Trapped in Her Paralyzed Body: How DWTS' Victoria Arlen Survived Two Years Conscious While Unable to Move
“I kept reminding myself of what was good — and that I was still there,” Arlen tells PEOPLE
“I never got sick,” the ESPN personality and Dancing with the Stars contestant, 23, says in the current issue of PEOPLE of growing up in New Hampshire playing hockey and swimming with her three brothers.
But around her 11th birthday, Arlen began getting frequent colds and flus. Doctors were perplexed as her health deteriorated and by July 2006 she began feeling numbness in her feet. Two weeks later she was hospitalized as she lost mobility and cognitive function.
“My nerves were dying,” she says. “I literally watched as my body shut down.”
She would eventually be diagnosed with transverse myelitis and acute disseminated encephalomyelitis (two rare autoimmune conditions that cause inflammation of the spinal cord and brain), but at the time doctors, were unable to diagnose Arlen and advised her parents to take her home. Her family moved a hospital bed into the ground floor of their two-story house.
“I never gave up hope that she would fully recover,” says her mom Jacquelyn.
But Arlen has no memory of the next two years.
Towards the end of 2008 she regained some cognitive function, but there were still long periods of time she remained completely paralyzed and suffered severe seizures as frequently as every few minutes.
“I was really scared,” she says of being able to hear her doctors and loved ones, but being unable to let them know she was conscious. “I knew if I just stopped fighting, I wouldn’t be in pain or suffering anymore — but dying was the easy way out.”
So Arlen kept her mind busy writing screenplays in her head, praying, and visualizing the life she still wanted to live.
“I kept reminding myself of what was good — and that I was still there,” she says.
But in 2009, just three months after turning 15, Arlen woke to find she’d regained control of her eyes. “From there it was miracle after miracle,” she says of slowly regaining feeling in the upper half of her body.
(Dr. Michael Levy, a professor of neurology at Johns Hopkins who has treated Arlen, says only a third of patients recover from transverse myelitis like Alren has. Dr. Levy says Arlen’s age and overall good health prior to her transverse myelitis episode was a major factor in her ability to recover.)
- For more from Alren — including how she’d mentally prepared to die shortly after her 15th birthday — pick up the latest issue of PEOPLE, on newsstands Friday
Arlen remained reliant on her wheelchair until her brothers strapped a life vest on her and threw her into their pool.
“It was freedom for me,” she says. “The pool became my escape.”
It also became her training ground as she set her sights on Paralympic gold as a swimmer at the 2012 Paralympic games in London.
Her success at the London games transformed Arlen and led to on-camera opportunities at ESPN. But despite her successes, she was bullied in high school for being in a wheelchair and became determined to walk again.
At the time doctors said walking again was likely an impossible goal but she signed on for a stint at Project Walk, an activity-based paralysis recovery facility established in Southern California.
Arlen and her mother stayed with family while she went to therapy, but after three months, there had been no progress and Arlen was disappointed she’d have to return home. Her mother had an idea: “I called my husband and said, ‘We need to mortgage the house. I want to open a Project Walk on the East Coast,’ ” says Jacquelyn.
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Back at home, Arlen spent up to eight hours a day at Project Walk with nothing to show for it — until one day when her therapist felt a twitch in her leg while she was doing gait training on a treadmill.
There wasn’t a rapid return of feeling like with the upper half of her body, but five months after that initial twitch – three years into her therapy at Project Walk — Arlen took her first step on her own.
“I was so much taller,” she says of adjusting to life out of her wheelchair. “I was just happy to see people’s eyes and not their bums.”
- PEOPLE’s special issue 25 Seasons of ‘Dancing with the Stars’ is on stands now
Now Arlen has set her sights even higher.
“I want the other Victorias out there, the people that are suffering or going through something, to keep fighting,” says Arlen, who is working on a memoir and a documentary in addition to being a contender for the Mirroball Trophy on season 25 of DWTS.
She still has no feeling in her legs and there are moments of frustration (like when she found out her entire ordeal may have been avoidable had she been given a steroid shot in 2006) but Arlen — who blogs about her DWTS experience exclusively for PEOPLE — is finally at peace and ready to live the life she dreamed about back in her hospital bed.
“I’d never choose what happened to me, but I would never change it,” she says. “It’s my tragic, beautiful journey.”