They stare at me and talk to me in a tone that indicates they think I’m hiding something. But there is nothing to hide. My medical records confirm my physical impairments. If anything, I am more impaired than they realize. I do a bench test, pool test, bench test again, and coordination test. One classifier even says, “I’m not sure why we are doing this; she is clearly disabled.”
Please, just let me swim.
Please.
After what seems like an eternity of unnecessary questions, they conclude with, “You belong in the S6 category.”
Without an apology for the insanely long and exhausting testing, they leave. To be honest, at this point I don’t even care. I just want to compete.
10
SPLASH!
September 2012 to June 2013
“Take your mark …”
BEEP!
It’s September 1, 2012, and more than twenty thousand spectators are in the crowd that day in London, with millions more from around the world tuned in. It is my first official day of competition, and I am swimming the 400-meter freestyle. As the current world record holder and the focus of all the classification drama, I am subject to lots of cameras in my face as I make my way to the starting block. The aquatic stadium booms with noise, and I nearly have a heart attack as I enter the pool. Everyone wants to see the “battle of the teenagers.” I am terrified. And as I hit the water, I feel my entire body tremble uncontrollably.
You can do this, Victoria.
One stroke.
Two strokes.
Three strokes.
Breathe.
To keep my nerves at bay, I continue to count my strokes and tune out the audience. I have the lead, but I can tell that Ellie is coming up behind me. I quickly realize I have gone out way too fast due to a massive adrenaline rush. My arms are toast on the final fifty, and I am tapping into my reserve. Ellie is a little person, which means that she has complete use of both her arms and her legs, versus me having only the use of my arms. I never have understood how it is fair for us to compete against each other, but I guess the thought is that her short stature is somewhat similar to my not having use of my lower half.
I can hear the crowd getting louder and louder, and sure enough, Ellie has turned on her legs and is charging my way. I put my head down and continue to swim, but deep down I know that not having my legs to propel me on that last fifty is a major disadvantage.
Though Ellie wins the gold in this race, I am quite all right with my silver medal. I can’t help but think about how just two years prior I was barely holding my head up and my brothers were holding me in the water. I could barely move and now I’m here with a shiny silver medal. And honestly, I’m pretty happy that I didn’t poop my suit out of fear.
Wow.
This crowd, this pool, I’m here.
I made it.
Even with all I’ve been through, I feel like I’m glowing. It just doesn’t get any better than winning a medal. I can feel myself starting to relax and actually enjoy the Games. I realize that this race had been more than a race for me. It was about another mountain I had to climb, and it was about overcoming the fear and anxiety that had been drilled into my head by the IPC drama and classification issues.
Finally, I could just swim.
The next few days are a blur of practicing, racing, and cheering my teammates on. I go on to receive two more silver medals in the 50 freestyle and 4 by 100 freestyle relay—an event that I find out on the day of the final that I will be competing in. I have not been in a relay since I was eleven years old, and starting from my bum on the blocks is a whole different ball game than being on my feet. Nonetheless, I dive in as the second leg of the relay, and I am the only swimmer who can’t kick. I am a last-minute addition to the relay due to my fast times in my previous race. We haven’t competed together before and we are up against some pretty fast swimmers from other countries. But despite the odds, we win silver and beat the UK, which is a major upset.
All seems well until my second-to-last race: the 100 breaststroke.
Something’s not right.
Growing up primarily as a breaststroker, my coaches have always encouraged me to pursue and continue this stroke. It is beyond hard to feel the fluidity without kicking. But I keep working at it. My hard work pays off, and by the time I’m in London, I am second in the world in my classification for the 100-meter breaststroke. I am a medal contender for this event.
The pressure is on.
The woman in first place is nearly twice my age and is a “complete beast,” meaning she had the record by almost a minute, and nobody came near her. I never felt super strong and confident in any breaststroke events, and the only reason aside from my coaches that I swim it, is that it is the first event I broke an American record in. It has a special place in my heart. On this particular day, I am not feeling right at all. I have been struggling with debilitating muscle spasms, and the breaststroke seems to induce them whenever I swim it. Most athletes know when they have it or do not have it. It’s an instinct, a feeling when you just know you got this.
I don’t got this.
As soon as I dive in, I know I don’t have it. My body tenses up, and I find myself trying harder than ever to get to the wall. To the spectators I may seem fine, but those closest to me know I’m not. Despite the severe muscle spasms, I manage to finish the race and not drown. As my coach pulls me out of the water, he can see that my arms are stiff as a board and that my hands are clenched into fists. I think my eyes speak even louder than my body, and tears begin to run down my face uncontrollably.
During the Games, participants are assigned a different Team USA coach for each event. There is no coincidence that Coach Tom Franke is coaching me today. Coach Tom Franke has already taught me so much about God and having faith and trusting, and he was an incredible help during the classification fiasco. After Coach Tom Franke pulls me out of the water and gets me into my wheelchair, he wraps a towel around me and rushes me away from the yelling reporters and cameras. He acts as a human shield, so the media can’t see what a hot mess I am—spasming and crying. They have already said enough about me and offered one too many opinions and comments. Coach Tom Franke finds a quiet space and kneels down in front of me. I can barely speak between sobs. I didn’t make the final; I won’t be winning a medal and am devastated. For any athlete, defeat is inevitable and heartbreaking. But when it is on the world stage, when everyone is watching, it is even more devastating. Not making it to the finals when I was supposed to medal is a tough pill to swallow.
