It all started with a question in an old issue of Pointe magazine: “I feel bad sending all of my dead pointe shoes to a landfill. Is there any way to recycle them?” When Katarina Jakimier read the answer—“Currently, there are no specific pointe shoe recycling programs”—her mind started to churn.
“I really care about the environment,” says Katarina, 13, a student at Texas Ballet Theater School in Dallas. “And since dancers go through so many pairs each year, I was pretty surprised they didn’t have a way to recycle them.” After all, “they’re basically made out of cotton, satin and jute. Those are all natural fibers, so they’re excellent candidates for recycling.”
Katarina, then 12, decided to take matters into her own hands. In February 2014, she began working on the Dallas Pointe Shoe Recycling Project. Now, thanks to her work, the Dallas dance community can breathe easier knowing it’s doing its part for the environment: Instead of sending worn pointe shoes to the dump, dancers in the area can drop them off in recycling containers around town. From there, the shoes get picked up, broken down and eventually made into something else.
Katarina shows off a pointe shoe recycling bin at the Ivivva by Lululemon showroom in Dallas, TX (photo courtesy Mary Jakimier)
Putting a Plan in Place
Katarina knew starting a recycling initiative wasn’t
going to be easy. But she had another driving factor. A longtime Girl Scout, she had been searching for the right project to submit for the Girl Scout Silver Award, the most prestigious prize for Scouts in sixth through eighth grades. And because the rules state that candidates must spend at least 50 hours on their projects, Katarina wanted to choose something related to her passion: dance. A pointe shoe recycling project seemed to be the perfect fit.
“My first step was visiting the major dance companies, dancewear stores and studios in town to find out if any of them had recycling programs,” Katarina says. “They didn’t—but they all said to let them know if I found anything. So I became even more convinced our community really needed this.”
A Test of Perseverance
Katarina began calling recycling centers, but finding a local company that recycled textiles—not just glass, plastic or metal—proved challenging. “It was even harder to find a textile recycling plant that accepted shoes,” Katarina says. Many times, she’d reach out to a representative who would, in turn, tell her to call three other people—who would then point her in other directions. And each time, she’d have to start at square one: explaining the pointe shoe cycle. “A few people thought ‘Oh, well, all shoes can be reused,’ ” she says. “I really had to be clear that once pointe shoes are dead, they’re dead.”
By March, Katarina had started forming a backup plan. “I got in touch with a company called World Wear Project,” she says. “They don’t quite recycle—the plan was to collect old but still wearable ballet slippers and redistribute them.” But the reuse idea wasn’t really what Katarina was hoping for. She also thought about collecting worn pointe shoes and mailing them to a center across the country for recycling, but that system was faulty, too. “I didn’t like the idea of asking a dance studio to package the shoes and pay for shipping,” she says. “It would’ve been a big burden.”
The Pointe Shoe Recycling Project
Just when she was getting desperate, Katarina received an email from American Textile Recycling Services. Its representative was able to point Katarina in the right direction: a recycling bin in Dallas that would accept pointe shoes. “My project was back on!” Katarina says. “Even better was that the ATRS collection bin wasn’t far from my house or the dance studios I’d reached out to initially.”
Katarina set her plan in motion. She placed pointe shoe collection containers—with posters and information sheets about pointe-shoe recycling—in three dancewear stores and two studios. “The containers are airtight, so the smell of old shoes won’t leak out,” she says. Once the containers are full, the store or studio owners take them to the recycling bin, empty the contents and bring the containers back to their businesses to reuse.
Later that summer, Katarina found out that her project had earned the Silver Award. But she’s not done yet: She wants to spread her green toes even farther. “I really hope people will see the project and contact me,” she says, “or start recycling projects of their own. I’m happy with how this turned out and I’m excited to help in other areas, too.”
A year ago, 12-year-old Makenna Miller was living every young dancer’s dream: She was dedicated to training at The Loudoun School of Ballet in Leesburg, VA, and was becoming a consistently successful competition star. She’s been the overall scholarship winner at conventions like NUVO and 24 Seven, and placed in the top 10 at the 2014 Dance Awards, in the top 8 at New York City Dance Alliance in 2014 and was last year’s second runner-up for NYCDA’s National Outstanding Dancer award. But a nagging pain in her knee led to a devastating diagnosis: She had a tumor, and it was most likely cancerous. Here’s her harrowing—yet ultimately triumphant—story.
