Alicia Graf Mack’s life with ankylosing spondylitis

Alicia Graf Mack's life with ankylosing spondylitis

Living with Ankylosing Spondylitis: A Dancer’s Journey of Resilience and Adaptation

Alicia Graf Mack teaching at Juilliard
Alicia Graf Mack teaching at Juilliard.

Alicia Graf Mack, currently the dean and director of the Dance Division at the Juilliard School, has had a remarkable journey filled with pain, surgeries, and career obstacles due to an immune system condition called ankylosing spondylitis (AS). Despite the challenges she faced, Graf Mack’s story is an inspiring tale of resilience and determination, and she has valuable advice for others struggling with the same condition.

Graf Mack’s battle with AS began when she was just a young girl. Recurrent trips to the doctor for knee fluid drainage became a part of her life. However, it took over a decade for her to receive an official diagnosis. The pain and swelling in her knees often made even walking a difficult task, let alone dancing in pointe shoes.

“There’s no way I’ll be a dancer anymore,” Graf Mack once believed.

‘I Was Training Like an Olympic Athlete’

As a teen in the Dance Theatre of Harlem, Graf Mack’s early symptoms seemed ordinary for someone training at such an elite level. “I was training like an Olympic athlete, so you expect aches and pains,” she explains. However, her symptoms started to worsen, and even after surgery and rehabilitation for a small knee cartilage tear, the pain persisted. At one point, the pain was so severe that she couldn’t even walk to her follow-up visits.

“For six months or so after the surgery, no one could give me any answers,” Graf Mack recalls. “My whole dream for my life was wrapped up in the health of my body. I really hit rock bottom.” It was during this difficult time that she reached out to her cousin, Dr. Jonathan Graf, a rheumatology professor at the University of California San Francisco, who eventually diagnosed her with reactive arthritis and prescribed anti-inflammatory medication.

Although her knee swelling began to ease, Graf Mack encountered more health issues in the following years. She underwent various surgeries, consulted specialists, and diligently engaged in physical therapy. Realizing that her lifelong dream of pursuing a physically demanding career in dance might be out of reach, she enrolled at Columbia University with the intention of pursuing a career in arts administration.

But life had different plans for Graf Mack.

Back to the Stage

While exploring opportunities in arts administration, Graf Mack reached out to the founders of Complexions Contemporary Ballet for a job in marketing or arts administration. However, Dwight Rhoden and Desmond Richardson, the iconic dance duo behind Complexions, proposed something unexpected. They had heard that Graf Mack was dancing again and offered her a spot on their tour of Italy. It was a moment of uncertainty for Graf Mack, as she hadn’t performed or danced full-time in a long time. But knowing it might be her last chance, she seized the opportunity.

“I said, ‘I’m going to be doing a desk job for the rest of my life. Let me do this,’” Graf Mack recalls.

This decision led to an extraordinary dance career with renowned companies such as the Dance Theatre of Harlem, Alonzo King LINES Ballet, and Alvin Ailey. Throughout this time, Graf Mack continued to manage her chronic condition, which she thought was still reactive arthritis. She navigated the challenges of traveling with medications, ensuring they remained refrigerated during long international journeys. Despite these hurdles, she persisted.

The Right Diagnosis, at Last

One day, blurry vision, accompanied by eye pain and redness, led Graf Mack to the revelation that she had AS. Her rheumatologist explained that her uveitis, an inflammatory eye condition often associated with AS, was a telling clue. Uveitis is less common in individuals with reactive arthritis.

With her doctors’ help, Graf Mack gained control over her uveitis and continued to dance professionally for another five to six years. This unexpected blessing allowed her to achieve milestones she never thought possible.

“After yet another knee surgery, she moved to St. Louis with her now-husband to pursue a master’s degree in arts management,” the article notes. “[…] 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.”

Graf Mack’s journey with AS has been far from easy. She still manages her condition, taking Humira alongside occasional rounds of prednisone. She admits that her back and hips are often stiff, but she remains active and continues to perform occasionally.

“I consider myself super blessed because I know so many people with AS are in an extreme amount of pain,” Graf Mack reflects. Without AS, she never would have discovered her passion for teaching or realized her desire to work in a university setting. It’s a strange reality, but she can’t deny that her condition has granted her a full and fulfilling life.

Tips for Managing AS

Drawing from her own experiences, Graf Mack offers valuable advice for those facing an AS diagnosis:

  • Find a supportive doctor: Seek a physician who believes and supports you. Graf Mack stresses the importance of having a doctor who can be reached quickly during flare-ups instead of waiting for months for an appointment.
  • Manage it one day at a time: AS is a chronic condition that won’t simply disappear. Graf Mack emphasizes taking an active role in managing the condition and working closely with healthcare professionals to develop a care plan.
  • Be patient with yourself: Accept that some days will be difficult, allowing yourself the space to express anger or sadness. However, she encourages not dwelling on these emotions and instead focusing on doing something that brings joy and positivity.

Alicia Graf Mack’s story is a testament to the resilience of the human spirit. Despite the physical and emotional challenges she faced, she never let her condition define her. Instead, she adapted, persevered, and found new avenues to explore and inspire others.