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

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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.  (Continue)

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

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


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