(Photo by Chris Stark, @starkphotoproductions)
Last year, I started having an annoying pain in my left knee. I ignored it for a while and tried not to let it interfere with my dancing, but the pain kept getting worse. Soon, grand pliés were hurting a lot. At this point, Nationals were less than two months away, and the pain was constant. I was so frustrated—I’d planned to compete three solos at Nationals, and they all had to be re-choreographed because I couldn’t bend my knee all the way or kneel. I cried a lot because I was working so hard, but my body just wouldn’t do what I wanted it to.
After a rough week at Nationals, I took a break from dancing, hoping rest would help get me back to normal. When nothing changed—even physical therapy wasn’t helping—I went to see a pediatric orthopedist. He was confused by my symptoms because I hadn’t had a specific injury that would cause the level of pain I was having, or explain why I wasn’t able to bend my knee. After X-rays didn’t show any broken bones or fractures, he sent me for an MRI.
Less than an hour after my MRI, the orthopedist called my mom. The MRI showed a soft-tissue tumor attached at the joint behind my knee. My parents didn’t tell me much about what was happening, but I noticed them whispering all the time. The orthopedist sent us to an oncologist at Children’s National Medical Center in Washington, DC, after discovering the tumor, and what I didn’t know at the time was that the oncologists believed there was a 90 percent chance my tumor was cancerous. They thought I had synovial sarcoma, which is a rare type of cancer—especially in children, and especially unusual in this part of the body. It was a terrible prognosis, and two days later, I was having surgery at Children’s Hospital.
The doctors were able to remove the entire tumor, but since it turned out to be larger than they originally thought, they also had to remove a small piece of my calf muscle. I woke up in a lot of pain. My leg was in an immobilizer brace that went from the bottom of my calf to the middle of my thigh. Recovering from the surgery was so much harder than I thought it would be. I was bored at home and begged my mom to take me to the studio to see my friends and teachers.
We went to see the oncologist again the following week for a follow-up, and we got good news. The oncologist told us that after testing, they found out my tumor had actually been benign. I didn’t have cancer! It was truly a miracle.
It’s been about ten months now since my surgery, and I feel pretty close to normal. I’ve officially graduated from physical therapy, and I can bend my knee all the way, kneel down and sit back on my heels—which I hadn’t been able to do for almost a year before my surgery. I have a scar on the back of my leg that I can’t hide, but it’ll fade in a couple years.
I’m so glad to be back doing what I love most. I competed for the first time at Youth America Grand Prix this past February, and after being on pointe for just four months—two months before my surgery and two months after my surgery—I placed second in my division in the classical and contemporary categories. I’ve also competed solos at NYCDA and I recently auditioned for the role of Clara in the Radio City Christmas Spectacular. I was named the national ambassador and spokesperson for iDance4aCURE, a nonprofit that raises money to fund research for childhood cancer. When I got my MRI results that day at the hospital, everything changed for my family—but I ended up being so lucky. I decided I needed to give back to those who haven’t heard the same good news I
In many ways, 23-year-old Cassandra Naud is a typical commercial dancer on the rise. She trained in a variety of dance styles from a young age, attended the American Musical and Dramatic Academy’s L.A.-based College and Conservatory of the Performing Arts and hit the ground running after graduation, signing with The Movement Talent Agency (MTA) and jumping into the audition circuit. But Cassandra has something that makes her stand out from her peers: a birthmark that covers her right cheek. Cassandra opened up to Dance Spirit about how her birthmark has affected both her life and her dance career. —Kathryn Holmes
(Courtesy Tio Von Hale)
I was born with what’s called a nevus birthmark on my face. When I was a baby, my parents considered having it removed, but the procedure could have left me with a lazy eye and bad scarring, so they decided to wait and let me make the decision when I was older.
As I grew up, the only time I seriously considered removing my birthmark was right before high school. We even made the appointment with the doctor. But I also kept thinking about how my birthmark wasn’t hurting me. It wasn’t unhealthy. So I decided to embrace how I looked. (I also realized that my apprehensions were less about my birthmark and more about starting high school.)
I began dancing when I was 5 years old, training at FM Dance Station, now called Generation Dance Studio, in Alberta, Canada. I started with jazz and ballet, then added tap, hip hop and contemporary. I was about 9 when I decided I wanted to pursue a dance career, and by high school, I was competing and going to conventions, including Coastal Dance Range, Monsters of Hip Hop and The PULSE on Tour. I even received a Protégé scholarship from The PULSE and got to travel to a few different cities.
