This Woman Won a Gold Medal at the Paralympics After Being In a Vegetative State
Victoria Arlen shares how she overcame the impossible and became an inspiration for thousands of people.
Growing up, I was the kid who never got sick. Then, at 11 years old, I was diagnosed with two extremely rare conditions that changed my life forever.
It started with severe pain on the right side of my body. At first, the doctors thought it was my appendix and scheduled me for a surgery to get it removed. Unfortunately, the pain still didn't go away. Within two weeks I'd lost a ton of weight and my legs started to give out. Before we knew it, I also began losing my cognitive function and fine motor skills as well.
By August 2006, everything went dark and I fell into a vegetative state. I wouldn't learn until seven years later that I was suffering from transverse myelitis and acute disseminated encephalomyelitis, two rare autoimmune disorders that caused me to lose my ability to speak, eat, walk and move. (Related: Why Autoimmune Diseases Are On the Rise)
Locked Inside My Own Body
For the next four years, I showed no signs of awareness. But two years in, even though I had no control over my body, I started to gain consciousness. At first, I didn't realize that I was locked in, so I tried communicating, letting everyone know I was there and that I was okay. But eventually, I realized that even though I could hear, see and understand everything going on around me, no one knew I was there.
Usually, when someone is in a vegetative state for more than four weeks, they are expected to stay that way for the rest of their lives. Doctors felt no differently about my situation. They had prepared my family by letting them know that there was little hope of survival, and any kind of recovery was very unlikely.
Once I came to terms with my situation, I knew there were two roads that I could take. I could either continue to feel scared, nervous, angry, and frustrated, which would lead to nothing. Or I could be grateful that I had regained my consciousness and be hopeful for a better tomorrow. Ultimately, that's what I decided to do. I was alive and given my condition, that wasn't something I was going to take for granted. I stayed this way for two more years before things took a turn for the better. (Related: 4 Positive Affirmations That Will Snap You Out of Any Funk)
My doctors prescribed me sleeping pills because I was having recurring seizures and they thought the medication would help me get some rest. While the pills didn't help me sleep, my seizures did stop, and for the first time, I was able to gain control of my eyes. That's when I made eye contact with my mom.
I've always been expressive through my eyes ever since I was a baby. So when I caught my mother's gaze, for the first time she felt like I was there. Excited, she asked me to blink twice if I could hear her and I did, making her realize that I'd been there with her all along. That moment was the start of a very slow and painful recovery.
Learning to Live All Over Again
For the next eight months, I began working with speech therapists, occupational therapists, and physical therapists to slowly regain my mobility. It started with my ability to speak a few words and then I began moving my fingers. From there, I worked on holding my head up and eventually began sitting up on my own with no assistance.
While my upper body was showing some serious signs of improvement, I still couldn't feel my legs and doctors said that I probably wouldn't be able to walk again. That's when I was introduced to my wheelchair and learned how to get in and out of it on my own so that I could be as independent as possible.
As I started to become accustomed to my new physical reality, we decided I needed to make up for all the time that I'd lost. I'd missed five years of school when I was in a vegetative state, so I went back as a freshman in 2010.
Starting high school in a wheelchair was less than ideal, and I was often bullied for my immobility. But rather than letting that get to me, I used it to fuel my drive to get caught up. I started focusing all my time and effort on school and worked as hard and as fast as I could to graduate. It was around this time that I got back in the pool again.
Becoming a Paralympian
Water has always been my happy place, but I had been hesitant to get back in it considering I still couldn't move my legs. Then one day my triplet brothers just grabbed my arms and legs, strapped on a life jacket and jumped in the pool with me. I realized that it was nothing to be afraid of.
Over time, the water became extremely therapeutic for me. It was the only time I wasn't hooked up to my feeding tube or strapped into a wheelchair. I could just be free and felt a sense of normalcy that I hadn't felt in a really long time.
Even still, competing was never on my radar. I entered a couple meets just for fun, and I'd get beat by 8-year-olds. But I've always been super competitive, and losing to a bunch of kids was just not an option. So I started swimming with a goal: to make it to the 2012 London Paralympics. A lofty goal, I know, but considering I went from being in a vegetative state to swimming laps without using my legs, I truly believed that anything was possible. (Related: Meet Melissa Stockwell, War Veteran Turned Paralympian)
Fast forward two years and one incredible coach later, and I was in London. At the Paralympics, I won three silver medals and a gold medal in the 100-meter freestyle, which gained a lot of media attention and pushed me into the spotlight. (Related: I'm an Amputee and Trainer But Didn't Set Foot In the Gym Until I was 36)
From there, I started doing appearances, speaking about my recovery, and eventually landed at the doors of ESPN where at 21 years old, I was hired as one of their youngest reporters. Today, I work as a host and reporter for programs and events like SportsCenter and the X Games.
From Walking to Dancing
For the first time in a long time, life was on the up and up, but there was just one thing missing. I still couldn't walk. After doing a ton of research, my family and I came across Project Walk, a paralysis recovery center that was the first to have faith in me.
So I decided to give it my all and started working with them for four to five hours a day, every day. I also started diving into my nutrition and began using food as a way to fuel my body and make it stronger.
After thousands of hours of intense therapy, in 2015, for the first time in eight years, I felt a flicker in my right leg and started taking steps. By 2016 I was walking again even though I still couldn't feel anything from the waist down.
Then, right as I thought life couldn't get any better, I was approached to participate in Dancing with the Stars last fall, which was a dream come true.
Ever since I was little, I'd told my mom that I wanted to be on the show. Now the opportunity was here, but considering I couldn't feel my legs, learning how to dance seemed completely impossible. (Related: I Became a Professional Dancer After a Car Crash Left Me Paralyzed)
But I signed on and started working with Val Chmerkovskiy, my pro dancing partner. Together we came up with a system where he'd either tap me or say keywords that would help guide me through the moves at which point I was able to do the dances in my sleep.
The crazy thing is that thanks to dancing, I actually started walking better and was able to coordinate my movements more seamlessly. Even though I just made it to the semifinals, DWTS really helped me gain more perspective and made me realize that truly anything is possible if you just put your mind to it.
Learning to Accept My Body
My body has achieved the impossible, but even still, I look at my scars and am reminded of what I've been through, which at times, can be overwhelming. Recently, I was part of Jockey's new campaign called #ShowEm-and it was the first time I really accepted and appreciated my body and the person I'd become.
For years, I have been so self-conscious about my legs because they've been so atrophied. In fact, I used to make an effort to keep them covered because they didn't have any muscle. The scar on my stomach from my feeding tube has always bothered me as well, and I made efforts to hide it.
But being a part of this campaign really brought things into focus and helped me nurture a whole new appreciation for the skin I'm in. It hit me that technically, I shouldn't be here. I should be 6 feet under, and I've been told that innumerable times by experts. So I started looking at my body for everything it's given me and not what it's denied me.
Today my body is strong and has overcome unimaginable obstacles. Yes, my legs might not be perfect, but the fact that they've been given the ability to walk and move again is something I'll never take for granted. Yes, my scar will never go away, but I've learned to embrace it because it's the only thing that kept me alive for all those years.
Looking forward, I hope to inspire people to never take their bodies for granted and to be thankful for the ability to move. You only get one body so the least you can do is trust it, appreciate it, and give it the love and respect it deserves.