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Finding Strength Through Fragility: How Hypermobility and EDS Shaped My Dancing Life

Do you get injured more easily than other dancers? Do you struggle with mysterious, seemingly unrelated symptoms like fatigue, poor sleep, bloating or abdominal pain?

Being "bendy" has many benefits for the dancer, however it can come with additional challenges rarely recognized by medical professionals.

We are so grateful for this guest blog post by Gavin Larsen, former professional ballerina and author of the amazing book, Being a Ballerina: The Power and Perfection of a Dancing Life.

How did Gavin manage a professional career with hypermobility? Read on to hear her relatable, inspiring story!

-Linda Bluestein, MD

by Gavin Larsen

In that moment of utter uncertainty, all of the sounds and activity around me became muted and fuzzy, as if there were cotton in my ears, but my brain’s dialogue was crystal clear. For that one frozen minute, I knew with absolute, unemotional frankness that I had just danced my last step. I saw the future, the past, and the present all at the same time as I hovered there on one leg, looking down at my foot raised slightly in the air (for once not even trying to hold my balance, just miraculously stable). These were the strongest words in my head: “You are finished now.”

That “frozen minute” happened in the winter of 2008 when, as a principal dancer with Oregon Ballet Theatre, I was in the middle of taking company class. It was a performance week, about halfway through a hard run of shows. My load was particularly heavy: I was in three ballets, one of which was particularly demanding both aerobically and technically, and on top of that, I’d been battling bronchitis. The antibiotics had just started to take effect, and that day was the first time in over a week that I could get through a combination without being seized by a coughing fit.

I was a strong dancer in some ways, but fragile in others. Very tough in determination and mental fortitude, pretty strong in musculature, technique, and stamina, but my body— my tool, my instrument, my currency— kept complaining. Giving out. Hurting. Every dancer’s body hurts; it’s just the nature of a life lived with extreme physicality. But I was starting to suspect that mine hurt more… or was it just that I felt it more? Or that I couldn’t, for some reason, handle it? Did it just bother me more, psychologically?

A Compulsion to be Strong

When I started dancing, around age 8, I was already serious— a quiet, focused kid who took things hard and tended to be introspective even at that age— even though my early classes were, by most standards, pretty relaxed. But as soon as I got that feeling of ballet technique— the satisfaction of stretch, of engagement, turnout, lift, reach, balance— I really wanted to push it. I wanted to reach further, stretch more, jump higher, balance longer, feel like a powerful bird flying across the room, rebounding with perfect coordination off the floor.

I built muscle easily. My muscles weren’t huge, but were defined. Early on, I caught the bug of wanting to be physically powerful, to work my body to be in control and not vulnerable. I started studying at the School of American Ballet at age 11 and joined Pacific Northwest Ballet when I was 17. My professional career spanned 18 years, three companies, and numerous guest appearances. For most of that time, I was no more injury-stricken than anyone else. But there were subtle signs, which I didn’t even notice until much later, that certain things were harder for me. An intense rehearsal or show seemed harder to recover from. Pushing my legs through one more run-through felt impossible, sometimes. I needed to sleep-- a lot. My bare minimum was 9 hours a night, preferably closer to ten. Weird little injuries that just would not go away kept happening. I always had some mysterious problem or other that no one could diagnose, let alone treat. And then, this heart-stopping moment in class.

Mysterious Injuries

Three years earlier, in another otherwise ordinary company class, I took off for a pirouette and felt a sharp pull behind my ankle bone. Demi-plie made me gasp. Walking wasn’t as bad, but wasn’t good, either. I got ice on it, went to the physical therapist, who sent me right to the company’s orthopedist, who took an Xray and decided it was a strained posterior tibialis. But a few weeks of rest didn’t help, therapy only helped when I got a strong steroid treatment called iontophoresis, and although I managed to finish the season, I had to take massive doses of anti-inflammatories to do so. Finally, months later, an MRI revealed the tendon was torn. Torn? That explained why it wouldn’t heal, but how could such a tiny, non-aggressive movement with zero impact have torn a tendon?

Surgery was successful. Rehabbing from it reignited my obsession with, and growing reliance on, strength training. I became the company queen of exercises. I was always doing them— before class, during class, after class, before and after rehearsals, on our days off. I was also always stretching. Not because I had to, but because I always felt tight— even though my range of motion was huge and unrestricted.

