Sports Women's Sports

Persevering Pacer: Kendra Cerce’s fight with rare diseases while swimming

By Vin Gallo
Managing Editor for news/features

She’d think about it.

“This is the last year.”

“Just make it through this year and you’re done.”

Early in her college career, when she’d get to each winter or summer break of school, she’d think about making the call.

“I’ll make it tomorrow.”

“Tomorrow, I’m making the call.”

But Kendra Cerce never made that call to Springfield College to notify that she would drop out.

As a student-athlete for the women’s swimming and diving team, diagnosed with epilepsy and cyclic vomiting syndrome (CVS), she had alternative options. She could have done night school. She could have done online classes, either from home or from a hospital bed in Boston.

But, no.

No. There wasn’t anything that was going to keep her from the water, or living the way she wanted to.

“I don’t know what you want to call it. Determination? I don’t know if you want to call it strength or resilience. I call it stubbornness, personally,” Cerce said.

She made sure to emphasize that last part.

“Because I am stubborn.”

Her time with the Pride ended exactly how Cerce wanted, as she made the turn into the last stretch of her last race, in the 100-yard freestyle time trial for Springfield during the NEWMAC Finals. The feeling of surrealness the senior had experienced through her previous last few meets was gone. Replaced.

“I had this crazy sense of peace. I thought I was going to be upset, like I was going to miss it,” Cerce said. “(But) I was really at peace. I was content with how I finished.”

Cerce completed her last collegiate event in under a minute — a time of 59.12, good for second in the heat.

Her teammates were there to greet her when she touched the wall for the last time. They were waiting for her. Just like she’d always do for them. No matter what.

The wall was the same place Cerce would normally cling to after completing her main event: the distance freestyle.

She’d be exhausted and on the verge of seizing. But after a relay event, she’d never leave the water early. She’d always wait for her teammates to finish.

There were tears shed and plenty of hugs from Cerce’s teammates when she climbed out of the pool at WPI after finishing her final race.

“It’s amazing how much she fought just to be on the team and compete,” Monique Forte, Cerce’s teammate said. “It’s amazing. When someone says, ‘Ouch, my shoulder hurts, I’m not going to swim as well.’ You have to suck it up. Here’s Kendra, literally fighting her own body.”

Photo courtesy Kendra Cerce

***
Springfield women’s swimming coach John Taffe was caught off guard when Cerce, then a freshman, slapped three folders on his desk — one for each of his two assistant coaches and himself. It was mid-October. Cerce had called a private meeting with just the three of them.

Outside of her family, it was the first time she was going to tell anyone about her condition. Growing up, she’d skim its severity. Beat around the bush. ‘It was just a migraine,’ she’d say upon returning to school.

“Nobody knew,” Cerce said. “Elementary school, middle school, even high school — I kept it from everybody…I didn’t always admit to myself and to others how bad it was.”

But there was no way she could hide her CVS from the Pride. And she couldn’t hide it from the coaches. Cerce spent 26 to 30 hours with the team a week. She didn’t want to alarm them, if she were to seize during a practice or meet.

Cerce reiterated what was inside the documents she had given them — explaining the nature of CVS, a disease only 2 percent of the world’s population lives with. It’s a condition that cycles over an 80-day span. Every three months or so, she experiences ‘the big episode,’ where she can suffer anywhere from six to 20 hours of vomiting, migraines, and seizures.

Cerce’s doctors had diagnosed possible triggers. Any emotional stress. Driving a car over a long period of time.

Any sort of physical activity over a long period of time. Springfield has nine practices each week, three mornings per week — an hour and a half before classes start. Then, every afternoon for two and a half hours. In the morning, the team swims 4,000-5,000 yards. In the afternoon, they may swim 7,000-8,000 yards. There’s practice on Saturday too, if there is no meet.

For swimming, the training is constant, almost nonstop.

“To be quite honest with you, I think our jaws were on the floor after she explained it,” Taffe said. “She knew that the next cycle was going to be coming very soon … She was very adult-like, she explained that she had been going through it since she was 18 months old. And we’ve gone from there.

As an athlete, there’s no question that Kendra has talent, and by the time when she was able to do what she was capable of doing, she did very well.”

As Cerce explained her condition, Zack Wahl, Clarkson University’s men’s and women’s swimming coach, who was one of Taffe’s assistant coaches at the time, held eye contact and attentiveness the entire time.

