5 min read
Alicia Graf Mack was about 10 years old the first time doctors had to drain fluid from her knee. It would be more than a decade of pain, surgeries, and time stolen from her career as a professional dancer before she finally learned the cause: ankylosing spondylitis (AS), an immune system condition that’s a form of arthritis.
Some days, her knees would swell up like a grapefruit. It was hard just to walk. To perform in pointe shoes was out of the question.
“There’s no way I’ll be a dancer anymore,” Graf Mack says she once thought.
Now the dean and director of the Dance Division at The Juilliard School – and the first Black person and the youngest person to hold that role – Graf Mack says AS has shaped her life in surprising ways. And she has advice to help other people get diagnosed sooner and manage it.
As a teen in the Dance Theatre of Harlem, Graf Mack had symptoms that were easy to dismiss. “I was training like an Olympic athlete, so you expect aches and pains,” she says. “Most dancers have that every day.”
But her symptoms got worse. Even after surgery and rehab for a small knee cartilage tear, the pain didn’t quit. She couldn’t even walk to the subway to go to follow-up visits.
“For 6 months or so after the surgery, no one could give me any answers,” Graf Mack says. “My whole dream for my life was wrapped up in the health of my body. I really hit rock bottom.”
She reached out to her cousin, Jonathan Graf, MD, a rheumatology professor at the University of California San Francisco. He reviewed her medical records, concluded that she had reactive arthritis, and prescribed anti-inflammatory medication.
Graf Mack’s knee swelling began to ease. But over time, more problems followed. She consulted knee and ankle specialists, had more operations, and did physical therapy constantly.
With an extremely demanding physical career looking out of reach, Graf Mack started to imagine a different life. She enrolled at Columbia University, aiming for a career in arts administration. She kept going to PT and taking medication. She was even able to join a student-led praise dance ministry. By senior year, she was strong enough to be back in classical dance classes just because she loved it.
With a corporate job on the horizon, she had one last summer free after college. She reached out to New York’s Complexions Contemporary Ballet, hoping for a summer job in arts administration or marketing.
But the founders of Complexions, dance icons Dwight Rhoden and Desmond Richardson, had another idea. “We hear you’re dancing again,” they told her. “We have a tour of Italy this summer, and one of our dancers is injured. Can you come back?”
Graf Mack was apprehensive. She hadn’t danced full-time or performed in a long time. But it might be her last chance.
“I said, ‘I’m going to be doing a desk job for the rest of my life. Let me do this.’ ”
Graf Mack ditched the corporate path and danced for famed companies including the Dance Theatre of Harlem, the San Francisco-based Alonzo King LINES Ballet, and Alvin Ailey.
Meanwhile, she still had her chronic condition, which she still thought was reactive arthritis. She remembers switching to a new disease-modifying antirheumatic drug, or DMARD, called adalimumab (Humira), when it came on the market in 2003 – and the challenges that came with it.
“I had to figure out how to travel with the syringes, keeping them cold during 18-hour international travel days, finding out which hotels had refrigerators in them, ensuring that medications were shipped to hotels on the right schedule,” she says. “That was choreography in itself!”
Blurry vision, along with pain and redness in her eyes, was how Graf Mack learned that she had AS.
Her eye problem was uveitis, an inflammatory condition. Graf Mack’s rheumatologist told her that uveitis pointed toward AS. It’s common in people with AS, but not in those with reactive arthritis, Caplan says.
Her doctors got the uveitis under control, and Graf Mack was able to keep dancing as a pro.
“I had another 5 or 6 more years of dancing, a blessing that I never expected would happen,” she says.
After yet another knee surgery, she moved to St. Louis with her now-husband, Kirby Mack, to get a master’s degree in arts management.
She would still perform and even returned to Alvin Ailey for 3 more years. She finally retired in 2014 after surgery for a herniated disk. She’s since become a mom to a son and daughter, the host of a dance podcast called Moving Moments, and the founder of a comprehensive wellness program for young dancers at Juilliard.
“I’m still taking Humira, with a round of prednisone every so often for flare-ups,” she says. Although her back and hips are “really stiff most days,” she stays very active and still performs on occasion.
“I consider myself super blessed because I know so many people with AS are in an extreme amount of pain,” Graf Mack says. In hindsight, without AS, “I never would have discovered my love for teaching or realized that I wanted to work in a university setting,” she says. “It’s strange, but I never would have had such a full life if I hadn’t been stopped in my tracks by my body.”
Graf Mack has this advice for people facing an AS diagnosis:
Find a supportive doctor. “At first, I was seeing doctors who didn’t fully believe me, and that made it so much harder,” she says. “With this disease, flare-ups can happen at any time and can get bad fast, and you should have a doctor who can be reached quickly and not make you wait 3 months for an appointment.”
Manage it one day at a time. “This is a condition that is not going to go away,” Graf Mack says. “You have to be proactive in taking charge of your condition and working with your doctor and other members of your care team. Find a great doctor and take it day by day.”
Be patient with yourself. “Some days are going to be really bad,” she says. “I’d allow myself that. ‘Today is a bad day. I’m going to allow myself to be angry and cry and do all the things. But that’s all I get, and tomorrow I’m going to get up and do something that makes me feel good.’ ”