Michelle Sung ’21 on overcoming focal dystonia

Michelle Sung '21 SFCM Flute

The SFCM student shares how she was able to keep playing the flute.

In her own words, Michelle Sung (MM ’21) discusses her struggle with focal dystonia.

I was at an audition and I had just lost somebody very close to me. A percentage of the people diagnosed with focal dystonia had either gone through miscarriage or loss of a loved one—some kind of trauma to the brain emotionally or physically. I lost somebody two or three weeks before the onset of symptoms. I flew to the audition in Florida and a couple of days before that I was already hearing that I was not that clean anymore, thinking, “What's going on?” I dropped my flute in the audition and it slammed into the stand—it just fell out of my hands. It was a blind audition, thankfully, and I remember looking at the proctor and he motioned to keep going. But I excused myself and walked off. At the time, I had no idea what was happening and I had a huge dent in my head joint.

Later I texted my brother and said, “Hey, I can’t move to my third, fourth, and fifth finger. I can't even describe it to you. It's not working. I want to lift it and I look at it and it's not listening or looking at it and it's already lifting.” He said, “I think you have a brain disorder.” And I was like, “Very funny.” He's older and grew up teasing me, but this time he was serious. He said, “Look into focal dystonia.” He sent me an article and it was 100% what I had. The article said there was no cure.

I was in denial for a long time. I had just finished my undergrad and was supposed to go to the Royal Academy of Music in London—dropped out of that. I was alone and it was my first time living with my parents again, with whom I have a very close relationship, but they didn't understand either. I literally didn't know anything about it, which is why I’m speaking up about it now. Nobody thinks they're going to get it and I got it.

I had a relationship with a doctor named Dr. Michael Charness at the Brigham Women's Hospital in Boston. I wrote to him with a video of my playing at the time with the symptoms and I said, “Hi, I think this is focal dystonia can you confirm?” We had a video discussion and he looked at the video and said there's no doubt this is focal dystonia. I was desperately trying to find answers the entire time and now I had a formal diagnosis. All I asked was, “Can this be cured?” That's all I cared about. “Can I still play?” He said, “Highly unlikely. Knowing you, you're smart and academically you're doing fine. I would strongly suggest you look into something else. You’re 21, you just got a Bachelor's degree in the arts—you can take that into any field.” I was discouraged from pursuing music and encouraged to do anything else in life. I remember him telling me, “You know you could choose flute and probably be accompanied by this disorder your entire life—on top of depression and self-consciousness and just all the negative things that come with this disorder—or you can just switch careers right now. Be really good at what you do and nobody can tell you have this disability.”

That's not what I wanted to hear. And so I started reaching out to focal dystonia specialists all around the country. Luckily, I grew up in Germany, and the pre-college in Hanover employed probably the most famous focal dystonia researcher and neurologist who happened to be a flutist, Eckart Altenmüller. So I contacted him and I flew there. He was the one that told me that I could recover, and he knew what he was talking about. That really encouraged me and pushed me to just stick with it.

I began working on my recovery. I never played with symptoms. As soon as any symptoms kicked in, I stopped. I'd love to give doctors more credit, but it was all the work that I did in my bedroom by myself. What Dr. Altenmüller told me was, “I've seen people do it, you can do it.” That's all I needed to hear, I needed to hear one guy that knew what he was talking about say that it's possible, and then I'd go for it. He did that for me. That was a huge breakthrough.

The recovery process was never a smooth feeling—it felt like I worked for 30 minutes, made progress, and then five hours later I would come back to it and everything's gone. Two seconds into it, I was just crying. It was super hard. Even after months and months of doing the same thing, I'd come back to the next day and I would start at zero again. It really wasn't until about nine months to a year later that I could see where I had improved. I was constantly doing better, but just so slowly and so minimally that I couldn't see the improvement. It took two full years, but I am fully recovered and playing now without symptoms.

I've probably talked to 200 people at this point with the same disorder after I spoke out about it two years ago. They come to me and they say, “Hi, I've had this for twelve years, I've had this for seven years. Can you help me?” When they tell me that I say, “I don't know if you can get out of it anymore.” Because I think the more you play with symptoms, and while you are encouraging that neuron to fire incorrectly, the brain learns really quickly, and it's very difficult to retrain it and to go backward. I was really lucky to be diagnosed within weeks and then I stopped completely. That two weeks of damage that I did took me two years to recover.

I’d love to be in an orchestra, I would love to take auditions post-Covid, and eventually have that job that I've always wanted to. The thought of that is also what always pushed me to keep going because I love playing in an orchestra so much. Once I do have a job, and I do have tenure, I'd love to spend some time talking and writing about focal dystonia—potentially a book about it just to reach more people. I want people who are struggling with this to know that they can reach out to me. They don't need to feel alone and we can fight this disorder together.

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