMITH Independent photo/Steve James

“I used it as a way to make sense of my life and my diagnosis,” she said of writing. “In order to put it down on paper, it has to make some sort of sense. Things came pouring out of me.”

She collaborated with one of her best friends, a genetic counselor, to draw the best writing out of herself.

But life got in the way in 2014, and she set her journal aside.

“I had all this writing and nowhere to go with it,” Smith said.

Until 2020, when her mom found Leslie’s journal in a drawer. Gail Smith encouraged her daughter to update it and publish her work, and put Leslie in touch with an editor.

“We started working together, and now we have a pretty complete manuscript,” Leslie Smith said with pride.

“Spitfire” should have universal appeal, Smith believes.

“Everybody has had a life altering change, everybody has had loss, and everybody has had something negative happen to them that changed their life,” she said. “Everybody has had a crisis of faith in themselves at one point or another. It’s the human condition, so everyone will be able to relate to this.”

Smith uses a lot of tennis metaphors in her book; each section features terminology like “coin toss,” “grip,” “love,” “singles” and “two bounces.” Half the chapters are written in narrative style; the other half feature insights into her thoughts about such things as balance, loss and happiness.

“Spitfire” doesn’t have to sell a zillion copies for Smith to consider it a success. It’s already paying dividends that transcend financial gain.

“Thanks to my writing, I am more able to focus on the here and now,” she said. “I can let go of all hurts, anger, regrets and mistakes and move on to what’s is next — whatever that is. I can take each day as the gift that it is.”

Reporter John Flowers is at [email protected].