The Story of My Leg – ExoSym Carbon Fiber Leg Braces

The Story of My Leg

Photographs by Jose Mandojana

For years I dreamed of cutting off my foot. The left one was mangled and palsied from birth, a source of searing pain for as long as I could remember.

I imagined the chef’s cleaver I would use. I pictured that spot between the ankle and the shin where I’d separate the bones and break through the flesh. I could almost taste the relief I’d feel before bleeding out.

I was born with a form of severe spinal damage called spina bifida. Found in one in a thousand births, the condition prevents the sacral region of the spine from fusing with the body, leaving vertebrae, muscles, and nerves exposed, sticking out from the flesh like red coral. Most of those with the condition suffer severe physical and even mental disabilities. But I was lucky: I was part of a small minority known as walky-talkies — I had no cognitive issues and could move without a wheelchair. Still, my joints were fused and stiff, my muscles severely atrophied from disuse. My left leg was shorter than my right and had practically no calf, quad, or glute muscles at all. The muscles in my right leg, meanwhile, were functional but underdeveloped.

By the time I was 21, I had undergone 16 surgeries — parts of my left ankle had been sawed out in a failed attempt to increase mobility; steel rods were installed to straighten the scoliosis in my spine. None did more than temporarily take the edge off.

I was 16 when a doctor first broached the subject of amputation. This would obviously put an end to the pain, but I panicked. I was an insecure teen, and the idea of unstrapping my prosthesis when I brought a girl home (assuming I could ever bring a girl home) sounded like a sick joke. Sure, I walked with a limp, slowly and painfully dragging that left leg behind me, but to the outside world I passed as “normal.” A boy with a bad leg. This was far preferable to being “disabled.”

I had friends — even girlfriends. I never missed a year of school, and after graduating college, I played guitar in a Los Angeles rock band. I lived for a time in Paris and New Orleans and traveled solo across Europe and the Middle East. But I spent my life looking for the shortest, quickest routes possible and developed an unhealthy tolerance for pain. I spent a lot of time gritting my teeth and became very good at hiding the endless doctors’ appointments, the scars on my feet, and the truth of who I really was.

By the age of 24, it was becoming clear that I could no longer hide. My body was breaking down. For years I had relied on my stronger right side to compensate for my left. As a result, my right knee and hip had developed early-onset arthritis, and now I could barely walk a block. Again a doctor suggested amputation. “You can run with a blade,” he said, referring to the Cheetah blades made famous by Oscar Pistorius in the 2012 Olympics. The technology, he pointed out, was commonplace in the military, offering thousands of amputee soldiers rapid movement and agility without any pain. Some were even returning to the battlefield.

No longer a macabre daydream, amputation began to seem like a real option, maybe the only one. Then a family friend sent me a link to a 60 Minutes profile of Ryan Blanck, a prosthetics designer at the Center for the Intrepid, a military rehab facility in San Antonio. Ryan developed similar technology to create a high-tech leg brace that offered the same benefits as the Cheetah blades — without requiring amputation. I watched soldiers struggle to walk on mangled limbs before they strapped on the carbon-fiber braces and took off at full speed, as if they’d never been hurt.

The carbon-fiber ExoSym braces consist of a plate customized to the shape of the foot and two struts leading up the back of the calf, connecting to a support holster below the knee. As you step down, the brace redirects weight and energy away from the joints and stores it in the carbon fiber, kind of like a spring. When you push off, the energy shoots back up the struts, helping you to walk, run, or jump. Since 2009, the device has allowed hundreds of people to regain the use of their legs while avoiding amputation and chronic pain.

My parents and I tracked down Ryan and got him on the phone. I described my situation. He told me that he was moving to a new clinic in Washington state specifically to work with civilians. He’d never worked with a “from birth” patient — that is, someone like me, with a congenital condition rather than an injury. Nonetheless, he suggested we meet.

On a cold January morning, we walked into the Hanger Clinic, in Gig Harbor, near Tacoma. Ryan led us into a slightly shabby gym. He pointed to some missing ceiling tiles and apologized — some patients, former soldiers who train at the clinic, had knocked them out while doing box jumps. I noticed two legless men — Navy SEALs, I later learned — stretching their hips on floor mats.

Ryan led us into his office and cued up a video on his computer. It was pretty much the same stuff I saw on 60 Minutes — once-injured soldiers putting on the ExoSym and miraculously sprinting around tracks and leaping atop boxes. It was too amazing not to smile, so I did. Still, it was hard to feel hopeful. I wasn’t dealing with an injured limb; I was dealing with a body ravaged from birth. These vets had spent a lifetime walking, running, jumping. They were starting over. I would be starting.

What’s more, the braces were expensive, between $9,000 and $12,000 each, and not covered by insurance. But my parents were willing to help cover the cost, and Ryan offered to work out a payment plan, so we decided to take the risk. He took molds of my legs and told us to come back in two days.

When we returned, he handed me a pair of plastic templates, dumbed-down versions of the real braces. I slid them on, stood up, and felt something I’d scarcely experienced: relief and an unusual kind of lightness. For once my joints did not feel like they were exploding under the weight of my body. I walked slowly around the office. Usually when I walked, I would lift one leg and collapse into the knee, then do the same with the other, over and over. Thanks to the support of the braces, I got a sense of what it was like to move with an actual heel-to-toe rollover motion. I looked up at Ryan. “Fuck, man,” I said. “Let’s do it!” I headed back to Los Angeles, where my daydreams, for once, had a happy ending.

