I take off running through a strange kind of obstacle course: a gym filled with well-worn mats, spring-loaded floors, horizontal metal poles for balancing, ramps and tunnels. The instructor leads our little ragtag group of adults crazy enough to take a beginner parkour class in a few laps around the crowded room, swinging sharply around tight bends, vaulting over a padded block of some kind, then crouching down without breaking stride and finally leading us through a tunnel. I crouch down behind him, folding in, bringing my chest low, leaving less room for my lungs to expand so that they strain against the concave side of my rib cage. Then he sprints up a set of stairs and straight toward a wall. Without a second thought, he gleefully flings himself over the side. I’m coming up behind him.
It’s my first day in class and I have no clue what may be waiting for me on the other side of that wall, but I’m pretty sure it involves a drop. I’m coming up quick, and my choices are to stop and demand to know what the fuck is going on or shut up and jump. And since, for better or worse, I’m an adult and I did choose to take this class of my own volition, I choose shutting up and jumping. I run straight up to the wall, try to vault myself over, end up scooting on my butt a bit since I’m not good at this yet and then drop to the other side. The air whooshes out of my compressed lungs as I hit a massive crash mat. I scramble off, not wanting somebody else to fall onto me, and then take stock of my body. Nothing feels too bruised; my sacroiliac joints, which have been acting up since I was about 15, aren’t any worse than they normally are, and … I feel kind of great. I came back week after week and spent classes spent rolling, vaulting, climbing things that weren’t meant to be climbed and sometimes jumping off them.
Parkour was just the latest in a long line of sports and movement arts that I’d taken part in, following activities such as yoga, circus and dance. At the time I flung myself recklessly off that wall, I was 23 and I had severe scoliosis — two massive, twisted curves in my spine: one lower in my back at 70 degrees and one higher up at 90. The curves had twisted themselves around, pushing the ribs out on one side of my back and caving them in on the other, compressing my left lung and making it so that I had to contort my body in all manner of weird ways to feel like I could get a full breath.
I was diagnosed in elementary school with minor curves. They worsened and, before I turned 12, I was recommended a spinal fusion, which would have straightened the ever-worsening curves and twists in my back with two titanium rods. While my back would have been straight, my lungs would have been spared the difficulty of trying to expand in a deformed ribcage and the massive rib hump that made me so self-conscious would have been significantly reduced, I still said no. The spine is made up of 24 vertebrae with mobile joints between each bone, and the more of those joints you immobilize with metal rods, the less spinal mobility you have, which wasn’t a compromise I was OK with. The doctors told me that if I didn’t fuse my then 47-degree curve, it would continue to worsen, causing chronic pain, compressing my lungs and potentially leading to a whole host of other complications. They were right about at least some of these things. But honestly, I’m still glad I didn’t listen to them — at least not then.
Instead, I waited for a procedure, and the years I spent waiting allowed medicine to advance. At age 24, about 12 years after first being recommended a spinal fusion, I was able to have a newer, motion-sparing procedure called Anterior Scoliosis Correction, which maintains motion by correcting curves with flexible tethers instead of rigid rods. The procedure is still pretty new and, as a result, there’s a lack of long-term data, making it a bit controversial in the scoliosis world. But, like many patients, I was drawn by the shorter recovery and a chance to save most of the range of motion in my spine. 24 screws and eight flexible tethers were implanted into my spine and my curves were significantly reduced, though not eliminated completely. Given that the procedure was so new, I joked that I was a Bionic Guinea Pig.
The surgery wasn’t magic. I did get a pretty good correction, especially given the size of my curve, but I didn’t get as much correction of my rib hump as I would have liked, and the recovery took a lot longer than I was hoping. I also had some pretty serious surgical complications that landed me back in the hospital and gave me postural orthostatic tachycardia syndrome and a raging case of medical PTSD. There are, of course, those who have had better outcomes and fewer complications with this procedure than I did, and there are also people who have had spinal fusions and been very happy with the outcome.
LSA rising sophomore Ava Baxter is one of those people. She had what’s known as a selective thoracic fusion, with all 12 of her thoracic vertebrae fused. Thoracic fusions are said to be a better choice than longer fusions that extend into the lumbar vertebrae because they account for less of our spinal flexibility than the lumbar spine. So, if you only have your thoracic vertebrae fused, you’re supposed to lose significantly less motion and ultimately be able to live a more active life. But even so, Baxter hasn’t felt as flexible as she used to be.