“I, I, I, let everyone down. I’m so sorry.”
He looks at me and shakes his head. “You have not let anyone down, Victoria, this was not your fault. It’s been a long week, and today wasn’t your day. But guess what?”
“What?”
“You now have two full days to rest and get ready for your next race, which is your race: the one hundred freestyle.” Coach Tom Franke is right. Deep down I know that there is a reason for this. I know I don’t have a chance to win gold in the breaststroke, but I do have a chance to win the 100 freestyle. There is definitely something to be said about having two full days to rest and prepare. The last week was so stressful and chaotic that I really haven’t had a lot of time to prepare for my races. I have yet to arrive to a race in the right mind-set because of all the chaos and noise of the media and IPC classification issues.
So, in many ways, this loss is a gift from God. It is not a setback but instead a setup for a greater comeback. That is something I learned from Joel Osteen, one of my favorite Christian authors. Finally, I will have some peace and quiet and time to get in my zone. I take this time to also count my blessings and remember why I love to swim. I don’t swim for sponsors like some do. I swim for God, my family, and especially for my grandma, who managed to recover from major surgery to be here in London to watch me. She’s believed in me from the very beginning and has always encouraged me, even when I was deathly ill. It is for these reasons that I am h
ere and why I am ready to shine.
It’s MY time.
I’ve always been nervous and excited on race days. I go over my race and anxiously await my time to swim. I nervously pack and then repack my swim bag and pace around in my wheelchair. But this day is different. I wake up not thinking about my race at all. I think about how beautiful it is outside and how excited I am to be in the Olympic Village. I hold on to my Team USA swim cap and remember being a little girl and dreaming of having a Team USA swim cap with “Arlen” on the side. I did it. I am here, and for the first time in nearly two weeks, it all sinks in. I am past the heartbreak and drama and chaos that have shadowed my life and swimming and the Games. For the first time, I feel how I think all the other athletes are feeling.
Excited.
Amazed.
I can finally say I made it.
I know this day is different from all the others because I am so relaxed and calm and excited. The lightness and joy that I’ve been missing ever since I touched down in London have now returned. I am ready, more ready than I have ever felt before.
This is MY time.
I feel a powerful confidence that can be credited only to God. I know deep down that this race is going to be different. In my two days off, I had managed to meet with the team’s sports psychologist (which was a game changer), and I also took some much-needed time to be quiet and pray. Even during some of my toughest battles in this journey, I have found peace in God. Trusting, believing, and handing it over to Him have helped me survive and get to this point.
Despite being incredibly superstitious, I have a whole new approach and focus for my race. Aside from my chocolate chip cookie dough PowerBar, blue Gatorade, lucky goggles, race suit, and replaying the race in my mind, I now have a new addition to my routine. I break the race down into a four-point checklist: start, break out, turn, and finish. That is all I need to focus on.
“Take your mark …”
BEEP!
Within seconds, I am in the water. Checklist time.
Start … check.
As soon as I reach the surface, I begin to move my arms as quickly and efficiently as possible, grabbing for as much water possible with each stroke.
Break out … check.
Before I know it, I’m at the wall. With the 100 free, the turn is the most crucial part in maintaining, gaining, or even losing the lead. Ellie and the other swimmers are trailing behind, and one swimmer from Germany is almost neck-and-neck with me. This turn needs to be perfect.
Turn … check.
This is it, this is my moment. All those tears and all that heartbreak fuel me and ignite a fire within that had been lost many years ago.
Come on, Victoria.
Unlike any of my other races in London, where I could hear the crowd and was entirely aware of the swimmers around me, this time it’s as if I’m in another place. Part of my routine—and probably one of the key things that helps me stay focused—is singing the song “Good Life” by OneRepublic. OneRepublic is my favorite band, and that song was stuck in my head during my first world-record-breaking race. Needless to say, it has stayed with me since. And it resonates in this current situation and allows me to tune out the craziness of the Games.
As I approach the 25-meter mark, in my head, I hear these words from the song:
“This could really be a good life,
A good, good life.”
I am overwhelmed with excitement, and it takes every muscle in my body not to smile as I glide through the water. I think about the first time I hit the water two years ago and how scared I was and how my brother William held on to me and encouraged me not to be afraid.
Don’t be afraid.
Keep swimming.
Just keep swimming.
You have nothing to lose but everything to gain.
In this very moment—regardless of the outcome of this race—I know that I did it. I made it through. And not only have I survived, I have thrived. Our family has come through one of the toughest and most incredibly heartbreaking situations, and here we all are.
Thank you, God.
I’m so entrenched in gratitude and my song that I don’t even realize that I have gained a significant lead and am about a body length ahead of all the other swimmers.
