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

by Victoria Arlen

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  For my mummy,

  You truly are the wind beneath my wings.

  Despite insurmountable odds and devastation,

  your support, love, and faith in me and God never wavered.

  You are my hero, always have been and always will be.

  It’s been quite the journey and it’s only just the beginning.

  I love you more than you will ever know.

  Thank you for never giving up on me.

  “Father, forgive them, for they know not what they do.”

  —LUKE 23:34

  FOREWORD

  BY VALENTIN CHMERKOVSKIY

  “You have a very special young woman as your partner this season,” said my executive producers on Dancing with the Stars. “It’s going to be a little different for you, and we’re very excited.” I was about to walk into a small ballroom dance studio in Beverly Hills to meet my Season 25 celebrity partner for the reality TV show where I’m a professional dancer. I had no idea what to expect.

  As much as I love the show and everyone I work with, I also know that Hollywood doesn’t always get “excited” for the same reasons I do. I nervously nodded a simple “awesome” to the producers, but in my head I was asking a million questions. “What do they mean, ‘different’? Different how? What is so different about this partner that I haven’t seen during the twelve seasons I’ve been on the show?” I would quickly find out.

  I walked through the door, stepped onto the wooden parquet of the humble little ole dance studio, and caught my first sight of a beautiful young woman who stood in the center of the room. She was obviously excited with anticipation and glowing with enthusiasm.

  “Hi, I’m Val,” I said, starting things off as simply as I could.

  “I’m Victoria,” she replied.

  “So tell me a little about yourself,” I said. “We’ll be spending quite a bit of time together in the next few months.”

  That was putting it mildly. On DWTS the celebrities and professional partners train almost daily for three months even before the show begins. My style of coaching can be quite intense, with a very challenging rehearsal regimen. Nothing about what was to come would be easy for any celebrity.

  “Well, I’m a Paralympic gold medalist,” she replied, with a mix of pride and humility that was really very touching.

  “Paralympian?!” I thought to myself, more than slightly baffled. Where was the “para”? In front of me stood a perfectly healthy, strong, vibrant girl, no different from any other twenty-three-year-old I’ve danced with before. What I had never seen before were Victoria’s huge, extremely expressive, deep brown eyes—they were really quite exceptional.

  “I don’t mean to come across as rude,” I said, “but why ‘para’?”

  The conversation that ensued and the experience I would go on to share with Victoria Arlen would change my life forever. I soon came to understand what was so special about her. It wasn’t just her ability to rise above any challenge placed in front of her, including the years of paralysis that hit her beginning at age eleven, with loss of speech, loss of hearing, and finally loss of consciousness. What made Victoria special was her response to those early challenges, when someone with a less fierce sense of determination might have been tempted to give up. She never did, and neither did her strong, amazing parents.

  Well, even though she still had not fully recovered feeling in her legs, Victoria had just signed on for yet another challenge, which was learning to do the Argentine tango with me. Over the course of the months we rehearsed and performed together, I discovered the source of this young woman’s strength, which was quite simply her unquenchable love of life. She loved life so much that it amounted to her particular superpower. She simply refused to be defeated, no matter what obstacles were thrown in her way. Victoria’s one-of-a-kind perspective on life taught me the greatest lesson anyone could ever teach someone: “Don’t take a single breath for granted.”

  In this book, you will get to know a girl from an ordinary family who was placed in the most extraordinary circumstances imaginable. Instead of giving up, Victoria, her mother, and her father chose to fight on for dear life, literally. She is not just an American hero for her medals in the Paralympics. She’s a human hero for her triumphs over something that universally unites us, our mortality and the fight for life. There’s no greater example of the human spirit than that, no better demonstration of strength in family and faith. Victoria’s story will inspire you with a sense of purpose, helping to ignite a passion and appreciation for life that you may never have thought possible.

  I’m incredibly grateful to have been Victoria’s partner on DWTS, thankful to her family for sharing her with me, and actually indebted to the whole wide universe for putting us together. Victoria allowed me to be a small part of her incredible story, one that will certainly leave a mark on the world. Reading her story, I think you’ll come to respect, honor, and love this woman just as I did, and cherish the opportunity to get to know her.

  —Valentin Chmerkovskiy

  1

  HOW DID I GET HERE?

  January 2009

  I hear commotion in the darkness. I gasp for air, but I feel like I’m drowning. A strong pressure crushes my chest, forcing my lungs to contract against my will.

  Air!

  I need air!

  I need to breathe!

  Somebody, please help me!

  Machines urgently ping. Panicked voices shout all around me. Suddenly, bright light blinds me as I struggle to grab whatever is down my throat. I realize my arms are strapped down and can’t move. Multiple hands hold down my convulsing body, and my bed is being quickly pushed through a white-walled hallway at an alarmingly fast speed.

  “You are okay, Victoria,” I hear over and over again. I’m confused. All I can think is BREATHE! And then, I plunge again into total darkness.