I’d always wanted to dance in L.A., but since I’m Canadian, I knew I needed a visa to move there. So I researched colleges in L.A. AMDA was my first choice—and I got in! I enrolled in the BFA program for dance and theater, and I also took advantage of being in L.A.: I went to classes at Millennium Dance Complex, EDGE Performing Arts Center, Movement Lifestyle and Debbie Reynolds Studio. I graduated in 2014, and through an Optional Practical Training visa, I was able to stay and work in the U.S. for one more year. I signed with Movement Talent Agency (the agents attended AMDA’s final showcase) and started going to auditions.
While some people might have expected my birthmark to hold me back, that definitely hasn’t been the case. I think it’s helped me stand out in a good way—people remember me at auditions. In my first year as a dancer, I booked an ESPN promo featuring Maroon 5 and I did a sizzle reel for the TV show “Bandolero,” produced by Kenny Ortega and choreographed by Liz Imperio and Chad Carlberg.
Earlier this year, my birthmark actually helped me book a gig. In April, a writer in the UK saw me in a Facebook group for people with birthmarks, and she contacted me for an article about me in a small magazine. Her piece got passed on to the Daily Mail. From there, my story went viral. One day I woke up and suddenly had 6,000 new Instagram followers. The exposure helped me book a music video for Leona Lewis’ song “Fire Under My Feet”: The director saw my article and asked me to audition. The video was about finding what pushes you in life, and being unique is the fire
under my feet.
Right now, I’m back in Canada waiting for another visa to return to L.A. One day, I’d love to book a world tour or join a company. I’ve also started building a portfolio for modeling.
By now, I’m used to people looking at my birthmark like it’s a problem. But I’ve learned not to dwell on what other people think. If someone on the street looks at me funny, I don’t let it affect me. In the commercial dance world, standing out usually doesn’t hurt. But when it does, I just have to remember that nobody gets every job she auditions for, whether it’s because of a birthmark or just having the wrong hair color. A dance career is never easy—but being different doesn’t have to be an obstacle.
"While some people might have expected my birthmark to hold me back, that definitely hasn’t been the case. I think it’s helped me stand out in a good way—people remember me at auditions."
Two years ago, Christina Ricucci, then 15, was living every dancer’s dream. She was training intensively at Dmitri Kulev Classical Ballet Academy, Westside Dance Project and Murrieta Dance Project in Southern California. She earned top awards at competitions, including Teen Best Dancer at The Dance Awards Nationals in 2013. (She even landed on a cover of Dance Spirit as the 2014 Cover Model Search winner.)
As Teen Best Dancer, Christina spent a year traveling to conventions every weekend. But her grueling schedule started taking its toll—or at least that’s what she assumed when she started feeling out of sorts after a few months. As it turns out, Christina wasn’t just tired or rundown: While on a family trip to Mexico in the fall of 2013, she’d unknowingly contracted Lyme disease. Here’s the scary—and ultimately triumphant—story of Christina’s battle with the illness. —As told to Alison Feller
Touring with JUMP and NUVO was amazing. But by the end of October 2013, I realized I wasn’t feeling like myself. I was growing increasingly tired, and I’d go from being really happy to feeling depressed and angry, and then back to happy. My mind also felt blurry—I couldn’t read, concentrate or even look at my phone.
Despite feeling sick, Christina kept dancing—taking classes during the week, touring with JUMP and NUVO and competing with her studio (photo by David Hoffmann, courtesy Ricucci)
I’ve always had issues with my thyroid and endocrine system: When I was 8, I was diagnosed with Hashimoto’s disease and hypothyroidism, which basically means my metabolism runs super slowly. It’s always been manageable—I took one pill a day to keep my thyroid regulated. So when I started feeling sick, I figured it was my Hashimoto’s acting up, or maybe just something puberty-related.
But when my symptoms didn’t go away, I went to a naturopath—someone who specializes in holistic medicine. She ran some tests that indicated imbalances with my thyroid. She prescribed herbal remedies to help regulate it. On top of the thyroid medication (which a doctor had prescribed), I was taking about 20 pills every day.
For the next few months, I continued to take the pills, under the impression I was suffering because of my out-of-control thyroid. Soon, however, I got worse. My whole body ached and I had sharp pain in my knees and hips. I couldn’t even do a battement. I knew this wasn’t a side effect of Hashimoto’s—it felt different from anything I’d ever experienced.
By summer 2014, I was seeing multiple doctors and undergoing many tests every week. My family and I did everything we could think of—I took vitamins, I followed a strict healthy diet—but nothing helped.