She also did ultimately end up quitting some of her sports because of the fusion. After several months of recovery, Baxter attempted some of her old gymnastics tricks on her trampoline at home.
“I just couldn’t do them the same and I was like, OK, if I can’t do these on a trampoline, there’s no way I can do them on the ground,” Baxter said.
Nonetheless, Baxter still says that she has a good relationship with movement today.
“I mean, I’m not as flexible as I used to be, but I do a lot of yoga and I do a lot of walking and swimming so I have a pretty good relationship with movement, I would say,” she said.
In the grand scheme of things, being happy with one’s choice and having a good relationship with movement are probably two indicators of a pretty good outcome. These were two big things I was looking for, as well.
But even so, I’m glad I didn’t fuse.
***
When I said no to the rods, no further options were offered to me. As a young adolescent with a massive hunchback and a stubbornly twisting spine, I was more or less on my own. Not having a clue what to do, I turned to one of the only resources readily available to me: the internet. This was the only place I was able to find others who were also seeking alternatives to fusion.
I want to note that I do understand why looking for medical advice on the internet gets such a bad rap. There is a level of risk assumed when a treatment is recommended by an online stranger instead of a licensed doctor. That said, I’ve come to the conclusion that access to information is Disability Justice. Period. Having access to information gave me choices so that I wasn’t pigeonholed into a choice that I wasn’t sure was best for me.
The doctors pushing me to have the fusion weren’t the ones who were going to have to live with that fusion. The spine and the consequences, both good and bad, were all mine.
While my obsessive internet searches did yield some wacky treatment recommendations, I also found a few things that actually were helpful, including yoga. At 14, on campus at Interlochen Arts Academy, I found a weekly Hatha yoga class for $5. I knew by the end of the first class that my life had changed. It didn’t make the curve go away. Nothing could. But my posture improved, and my pain all but went away. Constant long walks all over Interlochen’s sprawling campus strengthened me even more. Somewhat accidentally, I had discovered that, for my particular body, movement was the best medicine, and this played a huge role in being able to wait as long as I did to have surgery.
Over the years, I grew more and more confident that my body could do anything. I became even more active as an adult, trying out multiple hip hop and street dance styles, such as breaking, popping, locking and krumping. Then I branched out into inversions training and deep flexibility and beginner level contortions. Then I tried pole dancing. Then aerial silks. And then I took my first parkour class and flung myself off a wall. It’s not that I was amazing at all of these things, but I was at least kind of good at some of them, and I found ways to keep going in partnership with my twisted spine.
Sometimes it could be massively frustrating. Having so many asymmetries in my body for so many years made it harder to learn certain skills, and it wasn’t uncommon for some random body part to act up. Sometimes it was also hard for instructors to help me; it’s not like there’s an instruction manual for how bodies work with scoliosis. I’ve yet to see a piece of research about how people with severe scoliosis use their shoulders when they’re trying to hang upside down from a chrome stripper pole. And I think that’s partly because for so long the world has been made so inaccessible and unforgiving that those with chronic illnesses or disabilities weren’t really trying these activities, or perhaps were even being discouraged from doing so. I definitely had instances where instructors would try to push me toward an easier class when they found out about my back, often without seeing what I was capable of first. But I was doing it, and my body genuinely felt better, stronger and more mobile.
Though movement was immensely healing for both my body and mind, it was not a cure, and eventually the balance tipped and my pain levels started to rise again. I upped my activity level even more, trying to outrun pain, but it soon became clear that more drastic action was necessary.
I found my surgeons thanks to a Facebook group. Even once I discovered that ASC was an option, I spent a year and an ungodly number of hours researching my options. ASC is new enough that published literature is sparse, but I read what I could, watched interviews with surgeons both for and against tethering large, “mature” curves like mine and above all, read experiences from other patients. I’m definitely not going to tell anyone that ASC, fusion or any other surgical option is a magic bullet. They all have drawbacks. But, it wasn’t about finding a procedure without risk; it was about making a personal decision about which risks I was okay with for my body and what my priorities were in terms of outcome.
But of course, after surgery and a complication-filled recovery, I had to meet my next challenge: returning to all of the ridiculous activities I’d been up to before the procedure.
