I’ve gone through innumerable pairs of leg braces in my life. Every year or two, throughout my childhood and adolescence, I had an appointment with an orthotist who would wrap my legs in cellophane and plaster, creating perfect replicas of my atrophied legs. It was like getting a fresh pair of shoes for the new school year, only more involved and considerably more expensive. The braces were always plastic AFOs, usually nude, although occasionally I opted for something more bold–a purple butterfly print in the 4th grade, a neon tie-dye a few years later. Because plastic acting as calf muscle wears down quickly, I was never stuck with a particular design for long.
When I started high school, I had to keep a wheelchair tucked away in the front office for the days my plastic legs weren’t enough to carry me. As the semesters ticked on, however, the weak days outnumbered the strong, and by sophomore year, I was using the wheelchair every day. I declined to take it with me when the day was done, even though I had begun to feel vulnerable without it. My brother would pull his car right up to the exit, so I wouldn’t have to hobble across the lot. Once I was at home, I would crawl from room to room (ruining my knees for years to come). At the time, crawling seemed better than bringing my school chair home. There was a permanence in that act that I wasn’t ready for.
“You have to see this video!”
I crawled into the next room where my mom was excitedly pulling up a website on our ancient desktop.
“You won’t believe it. Just watch.”
A teenage girl, also named Monica, was walking between parallel bars in a doctor’s office–walking just like me. Her gait was awkward, her feet dropping and nearly dragging on the tiled floor.
The video faded and when it came back, the same girl was walking normally. Her posture was straight and she glided with ease across the same floor she could barely traverse before.
She was wearing leg braces unlike any I had ever seen. Instead of the bulky plastic AFOs I had worn my entire life, these were sleek and made of carbon fiber. I stared at the screen in awe. My mom and I were in instant agreement; I had to get those braces. But after about 30 seconds of research, we faced a defeating hurdle: the braces were invented and created by one man in Las Vegas, and to get them we would have to be able to stay in Vegas for at least two weeks. He may as well have been located on the moon.
My mom, the tenacious and resourceful woman that she is, sent the video to my orthotist, Chris. Armed with technical skill and a deep knowledge of my condition, Chris got to work crafting an unofficial pair of Helios® braces. He had never made anything like them before, and I was going to be his guinea pig.
After casting, the wait was excruciating. Weeks passed slowly as I daydreamed about walking the halls of my high school during my senior year. For the first time in nearly four years, unfolding my wheelchair each morning felt remarkably temporary. I replayed the video over and over, both on the computer and in my head, reminding myself not to get my hopes up and failing miserably. When Chris finally called to tell us the braces were ready, I almost ran to his office, CMT be damned.
“I’m going to fall!” I yelled at Chris in full panic once he slipped on my new legs and helped me to my feet.
“No you won’t,” he remained calm. “You have to lean forward into them. It’s going to feel different.”
Everything about the braces felt foreign. I had to throw all my weight forward, supported by the part of the brace that rested just below my knee. It was terrifying to walk that way, like balancing on the edge of a cliff. A few times walking the length of the parallel bars, though, and I had it down, just like the other Monica in the video I had obsessively watched. I caught myself in the mirror, startled by my own reflection. For the first time in years, I was walking tall.
That confidence briefly faded when we stepped outside, and I was faced with the short ramp leading down to the parking lot. My brain could not compute leaning forward while walking downhill. I saw flashes of blood and busted teeth. So I settled on an awkward shuffle of tiny, old lady side steps until I was on flat ground. My mom and I laughed until tears stung our eyes, the hopeful anxiety we’d felt for weeks melting away into pure giddiness and joy.
The next morning, I slipped on my new legs in my bedroom. As I began to stand up, I heard a deafening CRACK and fell back down to the floor. I lifted my pant leg to the heartbreaking sight of my new brace split in half.
I lost count of how many of them snapped that way. It was the same every time. Chris would try to make them stronger, and I would leave his office full of hope, only to hear that horrible CRACK a couple of days later. One pair lasted three or four days before splitting in half while I was at the park with my friends. I drove the whole way home with tears streaming from my eyes and the broken brace digging into my calf.
After we turned in the third or fourth broken pair, my mom and I spent the car ride home discussing the facts. Chris had never made these before, he wasn’t charging us for all these iterations, and it may take a long time to get it right.
I started guessing by milestones when I would be able to walk. Maybe by the spring musical, maybe by prom, maybe by graduation.
I looked over to my mom, the strongest woman I’ve ever known. My mom, who raised two daughters with this disease, who took care of my dad when he, too, started becoming weaker. A tear slipped from under her sunglasses, one she wiped away quickly, but not quickly enough that I didn’t see. It wasn’t a tear from laughter, born from the giddiness of hope, but of the knowledge that there was nothing she could do to help me. For all the times she had held me while I wept, I had never seen her cry once over my disease. And now here she was, a crack in her fiber like so many pairs of braces. I hadn’t considered how hard this had been on her, too. In thick voices, we reassured each other that everything was going to be okay.
