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

by Victoria Arlen

  After much back-and-forth and a lot of convincing, I get back to the water.

  Never truly realizing how big of a splash I would make …

  8

  THE SPOTLIGHT OF SUCCESS

  August 2010 to September 2011

  Splash!

  Before I know it, I am being thrown into the pool by my brothers William and Cameron. The water is freezing, and since I have not been in the water in many years, I am terrified. I feel awkward and disconnected from a place that has always been my place—ever since I was a baby. The place that once gave me the greatest peace is now the place I fear most.

  When I was a kid, you’d always find me in the water. I was the first to jump in and the last to get out. Our family was always around pools and lakes. As soon as spring started to become summer, I was in the water. During the winter months, I swam competitively.

  When I was just five, I started begging my mom to please let me swim on a swim team. Knowing the commitment and long days required—she was a swimmer in college—my mummy didn’t let me join a team until I was nine. She wanted me to explore other sports and be a kid.

  I loved the freedom and the high I got being underwater. The peace and tranquility were food for my soul, and I couldn’t get enough of it. Even at some of my sickest moments, I would picture myself underwater—at total peace and away from the illnesses that were trying to drown me. I could always go into a peaceful meditative state when I was underwater.

  But I’ve become terrified of real water.

  You’re doing so good, Victoria.

  You’re back in the water.

  Just relax.

  Go back to your peaceful place.

  I hold on for dear life as my brother Will holds me and moves me around in the water. Both Will and Cam are so supportive, and they cheer me as I struggle to swim. The life jacket is snug, and it continually tugs at my feeding tube, which is a source of discomfort to begin with. I am uncomfortable and frustrated. I feel constricted and confused.

  How can I ever swim again?

  I can barely move my arms, and my legs don’t work.

  The girl who could fly through the water can barely float on her own.

  Nothing will ever be the same.

  My brothers are persistent, and day after day, they take me to the pool and swim with me. Eventually, I hold on to my brothers less and find movement and fluidity in the water. It’s not easy, but I am now determined. My illnesses and horrible experiences have already taken so much from me, and I am not going to let the water be added to the list.

  The whole summer of 2010—before I start high school (cue the scary music)—is dedicated to me regaining me. I want my life back. And although my life is different than it was, this is still my life. Water was one of the biggest parts of my life before all of this, and my brothers know that.

  But then, another goal pushes to the surface—school. This is definitely on the back burner of my mind.

  Will I be able to go back to school?

  What will the kids think of me?

  Will I be able to make up all the time that I’ve lost?

  I’ve always been a strong student, and I try to remind myself of that daily. But the reality is that I have not been in school since the fifth grade, and now, just before my sixteenth birthday, I am supposed to go to high school—high school! Will and Cam are sophomores, and I want to catch up to them. Recently my family moved to Exeter, New Hampshire. My mum grew up there, and they have a fantastic school system. It’s funny, but ever since I was little, and my family would visit Exeter, it always felt like home to me. But now, I am the new kid in school—and that’s never fun. Especially if you’re the new kid, in a wheelchair, with a feeding tube, crooked teeth, bangs, and a double chin. Let’s just say, my first day of school is far from stellar.

  Some of the kids are cruel, and they make sure I know that I do not belong and that I am “different.” As if I don’t already know that. I am mocked daily for the mere fact that I am in a wheelchair. Nobody gives me the time of day or talks to me, except my brothers and occasionally my cousins who are in a grade above me. I feel so lost and confused, and this makes me even more upset with my situation and being wheelchair-bound. I never actually felt different and like I didn’t belong until I go to school.

  And to top it off, I am put in a class where we color. Yes, color. It is a “special” class. I don’t need to color; I want to learn. But when I was tested back in the summer, I was still significantly compromised. Reading is still making its way back into my life, among other basic skills. And my case manager is a real pain in the bum bum and won’t listen to me or what my goals are. So, being the feisty now-sixteen-year-old who doesn’t have time for those who don’t believe in me, I go directly to the guidance counselor and demand that I be put in college-prep, “normal” classes, because I want to have a career and I want to go to college. My body may have been taken away from me, but my brain is very much alive and healthy and ready to be inspired and taught. I set a very lofty goal of graduating with my brothers, which means I have to make up five years of school in three years. I am not going to be left behind or watch from the sidelines anymore.

  Bring. It. On.

  With the help of my mum and an incredible new case manager and an amazing guidance counselor, I set my course. It isn’t easy, but I prove the doubters wrong. I’m given a “trial period,” which, depending on how my first semester goes, will determine if I can continue down this “crazy” path. At the end of my first semester, my report card is filled with As and Bs, which not only blows away my teachers, but also quiets the doubters who were so quick to judge and discourage my goals. I am on the right track and finally in the groove.