Finally, my doctor brought up Lyme disease. It’s not always easy to diagnose; Lyme hides in your body and tricks it into thinking you have something else. But my doctor noticed infection markers in my blood. She ran two specific blood tests for Lyme, which came back positive, and a few days after my 16th birthday—almost a full year after I first started feeling sick—I was diagnosed with Lyme disease.
During this process, I continued to dance. I refused to let my sickness take dance away from me. But I was completely overworking myself, going to conventions every weekend, competing with my studio and taking regular classes and privates during the week. When I got the diagnosis, I was pretty scared about what it meant for my dancing. I didn’t want my life to change.
Lyme affects everyone differently. For me, it infected my brain—that’s why I was experiencing personality shifts and had excruciating headaches—as well as my joints and muscles. By January 2015, I’d finally hit my breaking point. I could barely walk. So I stopped dancing. It was time for me to take care of my body.
In the hospital (photo courtesy Christina Ricucci)
My treatment was aggressive and went beyond taking pills. After trying many different procedures—including six months of ineffective oral antibiotics—I got an antibiotic PICC line, a tube that went into my arm and transmitted the medicine directly through my veins up to my heart. For the first week, I couldn’t move my arm because it was so sore. I was also exhausted. I drove roughly four hours twice a week to Las Vegas to see my doctor and get blood tests, and that was on top of daily doses of strong antibiotics through my PICC line, plus 90-minute hyperbaric treatments multiple times every week to help kill bacteria in my brain and bloodstream.
The side effects weren’t fun, but the good news was that it was working. After about a month, the pain in my hips and joints started to go away, and blood tests showed that my body was beginning to heal. I got my PICC line out three months later—and I felt ready to dance again! I took my first ballet class on April 30. I was excited to be back, even though I was so sore!
My personality also began returning to normal. It was like I woke up one morning and things were back in perspective. I saw what I went through and realized I could help other people by raising awareness about the disease.
When I announced on Instagram that I was being treated for Lyme, I received so much support. I felt really loved, and I’m so thankful. At first I was terrified to tell people; I didn’t know if they’d make fun of me, and I didn’t want anyone to think I was asking for sympathy.
Getting diagnosed with Lyme disease changed my life and my outlook. Initially I was mad about the whole situation. If I’d been diagnosed correctly and treated sooner, my recovery might have been smoother. But I’ve accepted that all I can do is keep getting better and stronger. I’m dancing as much as I can. I’m focused on getting my technique back to where it was. I’m not going to waste time being sad.
Lyme Disease 101
How do you get Lyme disease?
It’s transmitted by a tick bite, usually during the warmer months. In most cases, the infected tick must be attached to your body for more than a day and a half in order for Lyme to occur.
What are the symptoms?
The earliest sign is usually a rash
that looks like a bull’s-eye at the site of the bite. Then, the symptoms vary by person. You may feel fatigued, or have a headache, lack of appetite, muscle and joint aches and a fever. While not everyone develops a rash, the conventional thought is that if you don’t have a rash after being bitten, it’s unlikely you have Lyme disease.
How is it treated?
Because it’s caused by a bacterium, Lyme disease is typically treated with a course of antibiotics, especially if it’s detected early. Most cases aren’t life threatening, and it’s not contagious. Treating the symptoms with painkillers or muscle relaxants can help as well.
How can you prevent it?
While there’s no vaccine, the best way to avoid contracting Lyme disease is
to avoid being bitten by a tick. Wear long-sleeved clothing and a hat with
a rim whenever you’re in a tick-heavy area, and when you go inside, carefully examine your entire body for ticks. Promptly remove any you see. If you’ve been bitten, or if a rash develops, see a doctor—and bring the tick with you if possible.
Consultant: Dr. Ole Vielemeyer, MD, is an assistant professor of medicine at Weill Cornell Medical College in NYC.
When dancer Georgia Bernbaum was in fifth grade, she participated in a supply drive for the Coalition for the Homeless of Central Florida, a homeless shelter near her Orlando, FL, home. “I started thinking about what it would be like to stay at the shelter, and all the things I’d miss,” she recalls. Then it dawned on her: “The kids don’t get to take dance lessons like I do.”
Fast-forward two years, and Georgia, now 12, is on her way to changing that. In the fall of 2014, she established the Dance Happy Project, which brings dance training to children at the Coalition’s Center for Women and Families. Every three months, Georgia—
a modern dance student at the Center for Contemporary Dance in Winter Park, FL—hires instructors to lead a series of classes on site. And with, on average, more than 200 kids staying at the Coalition each night, the Dance Happy Project is making a big impact.
