Photo by Kati Ellis, Courtesy Hilton

Begin Again: A Dancer’s Return to the Industry After 9 Years of Chronic Illness

As I finished my last grueling medical treatment just over a year ago, my doctor said something to me: "Your body has stuck with you through a lot. Do something special with your life to show your gratitude."

For nine years I have struggled with the debilitating effects of chronic Lyme disease. Now, as my symptoms have (thankfully) begun to remit, I've allowed myself to hope, as I scarcely have before, for a future without physical pain—a life in which my body is free and able to dance again.

I grew up as a bunhead in Salt Lake City, Utah, at a small school called Salt Lake Dance Center. I attended summer programs at Pacific Northwest Ballet and American Ballet Theatre, and at age 14 moved to a competition-focused studio called Dance Impressions while also training privately with professors from the University of Utah's ballet department. Shortly after graduating from high school I danced my first-ever professional job with Odyssey Dance Theater's production of Thriller.


This Halloween-themed show is a staple in Utah. It's the kind of production that feels like running a marathon (in one evening I would dance six different styles, including Irish dance!) As the show's run wore on from September into October, with performances every night and two on Saturdays, I noticed that other dancers' stamina was building while mine was dropping—and fast. Each night I felt more winded than the day before. Every part of my body felt inflamed, like an ankle that's become swollen after it's been rolled. I struggled to keep my eyes open all day, and, perhaps most concerningly, I began to experience vertigo during the shows at night.

During my last week of performances the stage was spinning. The whole theater began to swirl before my eyes and I was completely disoriented. Down was up, up was down, and the only thing that grounded me was the choreography that was etched into my muscle memory.

Three days after our last show, I had what I call "my crash." Every symptom I experienced during the final weeks of Thriller increased exponentially. The combination of extreme fatigue, inflammation, nerve pain and neurological issues leveled me. For the next year and a half I spent most of my days in bed. It seemed any physical activity I did exacerbated my symptoms. Dance was totally out of the question.

Specialist after specialist was puzzled. They all recognized that something was clearly wrong with me, but none could quite zero in on the cause.

In April 2014, a doctor finally offered to test me for Lyme disease. "It's a long shot, but it's the only thing we haven't tested your blood for," he said. I was shocked to learn that I—a decidedly "indoorsy" person whose life seldom existed beyond the dance studio—came back positive immediately.

Lyme disease is a tick-borne illness that wreaks havoc on the human body. It can be difficult to diagnose if you don't catch the tick on your skin, or find the signature bull's-eye rash it leaves—and according to the International Lyme and Associated Diseases Society, many patients do not recall a rash at all. The longer you have the disease without treating it, the harder it is to cure. (Which made it particularly unfortunate that it took me a year and a half to get diagnosed.)

The following seven and a half years dragged on in a haze of doctors' appointments, medical trials, IV infusions, antibiotics, central lines, painful trips to the ER and sky-high medical bills. I attended Brigham Young University (part-time, as my health would permit), and earned a degree in journalism while simultaneously teaching a couple days per week at Center Stage Performing Arts Studio in Orem, Utah.

Shot from above, Hilton lies on a hospital bed with a port in her shoulder as blood comes out

Courtesy Hilton

Upon graduation I decided it was time for plan B. If I couldn't dance myself, I was going to stay involved in the industry by writing about it. I moved to New York City to intern at Dance Spirit magazine, then became an editor for Dance Teacher, and finally transitioned into my current role as a freelance feature writer for all of the Dance Media publications, including Dance Magazine. As I interviewed and wrote about my heroes within the industry, my health continued to struggle.

In the summer of 2020 I learned about a Lyme treatment administered in Germany that some people were finding success with. Three months later I found myself in a foreign hospital in the middle of a global pandemic. The procedure, called "hyperthermia," consisted of doctors heating my body to 107 degrees Fahrenheit and infusing antibiotics into my bloodstream for six hours while I was under general anesthesia. If that sounds insane—you're right. But I was desperate.

