Sacred Heart’s Bryana Cielo shares story of epilepsy, her story of strength
It was October of 2017 when Bryana Cielo went to breakfast with her friends at Linda’s Dining Hall on the campus of Sacred Heart University. She had felt some twitches in her body for a few years and didn’t know what they were. On this Sunday morning, Cielo’s arms and legs twitched more severely.
She was dehydrated. She went to grab a bottle of water. The next thing Cielo — then a sophomore — knew, she was waking up on the ground and her coach John Spadafina was there. She had no idea she had suffered the first of three grand mal seizures that would end her swimming career and change the course of her life. The convulsions were so severe the labrum on her right shoulder was torn.
“It literally ripped my shoulder out of the socket,” Cielo said. “I was so concerned about my arm I wasn’t understanding the whole situation.”
What’s worse, there were people taking video.
“It was terrible,” Cielo said. “Everyone thought it was a joke. That’s part of the reason I write about epilepsy. A seizure is an odd thing to see. It’s not anything you’d expect or remotely like anything you’ve seen in your life.”
Cielo, graduating this
spring with a double major in media arts and communications, has some fears. She’ll be driving and thoughts will creep in that she could have another seizure at the wheel. She’s also a fearless young woman, unafraid to bare her soul in hopes people will better understand epilepsy. She writes poignantly in her blog. She writes for SwimSwam.com.
And on Tuesday, Bryana Cielo, along with Yale quarterback Kurt Rawlings, was named the recipient of the Hartford HealthCare Connecticut Courage Award. Cielo found out when Spadafina called last week and told her to check her email.
“Katelyn Mann, who swims at Central Connecticut and was on a same club team I was on in high school, won this award,” Cielo said from her home in Ringwood, N.J. “She overcame Hodgkin’s lymphoma. I feel so honored to receive this and to see what she went through, and to get the same award? She’s the strongest person I’ve ever met.”
The record will show Bryana Cielo knows plenty about strength, too.
After the first seizure, she was taken to the hospital and was put on medication.
“The doctor said, ‘I’m not God, but I think this is the only seizure you are going to have,’ ” she said.
Cielo, who had been part of the school record-setting
200-medley relay team as a freshman, was given clearance to return to swimming. She began to rehab her shoulder. The team went to Florida for its training trip in January
2018. She went all out on her best event, the 100meter butterfly. Spadafina was surprised and impressed.
“The next day I was so much pain,” Cielo said. “I went to the doctor and he said he didn’t know how I was even able to do the butterfly. The shoulder was in bad shape.”
Cielo opted for surgery in February 2018.
A month later, she went to sleep too late yet insisted on getting up early and walking on the treadmill.
“I guess I’m an overachiever,” Cielo said.
The second grand mal seizure struck that night at the movies. She went to get
popcorn.
“I never got my popcorn,” Cielo said. “This one lasted much longer than the first. Generally, when they’re above five minutes, they can be fatal and it was very close to five minutes.
“I woke up and I knew what was happening this time. The paramedics were already there, but I couldn’t speak. That was the scariest thing.”
She tried. The words were gibberish. She kept saying “ambulance.” It kept coming out as “elevator.”
“My brain was so miswired at that point,” Cielo said. “One of the paramedics went, ‘She’s tachy.’ The only time I’d heard that phrase was on ‘Grey’s Anatomy.’ It means tachycardic (heart racing more than 100 beats per minute). You know when they say, ‘tachy.’ And there’s the beeping noise? I was convinced I was dying.
“The paramedics saw my face and they must have thought I was offended. They’re like, ‘We didn’t mean you’re tacky (as in cheap showiness).’ Yeah, it’s kind of funny now.”
In the summer of 2018, she went to her doctor.
“I told him I love swimming, but I’m not Michael Phelps,” Cielo said. “He said, ‘Are you going to the Olympics?’ I said no. He said, ‘I really don’t recommend you swim.’ ”
An overachiever? She holds a 3.7 GPA. She was editor-in-chief of the Sacred Heart student newspaper. This past semester she worked as a television production intern with “The Maury Show” in Stamford. Her next employer will be lucky. Still, the thought of not having to get up for 5:15 a.m. practice, to avoid the risk of drowning along with the anxiety of academics — there was some sense of relief in 2018. There also would be darker feelings and a third seizure in January 2019.