Georgia’s project started on a much smaller scale: fulfilling a community-service requirement for her upcoming bat mitzvah. “My mom suggested I do something with dance, since that’s what I love,” Georgia says. But while her mom thought Georgia might simply try raising money for one of her dance studio’s nonprofit programs, Georgia had another idea. “I told my mom my plan was to bring dance classes to the homeless,” she says.
Georgia’s mom figured they wouldn’t be able to just walk into the Coalition and lead classes—and she was right. Luckily, the center already had an arts education initiative in place, Art by Coalition Children (ABCs), which recruited professional artists to teach community classes in disciplines like photography and sculpture. Dance, however, was missing from the roster. “They had different programs for art and music, but you need cameras for filmmaking and pencils for art,” Georgia says. “All you need to dance is yourself. And you can carry dance with you your whole life.”
(Photo by Lisbet Photography, courtesy Elizabeth Bernbaum)
Georgia knew she couldn’t teach the classes herself. She approached her dance studio’s artistic director, Dario J. Moore, for guidance. “He loved my idea,” Georgia says. (Moore has lots of experience teaching dance in public schools and in underserved areas.) Georgia formed a partnership with the studio, with Moore agreeing to provide instruction for the outreach classes.
October 3, 2014, marked the newly named Dance Happy Project’s first class at the Coalition. Twenty kids—plus Georgia—attended. “Everyone thought I was just another kid taking the class, but Dario introduced me as his boss lady!” Georgia says. “During the class, everyone got to make up their own dance, and I could see the kids having fun.”
The Next Steps
Georgia didn’t want to stop there. ABCs’ program leaders suggested the Dance Happy Project hold a series of four classes (one per week) four times a year. It was to be the center’s first ongoing ABCs program—if Georgia could sustain it. Though she had
received two grants to help pay the dance teachers, she knew she needed to raise more money to keep the project going.
The solution? On February 9, 2015, Georgia hosted a benefit concert featuring a silent auction and performances by nine local dance companies, including members of Orlando Ballet. It took months to prepare. “I wrote to more than 100 artists and asked if they’d be willing to donate a piece of art for the auction,” Georgia says. Thanks to her diligence, items up for auction included signed costume design sketches from Newsies and Wicked on Broadway, Disney’s Frozen on Ice and The Washington Ballet’s ALICE (in wonderland).
Proceeds from February’s fundraising event totaled more than $10,000, enough to continue the Dance Happy Project for at least five more years. Georgia also plans to hold another benefit concert next year. “She got a lot of requests to do it again—and many dancers who didn’t perform this time asked to be on next year’s program,” says Elizabeth Bernbaum, Georgia’s mom. “They all wanted to help.”
Georgia also has dreams of expansion. She hopes to bring the Dance Happy Project to local Boys & Girls Clubs, and to make sure it can continue after she goes to college. Ultimately, she’d like to replicate the program in other underserved communities across the country. “It can be pretty intimidating to ask people to participate and help,” she says. “But I learned not to be shy. You’ll always have more success when you just go straight for something you want.”
Kelsie competing (courtesy Hall of Fame Dance Challenge)
I was 10 when I first knew something was wrong. I was dancing at a dress rehearsal, and suddenly, without warning, I couldn’t breathe. It was terrifying. My teacher called an ambulance, and I was rushed to the emergency room. My throat had swollen shut and my lips were big and puffy, so the doctors assumed I’d had an allergic reaction. They diagnosed me with allergies to ibuprofen and naproxen, as well as exercise-induced asthma, and sent me home.
After that, similar attacks happened every few months or so—and my allergy medications were doing nothing to help. I could tell an attack was starting because I’d get tired and dehydrated, and then my body would start to tingle. But I was baffled as to what was triggering them because I wasn’t taking the medications I was supposedly allergic to and attacks didn’t always happen during physical activity. There was no pattern. Sometimes I’d even be sleeping and the swelling would wake me up.
I found refuge in dance class. I was on the competition team at Nouveau Dance Company in Plainfield, IL, and I loved being able to walk into the studio and forget about everything else. But every time I got an attack, I’d have to take time off, which made it harder to keep up with my teammates.
By my freshman year in high school, my attacks had increased in frequency and involved swelling in my lips, cheeks, nasal passages, hands and neck. I also started having chronic abdominal pain, and my stomach would go from flat to extremely distended within minutes. It was painful, and I was embarrassed to go out in public. Eventually, I was having some sort of swelling or difficulty at least once a day. Still, no one could tell me what was wrong.