Trying to do circus arts at all is hard. They’re probably harder to learn in adulthood, even young adulthood, than childhood. But trying to regain circus skills after having basically your entire torso surgically relocated with what I can only describe as medical shoelaces — plus life-threatening surgical complications — is something else completely. It was as though some muscles had just turned off and I couldn’t get them working again. Others were extremely tense and seemed to seize up randomly. Because any incision disrupts nerves, I had multiple large numb spots while other areas were so hypersensitive even the lightest touch felt like sandpaper. Though I hadn’t had any vertebrae fused, my spine had gone through so much that it still took months to slowly regain any semblance of normal flexibility. I went through six physical therapists my first year after surgery, and most of them honestly weren’t that helpful. I had an uncommonly severe curve, a new and not-well-known surgery and I was doing things that most people in my condition didn’t. None of them could really figure out how my spine worked or understand how I was using my body in my daily activities. So, once again, I was largely figuring things out on my own. Recovering and regaining skills was hard enough. But being discouraged while doing so was even harder. When, in moments of sheer frustration, I would lament that I was more Disabled than ever, there was more than one instance where a doctor or physical therapist would shoot back, “You’re not Disabled!”
Somehow, throughout this journey, the only person who didn’t get to determine what I was and was not capable of was me.
By far, the hardest thing about this entire saga was doing it on my own. Even though I was fortunate enough to have access to experts and professionals, I had not met anyone else who was doing the kinds of things I was, and neither had they. But recently, out of sheer luck, I met another person doing circus with severe scoliosis. Her name is Bekah Cloud, and so far, she’s the only person I’ve seen online doing activities similar to mine with such a large curve.
Like me before my surgery, Cloud has a massive curve, though she doesn’t know the exact measurement. Her curve formed because of a condition known as VATER Syndrome, which she was born with. Like me, Cloud said no to a fusion as an adolescent, saying in an interview with The Daily, “I’m not broken and I don’t need to be fixed.” And also like me, she discovered movement practices, including yoga and circus arts, which she feels have actually helped her body stay strong and mobile despite the curvature.
“Movement is my best friend for my particular body. And the weaker I am, the higher my pain. The stronger I am, the lower my pain,” Cloud said. “And so finding these ways of keeping my body physically strong so I can better care for my body as it is, it’s crucial for me.”
Cloud also said her mental health has improved along with her physical health, which is something I’ve also experienced.
“When so much of my body feels like it’s not showing up for me, I can go to a class and learn a new trick and feel really proud of myself,” she said.
Cloud’s TikTok, which has just under 216,000 followers, shows her achieving impressive tricks. She said sometimes she has to work harder to learn a skill, and that there are some things she can only do on one side — but ultimately, she’s doing it. The internet came through for me again, and after more than a decade, I found a fellow yogi and circus freak doing the thing with a giant curve. And I have to applaud that, because I know firsthand what a leap into the unknown it is.
***
Just shy of a year after surgery, with my entire body still aching and protesting, I began a rigorous program in physical theatre at Dell’arte International. During that year, I traded in some of the time I was spending on arts — such as silks and pole — for slapstick, capoeira, some basic acrobatics and a whole bunch of weird somatic stuff of unknown origin. I was asking a lot of my body — sometimes multiple hours of intense activity each day. I had to stand up for myself daily in order to make sure that I was pushing my body in healthy ways, based on my own wellbeing, rather than the convenience or desires of those who live in bodies that are not considered Disabled by society. But I did it. Just like I slowly regained skills in silks, pole, dance and just about everything else. I haven’t taken another parkour class, but that’s only because the gym caught fire.
For my final performance at Dell’arte, I put on a skin tight, rather see through spandex unitard, a pair of polka dot boxer shorts, an aviator hat and last, but not least, a clown nose. The first notes of Boney M’s “Rasputin” started to play, and I launched into my act: taking off the boxers and dancing (and looking rather naked in nothing but a skin tight spandex), swinging them around on my foot and then catching them in my mouth, pretending to be a dog, and then bothering an innocent audience member to grab the drawers in my mouth and play tug of war, before asking for a belly rub. Then I put the underwear on my head, they quickly fell over my eyes, and I blindly plowed myself headlong into the wall before continuing to dance while hopelessly tangled in a pair of boxer shorts.
I threw my metal-filled body all over the place to uproarious laughter from the audience. But I didn’t break, and I didn’t need to be fixed.
Statement Correspondent Cydney Heed can be reached at cheed@umich.edu.
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