Dancing With an Invisible Disease: Cystic Fibrosis
Dancers are used to working incredibly hard to achieve their technical and artistic goals. But for dancers with cystic fibrosis, a chronic lung condition, daily management of their illness is already a full-time job. The disorder causes mucus to build up in the lungs and other organs, sometimes leading to multiple infections, procedures and surgeries. However, it’s an “invisible disease”—you wouldn’t know someone has it just by looking at them. Dance Spirit spoke to four dancers who are not allowing CF to hold them back from doing what they love.
The Best Medicine
When Tom Oakley started dancing at 7 years old, he immediately loved it. But at age 2 he’d been diagnosed with cystic fibrosis (CF), so his parents hesitated before signing him up for classes. “My parents were scared because dance is in a hot, sweaty room full of loads of people,” he says. “It’s a bacterial breeding ground.”
But he quickly discovered that dancing actually allowed him to keep his condition under control. All the hours he spent in dance running and jumping around kept him healthy. “It liberated me from a lot of treatments I would have had to have done,” he says. “I’m very grateful to dancing for that.” For example, Oakley doesn’t need to wear an oscillation vest, a CF treatment that helps shake mucus out of the lungs.
His health routine includes taking dozens of pills a day and eating a high-calorie diet. In addition, he regularly measures his lung function, which is currently around 120 percent. “Since I’ve started dancing it’s never gone below 100 percent,” he says. (The normal range for lung function spans 80 percent to 120 percent.)
He also connects to others in the CF community via Instagram for virtual support. “It’s been such a nice experience to talk to people who are in the same boat,” he says.
Despite his efforts, his condition does occasionally flare up. One infection led to 18 months of antibiotics taken through a nebulizer three times a day. A simple cold can become life-threatening for people with CF, so Oakley’s learned to be vigilant.
Another time, after finishing a performance, he ran offstage and had a five-minute coughing fit. “That point was a real eye-opener,” Oakley says, when he realized his illness was not something that would ever go away. Though he still struggles, that moment made him more determined than ever to develop as a dancer.
Now 18, Oakley recently auditioned and won a spot at the Rambert School of Ballet and Contemporary Dance. Oakley believes the success wouldn’t have been possible without his commitment to staying on top of his health. “That’s not to say it didn’t come with ridiculous amounts of hard work and many tears,” he says. “Happy tears and hard-working tears.”
Surviving and Thriving
Dance companies everywhere have struggled to adapt to the pandemic. But being high-risk has made it an uphill battle for Rebecca Friedman, a 34-year-old dancer, teacher and co-director of Charm City Ballet in Baltimore. “I’ve been in full quarantine a lot longer than the average person,” says Friedman.
By the end of last year, the company was planning its big return with A Christmas Carol. “It was supposed to be Charm City Ballet’s first production back onstage since before the pandemic,” says Friedman. But the day of the show, they were forced to cancel after two cast members tested positive for COVID-19. “That was devastating.”
Keeping her illness in check on a daily basis involves taking about 50 pills plus two medication therapy sessions, ranging from 30 minutes to an hour each, along with airway clearance. Having a routine and being consistent on both good and bad days helps the bad days, she says.
But she says having CF has also taught her to manage challenges: “I have a drive to survive and I don’t give up very easily.” She’s also learned when to push through and when to take a day off. On bad days, Friedman leans on her fiancé and co-founder of Charm City Ballet, Peter Commander, as well as her family.
Along with lung issues, Friedman also has osteopenia (brittle bones), CF-related liver disease and other offshoot problems. But instead of allowing these health problems to negatively impact her life, she uses her difficulties as motivation to help others by participating in fundraising walks for the Cystic Fibrosis Foundation. In recent years Becca’s Brigade has raised more than $20,000 in donations. She also posts on social media to inform people about CF.
“I’m a very resilient person,” she says, “And that’s such a great thing to have in ballet.” Without resilience, she wouldn’t have persevered and achieved all that she has. “Nothing comes easily,” she says. “You have to work for every advance that you make.”
A “Bionic Ballerina”
Growing up, Bailey Anne Vincent was often sick with unexplained stomach and respiratory problems. In her twenties, Vincent finally got a diagnosis: atypical cystic fibrosis, a milder form of the disease that often presents differently than classical cystic fibrosis. Despite surgeries and hospitalizations, and later losing her hearing, she danced professionally around Washington, DC, and eventually founded Company 360, a body-positive dance company.
Now 35, she credits her love of dancing for helping her cope with illness. “Dance has kept me alive and thriving for longer,” she says.
She has also collaborated with other companies, such as BalletNext, to create pieces that integrate ballet and sign language. She hopes her performances will raise awareness of and inclusivity for Deaf performers.
Since the pandemic began, mask-wearing has made things difficult for Vincent, who uses lip reading in everyday conversations. “I suddenly felt shut off from half of the way I navigate the world and professional spaces,” she says. During rehearsals, company members all wear KN95s with transparent panels so she can see their mouths. The rehearsal director has learned sign language as an additional means of communication with Vincent, and also to provide a sign-rich environment for company members to learn from and around.
Over the years, the delayed diagnosis has caused Vincent’s health to suffer from the lack of medical treatment. She’s undergone spinal surgery and had most of her colon and large intestine removed. She often calls herself a “bionic ballerina” because of multiple devices in her body that help regulate her organs.
But Vincent says her health setbacks have actually felt like a gain rather than a loss: “Sickness—or even injury, which most dancers will face—can give us limitless perspective on how lucky we are to dance.”
Comfort in the Chaos
A new generation of drugs could promise a brighter future for people living with cystic fibrosis. For 22-year-old Lauren Luteran, who competed on “So You Think You Can Dance” in 2019, recent pharmaceutical advances have literally changed her life. After switching to Trikafta, her health improved dramatically, and she hoped to finally take her dancing to the next level. But then the pandemic descended and the world went into lockdown.
At first she struggled with the restrictions and dancing took a backseat for a while. With so much downtime, Luteran began searching for other creative outlets that would allow her to express herself. “That was the initial spark for writing my book,” she says.
For years Luteran had wanted to share her story as a way of helping other people facing adversity. “When COVID hit, I knew it was the perfect opportunity to go for it,” she says. That’s when she decided to write her book, Breathing Easy. “I knew I needed to do this for myself to push forward.”
Since then, Luteran has cautiously returned to the studio and resumed teaching. “I had to navigate to find a way back into something that I fell in love with,” she says. “I find that having that light-bulb moment with students is really satisfying and rewarding for me as a teacher now.”
Another way she’s turned her challenges into something positive is by volunteering for the Cystic Fibrosis Foundation, which is searching for a cure. “The foundation has literally given me a second chance,” she says.
Looking back, her battles have proved to be a blessing. “I’ve learned to find comfort in the chaos,” says Luteran. “It’s important to go to your roots. And always remember your purpose.”