Kelsie giving herself an infusion poolside
Finally, in November 2011, doctors landed on a diagnosis: hereditary angioedema (HAE). HAE is a very rare disorder, so my doctor had to send me to a specialist. The disease causes my internal tissues to swell unpredictably. There’s nothing I did to cause it, and, as of right now, there is no cure. There’s also no known trigger, so I couldn’t eliminate anything from my day to cut back on attacks. I just had to treat the symptoms as they came with two medications, both injections. One had to be administered by a nurse, and the other I could do on my own.
In terms of school and dance, my doctors told me I could do whatever I was able to, which wasn’t much. It became difficult to last a full day at school, so I had to have tutors come in the evening—which meant no dance classes. Even when I could make it to the studio, the pain and swelling made it hard for me to dance full-out. Within three months of my diagnosis, I was taking all my courses at home online. Worst of all, I had to forfeit the rest of the competition season. I remember my first time walking into the studio after announcing I wasn’t going to continue. Every dancer was crying, and they gave me the biggest hugs.
That summer, some friends introduced me to the Shorewood HUGS foundation, home of Huggables, a dance program for kids with Down syndrome. I started teaching six dancers ages 8 to 12 every Sunday for 45 minutes. These kids became like little sisters to me. We began with basic positions and stretching, and this year, I introduced tap. In January, my high school put on a benefit for HAE awareness, and my students were able to perform. I was so proud.
Kelsie (center) with the Huggables
The Huggables are the perfect way for me to keep my love of dance alive, and teaching is a nice distraction from the fact that my attacks are getting worse. Now they last for three or four days, even with treatment. Then I have only a few days to recoup before the next one starts up. In February, I had to stop dancing completely. I stay as involved as possible with my studio, doing hair and makeup for the dancers, supporting the company at competitions and helping my teacher make costumes. Not being able to dance is devastating, but I’m still a part of the team.
People always say, “You don’t know what you’ve got till it’s gone.” I took things for granted, and I regret that now. All I want to do is step back into the studio and work hard and sweat and give everything I have, but I can’t.
Still, I haven’t given up hope. My dance teacher is determined to get me onstage, and I have doctors in Chicago, L.A. and Boston on my team, working hard to get me back into school and the studio on a regular basis. My dream is to go to University of California, Los Angeles, and then medical school. Eventually, I want to help others with HAE. And there’s no way I’m giving up on dance. I’m going to go back, whether it’s next season or in college. It’s going to happen.
Colón and Joon Lee performing in Central Park with Perceptions Contemporary Dance Company
Laura Colón is a dancer, choreographer, runner and philanthropist. She also has Crohn’s disease. While Colón was diagnosed with a severe form of this chronic gastrointestinal disease at a young age, she hasn’t let it rule her life. Instead, she uses it as motivation to work harder, dance stronger and give back to others every day. This is her story in her own words. —Rachel Zar
At 16, my daily schedule was packed. I played basketball and softball for my high school, and after practice or a game, I’d eat dinner in the car and then go straight to dance rehearsal at my studio in Brooklyn. I’d come home around 10 pm, finish my homework and fall into bed. So when I started feeling run-down, I thought I was simply doing too much. When I shivered in a classroom that everyone complained was too warm, I thought I just had “cold blood.” And when I had to use the bathroom 25 times a day, I thought it was just “something I ate.” But after six months of feeling crummy, when exhaustion turned into spending days in bed, shivers became dangerously high fevers and using the bathroom resulted in bleeding, vomiting and dramatic weight loss, I knew something was wrong. I felt faint all the time, and I couldn’t get through even the shortest rehearsals without taking bathroom breaks. I was embarrassed, so I kept my symptoms a secret from my parents, teachers and friends.
Then one day on my way to school, I felt so faint I thought I’d pass out. That’s when I broke down and told my mom I was sick. I was admitted to the hospital with severe dehydration and internal bleeding. I stayed there for a week while doctors gave me antibiotics to fight infection and steroids to reduce inflammation in my digestive system—but I still felt sicker by the day. Over the next month, I underwent countless procedures and tests.
My doctors suspected I had inflammatory bowel disease (IBD), which could be confirmed with a procedure called a colonoscopy. I was put to sleep while the doctors used a tiny camera to look at the inside of my digestive tract and take biopsies (small pieces of unhealthy intestine to be tested). During this procedure something went wrong, and my intestines ruptured. I underwent emergency surgery, and when I woke up, my doctors explained that they’d performed a colostomy, a surgical procedure that detached my healthy intestine from the diseased area and pulled it through a hole in my abdomen. For six months, I would have to wear a pouch on the right side of my stomach to collect waste. I was shocked.
