Victoria Arlen was trapped inside her own body, unable to move, without anyone realizing that she was aware of what was going on around her. She spent four years unable to communicate with her family or doctors and felt terrified about what was happening to her. But then, Arlen found a way to tell the world that she was still in there.
Arlen currently works as a reporter for ESPN. And the 23-year-old is also a former Paralympic swimmer. She took home one gold and three silver medals, in fact, while competing for Team U.S.A. at the London 2012 Paralympic Games.
During the qualifying trials, Arlen broke records. And in 2017 she competed on Dancing With The Stars. Arlen and her dance partner Valentin Chmerkovskiy eventually ended up in fifth place during the 25th season of the celebrity contest.
But Arlen’s medical history makes it hard to believe that she has done any of those things. In fact, experts weren’t even confident that she’d live to see her adult years. Nonetheless, the young woman was determined to prove them wrong – and she did just that.
Arlen was just 11 years old when she realized something wasn’t quite right. She had been a strong swimmer and dancer but suddenly fell ill. And things gradually became worse as she was struck by a series of ailments.
“When I started getting sick, I was just confused. I was kind of asking, ‘Why can’t I get out of bed? Why aren’t my legs moving?’” she told the Today show in April 2018. “I started getting the flu all the time, I was getting pneumonia. I’d have fainting spells, or I was having asthma. My mom would describe it as, ‘The stars were misaligned.’”
Doctors struggled to understand what was going on with Arlen, and her parents were also at a loss. Her mother Jacqueline became devastated as her daughter’s condition worsened. She likened it to watching areas of “a circuit board” get “switched off.”
“First the legs started dragging, and then her legs went, and then her swallowing started to go. And then I noticed she was becoming less and less engaged,” Jacqueline said. “There’s nothing worse in the world than watching your child deteriorate before your eyes, and I was losing her.”
Ultimately, Arlen’s parents were told she had acute disseminated encephalomyelitis and transverse myelitis, which are autoimmune diseases that inflame the spinal cord and brain. Doctors believed that she was not mentally aware of what was going on, and her mother vowed to take care of her for the rest of her life. But what no one knew was that Arlen was actually awake inside her body.
“It really hit me when I was 15, and I was locked in, and I could really understand it fully and put all of the pieces of the puzzle back together… I was terrified,” Arlen said. “Because there’s no worse feeling than being aware but not being able to communicate or give your family any sign that you’re in there.” It took a while for it to fully register that her loved ones didn’t know she was trapped.
The teen had been trying to connect with her parents through speech and eye movements, when it dawned on her that they couldn’t tell she was conscious of her surroundings. And as scary as that realization was, Arlen instead focused on what she had “to be grateful for.” But she nonetheless admits it was extremely difficult to see her family struggle to cope with what was going on.
As Arlen listened, unable to respond, medical professionals prepared her mom for the worst. “We were in the ICU, and the doctor walked in and said, ‘This is what I think she has, and you need to accept the fact that your child is going to die.’ And then he left,” she recalled. Her mother broke down in tears.
Arlen explained that this was the one time when her mom became emotional. And it was also the incident that inspired Arlen to do whatever she could to recover. “That was the moment when I really became determined to survive,” she told Megyn Kelly. “That’s when I was like, ‘I’ll be damned if this is how my story’s going to end.’”
Arlen had been in a vegetative state for four years by the time she was 15. But her mother wouldn’t stop hoping for her daughter’s condition to improve, and the teenager didn’t give up, either. The young girl was having seizures for 20 hours each day at this point, so doctors gave her some sleeping medication. And then, something incredible happened.
Although Arlen didn’t fall asleep, the medication had an effect on her brain – and she suddenly realized that she could now move her eyes. Arlen was desperate to use this chance to lock eyes with her mom and try to communicate. “She noticed that I was fixated on her and I was looking directly at her,” Arlen recalled. “And she walked over, and she said, ‘If you can hear me, can you blink?’” So Arlen blinked again and again.
“That’s what gave my family the sign that I was in there,” Arlen explained. Over the next six months, her recovery continued – but it wasn’t an easy process by any means. She gradually learned how to move parts of her body and to talk. However, Arlen was still in a wheelchair and was informed that she’d be paralyzed forever.
“I was told I would never walk again, but I’m kind of stubborn in that sense,” Arlen explained. And after competing in the Paralympic Games, she proved the doctors wrong and learned how to walk once again. Then, she took things to the next level by competing on Dancing With The Stars.
After Kelly’s interview was posted on YouTube in April 2018, commenters were inspired by Arlen’s courage and positive attitude. “This is such a miracle, and she’s a survivor!!! What a true blessing, that she’s still here. This was such a great interview,” Michael D. Williams III wrote.
Others called Arlen “amazing” and “brave” and praised her mom for never losing hope. “That’s a true mother! What a great example of what it means to not give up on your children,” Mao Lor commented. And YouTube user JalisaMD was also touched by the story, writing, “She just renewed my faith in miracles.”
These days, Arlen says that she’s feeling “great.” And she insists that she’ll never stop being grateful that she made it out of that horrifying situation. “I’m all about faith and gratitude and hope,” she said. “By the grace of God, I am in the best health I’ve ever been in.”