With patience and a will of iron, Leslie Why conquered Chiari

Leslie Why has many reasons to celebrate as she completes her first Ironman.
Leslie Why has many reasons to celebrate as she completes her first Ironman.

Leslie Why didn’t just conquer Chiari. She left it behind in her wake, in her slipstream, in the dusty road behind her. By swimming, cycling and running her way to completion of the Ironman North American Championships in Mont-Tremblant, Quebec, last August, she rose above any remaining doubts about the Chiari malformation that had plagued her just a few years before.

“What this brought me was closure on a lot of fears and concerns that I still had lingering issues from the Chiari,” says Leslie, an Amherst, New Hampshire, resident and member of the Mayfield Chiari Center’s Advisory Board. “I felt so good the week before, of, and after the race, that all of a sudden I realized I’m not broken anymore. I’m good. I let go of all that fear and concern that lingers in the back of your head.”

John M. Tew, MD, Director of the Mayfield Chiari Center, told Leslie in an e-mail that she had established “a new definition of sensational.” Congratulating her, he added: “You are an inspiration to all people. But most important is the example that you have set for all patients who suffer with Chiari malformation and other chronic neurologic disorders.”

Leslie, the owner of The Whole You, LLC:  Nutrition and Wellness Coaching, joined the Mayfield Chiari Center board in 2012 to help communicate the importance of nutrition, stress management and movement/exercise to others who are or have been affected by Chiari.

Leslie is no stranger to athletics and fitness. She played lacrosse as a child, competed in her first team triathlon at age 12, and became an All-American lacrosse player for Bucknell University. She did shorter triathlons in the mid-2000s. But last summer’s Ironman — a successive 2.4-mile swim, 112-mile bicycle ride and marathon (26.2 mile run) — was her first.

It marked a triumphant comeback from a February 2010 automobile collision, which led to problems related to balance, memory, digestion, and swallowing.

“It was a 50 miles-per-hour collision,” Leslie recalls. “A police officer made a U-turn in front of us and we broadsided him, head-on. Everybody survived, thankfully, and I was the only one who had any issues afterwards. I started running again a few months later, and I ran a marathon in November, less than a year after the collision. It was the fastest marathon I had ever run, but within a few days my symptoms got dramatically worse. I would be driving and wouldn’t know where I was. I wouldn’t remember where I parked the car. I was having these mini panic attacks.”

Less than a week after the marathon, Leslie made a routine appointment with her long-time chiropractor. During the appointment, while the chiropractor adjusted her cervical spine, something happened.  “I went limp and couldn’t speak or move, but I could understand what was going on,” Leslie recalls. “The chiropractor thought I was having a stroke and called 911.” (In hindsight, Leslie believes it was a critical catalyst to finding a diagnosis, and today she continues to get weekly chiropractic adjustments.)

Leslie was taken to the hospital, where her first CT scans were performed. Within a month she had her diagnosis: a 17-millimeter herniation with brainstem compression. Her 4th ventricle was completely blocked, allowing no cerebral spinal fluid to flow. Surgery for Chiari malformation was now a must. Over the next three months, bed-ridden and incapable of walking more than a short distance, Leslie searched nationwide for a neurosurgeon. She settled on Dr. John Oró at the Aurora Medical Center in Aurora, Colo. “Walking into facilities in Aurora was like a Zen experience,” she says. “It was quiet, calm, beautiful. Even the women at Starbucks and the hotels were wonderful. I said, ‘This is where I want to be.’ And I did not want to leave.”

Dr. Oró performed Leslie’s decompression surgery, which went flawlessly, in March 2011.

Comparing her diagnosis and treatment to those of others with Chiari, Leslie realizes that in some ways she was fortunate. “Because it all happened so quickly – because I went from very high functioning to completely non-functioning — it allowed me to come back quickly. When I think about people who suffer with Chiari for years, I am deeply sympathetic. I cannot imagine what they go through.”

Three months later, itching to compete again, Leslie entered a 5k race. She finished the run, but felt terrible. Her life was still unsettled, not only by Chiari and the resulting surgery, but also by an impending divorce. “I had a lot of setbacks, because I didn’t understand what recovery really was and what the body had to do,” Leslie says. “I could see now that training had been an escape. You can’t do that. There comes a point in time when you say, ‘It’s time to face all these challenges.’ I really feel as though the Chiari was that opportunity for me to face those challenges in all parts of my life and to move on and to let go of short-term goals and focus on life goals and overcoming things that had happened in the past. It was a forced opportunity to make me slow down.”

At a crossroads and ready to make changes, Leslie set her ambitions aside and focused on walking and yoga. She did everything slowly, with no expectations attached. During yoga she stretched and strengthened. And over the course of a year, she healed.

In August 2012 she reached another crossroads. This time, she moved quickly. She signed up for the Ironman Mont-Tremblant, which requires participants to register a year in advance. And in November, slowly and methodically, she began training for the race.

By the time she had completed a half-ironman in June, she had settled into an optimal training pattern, which included good nutrition, sufficient sleep, and a 20-minute break in the middle of the each afternoon. Whether she was training or not, she embraced “the rhythm of the day that needs to be in place for me to be optimally happy, healthy, and present.”

Leslie completed the Ironman in 11 hours, 52 minutes, and 17 seconds. She also finished the race in a new place.

“Because of the Chiari experience and the structural changes it caused, I knew I would never be the same,” she reflects. “But Chiari didn’t mean I couldn’t be just as happy, or stronger, or more able to do other things in life. The Ironman was a pretty big moment for me.”

— Cindy Starr