Before his stint as Taffe’s assistant, and before his time at Springfield, Wahl was a Division I swimmer for UConn. He swam at a national level. Then, the Huskies found out about his heart condition and cut him from the roster. After losing his spot on the team, Wahl transferred to Springfield.

“People don’t always get it because they think, ‘It’s just swimming, it’s just sports,’” Wahl said. “But, especially with a sport like swimming, it’s so grueling and the amount of time and effort you put into it, to do it at a collegiate level, you really have to commit such a portion of your life to becoming competitive.

Putting in all that hard work for basically a decade or more, getting there, and then having somebody take that away from you, is one of the most crushing things that can happen.”

Wahl followed Cerce out of Taffe’s office, who was a bit shaken after discussing her condition for the first time in her life. He made it clear to her that he did not see his condition anywhere near as serious as her own. However, Wahl did tell her about the doctors who gave him trouble about being cleared, about the coaches who turned him away.

He understood. Although he didn’t suffer from the same symptoms as Cerce, he knew about her worries. He knew how she felt. If she needed anyone to be there for her, Wahl was going to be there.

“I knew from that second on that it was going to be different with him,” Cerce said. “I was like, ‘Woah, that (was) the first time anyone had ever said anything like that to me. And he wasn’t kidding — anytime I looked even a little bit off, he’d be like, ‘What’s going on?’

He knew it before I did.”

Photo courtesy Kendra Cerce

***
For the longest time, doctors didn’t know what it was. They couldn’t figure out what was making Cerce sick. For a while, the diagnosis was diabetes, something that she didn’t have. Fatty oxidation disorder — she didn’t have that either.

Cerce said doctors looked into ‘everything in the book.’ They tested for brain tumors, asthma — everything. Nothing fit the symptoms that she was experiencing since she was 18 months old. Cerce was not correctly diagnosed with CVS until she was almost 9.

“I remember my parents frustration,” Cerce said. “More than anything. They just never got the answer.”

When doctors did finally get their answer, there was, naturally, excitement. It had been over eight years of trial and error. Though at the same time, Cerce’s doctors were also somewhat disappointed. Because with Cerce’s condition, the path ended at the diagnosis.

“CVS…..that’s it,” Cerce said. “You can say, ‘She has CVS but we don’t have any answers for you.’ There’s no cure, there’s no medications for it. There’s no research behind it. ‘It’s one in 100,000 who have it. It’s the sixth rarest disease in the U.S., ninth in the world. We have nothing to help you.’”

Cerce started swimming when she was 7 years old. Like everyone else, she started out simple. In the beginning, it was one lap of freestyle, usually by doggy paddle. Whatever they can do to get to the other side. Then came two laps, along with the teaching of each of the strokes. Three laps of either freestyle or a certain stroke when they got the hang of those.

Then four laps. Then five.

By high school, Cerce was swimming a little bit of everything — competing in any and every event her coaches placed her in. When she got to Springfield, the team put a bit of perspective on her ability in the pool, after watching Cerce over a few weeks of practice.

Cerce could ‘pace,’ or, hold the same time over a long period.

The Pride placed Cerce in the long event competitions. The mile. The 1,000. The 500-free. For her entire Springfield career, she specialized in all of the long distance races.

But the mile, the 66-lap race — that was ‘her event.’ It’s what she always trained for, despite going into the races, willingly knowing that she was going to seize after every mile she ever swam.

“Healthwise, definitely not the best choice,” Cerce said with a chuckle. “There’s not a lot of distance people on the team, because not a lot of people are crazy enough to do that. But, I liked it, unfortunately.”

She smiled again.

“And I was good at it. Unfortunately.”

Cerce’s love for swimming never ceases to put her teammates in awe.

“(Kendra) just goes for it,” Forte said. “I’ve never met anyone like her before, who has the passion and more dedication to their sport.”

Cerce’s parents, Carolyn and Vincent, have gone to every one of their daughter’s meets. They are aware of what happens to Kendra afterwards.

“They question it,” Cerce said. “They say, ‘Are you sure you want to do this to yourself?’ And I’ll go, ‘Yup.’ And they’re like, ‘Okay, if you are going to make this choice, that’s fine, we don’t agree with it, but we’ll help you after.’

They’re not good choices, but they’re my choices, and whether they agree or disagree, they’re there, regardless.”

Photo courtesy Kendra Cerce

***
In addition to epilepsy and CVS, Cerce sees six different medical specialists for other conditions. Cerce understands that doctors in each speciality research their respective condition constantly, and are simply trying to make her situation better.

She’s heard it all.

‘You’re being ridiculous.’