It was the most physically painful experience of my life. After treatment, every limb felt made of lead. My migraines screamed. Nausea crawled up my stomach to meet the flames of hunger that licked at my esophagus. My feet, stomach, chest and back all throbbed. The mass exodus of spirochetes in my bloodstream felt like fireworks going off under my skin. It went on like that for two miserable weeks before flying back home.

Around the same time, I had an infected port removed from my chest, and a non-Lyme specialist prescribed medication for a separate condition. Through some miracle, the combination of treatments has made a difference. (I do not recommend this, or any other treatment, to those suffering from Post-Treatment Lyme Disease Syndrome; every patient is unique and should adhere to the advice of their physician.)

By April 2021 my inflammation had partially subsided, my migraines had improved significantly, my energy was slowly returning, and I began to be cautiously optimistic about my future.

In my nine years of chronic illness I've quietly maintained a small, yet fervent hope that I could dance again one day. So, with the benefit of professionals like Tiler Peck and Isabella Boylston posting at-home ballet classes on Instagram during COVID-19 lockdowns, I slowly began doing barre and introducing moderate movement into my life once again.

In the past, whenever I started to feel even the slightest bit better, I would immediately try to dance, which inevitably led to a crash, and a multi-month setback. Yet I've now written enough stories about injury recovery and prevention to know that doing too much too quickly could cause injuries that would be just as devastating. This time, I decided to take it slow.

After a couple months of at-home ballet classes without a setback, I got a CLI Studios account and started taking classes in a variety of styles, challenging my mind to remember how to pick up choreography. By July, I decided to take these virtual classes in larger spaces, where I could work on my technique, build strength and increase my stamina. I also began attending in-person classes at studios like Steps On Broadway and Broadway Dance Center.

My body felt different, of course: My flexibility and strength had decreased, and I was nervous that they wouldn't come back. I worried there was some kind of unwritten rule in the universe that said your body would lose the ability to jump, turn and suspend by age 25 if you didn't dance professionally in your late teens and early 20s. It was nerve-racking to dance in a room full of artists who hadn't spent the better part of the last nine years in a sedentary state. Still, the movement was there, inside my bones. My capacity to tell a story and let the music move through me had not left. And, thankfully, my technique came back as I took more classes.

As I danced, my heart filled with the same joy it always had. Like many of you, I feel that dance is an eternal part of who I am—it is an integral part of what makes me Haley. So, at 27 years old, with the odds completely stacked against me, I decided to try my hand at pursuing a professional dance career once again.

Still, as I've begun the process of returning to dance, I've recognized hurdles that I think others who are trying to get back onstage post–pandemic-lockdowns are likely facing as well. For example, I need to train to get back in technical shape, but the last time I was at the top of my game I was dancing for multiple hours, six days a week, and, frankly, I don't have the money for that. How can I train on a budget? Or, I have a very short resumé because of my chronic health condition—how should I organize it so that agencies and casting directors look past that? How do I create a reel? What should I include in it? Even something as simple as what clothes are trendy in the industry these days? (I swear trying to pull off Gen Z fashion is gonna kill me.)

Which leads me to this column: Dance Magazine has allowed me to be the guinea pig for dancers returning to an industry they don't recognize, in bodies that feel very different from the last time they were onstage. I am going to chronicle my experience (through both this column and a vlog) as I work toward my lifelong goal of dancing professionally. Each month I will document a different hurdle within the industry that I'm facing, and show how I'm working to overcome it through the advice of experts, as well as some helpful Dance Media articles.

I won't lie, I'm terrified. I'm going to have to be really vulnerable with you all as I pursue this goal. Odds are you're going to see me fail, a lot, but, hopefully, you'll also get to see me succeed. I hope my experience can give you the help you need to tackle your own impossible goals.

Let's all begin again.

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