What it's like be 'locked in' your own body: Victoria Arlen on her miraculous journey from vegetative state to the Paralympics and 'DWTS'

Victoria Arlen is a fighter.

The on-air personality for ESPN, gold-medal Paralympian swimmer, and author of the new book Locked In, has overcome seemingly impossible odds after a health scare that could have ended her life.

At 11 years old, Arlen, an active kid full of personality, was suddenly struck by two rare neurological conditions, transverse myelitis and acute disseminated encephalomyelitis, which caused inflammation in her brain and spinal cord and left her unable to speak or walk. “I was in a vegetative state for four years,” she tells Yahoo Lifestyle.

“I was locked in,” she says. “So I could hear and see. I just had no way of moving or communicating or letting anyone know that I was in there.”

From her hospital bed, Arlen could hear her own doctors speaking with her family and being written off as a “lost cause,” she says. “I had to become pretty stubborn to prove them wrong.”

But her situation was grave enough that she also realized she might not make it. “I wrestled with the thought of dying every day, and so I had to make a conscious decision to be grateful for the day I’ve been given, for the moment I’ve been given,” she says. “I just need to be grateful for the fact that I’m alive right now.”

She says her faith in there being a bigger plan for her and having hope kept her going. “I realized very early on that I hadn’t really fully lived yet,” she says. “So I was not going to let my story end like this when I really never even got a chance for it to get started.”

Having her family’s unwavering support was also critical to Arlen’s recovery. “They were being told to kind of give up and move on with their lives, and they refused to do so,” she says. “And so their fight and their willingness to keep believing and supporting me and loving me was the wind beneath my wings.”

Although Arlen couldn’t move on her own, she desperately wanted to give her family a sign that she was aware of her surroundings. When she was 15 — after 4 years of living in a vegetative state — she somehow managed to get control of her eye movements.

When Arlen’s mom walked into her hospital room one day, Arlen tracked her mom with her eyes as she moved, which surprised her mom and made her realize that her daughter may have been alert the entire time.

Like a scene out of a movie, Arlen’s mom asked her daughter to blink if she could hear, and Arlen was able to. “It’s single-handedly the most powerful moment I have ever shared with anyone,” Arlen says.

The simple act of blinking let Arlen’s family know she was there, and she was fighting.

From there, Arlen progressed, going from blinking as a way of communicating to eventually signing when she developed hand control and then using communication boards.

While in her vegetative state, Arlen didn’t have a clear concept that four years had actually passed. When she was told, she says she felt a sense of “panic [from] missing all these years of my life.” She adds, “I really tried to not focus on how much time had passed because I could drive myself crazy with that.”

Arlen, who sustained severe permanent damage to her spinal cord that left her paralyzed from the waist down, had to relearn how to speak, eat, and move again. As her strength increased, her family encouraged her to do more and push herself. Although Arlen had been an avid swimmer and “water baby” before getting sick, she was now petrified of the water. “The thought of going in a pool where my legs didn’t work and I didn’t have full trunk support terrified me.”

But her brothers, William and Cameron, decided they would take her swimming, strapping a life jacket on her and jumping into the water with her to help Arlen get over that fear. They did this daily, and eventually, she became strong enough in the pool that she decided to get into competitive swimming.

It was humbling at first, as the teenage Arlen was beaten by 8-year-olds. But she didn’t give up. She says that when she was in the pool, no one knew the wheelchair off to the side belonged to her. It was a motivating factor for the athlete.

Arlen kept swimming, found a coach, and realized she had an opportunity to use her swimming competitions as a platform to inspire others. She eventually made it to the 2012 Summer Paralympics in London and won three silver medals for Team USA. Then, on the last night of the competition, she thought, “I have nothing to lose and everything to gain.” So she swam for herself, singing One Republic’s “Good Life” in her head — her go-to song whenever she does anything that scares her — and she won gold in the 100-meter freestyle.

“The day that I won gold at the Paralympics was almost two years to the day of my brothers throwing me in the water,” she says.

She says it was all a “blur.” But Arlen remembers standing on the podium, and when the officials put the gold medal around her neck, she looked up and saw her family crying. “It still makes me choke up that they were crying tears of joy,” she says. “And it was so powerful because for the first time in this whole journey, we weren’t crying tears of pain, tears of fear. We were crying tears of joy and we could celebrate. We could finally be like, ‘We’re OK.’ Things are going to be OK.”

Never one to rest on her laurels, Arlen continued to push herself and would not give up her dream of walking one day. “I’d done everything my doctors said I wouldn’t be able to do,” she says. With that goal in mind, her parents discovered Project Walk in 2013, an activity-based therapy program that looked promising, but it was only on the West Coast, thousands of miles from where Arlen and her family lived. Undaunted, her parents decided to open the first Project Walk on the East Coast — in Boston — to help not only Arlen but others like her.

Her trainer in the recovery program pushed her for six hours a day, five to six days a week. “You can’t achieve the impossible without putting in an ‘impossible’ amount of work,” she says.

In 2015, Arlen started working for ESPN, and during that time, she went from being in a wheelchair to standing up while using crutches. “It took me about two years of time, energy, and focus before I took my first step,” she says.

Arlen stayed focused on her goal of not only walking on her own but also doing it in high heels, no less. “We put a plaque up at our Project Walk [that read]: ‘Dedicated to our sweet girl Victoria. May your dream of walking in 6-inch high heels come true.’” Arlen says that was the “ultimate achievement, as silly as that sounds.”

While walking in heels is still a work in progress for her, Arlen went on to not only walk but also dance in heels when she joined the cast of Dancing With the Stars in 2017, where she partnered with Valentin Chmerkovskiy.

What’s incredible is that Arlen was able to dance, despite having no sensation in her legs. “It’s really hard to describe what it means,” she says. “There’s just nothing there. I learned how to walk without feeling my legs.”

For most people, walking is something they do without thinking, but for Arlen it’s a conscious and deliberate act. “So in my head when I’m walking, it’s going ‘right, left, right, left turn, step,’ so I have to constantly think about it.”

As far as how she was able to dance, it’s a mystery to her too. “I don’t know how I do it. I just do,” she says. For Arlen, being on the show meant achieving yet another goal of hers: to show people that nothing is impossible.

Mission accomplished.

Read more from Yahoo Lifestyle:

• This 17-year-old is riding his bike across the country to raise awareness of the disease that temporarily paralyzes him

• Here’s exactly how medical marijuana works in the body

• ‘MS messed with the wrong girl,’ says advocate who climbed 66 flights of stairs in fundraising victory

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