Head down and breathe, Victoria.
You can do this.
“Let’s watch the clock; it is a new world record. Victoria Arlen has just won GOLD!”
In one minute and thirteen seconds, I touch the wall first in a world-record time. For a brief moment, it feels as if everything is standing still—the crowd, the water, and I seem to freeze. Quickly I snap back to reality and realize what I have just accomplished.
I did it.
I really did it.
I won.
I had gotten used to coming in second in last week’s events. So, seeing my name on the scoreboard with a “1” and a “WR” (world record) shocks me, and I feel so emotional. I look for my family in the crowd; they are high up in the stands, and I know they must be in awe and shock, too. This moment is for them; this whole race is for them. All the tears we’ve cried and the pain we’ve endured has paid off in this very moment. No words can come even close to describing how I feel in this moment and in the moments to come.
Reality hits when I get my medal and see the American flag rise and hear the anthem play. For the first time in this journey, I am ahead of the game. I have spent so much time “catching up.” Until this moment, I hadn’t known what it is like to win and be ahead. This moment changes everything for me.
I even get a compliment from Coach John, who is watching in the States. “Good job, kid, that was a perfect race.” And that is icing on the cake. Before connecting with my family, I go back to my space in the locker room. The place where I’d cried one of my most painful cries, and the place where I prayed so passionately. I take a moment, hold my medal, and close my eyes.
Thank you, God.
This one’s for you.
You’re the true gold medalist.
People think that the gold medal is the best part of the Games. Now, don’t get me wrong; it’s incredible. But an even better moment is seeing the people you love the most afterward. The glory is fun, the anthem is amazing, the crowds are electric. But when you see your daddy, mummy, brothers, aunties, grandparents, and friends—that’s a whole other level of awesome. The people you love the most, who fought so hard for you to achieve your dream, who believed in you … this is their glory. We had gone through hell, but now we have made it to our happy place. Tears of joy instead of pain, embraces of congrats and joy instead of embraces of fear that this might be the last time. Now it was time to start living.
You’re back, Victoria.
Time to live.
• • •
The next few months—from October to May—are a blur of appearances and media obligations, learning to drive with hand controls, as well as returning to school. I am in my senior year, and all of a sudden, the kids who made fun of me and treated me terribly want to be my friends. Apparently, a gold medal makes a person way cooler.
For the first time since I was eleven, I am treated “normal” at school. Although it’s crazy that I had to get a gold medal to be accepted, I am incredibly thankful to have my senior year (despite the newfound fame and craziness) be somewhat normal. Then again, my “normal” is not most people’s normal.
Class of 2013:
Cameron Arlen.
Victoria Arlen.
William Arlen.
The gold medal was amazing, but graduating on time and with my triplet brothers feels just as amazing. I missed sixth grade through my freshman year of high school, so simply getting back to school has been overwhelming—with so many odds against me and mountains to climb. But thanks to my family, friends, a handful of teachers, and a kick-butt case manager and guidance counselor, I was actually able to catch up.
Many of the teachers who doubted me (there were a lot of them) just didn’t understand w
hy I was racing to make up five years in three years. But from the moment I realized I was locked in, I felt left behind. My family was there for me and never “left me behind,” but life went on for them. So, when I came back, I didn’t just want to go with the flow, I wanted to catch up on all that I had lost. I didn’t want to sit on the sidelines, I wanted to get back in the game.
But there is still so much I don’t understand, and in time will have to slow down to figure out.
11
THIS COULD HAVE BEEN AVOIDED
June 2013
Why?
One question has plagued my brain since the first day I felt that intense stabbing pain on my right side.
WHY?
No doctor or specialist has ever given me a straight answer to this question. They know that my paralysis is from the transverse myelitis, but none of them can tell me why I went into a vegetative state. My state was labeled as an “encephalitis of unknown origin.” Since I woke up, I live every day with the fear of relapsing and the curiosity of “Why?” Although I have made almost a complete recovery aside from being paralyzed from the waist down, I cannot shake the anxiety about the unknown.
Why has this happened to me?
What exactly happened to me?
Will it happen again?
In search of answers, I make an appointment with one of the top TM doctors in the world at Johns Hopkins Hospital, in Baltimore, Maryland. Now, I’m not the biggest fan of doctors, and so making this appointment with a specialist is a big step for me. My mummy and grandma accompany me, but I decide that I need to go into the exam room alone. The specialist is incredibly kind, and I instantly like and trust him. He listens carefully to my account of what’s happened to me, and he pulls up my old brain scans. I wait to hear the same script that every other “specialist” has given me.
Never in a million years do I expect what he actually says: “You had ADEM, which stands for acute disseminated encephalomyelitis. You were a textbook case.” He goes on to explain that ADEM is part of the TM family and that the combination of the two is what nearly killed me. The damage on my brain and spine scans is clear as day. I am relieved to have an answer and to finally know exactly what happened to me. Each of these conditions is rare, and the combination of the two is even rarer.
Locked In: The Will to Survive and the Resolve to Live Page 10