Three weeks later I was back in Ryan’s office, where he presented me with a pair of shimmering black braces. I strapped one over each leg and stood up. They squeaked under my weight. As I found my balance, I realized that I was standing straight: With the braces absorbing my body’s weight, my hips moved forward, my shoulders retracted, and my spine, despite its curve, was able to fall into a more natural position. I felt an unfamiliar tingling at the base of my spine — the sensation of my muscles relaxing and blood flowing. I silently began to glide back and forth across the clinic’s floor. Could walking really be this easy?

After about 20 minutes, I suddenly burst out laughing. “Holy fuck!” I exclaimed. I asked Ryan if I could try the treadmill for the first run of my life. My legs flailed sloppily behind me, and my torso was weak at the sides, swaying in all directions — but I was running, grinning stupidly, before I fell over winded, breathing harder than I ever had.

I stayed at the clinic for five days to train with Ryan and a physical therapist. On day one I was sprinting, jumping over sandboxes, and jabbing my knees into the air. Pumped with adrenaline, I could move at only one speed — as fast as possible. Ryan said this happened to almost all early ExoSym wearers, but he warned me to be careful not to wear myself out. “I know you’re really excited,” he said quietly. “But we have a whole week of training ahead of us, and I don’t want you to burn out on your first day.”

Ryan introduced me to Eric, a muscular 26-year-old Army captain who wore braces on both legs. Eric’s convoy had driven over 600 pounds of explosives in Afghanistan, and the blast broke most of the bones in his body. He’d had his braces for two years. He told me that one of the most difficult challenges was mental: training the brain to trust the carbon fiber. “You have to establish a relationship with the brace,” he said, “before your body can truly learn to utilize it.” He offered to train alongside me a few days to help me out.

The next morning he took me to a nearby park, where we jogged through a pine forest. I couldn’t go more than 30 seconds without a sharp pain jutting through my chest, but I was utterly exhilarated. It wasn’t just a physical revelation for me — I had always loathed the term disabled. To me it meant that I wasn’t good enough, that my genes, my body, my entire being was tainted. Working out with Eric and meeting the other military vets at the clinic taught me something: These soldiers didn’t treat me as a cripple; they treated me as a fellow traveler, a veteran of a different kind of war.

On my first weekend back, I went for my first hike, a solo wander through Elysian Park, which overlooks downtown L.A. It was odd just to walk — to walk without constantly scanning the path ahead for obstacles and calibrating the effort it would require to negotiate them. Instead, my gaze was high, taking in the way the eucalyptus trees rode up and down the rolling hills. I had always heard about the great outdoors. Now I was actually experiencing it.

I had a lot of catching up to do. I’d always exercised, swimming every day in college and working on my upper body in the weight room, but this was different. Now, alone or with a trainer, I hit the gym for two hours a day, doing asymmetrical kettlebell swings, single-leg raises, bridges, squats, and side planks to rebuild my body almost from scratch. Muscles I never knew existed began to ache; I rolled them out with a lacrosse ball while listening to them crunch and release. I changed my diet, substituting fish, hearty greens, and vegetables for inflammatory fare like meat, dairy, and gluten. I added supplements — spirulina for energy and protein; magnesium for muscle cramps. I lost weight and my sleep improved. I quit my music-industry desk job and started helping my father run his Santa Monica restaurant. After spending hours on my feet, interacting with guests, a new kind of confidence emerged: I felt like a real person, not someone who needed to be coddled or taken care of.

The pain did not dissipate entirely. My left leg remained stiff and weak, much weaker than my right, and I still had a steel rod in my back — but walking no longer destroyed my joints. In fact, not long after getting the braces, I traveled to New York, a city I’d always hated. This time, however, I walked Manhattan end to end, gliding briskly down the busy streets, gawking at the throngs of people and the massive buildings. It was hard to believe that just months earlier I’d been sitting in a doctor’s office contemplating amputation.

On my trip home, I took a detour to meet a group of old friends for a hike in Yosemite. Studying the trail maps on the plane, I knew I was in for an ass-kicking. I couldn’t wait.

On our first morning, I strapped on my braces and did some exercises on the cabin floor. We set out for the Sentinel Dome trailhead. It was November, and frost clung to the trees in the predawn light. Following the steam from my breath, I led the five of us. We hiked all day, 10 or 12 miles, but I felt nearly no discomfort. Instead I felt calm, tranquil. I swung myself forward, feeling the flex in the braces as they projected me up the hill.

As we approached the cold, gray face of Sentinel Dome, we started scrambling up a steep sheet of rock. My thighs began to burn, and I fell to the back of the pack. The granite there is slippery, so you have to be very specific about where you put your weight and must rely on your feet to grip the stone. But I didn’t have to overthink things: I trusted the braces completely.

Finally I was at the summit, high above the floor of Yosemite Valley. I laughed and coughed for air. Adam, a lifelong friend, slapped me on the back. I had survived, not just the hike but something else. There I was, 8,000 feet above the fear I’d lived with forever, far away from the couch and the hospital bed, in another world from the person I thought I was destined to become. I relaxed and enjoyed the view.

http://www.mensjournal.com/health-fitness/articles/the-story-of-my-leg-exosym-leg-braces-w437795

One comment

  • Chas,

    Your story is incredibly inspiring. I’m a Mom of a 4 year old daughter with Spina Bifida. She currently isn’t walking but doctors say she has the muscle for it. I’m just waiting for her to be motivated enough to want to do – and then can’t wait to see her take off! She’s had 7 surgeries and we have two surgeries scheduled for this year. You are so blessed to have an awesome team of doctors and to live with appreciate for your talents. My greatest hope for my SB daughter and other children is to find happiness is each day and feel that fire inside them like you. Thank you so much for sharing your experience. I wish you the best in all that you do! Keep staying motivated! This life is a beautiful gift.

    Take Care,

    Erica

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