By Sydney Collier
I was told at seven years old I wasn’t supposed to be alive. It sounds dramatic, but it’s the truth. An MRI told us it was true: I had an arteriovenous malformation (AVM) behind my right eye and another one deep in my brain. And I had a preliminary diagnosis: Wyburn-Mason syndrome. So, in fact, I very well might die.
Wyburn-Mason syndrome is a rare, nonhereditary, congenital disorder—in other words, it happens during fetal development but is not caused by one’s genes. Affected individuals have AVMs like mine, usually found in the eyes and brain. Fewer than 100 cases of Wyburn-Mason syndrome have been reported, according to the National Institute of Health. Most diagnoses have been confirmed by pathologists in infants only after death. It was a miracle I had even lived to see seven years. It had never happened with a known Wyburn-Mason case before.
Four years later, in 2008, doctors recommended a high-risk brain surgery. The surgery took place at Stanford Medical Center in Palo Alto, California. The procedure was textbook, and everyone was happy with the results—especially my neurosurgeons. Or so they thought. On the way from the operating room to the pediatric ICU, I had my first massive stroke at 11 years old. These strokes would continue over the next eight years of my life, leading me to patient rehabilitation where I had to relearn how to walk.
After that first stroke, I struggled to come to terms with a body that no longer felt like my own. To put it simply, even though I was alive, the goals I set for myself were not clicking the way they did pre-stroke. To combat this, and to figure out how to adapt and accept my body, I got involved in therapeutic horseback riding.
Therapeutic horseback riding became a bridge from my old life, when I had ridden as a small child, to my new one. At the barn, I was capable, and my confidence in the saddle grew under the guidance of the staff at Therapeutic Riding, Inc., in my hometown of Ann Arbor, Michigan, who specialize in adaptive horseback riding and equestrian sports.
This therapy helped me adapt to my body, but disability visibility is what helped me accept it. At age 12, I had the opportunity to attend the World Equestrian Games in Kentucky, where I saw Para Dressage on the international stage for the first time. This was a pivotal moment in my life that sparked a true epiphany: I realized, if these athletes are out there pursuing their goals, then I can too.
Cut to 2016. Everything I had experienced in my life had led me to this moment, riding down the centerline of the arena at the Rio Paralympic Games in Brazil. It hadn’t been a straight trajectory, but it was my journey—from that hospital bed to competing in Paralympic dressage. This goal had often felt so big that I feared it might not happen. As cliché as it sounds, that emotional moment in Rio was a dream come true. I was proving to the entire world that I was good enough to compete at the highest level, even though I was not a typical dressage rider.
My partner that day was a horse named Western Rose, or “Rosie,” for short. She was an Oldenburg mare, borrowed from my trainer. She was the horse chosen for me by the United States Para Dressage Team selectors because of her experience. She’d competed in the Paralympics previously with another rider and could show me the ropes. Rosie and I were so attuned to each other during the competition, nothing else mattered. We could have been anywhere, in any ring, and we would have communicated as one entity. My ride felt like slow motion as the crowd roared, and their excitement filled me. The heat of the sun blazing down on us, making the arena glow brighter, my horse moving underneath me, and the exhilarating sound of the spectators cheering us on was like a dream. In fact, it was better than all the dreams I’d had in the past five years, because this was real.
That afternoon in Brazil was a defining moment in my life. All the challenges I had faced could have meant taking a different road. Yet, in some ways, those challenges were why I was able to experience something few people in life do—the thrill of competing for your country against the best athletes in the world. Like a building block, each challenge in my life had brought me higher, lifting me to this pinnacle. On the cusp of completing a goal that had once seemed impossible while lying in my hospital bed as a young child, I felt joy in the reward for hard work and immense gratitude for the horses who lent me their legs when mine had an agenda of their own. These three things were the foundations of this defining moment.
I ended seventh out of twenty-two top riders from around the world, competing against many already decorated Paralympians. About three weeks after the close of the Paralympics, my mom received an official email, inviting us (along with my whole team and other Team USA athletes) to visit then-President Barack Obama and his staff at the White House. I was in disbelief. Only six years before, I was looking for a purpose. Now, I was celebrating with world leaders!
Since the 2016 Paralympic Games, I continue to manage my health through leading an active lifestyle, including daily riding and a training routine that I take extremely seriously. Horses continue to play an important role in the management of my condition, which brings me much joy and gratitude.
My hope is that education and opportunities surrounding Para sports become more readily known and available to all those eligible to participate. It transformed my life and outlook. My wish is for everyone with rare disorders to discover avenues to take part in Para sports and start to live beyond expectations!
Sydney Collier’s new memoir, Beyond Expectations, has just been published by Trafalgar Square Books. For information about the book, visit trafalgarbooks.com/products/beyond-expectations.
Interested in participating in adaptive sports near you? The first step is to try. Visit the “Recreation” page of NORD’s State Resource Center to find free or low-cost adaptive athletic organizations near you. You can have your organization added to this free resource by emailing [email protected].