Locked In: The Will to Survive and the Resolve to Live

by Victoria Arlen

  • • •

  Throughout this journey I have battled an external force. The best way to describe it is when you’re underwater and you let all the air out of your body, and you begin to sink. I’m a swimmer, and the water has always been my special place. But for the last decade I have been fighting to reach the surface. Each time I got close, something would happen to pull me back down—whether it was getting sick, the IPC drama, the fear of death and the unknown or, even more recently, facing and coming to terms with what happened to me.

  There have been times I’ve been tempted to stop swimming and give in to the force that was pulling me underwater.

  Life at times can be confusing and hard and frustrating. Unbeknownst to most of us, we are fighting a force that wants to pull us under. But each time you have a decision to make: sink or swim. Each wave hits and sometimes it knocks the wind out of you. Other times the water is calm and serene, and you can peacefully drift and marvel at the wonder of it all.

  Just keep swimming.

  Even when it hurts.

  Even when you can’t keep going …

  Keep going.

  Swimming to the surface when it feels like you’re sinking is easier said than done. But it took that moment on the chairlift in Austria to realize that. It’s okay sometimes to sink a little bit. You just have to keep yourself from getting too far down. Keep moving even if it’s not as strongly as you’d like it to be.

  Just keep swimming.

  Swimming is a sport of constant movement. Whether it’s the Olympics or the lake or swimming to stay alive, they all have the same theme: constant movement. The minute you stop moving is when you sink or lose, drown, or drift away. Life, at least in my experience, is like a constant swim. Sometimes the waters are calm and serene and picturesque, and other times they are choppy and uncertain and dangerous. But if we stop moving, we don’t move forward. And life is all about moving forward. Never allowing the waters of life to get stagnant or dry out. Keep turning even if you do not know where you are swimming to sometimes. That is okay. After all, we really have to take the swim one stroke at a time. Day by day, moment by moment. Sometimes it’s hard to swim and that is okay.

  You’ll get there.

  I promise.

  When it feels like you’ll never reach the surface, keep going. When the waters seem too deep, never lose sight of the light above the surface. That light is bright, and it is yours regardless of how far you’ve sunk down or how tired you are.

  Take back that light.

  Reach the surface.

  I’ve learned over and over and over again that when you feel like stopping and when you feel like giving up—that is the time when you have to find everything you have to keep going.

  But sometimes you’ve battled the rough waters and you reach the surface, only to find that there are cliffs and mountains ahead of you.

  What do you do?

  Do you give up?

  Give in?

  Or climb?

  It’s scary to climb and take that leap, especially after battling rough waters. You’re tired and weak. You’re running on empty and you feel as if you’ve got nothing left. No more fight. But that is the moment when you find it within you to climb. Mountains can be daunting and scary and at times “impossible” to climb. But think about the photos you’ve seen and maybe even the views you’ve experienced.

  Some of the toughest climbs have the prettiest views.

  This mountain I have been climbing for over ten years at times felt endless. It felt like I was never going to make it to the top. But my promise to God was to live boldly and use my voice to change the world. And that’s just what I planned to do. When climbing a mountain, there are moments when it seems impossible and when it is beyond challenging and painful. But if you keep climbing despite the obstacles, you WILL make it to the top and maybe even have a victory dance.

  17

  VICTORY DANCE

  September 18, 2017

  “Dancing the cha-cha, Victoria Arlen with her partner Val Chmerkovskiy.”

  That’s me.

  Holy moly.

  This is it, standing on the Dancing with the Stars dance floor as one of the celebrities chosen for Season 25 in hot pink, sparkly, fringy pants and a bedazzled crop top. Looking out and around at the place I dreamed of as a little girl. I even had this dream during some of my most painful moments, watching from a hospital bed in the ICU or the hospital bed in my living room. I am here, in the game, not on the sidelines anymore and paired with by far the best teammate, Mr. Valentin Chmerkovskiy.

  Before every dance, there is an intro montage that plays for audiences at home and in the ballroom. The video for week one introduces each celebrity and tells their story of making it to Dancing with the Stars. As you can imagine, mine is a tearjerker. I have never publicly shared a lot of what is played in the video—in particular the incredibly heartbreaking footage of me fighting for my life. I would consider myself pretty immune to everything I went through. Especially after the year of emotional healing that had taken place. But this moment in particular is unlike anything I had ever experienced.

  Watching the video before my dance, I see that little girl fighting for her life in a hospital bed. The footage is heartbreaking, and for the first time, I feel that pain so strongly I want so badly to reach out to little Victoria and tell her to hold on and keep fighting. That everything was going to be all right. In an instant, I snap right back to that place of pain and am nearly paralyzed. I feel my chest tighten, my hands shake, and tears start to well up in my eyes.