I didn’t have one of those easily identifiable loosey-goosey gumby bodies. I was no Sylvie Guillem. But my joints just seemed… lax. My fingers, toes, ankles bent really far (someone once commented that my demi plie went on for days). My shoulders allowed my arms to flip backwards. I craved backbends. I was proud of my extensions, even though a torn hamstring dogged me for years.

But despite dedicating more time than anyone else to monitoring, strengthening, maintaining and caring for my body, the nagging injuries piled up. A strained hamstring (that turned out to be torn), then another one. A dislocated patella. And then, another bizarre ankle tendon injury: again, as I prepared for a pirouette, simply plie-ing in fifth position, I felt that snap— so sharp and visceral that I thought my pointe shoe elastic had snapped off. But it turned out that the “elastic” that detached was inside my body. My retinaculum, a band of cartilage that connects to the calcaneous, just pulled itself right off. My ankle tendons were left flapping free in the breeze without anything to hold them in place. The merest movement of my foot proved it— I could see the tendons bulging, pushing the skin out, like a giant worm in that groove underneath my ankle bone.

So I had another surgery, this one more serious, requiring me to be in a plaster cast for a month, walking boot for another month, and a much slower rehab. I had my game plan in place from my first ankle surgery, but now I started to see just how different my body was.

The Exhaustion Is More Than Physical

Ultimately, my mind and body came to an uneasy truce as I developed new tricks and strategies to compensate for the deficits I was never able to fill. I figured out how to land from jumps without maxing out my ankle’s flexion, how to pivot and pirouette without tweaking the repaired tendon, how to use my hamstrings to reduce strain on my lower leg in penché. But the hacks weren’t fail-safe. I had to calculate every movement, even the most basic ones that I’d been doing automatically for decades. I was constantly in overdrive. It was exhausting.

I did return to performing. But the next two years were fraught with anxiety and strain, both mental and physical. I didn’t know why, in my early 30s, I was so much more fragile than my peers. I hadn’t heard of Ehlers-Danlos Syndrome. I thought my fragility was my fault. I thought I was doing something wrong with my technique. I thought I’d been trained wrong, been trained badly, had not understood my training, or was not working correctly now. I vacillated between thinking I wasn’t cross-training enough and that I was doing too much. I blamed myself for, despite a lifetime of trying to do the most, reaching my finish line sooner rather than later.

I don’t think EDS is why I retired when I did, but having it definitely changed my ball game.

I gave my farewell performance in May, 2010. At that time, I didn’t know what EDS was, let alone suspect I had it or any other hypermobility syndrome. But over the next ten years, as I tapered off my daily ballet and exercise schedule, my body started showing signs— or, I should say, the symptoms that had already been there became more prominent.

Without the intense daily workouts, top priority on body maintenance, and the support of the fantastic physical therapy team I’d had as a professional dancer, the cracks in my physical infrastructure weakened. The loose joints became looser (except in my lower back, where arthritic pain finally took away my beloved arabesque) even though I never stopped exercising— but logistically I could not do it eight hours a day anymore. Nor did I want to.

In hindsight, I think ballet was the best thing I could have done for my hypermobile body. It kept me strong in muscle, in breath, and in spirit. It kept me distracted in the best possible way.

Being hypermobile gave me a glorious range of motion— and necessitated intense focus on strength. It gave me extreme body awareness and heightened sensitivity. My obsession with precision in ballet technique? I now wonder if it had to do with the extra effort required to balance on top of my slippery joints.

As years passed, new symptoms cropped up. My skin changed, as did my eyes. My levels of fatigue grew out of whack with my activity level. Although I’d added weight training and still did daily workouts, I felt weak— sometimes just looking at a flight of stairs made my heart sink. Was I over-working? Under-working? How could I have gotten this way, when other former dancers my age were hiking mountains and running races post-career?

I think I first heard about EDS in about 2020. When I looked at the Beighton Scoring System, I just laughed. I didn’t just meet each criteria, I surpassed them. (My perfectionist streak found that ironically satisfying.)

In the spring of 2021, I was diagnosed by an internist who had experience with EDS patients (my own primary care physician had seemed annoyed when I brought up this condition I’d heard about and which I suspected was the root of many of my bothersome but not life-threatening complaints). While the EDS specialist could not take me on as a regular patient (insert my rant against the health insurance industry here), I was able to switch PCPs to another EDS-aware doctor after months of searching and slogging through bureaucracy. I found a Facebook group for EDS patients, and then another, and another— and realized that as worrisome as my symptoms were, I was a lot better off than many.