“You’re so strong,” she told me as she gripped my knee.
I looked at the tear track in her makeup and felt more hopeful than ever. We both wanted this so badly, and we were going to keep trying until those braces were as strong as us.
A few weeks later, for what seemed like the thousandth time, we got the call that the next pair was ready. Once again, we waited in Chris’s office, staring at pun-filled posters of amputees and feeling stubbornly hopeful. Chris carried in the new pair and explained that he had experimented with the technique, this time braiding the carbon fibers to build a stronger structure. He assured me, with dark circles rimming his eyes, that this time they would not break.
He was right.
I strode past my wheelchair that first morning with my new legs, leaving it folded and abandoned in the front office. I stood shoulder to shoulder with my peers and sauntered past the ex-boyfriend who had only known me in a wheelchair. My friends shouted, “Whoa, baby!” in the halls, and teachers doled out high-fives. By the end of the day, I was more exhausted and happy than I thought was possible. And it didn’t stop there.
I strutted my stuff during the spring musical.
I stood tall next to my prom date. (Although, not nearly as tall as my date.)
I walked across the stage at graduation and stood strong after, flanked by my parents.
The summer I walked tall remains one of my fondest in memory. I was preparing for college, going on adventures with my best friends, and falling in love with the man who would become my husband seven years later. I was navigating every part of my world differently, and there seemed to be nothing but possibility on the horizon.
My first college class began at 8:00 am on a Monday, and by the time I found a parking spot, I only had minutes to spare to find the classroom. I slung my backpack over my shoulders and started hoofing it toward the science building. A middle aged woman approached me, carrying a thermos of coffee and a stack of papers. Figuring she was a professor, I asked her for directions, but she worked on the other side of campus and was as clueless as I was. Before wishing me luck on my first day, she asked, “Are you okay? Why are you limping?”
I explained my situation as briefly as possible, accepted her well-wishes, and pushed through the glass doors of the science building, the sudden whoosh of air conditioning calming my first day jitters and pushing her question from my mind. I approached a group of girls who informed me that the room I was looking for was in the basement.
“Oh. Is there an elevator?”
“I don’t know, sorry,” one replied as her eyes dropped to my legs, her curiosity evident.
I found the elevator on my own and made it to class on shaking legs. Mercifully, there was an open seat in front, and I plopped down, sweat beading on my forehead. I have no idea what happened on that first day of Astronomy 101. I was too busy silently praying that the lecture lasted the entire 50 minutes, so I could rest before I had to walk back to my truck.
I knew I had to drive home and get my wheelchair. The campus was just too big, even for my new bionic legs. As I loaded my chair into the back of my truck, the professor’s question and the curious eyes of the girl resurfaced in my mind. I was reminded of an incident from the week before, when a coworker asked me why I wasn’t wearing my new braces anymore.
“I am!” I had said, a little offended.
“Oh, it just doesn’t seem like you’re walking as well. Your posture’s not as tall.”
I secured the wheelchair and closed the tailgate. This is just for today, I thought. Just temporary.
About a year after I had gotten the new braces, I begged my mom to call Chris. She had to tell him that the carbon fiber wasn’t as strong as it had been months ago. They were getting weaker, just like my plastic AFOs had done. I was using a wheelchair on campus all the time now, and a walker at home.
“No,” Chris told us. “Carbon fiber doesn’t lose strength like that.”
It wasn’t the braces. It was me.
The scales tipped. I had been riding on hope and possibility for too long, ignoring that my condition is progressive, foolishly believing that a new pair of braces would be enough to change the inevitable course of the disease eating away at my nerves. I did physical therapy as recommended, but I was never again able to walk without the walker. And soon, even that became impossible. Two years after I strode past my folded wheelchair, I was back in it for good, my miracle braces finally stripped of their magic. I was Cinderella, and the clock struck midnight.
I was angry for months after I lost the ability to walk again. I was angry at myself, at Chris, at my physical therapists. It all seemed so unfair, like the universe was an older sibling who broke my favorite toy just because she could. My heart was broken, and the only thing that repaired its cracks was time and perspective. With eight years of distance, I can look back and see that we caught lightning in a bottle. Chris was able to create a brace that let me walk really well, right at the final point in my life that I would still be able to walk at all. I will always be grateful to him for that year I stood tall. And now, he crafts those braces for a ton of people. I hope they love them as much as I did.
I still have my miracle braces tucked away in my closet. They’re the only pair I’ve owned that I can’t seem to part with. I’ve accepted that I will never have the strength to walk again, but every once and a while, I slip them on, just to see if the magic comes back. Because despite the universe’s best efforts, I am as stubbornly hopeful as ever.