The doctors also told me the procedure had confirmed what they’d suspected. In June 2003, I was officially diagnosed with Crohn’s disease, a form of IBD that affects the digestive tract. It’s a chronic illness—there’s no cure and doctors aren’t sure what causes it. I was overwhelmed with fear. “If doctors don’t know what causes it,” I thought, “how can they treat it?” But I was assured the symptoms were treatable, and that I would feel better soon.
Colón performing at Long Island University (Paula Court)
I began the long road to managing my condition. Doctors prescribed a plethora of medications—close to 40 pills a day! And caring for my colostomy presented a major lifestyle change. I bought new, baggy clothes to conceal the extra bulk, and I never went swimming that summer for fear my pouch would fill with water. Six months later, I had another surgery to remove my colostomy and reattach my intestines. At this point, I had built up a little strength, and I did a ballet barre on days I didn’t have too much pain. I even taught classes to my nurses.
My surgeons told me I’d probably never get back to the level of physical fitness needed to be a dancer. I’d lost almost 30 pounds, my muscles were atrophied and I was weak. But I was determined to return to the studio.
Several weeks after surgery, I received medical clearance to go back to dance class. My meds were working and I was experiencing fewer symptoms than I had weeks before. I’d been gone for a couple months, so word had spread about my condition—but no one really knew what Crohn’s disease was. I found that if I hid my embarrassment and kept cool when talking about it, others would too. But my return to the studio made me realize just how sick I’d been. I didn’t have the physical strength for a grand plié, let alone the stamina to perform a routine. It took almost a year to build my strength back to the level it was before my first hospitalization, but my hard work paid off, and I came back even stronger.
For the last two years of high school, my disease was in remission. After graduation, I enrolled in Long Island University–Brooklyn to pursue a BFA in dance. But my last two years of college were hard, and I was constantly in and out of the hospital. I had four surgeries altogether, though I managed to graduate on time. Immediately after college, I began performing with several dance companies in NYC. I’m now a member of Perceptions Contemporary Dance Company. Plus, I’ve started choreographing and have recently stepped up to the role of company manager.
I’ll have to be on medication for the rest of my life, and I follow a strict diet. I don’t eat any nuts or fruit with seeds. I eat slowly and in small amounts frequently throughout the day, and I have to stay hydrated.
Colón and her mom ready for a half marathon with Team Challenge, a training program that raises funds for the Crohn’s & Colitis Foundation of America
I’ve turned my struggle into a positive experience by getting involved with the Crohn’s & Colitis Foundation of America, whose mission is to fund research for a cure and improve the quality of life of those living with IBD. I’m a volunteer camp counselor, and I participate in many fundraising walks and runs. With the help of family and friends, I’ve raised $24,000 toward finding a cure.
My ordeal has been a blessing in many ways, helping me figure out what I really want in life. After my dance career, I hope to work with dancers as a physical therapist, and with IBD patients who are seeking alternative therapy in addition to traditional treatment. I’m currently fulfilling my prerequisite courses toward this goal at Hunter College. But for now, my heart belongs to my first love: dance.
More than 1.4 million Americans are affected by inflammatory bowel disease. Dance Spirit asked Rhondell Domilici, executive director of the Crohn’s & Colitis Foundation of America’s Greater New York Chapter, a few basic questions.
What is IBD?
IBD or inflammatory bowel disease is an umbrella term for Crohn’s disease and ulcerative colitis, chronic autoimmune diseases that cause inflammation and ulcerations in the intestine.
What’s the difference between Crohn’s disease and ulcerative colitis?
Ulcerative colitis affects only the large intestine and the innermost lining of the intestinal tract. Crohn’s disease can affect any part of the digestive tract or intestinal wall.
What are the symptoms?
Symptoms of IBD can include fever, weight loss, vomiting, chronic diarrhea, rectal bleeding, fatigue, abdominal pain and cramping, as well as complications with the joints and eyes.
What are the treatment options?
There are a number of medications available, and diet, nutrition and stress reduction
can play a role in managing symptoms. Surgery to remove the diseased portion of the intestine is also an option in severe cases.
