My scoliosis story: Unbraced…after 2 years

chloe before and afterFrustration. Exasperation. Annoyance. Those were some of the emotions that consumed me the first day I wore my brace. Frustrated that a crooked spine was interfering in my happy teenage life, frustrated that I felt restricted from my normal activities, and worst of all, frustrated that the end was nowhere in sight. There was no set duration, no calendar countdown; it seemed like an eternal waiting game.

The initial days, weeks and months with my brace brought physical pain, sleepless nights and feelings of desolation and despair. It was painful to eat, as my stomach would press against the rigid plastic when it expanded. It was agonizing to ride in the car. But like many uncomfortable things, we learn to adjust, adapt and quite honestly, deal.

A couple months after I received my brace, I attended the Passion for Fashion event sponsored by Nordstrom and NOPCO Brace—a fashion show and shopping day for patients with braces. The number of fellow brace wearers shocked me. For months I had felt like the only one. The event opened my eyes—there are actually a lot of kids on this journey.

In the beginning, I saw my brace as a barrier, preventing me from leading an active life. I was allowed three hours per day out of my brace and worried that I could no longer do the activities I loved. But I soon learned to keep track of time. Each day, I carefully allocated three hours to running practice, showering and a few minutes after dinner. Long bike rides, swimming at the beach and hiking—it was all possible, as long as I monitored the time. (Watch the video below to see how Chloe stayed active while wearing her brace.)

Each winter, my Nordic ski team traveled for day-long training trips. During these excursions, I extended my out-of-brace time and returned to my 21-hour brace time immediately after. They were like mini brace vacations.

Perhaps one of the most profound truths I learned from wearing a brace is that the best way to gain confidence is to wear your inhibitions on the outside—in other words, wearing my brace over my clothes.

Taylor Swift and State of Brace

It’s kind of a funny story, actually. My sister Elizabeth and I had floor tickets for the Taylor Swift “Red” tour. Elizabeth was resolute on meeting Taylor and knew loyal fans were often given coveted passes to “Club Red,” the backstage meet and greet. We made signs, decked ourselves in red paraphernalia and were ready to sing and dance the whole show. Begging me to wear my brace on the outside of my clothes, she suggested making a pun of one of Swift’s songs—“State of Grace,” and instead make a “State of Brace” poster.

I found the idea preposterous. I couldn’t fathom the idea of sporting my brace for the world to see. But after much convincing, I gave in—not because I wanted to show the brace, but because I knew how badly she wanted to meet her idol. We were never picked to meet Taylor Swift, but in attempting to help Elizabeth, I ended up helping myself.

Chloe state of braceAt first, it was intimidating and even terrifying to walk around the stadium “exposing” my brace, but it was an incredibly empowering experience. I realized when people stare, it is not because they find it weird, but because they are curious! I found myself engaging in conversations with curious onlookers and I let them ask any questions. Despite the wide variety of reactions to my brace, there was one commonality—everyone accepted my brace as a part of me. My family and friends even lovingly called it my abs of steel.

Before each appointment at Boston Children’s Hospital, I was always nervous, fearing my curves had worsened and worrying about the possibility of surgery. But in the late winter, I received the best possible news: I was allowed to cut down on my bracing hours. Eventually, I would transition to wearing it only while sleeping. I never cried when I began wearing my brace, but at that winter appointment, tears of joy pooled in my eyes. In the final week of April, Dr. Hresko told me I could stop wearing my brace—almost exactly two years  from the date I started.

My scoliosis graduation

In that moment, I flashed back to the first week—I could barely keep my brace on for a few minutes; 21 hours had seemed impossible.

Today, I am astounded by how quickly a body adapts to adversity. Eventually, my brace became second nature. When I started to ease out of my brace, I actually faced difficulties adjusting to not wearing it—I no longer had its strange support. chloe after

My best advice for any brace-wearer is to always maintain a positive attitude. It is by no means easy to deal with, but it is possible with the right mindset. Be open about the your struggles you face, and talk to your parents, siblings and friends, because your loved ones are your best support system. If you have questions, speak up and ask your doctors. I realized how extremely willing they are to help and guide you any way they can. Learn to laugh about your brace and to turn uncomfortable or frustrating situations into something hilariously silly.

My back brace taught me a wealth of important skills. I learned responsibility in taking care of myself and my situation. I understood the importance of diligently wearing my brace and I committed myself to wearing it properly. My brace made me tougher both mentally and physically by increasing my tolerance for discomfort and pain and gave me strength that has translated into many areas of my life. My brace allowed me to meet and create bonds with wonderful people.  And most of all, my brace made me realize how truly blessed I am: blessed for the support of my family, friends, doctors and physical therapists. When my mom asked me what I wished I could have changed in the past two years, I told her that the one and only thing that I wished for was a different color brace. I chose tan because I wanted to hide my brace—what a boring color. I should have gone for the blue tie-dye.

Read Embrace the Brace, the Boston Children’s guide to successful brace wear. Request an appointment with a spinal surgeon in the Boston Children’s Spinal Program.