“My medications were making me really depressed,” she said. “I was in such a bad mindset. I couldn’t take it anymore. The medications for epilepsy are very tricky. I went off the ones that really worked for me.”
She was sitting on her couch and fell face down in her third seizure. Cielo’s roommate Jessica Wenz, a diver before injury sidelined her, wants to go into the medical field. Cielo had been adamant with Wenz
and others to learn seizure response.
“Jessica was right there and flipped me from my stomach onto my back or else I would have stopped breathing,” Cielo said. “My airway would have been blocked. She saved my life.”
Cielo has found a balanced combination of medications and hasn’t had a seizure since. Sacred Heart kept its commitment to her partial scholarship and Cielo would be one of the team captains her senior season. She supported her teammates. They supported her. She also had been a head coach of a youth team in New Jersey for two years. She was a lifeguard. She swam at Montville High School and became a DI swimmer. And now? She needs a lifeguard on duty for the rest of her life if she swims on her own.
“Yeah, imagine that,” Cielo said. “We live on a lake and I went on a paddleboard one day. My mom’s yelling at me from the patio to put on a lifejacket. I’m like, ‘Mom, no! I can’t! My dignity won’t allow it!’ ”
She has lost neither her humor nor her gratitude. She thanks her mom and stepdad, Nancy VaresanoDale and Robert Dale. She thanks Spadafina, who visited her in the hospital and remained so understanding: “I think it broke his heart; he cries whenever he talks about it.”
She thanks Dr. Orrin Devinsky, from NYU, and his partner Dr. Andy Rodriguez, for being the best in the world. She thanks her teammates for making her feel welcome even when she couldn’t swim. She thanks Wentz and her boyfriend, Sam Zietara, whom she met her freshman year, for being her constants. “When things get tough, it’s really easy to leave,” Cielo said. “He never wavered. There were times when I’d just sit in my room. I was scared to go out. He never got mad. He never got frustrated. He sat there with me.” Still.
“I was not at peace,” Cielo said. “I’d be there crying on the pool deck, watching my best event, thinking I’d do anything to get into the water again.”
Spadafina promised Cielo if she was healthy she would swim as a senior. A year free of a seizure, they talked. What about Senior Day? She hadn’t trained in two years. Because of her
shoulder, the 100 fly was out. She didn’t want to embarrass herself. What about the 50-meter freestyle?
Cielo got medical clearance. She swam in the Jan. 18 Senior Day dual against Siena at McCann Natatorium in Milford.
“I got out of the pool and Coach is like, ‘Do you want to swim at NECs?’ ” Cielo said. “I was ecstatic. Didn’t practice for another month. Wasn’t allowed. Pulled on a tech suit for the first time in two years and thought, ‘Yeah, this is a big meet.’
“Getting up on the blocks was the best. My teammates were screaming. My parents were there. One more race. My bonus race. My strength is underwater, so I went halfway, got back up and was thinking, ‘Just fling your arms as hard as you can.’ I didn’t get last, which was what I expected. That was good.”
She got sixth in her heat at Long Island Aquatic Center with a personal-best time.
“It was surreal,” Cielo said. “It’s hard to describe. It was like I was coming home. I know. That sounds corny.”
Not corny. Beautiful. “It can be tough to tell my story, but that’s one of the reasons I do,” Cielo said. “I think it’s so important to understand what it is. Those people taking the videos that day didn’t know what was going on. They thought it was a joke. It can look silly. You can’t blame people. And after my roommate saved my life, she needed a minute to recover. She thought I was dying. It was hard to see someone she loves go through that. Thank God, my mom and my boyfriend haven’t seen it.
“Epilepsy can make you feel very alone. To me, it’s embarrassing, a seizure in public. It comes out of nowhere. I know I could have one tomorrow. People don’t understand it. And the anxiety is the worst. But then I’m at the doctor’s office. I see little kids in wheelchairs, they can’t speak, seizures every day. It breaks my heart … and I feel lucky, definitely stronger.”
So Bryana Cielo shares her story of epilepsy, her story of courage, a story we need to know.