And then, I nearly dropped my phone the moment I saw a post on Instagram by an MD who not only specialized in EDS, but honed in specially on dancers who suffer from it. A former dancer, turned doctor, who now dedicated herself to researching and treating EDS in people like me? I could not believe it. After months of thinking I was alone in this, feeling more and more depressed by trying to educate myself, searching for light in the vast darkness of this frightening new future I was facing, I found it— support, understanding, optimism, and guidance. Dr. Linda Bluestein’s work, research, and advocacy for us dancers saved my spirits, gave me practical solutions, options, and a sense of community. I know now that I don’t have to merely cope. There are things I can do, and people who understand and can help me.

Looking Back... and Ahead

Today, I make my living as a ballet teacher and dance writer. I continue to learn more and more about EDS, hypermobility and how I can live with them and the steady stream of weird injuries and issues that seem to have no obvious cause. My shoulders are the latest: forty-five years of crazy loose rotator cuff joints mean that now they hurt all the time. I do PT-approved exercises for them daily, but I’ve also trained myself to be extra mindful about daily activities that I used to do without thinking— unscrewing a bottle cap, opening the car door, picking up a bag of groceries, putting on my backpack. Over the past year, each of those simple actions has tweaked one shoulder or the other into excruciating pain. Even putting the cap on a bottle of eyedrops (dry eye syndrome cropped up in recent years, too) made my shoulder sublux one day.

Around the time that I retired from performing, I also started writing. At first it was a way of capturing the episodes of my dancing life before they evaporated from memory. But as I mined my past, I inevitably found myself looking in a figurative mirror. I retraced my path from a quiet, fiercely determined 8-year-old through confusing adolescence into a differently confused young professional. Through years of experiences, education, adventures and evolution, I saw the reasons why I was the dancer I was, and why I was the person I am. And I saw the clues, scattered across the years, to this genetic connective tissue disorder that colored it all. My reverse-journaling became a book, published in 2021 by the University Press of Florida: Being a Ballerina: The Power and Perfection of a Dancing Life.

Having hypermobility and EDS may have hastened my dancing life, but it brought me into a new one: writer and journalist.

The word ‘perfection’ is polarizing. Particularly in the arts, it’s almost untouchable and certainly only delicately, tentatively— or boldly— used. But I used it in the title of my book because I think it’s the imperfections that make something “perfect.” And even though dance disappears the moment it’s produced, to me it is an endless, continual presence. It is a life. It is a process. Taken all together, the pieces, episodes, ups and downs, imperfections create a collage of our lives, and therefore, of us.

There IS power and perfection in a dancing life— anybody’s dancing life.

Italicized paragraphs are excerpts from BEING A BALLERINA: THE POWER AND PERFECTION OF A DANCING LIFE, University of Florida Press, 2021.

~ Gavin Larsen

About the Author

Born and raised in New York City, Gavin received her professional dance training at the School of American Ballet, the Pacific Northwest Ballet School and the New York School of Ballet. She was a member of Pacific Northwest Ballet, a soloist with Alberta Ballet and the Suzanne Farrell Ballet, and a principal dancer with Oregon Ballet Theatre. Over the course of her career, she danced prominent roles in ballets by George Balanchine, Jerome Robbins, James Kudelka, Christopher Wheeldon and Paul Taylor, among others, and originated roles in numerous works. Gavin retired from performing in 2010 to focus on teaching, coaching and writing about dance. She was a founding member of Incoroporamento, a collaborative trio combining dance, poetry, and music, producing several performances to critical acclaim, and has taught and coached widely across the country and has been a guest teacher for schools in Japan and Canada.

Gavin is a regular contributor for Pointe, Dance Teacher, and Dance Spirit magazines, and her essay “Why I Dance” appeared in Dance magazine in 2009. Her writing has appeared in Dance/USA’s In the Green Room, Oregon ArtsWatch, the Dancing Times, as well as the Threepenny Review, Page & Spine, and The Maine Review. In 2015 she was honored with a fellowship to the Helene Wurlitzer Foundation in Taos, NM, to pursue her work as a writer. Her memoir, Being a Ballerina: The Power and Perfection of a Dancing Life, was published by the University Press of Florida in 2021.

She lives in Asheville, NC.

Find Being a Ballerina: The Power and Perfection of a Dancing Life anywhere books are sold:


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