The Story of Victoria Arlen, Girl Who Was Trapped in Her Body for Years

May 21, 2019 Updated: July 19, 2019

An ESPN personality who appeared on “Dancing With The Stars” has had to overcome a lot. Instead of doing the normal things an 11-year-old does, she was trapped in her own body for years.

Victoria Arlen, who was born a triplet along with her two other brothers, became vegetative at age 11 and was fighting for her life the whole time.

“I was the kid that never got sick,” she said before she became “locked in,” according to CNN. “The likelihood of me being the one to go through all that I went through was not even on anyone’s radar.”

Arlen had pain on her right side before losing a significant amount of weight. Then, her legs stopped working along with her motor skills. Later, her cognitive function ceased.

The vegetative state lasted four years, she said, saying that her family seemingly didn’t know she was there.

She said that in 2006, “I was kind of like a ghost living in this shell of a human being.” Several years later, in January 2009, she became aware. In those several years, “everything” was “dark” and she couldn’t remember anything.

When she woke up, she found herself inside a body that couldn’t move.

“It took three years for doctors to diagnose me with two equally rare conditions: Transverse Myelitis and Acute Disseminated Encephalomyelitis, autoimmune disorders that caused swelling in my brain and spinal cord. I’ve since learned that, had my doctors diagnosed me correctly in 2006, a steroid injection could have prevented all of this. But at the time of my diagnosis, they offered my family little hope. They told them I would be a vegetable for the rest of my life. I heard those conversations,” she wrote for ESPN.

“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 told CNN.

Arlen said she could hear conversations between doctors and her family, but she couldn’t respond in any way.

“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,” CNN quoted her as saying.

But the young woman said she didn’t give up.

“I had a great life and a family I really wanted to see [and] I decided that I was going to fight every single day,” she wrote for Elle. “I created a really hefty bucket list and I spent a lot of my time preparing for the moment I would break free and be ready to go and make a difference. I made a promise to God and said ‘If you give me a second chance, I will use my voice to change the world and I won’t waste a single moment.’ Every day is such a blessing and I didn’t want to waste it.”

To occupy her time, she wrote screenplays in her head, practiced her times tables, and listened to the television.

“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 said.

According to an article she wrote for Elle, Arlen said she suffered 20 seizures per day and wasn’t sleeping. Doctors gave her a drug to make her sleep, but it somehow sent a signal to her body to wake up.

“I had this moment where I realized I could blink, and I had eye contact,” she said.

Arlen said her mother noticed something 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,” she said.

After making eye contact with her mother in December 2009, she slowly began to recover.

“Raw sounds became words, became sentences. A twitch of my index finger became the wave of my hand. The ability to swallow pudding eventually led to me mowing on a steak,” she told ESPN.

For her recovery, after several years, Arlen said she had to re-learn simple tasks such as wiggling her fingers. She also had to work with speech therapists, occupational therapists, and physical therapists.

She was told that she would likely be confined to a wheelchair. However, she also able to overcome that as well.

“In 2016 Victoria’s endless hard work, training, determination and perseverance delivered results when she got out of her wheelchair and began walking on her own despite the lack of feeling in her legs,” according to her website.

Later, doctors found that she had two autoimmune diseases that caused severe inflammation in her brain and spinal cord, leading to the vegetative state, the Daily Mail noted.

Victoria Arlen won a gold medal in 2012. (Photo by Clive Rose/Getty Images)

The rest is history: She competed in the Paralympic Games and won a gold medal, became an ESPN host and later appeared on “Dancing with the Stars,” making it to the semifinals in 2017. She also released a book called “Locked In” in 2018.

“I cannot feel my legs at all,” she was quoted by CNN as saying. “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.”

Of the challenges she faced, “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.”