  But I still struggle with the social part. I have not interacted in a “normal” setting since I was eleven. Needless to say, I am not eleven now, and I have much to learn about the social aspect of things. The world is very different, and high school feels like a foreign country. The kids my age say things and act in ways I truly do not understand. I mostly keep to myself and try to stay away from the halls when other kids are there, because I don’t want to be humiliated or laughed at, which is common wherever I go. My new case manager lets me escape to her office to get my work done. I ask for extra time to get to class so I can hide in her office until the halls are clear and all the kids are in class.

  At school I’m very isolated, mostly because I’m so weary of the humiliation I feel when I’m around my classmates. I find solitude in my studies and focus my attention on them. I do what I can to avoid the mocking and staring and straight-out rudeness. I can’t even go to the library without kids laughing and pointing. In some ways, I see why I am a target, with the wheelchair and feeding tube. But I don’t see how that is an excuse for unkindness and mocking. If they only knew what I have been through and that it hasn’t even been a year since I began to “wake up.” If they understood, I don’t think they would be so cruel.

  But dealing with their unkindness only makes me stronger, and every day when I come home, Mummy builds me up and tells me how smart, beautiful, and strong I am. Kind of like Aibileen in The Help tells the little girl she takes care of: “You is kind, you is smart, you is important.” My mum is a modern-day Aibileen. And she continually reminds me that “it’s not about the quantity of friends you have but about the quality of friends you have.” I never forget that.

  When I got sick, a lot of my friends from the town I grew up in forgot about me. They were young, and I was so sick for so long. Their lives moved on—as they should. At the beginning, some friends did come to visit, but my appearance was upsetting, and I was often too ill for visitors. Also, my mummy was very protective of my dignity, so she did not allow many visitors.

  I went from having a bucketful of friends down to just four solid friends. These four (Kendra, Sarah, Nicole, and Ben) stuck with me through it all. Kendra, whom I’ve been friends with since I was five, sent me a card almost every week and she sent little gifts
and posters. Ben, who has been my bestie since three, would visit no matter what state I was in. He was there for me and loved me. His mom, Karen, even bought school supplies for my brothers while I was away at the hospital, so Mum could check that task off her long to-do list. Sarah and Nicole were my two dearest friends from the swim team I was on before I got sick. We always went to swim meets together, and we’d do arts and crafts. All four of these friends stood by me throughout my journey and continued to be there for me as I recovered and made my way back into life. While Sarah and Nicole are at Exeter High School with me, Ben and Kendra are at another high school in the town we moved from. But they make a point to visit me often.

  And then there is one other friend I am so thankful for: my dear friend Connor was the first friend I made post–vegetative state and while in a wheelchair. We met the day of the school winter carnival. I was sitting alone as usual, and he sat next to me. Instantly we became friends. It was so wonderful to have someone in high school (in addition to Sarah and Nicole) who didn’t make fun of me and actually gave me the time of day. Connor is amazing and is the definition of a true friend.

  After meeting Connor, it is great to know that not all kids are unkind and that I can make friends despite my wheelchair. When I think about it, I see that there are advantages to being left out. High school is filled with so much drama, and the more friends you have, the more drama you have. I’m thankful I have a handful of dear friends—and that’s enough.

  Besides, I have other plans that don’t involve a super-successful high school social life. I couldn’t care less that I’m not invited to parties or included in social events. I have bigger goals and things I want to achieve. I find my refuge elsewhere: sports.

  Not long after that day my brothers throw me into the water, my arms start regaining movement and strength; although the progression is slow, I start to become more comfortable and at home with the water again. Before school started in September, I decided to ditch the life jacket. At first, I sink, because I’ve always relied on my legs to keep me upright. But once I start using my arms, I don’t even notice that I can’t use my legs. Being in the water and using my arms becomes normal and fluid and peaceful for me. I can unhook my feeding tube and escape my wheelchair. I know my feeding tube and wheelchair are crucial to my survival and my independence, but they also disrupt my inner peace. They get in the way of me feeling “normal” and free. The hour or so that I am swimming, I feel somewhat “normal.” This is important to me, because at school I feel like such an outsider. But in the water, I belong.

  And being in the water ignites something on the inside that has not been ignited in a long time.

  Once an athlete, always an athlete.

  Being an athlete and being incredibly competitive serve me well in my rehabilitation. I channel all I know about being an athlete into surviving and learning to live and function again. But as I progress with my swimming, I start to feel that itch to compete. Getting into competition sounds like a preposterous idea in my head, but in my heart, I know I can do it. And Tom, my hockey coach, encourages me to take that leap. I had started hockey in the fall of this year and was loving every moment of it, continuing to reaffirm to my coach that I wanted to pursue hockey, not swimming. I think mainly because it was going to be so different than I remembered. Being a breaststroker before I got sick, I knew deep down that not being able to kick would prevent me from swimming like I did before. Kind of protecting my heart and starting a new page, staying away from things that reminded me of what was taken away from me. Sled hockey was different than stand-up hockey. It was still hockey, but it didn’t make me feel like I needed my legs or missed them. But swimming, that was a whole different story. I missed my legs constantly. But sometimes you have to push through the pain and the things that remind you of what you lost to gain something even better. So, I kept swimming. I decided to just “go for it.”