‘You’re doing it to yourself.’

‘Whatever happens is on you.’

‘It’s not worth it.’

“If they say, ‘Don’t go swimming — definitely don’t do the mile, if that’s a trigger for you,’ and I turn around and do the mile, they get kind of frustrated,” Cerce said. “Rightfully so!”

Cerce has openly told her doctors that she knows she shouldn’t be swimming. But she’d rather swim the mile and be happy, even if it means seizing, rather than staying out of the pool while being unhappy.

“I take it (the criticism from doctors),” Cerce said. “Half the time I agree with them. I’m like, ‘Yeah, it’s probably not (worth it).’ Or, ‘Yeah, I probably am doing it to myself.’ Or, ‘I’m definitely doing it to myself.’ The mile? Absolutely. I am inducing that seizure.”

Cerce has had to pick between quality of life and ‘playing it healthy’ hundreds of times. Though the decision is never difficult. Rarely ever, does she pick the latter.

“I can be healthier and sit in my room and do nothing with my life,” Cerce said. “School is stressful, that’s a trigger for me. Swimming is physically and mentally stressful, that’s a trigger for me. Being out and active, in any way, is technically a trigger.

So if I sit in my house, and don’t do anything, I will be a healthier person. And I will have less symptoms. But I will be absolutely miserable. I’d rather have to deal with a lot of symptoms and have a great quality of life than not enjoy myself.”

Photo courtesy Kendra Cerce

***
It was the end of her freshman season, part of a year that Cerce described as one of the toughest of her life. She was racing for a spot in NEWMACs. For the entire race, Wahl ran up and down the pool cheering Cerce on.

She qualified.

“To this day, it was the fastest I’ve ever swam,” Cerce said.

Wahl had stayed true to his promise — he had acted as her go-to throughout the year. Cerce, by no means considers herself a homebody. But her first year at Springfield tested her, away from Norton, Mass. While 90 miles away from home, she struggled with her health. There would be times where she’d debate with herself whether to stay at school.

“I would not have made it if it were for specific people in my life,” Cerce said. “It was so bad, it was so hard … College, medically, was very hard for me.”

Wahl finished grad school in 2017. But Cerce met her another friend who helped both her comfort and independence. April 7 marked the one year anniversary when she got her service dog, a labradoodle named Chase.

“After leaving, I was honestly a little worried about her being there without me being around, or somebody who really knew the ins-and-outs of how to help her,” Wahl said. “But that dog has made such a difference.”

Chase is never shy at the Pride’s practices. As soon as he gets to the pool with Cerce, he’s always sure to race around its deck before stopping by the coaches’ offices to say hello. Sure, he’s just like all dogs — energetic and happy.

Chase has also saved Cerce’s life. Twice.

“He’s never missed (a seizure),” Cerce said. “And I’ve had hundreds.”

Chase has the ability to sense her seizures up to 15 minutes before they happen. Cerce, who lives an hour and a half away from campus, used to be terrified of driving long distances. She’d sit in class, worrying if she’d seize right then and there.

“(Chase) has given me so much independence and the ability to live my life without fear,” Cerce said. “It’s not something you realize you needed until you have it … He’s smart. I joke, though it’s not really a joke, he’s smarter than I am. He is a smart dog.”

Wahl still keeps in touch with Cerce, one of his best friends. Whether it’d be meeting up somewhere, or over the phone, he’s always been caught up to date on how she’s doing.

“To see the stuff she goes through, it’s tough,” Wahl said. “It’s tough to watch sometimes. It’s such an unforgiving sport too. The pain she puts herself through just to compete, and then be able to watch it pay off, it’s one of the most rewarding things that I’ve ever seen as a coach.”

Even after she graduates in May, Cerce’s returning teammates next year will stand by what they’ve learned from their senior teammate.

Danielle Hoffner, a junior for the Pride will always remember the lengths that Cerce went to in order to return to competition midway through last season. Cerce had just undergone surgery that required more than 20 stitches. The day that doctors cleared her to swim again she was in the pool. Cerce joked with Hoffner afterwards: if Cerce could have surgery and be in the pool two weeks later, there’s no cut or minor ailment that can hold Hoffner back.

“The big thing about swimming is that it’s genetics, but an even bigger part is heart. Kendra has heart and dedication that you don’t see in a lot of swimmers,” Hoffner said.

“If you have the mentality of Kendra, you are unstoppable.”

To have that mindset means to persevere. To be stubborn.

To never make the call. To never give up.

Photo courtesy Kendra Cerce

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