For more information on IBD, go to ccfa.org
The “SYTYCD” Season 7 tour, in the fall of 2010, was going amazingly well until October. That’s when the lower half of my body started to feel numb. It’s difficult to describe the feeling (or non-feeling) exactly, but it was like a mix between pins and needles and when you get Novocain at the dentist. During the same time, I started to get an electric sensation down to my toes when I put my chin to my chest. Although I couldn’t think of a particular moment of injury, I figured maybe I had herniated a disc. After all, we were doing six performances a week, which was hard on our bodies.
Since I never experienced pain during these episodes—the symptoms were always just nagging discomforts—I didn’t mention any of this to a doctor. I tried to overcome the feelings as best I could, with regular stretching and body care. By mid-March, I thought I was getting better because I began to regain feeling in my legs (though I never felt 100 percent). But then later that year my entire right side started to go numb. That’s when I realized something was seriously wrong.
My grandmother has multiple sclerosis, a chronic autoimmune disease that affects movement, sensation and bodily functions. I watched her live with the disorder and knew many of the symptoms of MS overlap with the symptoms of a herniated disc, like the numbness and tingly feelings I was having. So when I finally went to the doctor over Christmas, I asked to be tested. I had a gut feeling I had the disease, but he said he doubted my test results would come back positive. There have been no studies proving MS is hereditary, although some studies show that many people with MS have family members who have the disease.
Performing a jazz routine with Mark Kanemura on “SYTYCD” Season 4 (Kelsey McNeal/FOX)
I got a series of MRIs done, and my inkling was correct: The films showed plaque on my spinal cord and lesions on my brain, confirming MS. When the doctor told me the news, I was upset, but I also felt a sense of clarity. I had a diagnosis and could start treating the disease. My first question was, “Will it affect my dancing?” But my doctor said, “The best thing for you is to keep dancing and keep your muscles strong.” I definitely didn’t have any objections to that!
At first, I was apprehensive about sharing the news of my diagnosis. This disease comes with the assumption that you’ll get progressively worse and perhaps eventually become immobile. (MS attacks the myelin covering your nerves. Without that, your brain can no longer convey messages along the nerves to your muscles, which stops the muscles from working.) I was afraid people would think I could no longer do the things I’ve always been able to do or that they wouldn’t hire me.
However, because of advances in medicine and research, there are many things a person with MS can do to prevent this from happening. I get an injection called Rebif three times a week. Rebif is used to prevent episodes of symptoms and slow the development of disability in patients with relapsing-remitting MS, which is the type I have (my grandmother has primary-progressive MS). Rebif isn’t my favorite thing, but it’s what I need to keep myself healthy, along with eating right and exercising.
I occasionally experience certain symptoms, like tingling or feeling off-balance, if I’m upset or stressed—stress is one reason relapses occur. But I’m currently in remission and able to dance. Since I was diagnosed, I’ve filmed episodes of “Glee,” I’ve danced with Al Pacino in a new movie called Stand Up Guys (that was a whole lot of awesome!) and I’ve performed on “Dancing with the Stars.” I was in the Rock of Ages movie, and I’ve traveled with “SYTYCD” doing Season 9 auditions. Plus, I started my own dance convention with my family called The BEAT. Some of the teaching faculty are former “SYTYCD” contestants, including Stephen “tWitch” Boss, Allison Holker, Dominic “D-Trix” Sandoval, Robert Roldan, Ade Obayomi and William Wingfield. I found out about my MS diagnosis the day after our first BEAT event in NYC. I was grateful for the timing. The BEAT gives me a chance to surround myself with family, friends and dance no matter what course MS takes.
Performing a hip-hop routine with Gev Manoukian on “SYTYCD” Season 4 (Kelsey McNeal/FOX)
After receiving my diagnosis, I decided I wanted to help raise awareness about MS, so my brother and I teamed up with the National Multiple Sclerosis Society and started a foundation called BEAT MS. Now a portion of every BEAT registration will go toward the organization, which funds MS research. The society also provides people like my grandmother with nurses, helps pay for costly MS medication and hosts the MS Walk every year all over the U.S. This year my friends on both coasts took part in the walk and raised more than $20,000.
I have good days and bad days, but I’ve learned a lot about life that I don’t think I would have otherwise. Since MS is an anxiety-driven disease, I’m trying to stop worrying (I’m a worrywart by nature) about my future. I’m also learning not to obsess about my past, wondering what I could have done better. I’m working on enjoying the now.
During the “SYTYCD” tour in 2008, I got a tattoo across my feet that, when I stand in first position, reads, “I walk forward with certainty that my dance is secure.” Those words apply to my life now more than ever.