  I’ve got nothing to lose and everything to gain.

  I manage to get in touch with a coach who had coached my old swim team before I got sick. I begin training and practicing with his team. Before I know it, I am in my first competition in nearly five years.

  “Take your mark.”

  BEEP!

  Although I am beat by eight-year-olds, I don’t care. I am back to doing what I love—competitive swimming. It’s not easy, but little by little, I become faster and faster and more in tune with the water. But now that I’m swimming again, I realize that I’ve never truly appreciated my legs. I have always been a breaststroker, and not being able to kick makes every stroke—except for freestyle—nearly impossible. Nonetheless, I keep moving forward.

  Just keep swimming.

  Swimming once again becomes my refuge. The world around me seems chaotic and uncertain, but once I get in the water, I can forget it all. I forget the torment of school and the doubters and the hurdles. When I’m swimming, it’s just me and the water, nothing else matters. I have no idea where swimming will take me, I just know that I need to get in the water every day. In many ways, swimming saves me and gives me a place where I belong. Something I had longed for and wished for since I came back.

  As my swimming progresses, my life and my recovery progress as well. I am stronger and more independent, and I can actually maneuver a small, lightweight wheelchair, which makes all the difference. And because my tummy has miraculously healed, I no longer need my feeding tube and can finally eat and digest food normally. For nearly five years, I could not eat—for many reasons—but one of the main reasons was that my tummy completely shut down after the injury my spinal cord sustained from the TM. As a result, I had to be on a twenty-four-hour feeding-tube pump connected directly to my lower intestine. I have been able to keep it secret from most of my friends, but now I’m so excited to have it gone and to eat real food. Another check in the normalcy box!

  For the first time in nearly five years, I’m feeling less like a patient and more like a human. I’ve jumped into school, and I’m redirecting the frustration of kids being cruel into catching up and graduating on time. I know that graduating with my triplet brothers will not be easy, but I believe it will be worth it. I’m playing sled hockey and traveling the country with my daddy, and I’m back in the water.

  Finding my way back.

  I want to compete, and I want to be fast, and I no longer want to do this only “for fun.” So, my next hurdle is finding a swim team I can swim on and events to compete in. The team that I was training with was not a good fit for me and I needed to be challenged. My high school team won’t give me a chance to compete on varsity, even though I have the times needed. And the swim clubs I am trying out with don’t take me seriously. I am the “pity” swimmer in a wheelchair, and many judge me before they know me or my times. I spend most of the time at the pool with my mummy, who continues to encourage me and cheer me on.

  I decide to reach out to my sled hockey coach, Tom Carr, and ask him where I can go with swimming.

  His answer surprises me: “How about the Paralympics?” I know that sled hockey is a part of the winter Paralympics, but I didn’t know a summer Paralympics even existed.

  You mean I can compete with other athletes who can’t kick, like me?

  I begin my research and discover that the summer Games are just a year away, and they will be held in London! My mummy is from the UK, and a majority of my extended family live there. What a reunion and adventure it would be to go there. I’ve always wanted to go. So, I set my mind to going to London and representing my country. A lofty goal, given I have just gotten back into swimming, but I am ready for the challenge. I begin creating workouts and swimming with various teams, but I haven’t yet found a coach who is the right fit. After all, I need someone who believes in achieving the impossible because this seems impossible.

  In the meantime, my family bands together to support my “impossible” dream in the best ways they can. My uncle Russ takes me out to the lake every morning, parks the boat, and floats in the water as a mark
er for me to train. Each lap he cheers for me.

  I finally find a great coach named Nicole with the help of my mummy, and before I know it, we are heading out to my first Paralympic-style meet in western Massachusetts. I am shocked to see people like me, in wheelchairs and dealing with various disabilities, competing in actual events. The meet is fantastic—better than expected—and I am on cloud nine.

  Shortly after the meet, I am greeted by the meet director. He is so excited and happy about how I raced. “What are your plans with swimming?”

  “I want to go to the London 2012 Paralympics next year.”

  I will never forget the bewildered look on his face. “Next year?” he asks.

  “Yes.”

  He is at a loss for words and struggles to find the right thing to say. I just stare at him and smile—I don’t see what’s so confusing. After about a minute, he kneels down, puts his hand on my shoulder, half-smiles, and says, “Sweetie, you don’t stand a chance. Athletes have been training for years to make it to the Games next year. I really don’t think that should be your goal. Maybe you’ll have a chance in the next four years at the next summer Games.”

  What?

  I am crushed, but all I can think in my head is,

  Don’t ‘sweetie’ me, sir.

  I politely smile and leave the pool. I can’t get out of there soon enough! How could someone be so bluntly cruel and just smash a dream without giving any sense of hope or optimism? If my journey has taught me nothing else, it’s taught me the power of hope and optimism. We really don’t know what we’re capable of until we try—and either fail or fly. But you’ll never know until you actually take that leap and go for it and try. I’ve always believed that when you take that leap of faith you’ll either be given the wings to fly or God will catch you.