Running CdLS Into The Ground
With Buckingham Palace behind her, British flags lining the final stretch and 40,000 other runners flanking her at the London Marathon in 2017, Karen Lyons raised her arms for her victory photo as she crossed the finish line. It would have been picture perfect had her blue running tights not made it blatantly obvious that she had peed her pants. Lyons has been running consistently since 2008 and just hit her marathon personal record of 4:13 in London.
“I remember seeing this picture, every runner’s dream photo,” Lyons says, “and I was mortified.” She sent the picture to her friends who proverbially slapped her across the face.
“They were like, ‘What is wrong with you? That’s you at the finish line of the London Marathon!” Lyons says. After she had some sense slapped into her, she turned to Instagram. “I posted this little narrative of how stupid we are to worry about what our bodies look like when we’re in the middle of doing something that shows how strong we are.”
Finishing this marathon with a PR exemplifies just a fraction of Lyons’ strength. Lyons, 43, grew up in a typical 1980s household with typical ’80s scrunchies. She swam in high school in Dover, N.H. but never considered herself a typical athlete. She went to The University of New Hampshire, studied journalism, spent her free time as any typical party girl would and moved to Boston after school to work for a publishing company. Lyons met her husband, Patrick, at a typical pick-up joint in Boston and dated him for a year before they moved up to Portsmouth, N.H.. They’ve been married for 15 years now and have three kids, one of whom changed everything “typical” in Lyons’ life.
Pat and Lyons’ second child, Luke, was born with Cornelia de Langue Syndrome in 2008. Children with CdLS are often nonverbal, very small for their age, have autistic-like behaviors and can even be missing limbs.
“The second they put him on my stomach, I remember going, ‘Oh, my God. He’s so cute.’” Lyons says. “But then the room kind of got quiet. They took him off me immediately. Within 10 minutes of having given birth, I was completely alone.”
After the official diagnoses, Lyons, Pat and their eldest daughter, Delaney, were thrust into the world of special needs. Luke can live a full life, but he will never be able to live on his own. The everyday stresses in this new world, like helping Luke with his self-injurious behaviors, took a toll on Lyons and her husband.
This was when Lyons, who is a full-time stay-at-home mom, turned to running. She was 60 pounds overweight from her pregnancy, overwhelmed and exhausted. But one day, when her mother-in-law was in town visiting, Lyons decided to leave Luke and Delaney with her, throw on some baggy sweats and a pair of sneakers from Marshall’s and run once around her block. It took her 10 minutes and her lungs were burning, but something about those 10 minutes made her want to do it again.
“Running, for me, was just an escape from reality,” Lyons says. “Ironically, what happened was that the more I ran to escape life, it actually brought me closer and closer to embracing the life that I have.”
Lyons started racing with a 10K in 2008, took a hiatus to have her third child, Owen, the following year, and then ran her first half marathon. In 2013, Lyons got a letter from the CdLS Foundation asking for runners to volunteer for the New York City Marathon. She eagerly signed up and raised $4,500 for them, then raised another $3,200 on the Foundation’s behalf for the 2014 Chicago Marathon. She saw a sign after the Chicago Marathon for the World Marathon Majors—now the Abbott World Marathon Majors—which is a series of races in New York, Chicago, Berlin, Boston, London and Tokyo.
“When I said to my husband, ‘I think I’m going to run all these Majors,’ he was like, ‘Okay. Go for it,” Lyons says. Pat, Hewlett-Packard Enterprise’s channel sales director, remembers it a little differently. When asked how he recalls that conversation, he said, “Probably something like, ‘How much is this going to cost?’”
Despite the impending toll on Pat’s wallet, Lyons ran the Berlin Marathon in 2015, the Boston Marathon in 2016, the London Marathon in 2017 and is now training for her final Major in Tokyo on February 24. She’s avoided injury throughout the past five years by incorporating yoga and strength workouts into her training, and doesn’t plan on halting this lifestyle anytime soon.
“I told Karen that she is one of the most inspiring people I know,” says Kiki Brantley, a lifelong friend of Lyons’. “When she puts her mind to something, she goes after it.”
Despite claiming she isn’t “that hardcore” and wants to do some less serious races in the future, Lyons will be the first woman in the state of New Hampshire to complete the Majors when she finishes the Tokyo Marathon this month. What started as a coping mechanism and recess from her everyday hurdles is now a lifestyle change Lyons will carry with her for the rest of her life.
“I’ll never be done with this,” Lyons says. In the end, “it was all for Luke.”