How Victoria Arlen Willed Herself Out of Paralysis to Become a Paralympian
For four long years, Victoria Arlen couldn't walk, talk, or move a muscle in her body. But, unbeknownst to those around her, she could hear and think — and with that, she could hope. Harnessing that hope is what ultimately got her through seemingly insurmountable odds and regain her health and life.
A Rapidly Evolving, Mysterious Illness
In 2006, at 11 years old, Arlen contracted an incredibly rare combination of transverse myelitis, a disease that causes inflammation of the spinal cord, and acute disseminated encephalomyelitis (ADEM), an inflammatory attack on the brain and spinal cord — the combination of these two conditions can be fatal when left unchecked.
Unfortunately, it wasn't until years after she first became ill that Arlen finally received this diagnosis. The delay would change the course of her life forever. (Related: Doctors Ignored My Symptoms for Three Years Before I Was Diagnosed with Stage 4 Lymphoma)
What initially began as an ache near her back and side grew into terrible stomach pain, ultimately leading to an
appendectomy. But after that surgery, her condition only continued to deteriorate. Next, Arlen says one of her feet started to become limp and drag, then she lost feeling and function in both legs. Soon, she was bedridden in the hospital. She slowly lost function in her arms and hands, as well as the ability to swallow properly. She struggled to find words when she wanted to speak. And it was then, just three months since the onset of her symptoms, that she says "everything went dark."
Arlen spent the next four years paralyzed and in what she and her doctors referred to as a "vegetative state" — unable to eat, talk, or even move the muscles in her face. She was trapped inside a body she couldn't move, with a voice she couldn't use. (It's worth noting that medical society has since shied away from the term vegetative state due to what some would say is a depreciatory term, opting instead for unresponsive wakefulness syndrome.)
Each doctor Arlen's parents consulted gave little to no hope for the family. "I started to hear the conversations that I wasn't going to make it or that I'd be like this for the rest of my life," says Arlen. (Related: I Was Diagnosed with Epilepsy Without Even Knowing I Was Having Seizures)
Though no one was aware, Arlen could hear it all — she was still there, she just couldn't speak or move. "I tried to scream for help and talk to people and move and get out of bed, and no one was responding to me," she says. Arlen describes the experience as being "locked inside" her brain and body; she knew something was very wrong, but she couldn't do anything about it.
Defying the Odds and Her Doctors
But against the odds and all the hopeless predictions of experts, Arlen made eye contact with her mother in December 2009 — a movement that would signal her incredible journey to recovery. (Previously, when she did open her eyes they would have a kind of blank stare.)
This comeback was nothing short of a medical miracle: On its own, a complete recovery from transverse myelitis is unlikely if positive progress isn't made within the first three to six months, and rapid onset of symptoms (as Arlen experienced) only weakens that prognosis, according to The National Institutes of Health (NIH). What's more, she was still battling AEDM as well, which has the ability to cause "mild to moderate lifelong impairment" in severe cases such as Arlen's.
"My [current] specialists said, 'How are you alive? People don't come out of this!'" she says.
Even as she started to regain some movement — sitting up, eating on her own — she still needed a wheelchair for everyday life and doctors were skeptical that she would ever be able to walk again.
While Arlen was alive and awake, the ordeal left her body and mind with lasting effects. Serious damage to her brain and spinal cord meant Arlen was no longer paralyzed but couldn't feel any kind of movement in her legs, making it difficult to send signals from her brain to her limbs to initiate action. (Related: Having a Debilitating Illness Taught Me to Be Grateful for My Body)
Regaining Her Strength
Growing up with three brothers and an athletic family, Arlen loved sports — especially swimming, which was her "special time" with her mom (an avid swimmer herself). At five years old, she even told her mom she was going to win a gold medal one day. So despite her limitations, Arlen says she was focused on what she could do with her body, and with the encouragement of her family, she began swimming again in 2010.
What initially began as a form of physical therapy, reignited her love of the sport. She wasn't walking but she could swim — and well. So Arlen started getting serious about her swimming the following year. Soon after, thanks to that dedicated training, she qualified for the 2012 London Paralympic Games.
She saw all that determination and hard work manifest as she swam for Team USA and won three silver medals — in addition to taking home the gold in the 100-meter freestyle.
Pushing the Boundaries
Afterward, Arlen didn't have any plans to just hang up her medals and relax. She had worked with Project Walk, a paralysis recovery center based in Carlsbad, CA, during her recovery, and says she felt so lucky to have their professional support. She wanted to give back in some way and find purpose in her pain. So, in 2014, she and her family opened a Project Walk facility in Boston where she could continue to train and also offer a space for mobility rehabilitation for others who needed it.
Then, during a training session the next year, the unexpected happened: Arlen felt something in her legs. It was a muscle, and she could feel it "turn on," she explains — something she hadn't felt since before her paralysis. Thanks to her continued dedication to physical therapy, that one muscle movement became a catalyst, and by February 2016, Arlen did what her doctors never thought possible: She took a step. A few months later, she was walking in leg braces with no crutches, and come 2017, Arlen was fox-trotting as a contestant on Dancing with the Stars.
Ready to Run
Even with all those wins under her belt, she added yet another win to her record book: Arlen ran the Walt Disney World 5K in January 2020 — something that sounded like a pipe dream when she was lying motionless in a hospital bed just more than 10 years prior. (Related: How I Finally Committed to a Half Marathon — and Reconnected with Myself In the Process)
"When you sit in a wheelchair for ten years, you really learn to love running!" she says. More muscles in her lower body are now up and running (literally) thanks to years of training with Project Walk, but there's still progress to be made with some of the small, stabilizing muscles in her ankles and feet, she explains.
Looking to the Future
Today, Arlen is the host of American Ninja Warrior Junior and a regular reporter for ESPN. She's a published author — read her book Locked in: The Will to Survive and the Resolve to Live (Buy It, $16, bookshop.org) — and founder of Victoria's Victory, a foundation aiming to help others with "mobility challenges due to life-altering injuries or diagnosis," by providing scholarships for recovery needs, according to the foundation's website.
"Gratitude is what kept me going for many years where things were not going in my favor," says Arlen. "The fact that I can scratch my nose is a miracle. When I was locked in [my body], I remember thinking 'If I could just scratch my nose one day that would be the greatest thing in the world!'" Now, she tells people who are going through a hard time, to "stop and scratch your nose" as a way to illustrate how such a simple movement can be taken for granted.
She also says she owes so much to her family. "They never gave up on me," she says. Even when doctors told her she was a lost cause, her family never lost hope. "They pushed me. They believed in me."
Despite everything she's gone through, Arlen says she wouldn't change any of it. "It all happens for a reason," she says. "I've been able to turn this tragedy into something triumphant and help others along the way."