  • • •

  My eyes open to searing bright light, and I hear a loud, screeching noise. My body begins to shake uncontrollably, and a painful electricity surges through my body, causing it to convulse and thrash about. I see strangers running into the room, yelling. Their voices sound scared; their hands push me down.

  As the seizure subsides, I try to get my bearings.

  Where am I?

  Brightly colored balloons are tied to my bed, and several stuffed animals are around the room. My vision is blurry, but as I focus my eyes, I see cheery cards and posters on the wall, saying, “We love you. Get well. We miss you. Stay strong.”

  Why would anyone say they miss me?

  Where have I been?

  Get well?

  Stay strong?

  What’s wrong with me?

  I feel fine.

  I don’t get it.

  Where am I?

  What is going on?

  Am I in the hospital?

  Why?

  How long have I been out of it?

  I hear my mom in the background. Surely, she can tell me what’s going on. “Mom, Mom!” I shout, but she doesn’t react.

  HELLO!

  Why can’t she hear
me?!

  Can anyone hear me?

  I quickly realize I have no control of my body, not even my eyes. I can see, but only what’s directly in front of me. When I try to sit up, I feel disconnected from my body. I can’t move or make any sound.

  I am literally locked inside my own body.

  This can’t be happening.

  This can’t be happening!

  Help!

  Somebody, please help me!

  My heart races and my head spins. I try to make sense of what’s going on. I have so many questions.

  What year is it?

  I think, 2006? But I’m not certain.

  How long have I been here?

  I hope not long.

  What happened?

  My memory is fuzzy.

  Am I going to be okay?

  I’m not sure.

  I’m overcome with panic. I want to scream for help. I try to calm down, but that only makes things worse. I’m lost and confused. Why won’t someone just please tell me what is going on.

  I’m scared.

  I’m really, really scared.

  I can’t move a single muscle. No matter how hard I try to scream for help, nothing comes out. I want to breathe and scream and speak. I have so many questions, and I have no memory of how I got here.

  I gotta get outta here!

  Help!

  Somebody, help!

  Claustrophobia creeps in, and my panic escalates. I have to find something—anything—to keep my brain sane and ease the panic that’s overtaking me.

  Think, Victoria.

  Wait …

  You can think—

  clear as day.

  My body refuses to function, but my brain is somehow operating normally. Completely normally.

  How can this be?

  My brain.

  My memories.

  My knowledge. It’s all here.

  You’re still here, Victoria.

  You’re still you.

  My mind is the only reassurance and calm I have. It is the only thing I can control. And then it dawns on me that my ability to think is the most important function of all. The thought of literally losing my mind is beyond terrifying. Thankfully, I can think and understand.

  Sanity check …

  Okay …

  My name is Victoria Arlen.

  I am the daughter of Larry and Jacqueline Arlen.

  My brothers are LJ, William, and Cameron.

  I enjoy swimming, dancing, and hockey.

  I love my fluffy dog, Jasmine.

  My favorite color is pink.

  Okay, let’s make it a little more challenging:

  What’s two plus two?

  Four.

  Four times four?

  Sixteen.

  You’re good, Victoria.

  Your brain is okay.

  Thank you, God.

  I have my mind and my memories, and as far as I know, I have my sanity. I’m still here—I remind myself of that over and over again.

  But, how did I get here?

  Nothing comes to mind. I remember an absolutely excruciating head pain, and I remember being rushed into an ambulance, and then everything goes dark. Now, I’m alive and can think. But I have no memory of how I got here or why I can’t move or talk.

  I try so hard to remember.

  Think, Victoria.

  Remember.

  When I try to think back before the headaches and the seizures, all I can remember is being healthy. I’d always been healthy. In fact, I was probably the healthiest of the Arlen bunch (although we were a relatively healthy family). I’d always had a crazy amount of energy and would go and go and go until my mum made me go to bed. I craved adventure and always allowed my imagination to go for miles and miles. I loved running around with my brothers, and I played every sport my parents would allow. There were never enough hours in the day to do all I wanted to do. Even then, I’d wanted to change the world and make a difference.

  How could I lose all of that?

  How could the girl who could do everything not even be able to wiggle a finger?

  I keep forcing myself to think. Since I can’t work any other muscle in my body, I might as well use the one that works, my brain. I remember back to the summer before fifth grade, when I was ten. My mummy took me to the doctor with what seemed to be a bug bite in my left ear. The doctor hadn’t been concerned about it, but then I started getting ear infections, which continued throughout the entire summer. The doctors diagnosed me with swimmer’s ear, but that didn’t make sense because I had swum for years without any problems.

  I remember that I’d developed asthma in the fall. Then, I had several rounds of pneumonia alternating with what the doctor called the “flu.” These episodes often included fainting spells. It seemed I’d have one or two good weeks, but then I’d come down with something.

