After being diagnosed with juvenile arthritis when he was 6 years old, recent Scarsdale High School graduate Brian Lilly finally took control of his athletic life sophomore year and has been full throttle ever since.
With chronic knee inflammation and a slow-moving body, Lilly participated in sports like baseball and basketball growing up, not because he was any good, but because all he wanted to do was belong with the other kids. He never really discussed the arthritis, but his peers could tell he was different.
Sophomore year he started taking his diet — a major factor in overcoming the condition — seriously. That winter he found a low-impact option (nonrunning) in wrestling, but the real life-changer came with the crew team that spring.
Though it took some time to lose weight and get in prime shape, Lilly was finally on a path toward achieving athletic goals most high schoolers don’t even think of.
“The biggest thing I learned from all of this is that if you have a burden in your life it’s important to focus on what you can do,” Lilly said. “I might not have been able to be the best runner at that point, but there are other things you can do.”
Last November, Lilly completed the New York City Marathon and over the summer he completed in his first Ironman triathlon. Imagine that, a young man who spent most of elementary and middle school trying to avoid running because it was so difficult and by the age of 18 he’s completing some of his bucket list items.
“I’ve faced a lot of adversity, had a lot of terrible days, a lot of embarrassment, but it really shaped me into the person I am today,” Lilly said. “Especially after doing the Ironman I feel like I can do anything I set my mind to.”
With the intense physical fitness regimen and the change of diet, Lilly no longer takes medication to control the condition and it’s very possible that at this point he has outgrown what plagued him for nearly a decade. It’s something he’ll have to keep an eye on as he gets older, but for now it’s behind him and he’ll be rowing crew for UC San Diego this school year.
Lilly called the initial diagnosis “pretty scary and daunting.” He spent his formative years overweight, fatigued and feeling down on himself.
“I really just felt different from all my peers,” he said. “When you’re 6 years old pretty much all you’re interested in doing is playing sports and I was really slow. Kids were running, playing basketball, football and I really couldn’t keep up. I just kind of felt like an outcast. I wasn’t bullied per se, but I was definitely treated differently.”
To Lilly, being different was worse than any of the physical pain caused by his arthritis.
“I kind of just fell into a vicious cycle with kind of an inferiority complex,” he said. “I wasn’t very confident. It was pretty tough throughout elementary and middle school.”
As a youngster, Lilly didn’t have the discipline to eat well, which meant avoiding complex carbohydrates and sugars. “Now I try to maintain a high protein diet with simple carbs, veggies and rice,” he said. “It started to get better, but I was not doing everything in my power to make it go away.”
There were no cuts in wrestling and Lilly heard there would be no cuts in crew, but there were. He surprised himself when he made the group of SHS athletes represented on the greater Pelham Community Rowing Association team. He made the cut with a 2,000-meter ergometer (rowing machine) time trial. “At that point I was so bad at rowing,” Lilly said. “My technique was not great.”
Sticking with the sport, however, would change his life.
“The coaches at the time didn’t really open up my eyes to the whole idea of how rowing performance is really directly correlated with the time you put in regardless of circumstances in your life,” Lilly said.
With no running involved, crew didn’t take a toll on Lilly’s joints. He could finally compete “without worrying about the burden of arthritis.” And without the burden of his coaches knowing about his circumstances.
The summer after his sophomore year, Lilly began working out at New York Sports Club about a mile from his house. He’d often run there and back. Yes, run. “It started to get better and with cleaning up my diet and getting the cardiovascular work in, it started to help it improve,” Lilly said.
A coaching change the next year, however, made all the difference. Reid Johnson took over and Tom Marth worked with Lilly and the other novices, giving him the tools to succeed.
When Johnson, a former assistant coach at Princeton, took over the team that fall, Lilly really began to develop within the sport.
“He just stressed that if you train on the rowing machine it will pretty much correlate with your performance,” Lilly said. “Technique is also very important, but the guys that went to the best colleges just spent hours on the rowing machine every day pretty much.”
Still not on the varsity team, Lilly continued working hard and progressing. He’d go to bed at 9 p.m. to get proper rest and wake up at 5:45 a.m. so he could do strength training before school.
Lilly was still in the worst boat on the team that fall, but he spent the winter indoors training and spending time with his coaches, talking to them about their goals and his goals. For the first time, Lilly got his 2K erg time below 7 minutes at the St. Valentine’s Day Erg Massacre, as did some of his teammates, and they began setting their sights on nationals. Lilly didn’t make the top boat — or nationals — but his JV 8 boat took bronze at states, his first notable accomplishment in the sport.
After a 24th-place finish at the club nationals time trial over the summer, Johnson recognized Lilly’s dedication and named him team captain. “It was pretty crazy,” Lilly said. “He took notice and that was a huge milestone for me, really an incredible moment. I was really happy and proud of everything I’d done.”
Lilly saw himself as one piece of the puzzle in whatever boat he was rowing and within the team, so he took his role of captain seriously and helped his teammates set a list of non-negotiable standards when it came to things like nutrition, hydration and rest.
That fall, now a senior, Lilly’s goal was to compete at the prestigious Head of the Charles race in Boston. However, he didn’t make the cut.
“It was completely devastating,” he said. “I freaked out.”
Lilly turned negative into positive as he decided that if he couldn’t row in Boston, he’d race in the New York City Marathon. He had to act quickly, however, as he needed to find a charity to raise $3,000 in order to qualify, and he had less than two months to train. The Arthritis Foundation accepted Lilly’s application, and he was finally starting to share his story.
Lilly hadn’t done any long runs at that point, but his cardio was through the roof thanks to rowing, so Lilly literally hit the ground running and never looked back. “I didn’t know anyone remotely close to my age who had run a marathon before,” he said. “The training was incredibly difficult. It was mental torture pretty much. You’re out there alone. But now I’ve found that if the why is powerful, the how is easy. I was really doing it to prove to not only myself but other people that if you have a diagnosis or you’re dealing with something, it’s just a speed bump and you can overcome anything you set your mind to within reason.”
On Nov. 4, 2018, Lilly competed the NYC 26.2-mile trek in 4 hours, 44 minutes, a 10:52 per mile pace. “Finishing was really what I had in mind,” he said. “That was a really emotional moment.”
Lilly was back indoors on the erg prepping for his senior spring of crew. Again that season Lilly did not make the boat that would be pushing to make nationals. Again he felt destroyed. That’s when he set his sights on the Lake Placid Ironman, a 2.4-mile swim, followed by 112 miles on the bike and a full marathon right after that. “It was a pretty far out goal,” Lilly said. “The training itself was a whole other beast. There was a solid chance I wouldn’t be able to complete.”
Lilly got advice from local Ironman aficionado Diane Calderon and set off on his training. On July 28, Lilly conquered yet another challenge, this time in 15 hours, 27 minutes. “It was pretty annoying I missed the 15-hour mark by 27, but I was ecstatic to complete it,” he said.
Lilly completed the swim in 1:25.36, the bike in 7:03.10, the run in 6:05.33. He was 39th in his division — it’s a sport for the older crowd for sure — 1,149th for his gender and 1,476th overall.
For Lilly, there are no steps backward. He’ll put his heart and soul into rowing in college and pursuing his new passion, cycling. Swimming is lowest on his list and with running he would like to do the Boston Marathon.
“I just really want to take endurance sports to the highest level I can,” Lilly said. “I find a ton of value in setting very ambitious goals and figuring it out along the way. People are capable of a lot more than they think they are.”
Brian Lilly is proof of that.