I Performed to Doctors. It Ended With a Diagnosis I’d Never Heard of

The weather was-as is typical in Southern California-temperate, but the hall was warm, filled with hundreds of people. It was 2009. I was on stage, my guitar in my hands and a mic before me, Herbie Hancock at the piano to my left.

I paused only a moment to assess the crowd before belting out “Where is Bobby Gentry?”-a new single from my California Years album that had been released just seven months earlier.

This wasn’t a normal gig for either of us. Herbie and I had been asked to perform as a sort of palate cleanser between heady discussions on ways genetic medicine could transform care, new approaches to tackle cancer, and how prosthetics could change a person’s life at the newly relaunched TEDMED conference.

We were surrounded by doctors, researchers, scientists, and healthcare industry leaders rather than our typical fans who could recite the lyrics with us.

Regardless, the performance changed my life.

Almost as soon as my performance ended, I was approached by two different people from the crowd. Both had the same question: Had I ever been diagnosed with essential tremor?

I had never heard of essential tremor at that point, but the question brought a lot of things into focus for me.

Since my 20s, I had a tremor in my hands that I thought was caused by excess energy. It didn’t bother me most of the time, but every once in a while, it would interfere with work, like when I waited tables and would spill drinks or the time I managed to slash open an artery in my wrist while serving bread at a fancy restaurant.

When playing guitar-my first love-a little tremor can be normal, so it rarely occurred to me that it could be more. Occasionally, I would be reminded during or after a performance that my tremble was noticeable to others, like when I played one of the evening talk shows and they showed a closeup of my hands, or when people would ask me if I was nervous after a performance.

One particularly memorable evening, a woman approached me after a show, telling me she was a social worker and wanted to talk to me about my drinking because she believed my shaking hands were the result of detoxing from alcohol.

Over the years, I would talk to my doctors about the tremors, but no one seemed to know what it was. After my performance at TEDMED, I made an appointment with a neurologist, who confirmed that the people who thought I had essential tremor were correct. It was the cause of the tremble in my hands.

Up to that point, I had never heard of the condition, so I had to learn more. In my digging, I found that it was likely the cause of my poor handwriting and most cases were hereditary, even though no one in my family seems to suffer from the condition.

For several years, my neurologist prescribed medicine to help manage my tremors and it worked incredibly well, but as I learned, while essential tremor won’t kill you, it is a progressive illness that will slowly get worse.

During the COVID pandemic, as I started performing online instead of in theaters, I realized that my hands were shaking even more than I realized. I couldn’t take any more medications because the prescription drug I had been using lowers your blood pressure, which for me was naturally low.

If I didn’t find a new way of dealing with the tremors, I would eventually no longer be able to play my beloved guitar, something I have been doing since I was seven or eight years old.

So I returned to my neurologist and started asking about my options, including deep brain stimulation (DBS). I had heard about it in my research and wondered if I was a candidate for it.

I knew it required brain surgery, but it seemed like it could be a good solution. DBS works by sending electrical impulses to a specific part of the brain and adjusts abnormal brain signals that were causing my tremor.

My neurologist felt like it was a good option for me because if something went wrong for any reason, he could always remove the device without lasting issues.

After several months of discussions, we decided to move ahead with the procedure with a device called the Infinity DBS system from Abbott. It was a recharge-free device, which would ensure I didn’t lose power in the middle of a performance, and it came with an app called NeuroSphere Virtual Clinic that would allow my doctor to make remote adjustments to it even if I was in the middle of Madagascar.

I had to be awake during the surgery, so I played guitar and sang to the doctor and nurses throughout the procedure. The device worked immediately, steadying my hands for the first time in decades.

Now, I no longer worry about how I am going to hold a glass of water or the sacrifices I might have to make to continue performing. And after performances, people now come up to me and say: “I didn’t see your hands shake at all.”

I don’t shy away from telling my story of dealing with essential tremor because I know it helps other people. Since speaking out about it, people have said they think they might have it, too, and have gone to medical professionals seeking help.

I have also heard from countless others about their experience with DBS and how it changed their lives for the better. I am incredibly proud of the community that has been built out of this little-known condition.

At one point, I thought my diagnosis might take away my ability to play guitar and perform. It was a future I didn’t want to think about because my songs are such a big part of my life and speak to issues our society continues to collectively struggle with (LGBTQ rights, teen mental health, our unhealthy obsession with staying forever young).

But now, because of DBS therapy, I have been able to stage my off-Broadway musical, “F— 7th Grade,” based on my songs and middle school experiences, and continue to perform live.

And to think-none of this would have been possible had I not been asked to play a musical interlude during a conference that brought together the brightest minds in healthcare.

Jill Sobule is a singer and songwriter. She achieved mainstream commercial success with two songs from her 1995 self-titled album “Supermodel” from the movie Clueless and “I Kissed A Girl” (the original), the first-ever openly queer-themed Billboard Top 20 song. Named musician-in-residence in 2020 at the Bayard Rustin Center for Social Justice, an LGBTQIA community center, Jill is currently on a national tour with her autobiographical musical “F— 7th Grade” and continues to help others learn about essential tremor.

All views expressed in this article are the author’s own.

Do you have a unique experience or personal story to share? Email the My Turn team at myturn@newsweek.com

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This story was originally published December 19, 2023, 3:30 AM.

source: star-telegram

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