On the surface, Victoria Arlen seems to have it all.
The vibrant 23-year-old is one of the youngest TV hosts at ESPN. She’s a gold-medal swimmer. And she reached her dream of competing on “Dancing With The Stars” this past fall.
But behind her bright smile is a tragic journey: At 11 years old, Arlen was in a vegetative state, fighting for her life.
“I was the kid that never got sick,” she said. “The likelihood of me being the one to go through all that I went through was not even on anyone’s radar.”
It started with severe pain on her right side. Doctors removed her appendix. Within two weeks of surgery, Arlen lost a significant amount of weight, and the pain didn’t go away.
Then, her legs began to give out, along with her cognitive function and fine motor skills. “How I describe it is like a circuit breaker: Quickly, all the switches are being shut off.”
Doctors didn’t know how to help her. It would take seven years to get a diagnosis: transverse myelitis and acute disseminated encephalomyelitis, two rare autoimmune disorders that caused swelling in her brain and spinal cord.
Locked in
“I was kind of like a ghost living in this shell of a human being,” she said. “The lights go out August of 2006 for me, as far as memory goes. And then it was January of 2009, when all of a sudden, I’m aware.”
But Arlen was locked in. She woke up inside a body that could not move.
“I’m thinking I’m having a full-on conversation, realizing I can’t move my eyes, and I can’t move my head. And no one’s responding to me.”
She heard frightening conversations between the doctors and her family.
“The doctors were pretty much like, this was it. I wasn’t going to make it. And if I did make it, I’d probably be a vegetable the rest of my life,” she said.
Her parents set up a hospital room for her in their home in New Hampshire. Arlen never gave up hope.
“I was constantly fighting this pull to just give up,” she said. “But I had so much I wanted to live for.”
To keep her mind occupied, she wrote screenplays in her head, practiced her times tables and listened to “Good Morning America.”
“I paid attention because I was convinced that when I came back, I didn’t want to be left out. … I was going from 11 to 15 relatively overnight.”
She was having seizures up to 22 hours a day. One of the doctors prescribed her a sleeping pill. It didn’t make her sleep, but it calmed her body enough for her to send a signal.
“I had this moment where I realized I could blink, and I had eye contact,” she said.
Her mom walked into the room and noticed something was different.
“She’s like, ‘If you can hear me, can you blink? Can you blink twice?’ And I was like this crazy blinker. And she was like, ‘Oh, my gosh! She’s in there!’ And my family realized I’d been in there the whole time.”
Fighting her way back
Arlen began her long, arduous journey to recovery. She started working with speech therapists, occupational therapists and physical therapists.
“I went into fight mode,” she said. “Slowly, I could say a few words and some more words. And I just kept going from there.”
Everything started to come back, except for her legs. “I was told that I would be in a wheelchair for the rest of my life.”
After missing five years of school, Arlen went back as a freshman in 2010. After all she had been through, she was bullied by her peers for being in a wheelchair.
But that only fueled her passion to make up for all that she had lost.
“I just dove into my studies and worked my butt off to be able to graduate on time,” she said.
Going for gold
Arlen also got back in the swimming pool for the first time since she was sick.
“I grew up a swimmer. I didn’t think I could swim without the use of my legs. My triplet brothers … they grabbed my arms, grabbed my legs, strapped on a life jacket and jumped in the pool with me.”
She learned how to swim again, found a coach and set her sights on the London 2012 Paralympic Games.
“Two years later, I was in London,” she said. “I won three silver medals. And then winning that gold medal (in the 100-meter freestyle) on the final night of competition was kind of the first time that we all cried happy tears.”
Bringing home the gold and sharing her story thrust her into the spotlight.
“I started traveling and speaking and doing appearances and then eventually landing at the doors of ESPN and finding a new calling,” she said.
At 21 years old, she became one of ESPN’s youngest regular reporters. Now, she works as a host and a reporter for programs and events like SportsCenter and the X Games.
One small step
Despite her successes, Arlen struggled with the idea that she would never walk again — until 2013, when she discovered a paralysis recovery center called Project Walk.
“It was the first place that people were like, ‘We don’t know what you’re capable of. But we’re going to try.’ … I just went at it four to five hours a day with a trainer and just kept pushing,” she said.
After thousands of hours of intense therapy, she finally got a flicker, a small movement in her right leg, and took her first step. By April 2016, she was walking again despite having no feeling in her legs.
“I had spent almost a decade in a wheelchair, and now I was on my feet.”
Leap of faith
When “Dancing With the Stars” producers cast Arlen in season 25 last fall, it was a dream come true.
Arlen told her mom when she was little that she wanted to be on the show one day. But she had another hurdle to overcome: learning how to dance.
“I cannot feel my legs at all,” she said. “Val (Chmerkovskiy, her pro dance partner) and I, we created a system. Whether he was tapping me or saying key words and just repetition, to the point that I could do it in my sleep.”
She made it all the way to the semifinals, living a life she once dreamed of in her hospital bed.
“I learned early on that extraordinary challenges lead to extraordinary victories. Every time we stepped in the studio, it was like we were just continuing to redefine what was possible.”
Now, Arlen has set her sights even higher.
She has a book coming out in August titled “Locked In.” She also just launched Victoria’s Victory Foundation to help other people overcome obstacles through grants and scholarships.
“I never in a million years imagined any of this,” she said. “The big thing for me is just continuing to be a beacon of hope. And showing people that nothing is impossible.”