  How could this be?

  How did I get here?

  I was paralyzed a year and a half ago, and now I’m about to dance in front of millions.

  I can’t even feel my legs.

  I don’t even know which foot I’m using.

  This seems impossible.

  Is this really happening?

  For a split second, I feel locked in and trapped by these thoughts and emotions that flood my brain like a tsunami. But then I hear an excited voice yell, “Victoria, Victoria, look at me.” I look up at Val, who is smiling from ear to ear. “This is your time.” In that moment I immediately snap back to the beautiful and wonderful reality. I am alive, on my two feet about to dance a cha-cha and show the world that nothing is impossible. I knew from the first day of rehearsals this was for a far greater purpose.

  Click.

  Click.

  Click.

  Click.

  The four clicks start (which is the audible intro beat that happens before every dance) and all I can do is look up and thank God. My heart overflows with gratitude. As the music begins, my gaze turns to the camera and then to my partner, Val, who excitedly proclaims, as he runs over and grabs my hand, “Let’s go change the world!” And in an instant (one minute and eleven seconds to be exact), we do just that. As we dance, we prove to millions that despite insurmountable odds and challenge after challenge, you can be victorious.

  This is by far one of the most powerful and memorable moments of my life. Far beyond anything I could have ever imagined. I realize I am not that little girl in the hospital bed. I am alive, free, in pink, sparkly, fringy pants and DANCING on Dancing with the Stars. The very show that at ten years old I proudly proclaimed to my mummy that I would be a part of one day. And when I was sick, my parents would turn on the show hoping I was “in there” and still dreaming and believing. The show that at many times was my escape from the horrific and painful moments of this journey.

  In an instant, this whole journey has come full circle. As the music ends and the pyrotechnics commence, I can’t stop smiling. And for the first time in a long time, I am speechless. “You did it, I’m so proud of you! Tonight, you changed the world,” Val says as we tearfully embrace each other and celebrate. I’m honestly speechless. This moment is bigger than the both of us realized and so much more than just a dance. I can’t help but feel this insane amount of gratitude for the second chance at life that I
was given. And to see my parents in the crowd crying tears of joy, all I can think is …

  I’m really glad I lived.

  As the crowd roars and Tom Bergeron walks over with a huge smile and proudly says, “Look at what you just did,” I also realize another significant thing.

  I made it to the top of the mountain, and this is my victory dance.

  All those years of pain and suffering and fighting have turned to joy, gratitude, and dancing. For those who truly know me, I LOVE to dance. This is that moment where I clearly see firsthand the purpose for all that I had gone through.

  Purpose for the pain.

  Dancing with the Stars, aside from all of the glitz and glamour, is one of the biggest healing experiences for me. It is actually healing that I didn’t even realize I needed.

  Before I left for Dancing with the Stars, I had been crippled with severe posttraumatic stress from this journey. It took ten years for it all to hit me. Only a handful of those closest to me knew what I was going through. They knew the unbearable pain I was in. But nobody else knew. I know how to put my warrior face on and oftentimes I hid behind my smile. I still struggled with finding a purpose for everything I had gone through. I had brief moments when I could start to understand, but for the most part, it didn’t make any sense until that first dance on September 18, 2017.

  Throughout this journey, God has sent people along the way who have helped me heal. Like a puzzle, each person represented a piece coming together to help me be whole again. It’s kind of like when I was little and would dump out all the pieces on the floor and then, one by one, connecting the pieces I could see the picture as a whole. But in the beginning, it was a mess.

  I was a puzzle.

  And I was a mess.

  At this point in my journey most of the pieces of the puzzle are together. But there are still a few missing …

  Each dance has a message and a story to tell, and in each dance, Val teaches me how to hold my head up and fly. He pushes me like Coach John pushed me in the pool and like John pushed me at Project Walk. He doesn’t see what I can’t do and instead empowers me with what I can do.

  Holy crap!

  Despite me not being able to feel my legs, Val teaches me how to DANCE, something I never in a million years imagined myself doing again. It was actually one of the things I missed the most when I was so sick. I’d spend hours imagining dancing again, and now here I am—dancing. We found a system and a way of helping my legs and me connect. Val and I would often come up with key words. While viewers watched in delight on the TV and heard the beautiful music, Val and I would be yelling words like, “bunny, shrimp, left, puppy, right, your favorite, zigzag, point, take off, glide, quick quick slow, and down” … to name a few. Week after week I continue to improve and be pushed by Val. And intense is an understatement: five plus hours a day in the studio and countless hours after rehearsals envisioning and making sure my legs would keep working. Spasms were still pretty evident, but believe it or not, when I started dancing, my spasms got better, the nerve pain in my back got better, and I was even able to walk better. In every possible way, dance was the final piece of healing after this long and painful journey. It allowed me to be free in every way and truly see what my body was capable of. But learning to dance was ten times harder than learning to walk.