  I still did well in school and sports, but somehow, as my mummy would say, “it was as if the stars were misaligned.” But no one was too awfully concerned because I always bounced back and went back to my normal routine.

  But about a year later, on April 29, 2006, I do not bounce back …

  2

  IT’S ALL IN YOUR HEAD

  April to July 2006

  Ouch!

  It feels as if a knife is piercing my right side. I try to sit up, but I’m met with excruciating pain, unlike anything I’ve ever felt before. I slowly get out of bed and make my way downstairs. “Mummy, something doesn’t feel right.”

  Assuming it’s another flu-like episode, my mum guides me to the couch and tucks me in. It’s a Sunday. We had just gotten back from a magical Disney trip the day before. All I can think about is going back to school and seeing my friends. I am in fifth grade and almost done with my first year at middle school. The first day back to school from vacation is always fun.

  But instead of going to school the next day, I end up in the emergency room, being poked and prodded and questioned. The needles scare me, and the “juice” (dye) I have to drink for the CT scan makes me vomit. My family has a history of appendicitis, and since the pain is on my right side, it seems the likely cause. After an overnight in the hospital with no reprieve from the pain, doctors decide to remove my appendix. My parents and I hope that this is the fix, so we can go home the next day and resume our happy lives.

  But the pain doesn’t go away, even after the surgery scars are healed. I find myself again in the emergency room, this time at a world-renowned children’s hospital—“best in the world”—an hour away from our home. After a CT scan and blood work, the doctors have no definitive answer other than post-surgical pain. Unconcerned, they send me home.

  It still hurts.

  Two weeks pass, and the pain in my side has gotten increasingly worse. I now have regular flu-like symptoms, and I’m losing weight fast. No matter how much I eat, the weight will not stay on. I was slim to start with, but now, I’m way too skinny. The pain is so bad, I can barely function. I can’t sleep, and I don’t even have the energy to get off the couch. Which is unlike healthy Victoria. I was NEVER on the couch. I can’t go to school or play sports or hang with my friends. I am a prisoner to this suffering, and it is slowly but surely taking over my life.

  The only “relief” the doctors offer is recommendations to see other doctors, who prescribe heavy-duty pain meds and send me on my way. Pain meds don’t help and the reactions to the medications only make it worse.

  Along with the pain comes overwhelming weakness. Getting out of bed and down the stairs is a challenging task. I can remember the days when I ran up and down the stairs; now each step is like climbing a steep mountain. Fighting to stay upright is an all-consuming chore.

  No.

  No.

  No.

  Just when I think the pain in my side can’t get worse, it begins to spread, starting in my toes and slowly working its way up my leg. My right foot has been asleep for two days. I try to walk, but it drags beside me like an anchor. My mum takes me to my prima
ry-care doctor who has known me since birth. She explains that I am still in extreme pain even after having my appendix removed, that I’ve lost a lot of weight, and that now, I’m having trouble walking. The doctor just nods his head and says, “I don’t know. She is a triplet. Maybe she is doing it for attention.” Instead of referring me to a neurologist, he insists that I see a psychologist and “snap out of it.” How could being a triplet cause this? Attention is the last thing I want. Needing “help” frustrates me beyond belief. Besides, what eleven-year-old can make all of this up?

  We’ve all heard someone say, “It’s all in your head.” Most of the time, it’s a lighthearted way to say, “toughen up” or “get a grip.” I never thought it held any serious meaning. But the doctors I see use phrases like that or words like psychosomatic as fancy ways of saying, “You’re doing it for attention” or “We have no idea.” Basically, they don’t believe me.

  I start hearing things like, “The pain you think you feel doesn’t really exist, Victoria. Yes, the reflex in your right leg is gone and you’re having trouble walking, but don’t worry, it’s all in your head. Just snap out of it, and you’ll be okay,” or “You’re not feeling well? You’re a triplet. You just want attention. Nothing seems to be medically wrong. You’re fine.”

  I’m not fine.

  Can somebody help me?

  Or tell me what’s going on?

  Please?

  Please.

  Something is seriously wrong—I know it—but no doctor seems to care. I am fading fast …

  Please.

  Please believe me.

  Please help me.

  I feel that doctor after doctor has failed me. After a visit to a prominent children’s hospital in Massachusetts, it seemed that I had been labeled a “crazy person” and that no doctor would take me seriously.

  But … I’m in pain.

  So much pain.

  Why won’t you listen to me?

  Something is seriously wrong!

  I’m not crazy.

  Please.

  I’m not crazy.

  My family and I don’t know it at the time, but we’ve just begun a long road of misdiagnoses.

  • • •

  It is now June, summer is quickly approaching, and all I want is to play with my friends and finish the school year. I pray every night to be okay and get stronger. I can take the pain—I’ve gotten used to it—but I can’t take the weakness in my legs. Without my legs, I’m quickly losing my independence. I’ve already missed out on so much. I just want to go back to living my life.