  Seriously.

  But every day, each time I set foot on the dance floor, I am reminded of what I can do, and I find a greater purpose for all the pain I have endured. We are changing lives. Each step and each time we dance, a small piece of me is put back together and my eyes twinkle a little brighter. My family sees it, I see it, and the world sees it. I am constantly reminded that nothing is impossible. I’m possible. The mere fact that I am dancing is a miracle itself. But beyond that, I learn how to hold my head up, something I haven’t been able to do in well over a decade.

  Aside from teaching me to dance each week, Val pushes me to stand tall and confident and proud. Which is something I never really embraced. For years, I had been knocked down, and so, over time I got used to having my head down. Being in a wheelchair and being stared at and looked down upon by my peers for years caused me to go into my cocoon. I was told well over a hundred times and even as I began to walk, I still would keep my head down for different reasons. Mainly for the fear of falling over and also to see which foot was stepping first. Not feeling my legs made it really difficult to maneuver when I was walking. But I just got used to having my head down. I didn’t realize it, but this journey had taken its toll and left me with a heavy heart and my head down. Aside from the accomplishments and blessings, there was so much that I held in. But like all habits, good or bad, over time we get used to them. I got used to keeping my head down and being in a cocoon. But I was never meant to stay there, and God definitely had another plan for me.

  I was meant to fly.

  And …

  Dancing with the Stars is my flying lesson …

  • • •

  Hold your head up.

  It’s your time to shine.

  • • •

  The people I meet and the lifelong friends I make on the show are simply the icing on the cake of an incredible experience. They, too, play an immense role in helping me stand tall and shine. On top of all the amazing things, another part of me healed. For years since I returned to the world, birthdays were always incredibly tough for me. On my fifteenth birthday in 2009, I really did not think I’d make it to see another birthday. As much as Father Bashobora was providing hope, in my heart I thought that my time was up. I said good-bye to my family and, more important, I held on to sharing one final birthday with my brothers. Since then birthdays always held a heavy place in my heart. That was until my twenty-third birthday, when not only did I share it with my incredible Dancing with the Stars family, who surprised me with a cake and tiara, I got to share it with the millions of viewers, forever changing my views on birthdays and giving me a memory that made all the ones in the past disappear like the frosting on cake. (Fun fact: I LOVE frosting!) Finally, I am no longer watching from the sidelines. I am in the game with the best possible team.

  You did it.

  We did it.

  This is the mountaintop and that view I had been dreaming about. And it is even better than I could ever imagine. And a reminder that some of the tougher climbs have the most beautiful views.

  • • •

  Facing our fears allows us to embrace our fears, which allows us to defy our fears and eventually conquer our fears.

  Face it, embrace it, defy it, conquer it.™

  Find the courage, feel the fear, take the pain, and keep going. It gets better. I promise. Keep climbing, even when it hurts. I promise you … the view is worth it, and the victory dance is better than you could ever imagine.

  The best is yet to come.

  And …

  I’m just getting started.

  SPECIAL THANKS

  As I reflect on who I need to thank from my tragic, beautiful journey, I am reminded of the moment when I realized that not only can I not write about every detail of this journey, but I can’t possibly write about every amazing angel. If I had tried, my book would have surely been more than one thousand pages long. The angels who came in and out of my life these last twelve years all had a reason and a season. You all know who you are, and take solace in knowing you have a very special place in my heart. Thank you, thank you, thank you … you have all been the wind beneath my wings and for that I am eternally grateful. I love you all. Thank you for giving me the wings to fly.

  ABOUT THE AUTHOR

  VICTORIA ARLEN, after beating the odds and recovering from two rare medical conditions that left her locked inside her own body with no ability to move or communicate, has become a world-renowned speaker, ESPN on-air personality, model, actor, and champion swimmer. Her swimming résumé includes three silvers and a gold medal from the London 2012 Paralympic Games as well as multiple world, American, and Pan American records. And after bein
g back on her feet for only a year and a half, Victoria competed on Season 25 of Dancing with the Stars with Valentin Chmerkovskiy, where she quickly became a fan favorite. She has become world famous, not only for her story and accomplishments but for her message:

  “Face It, Embrace It, Defy It, Conquer It.”TM

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  Copyright © 2018 by Victoria Arlen

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