Dancing With the Stars competitor Victoria Arlen is opening up about how she spent four years in a "vegetative" state as a child.
The 22-year-old ESPN features reporter spent nearly a decade paralyzed from the waist down and just regained the ability to walk a year and a half ago. However, now she can be seen whirling across the stage on the ABC dance competition series.
Arlen first detailed her incredible story for ESPN back in May 2016. She explained that her health issues began when she was an 11-year-old kid raised in Exter, New Hampshire.
“My back and side ached, so doctors took out my appendix,” she said. “Then my legs began giving out. My foot dragged. Within two weeks, I lost all feeling and function in my legs. Next, my hands stopped working. I couldn’t control my arms, couldn’t swallow properly or find the right words when I wanted to speak. It was as if someone was slowly shutting down the switches on the circuit board that controlled my body and brain. I was slowly slipping away from my family.”
“Then everything went dark,” she continued. “Two years later, I woke up inside a body that could not move. I was locked in. I could hear the conversations going on around me, but I had no way of alerting anyone that I was aware they were there.”
It took the doctors three years to diagnose Arlen with two equally rare conditions: Acute Disseminated Encephalomyelitis and Transverse Myelitis. Both are autoimmune disorders that caused swelling of her brain and spinal cord.
“I’ve since learned that, had my doctors diagnosed me correctly in 2006, a steroid injection could have prevented all of this,” she said. “But at the time of my diagnosis, they offered my family little hope. They told them I would be a vegetable for the rest of my life. I heard those conversations.”
Arlen lost the ability to eat, walk, move and speak. Doctors did not think her chances of survival were high and that she likely would not recover. Despite the doctor's opinions, Arlen's parents believed in her and set up a hospital room for her in their house to take care of her.
“My three brothers — I’m a triplet and we have an older brother — talked to me and kept me in the know about what was going on outside of my room,” said Arlen. “They empowered me to fight and get stronger. They didn’t know I could hear them, but I could.”
After years in a vegetative state, Arlen made eye contact with her mom in December 2009.
“Slowly over the next year, I began coming back to life,” she said. “Raw sounds became words, became sentences. A twitch of my index finger became the wave of my hand. The ability to swallow pudding eventually led to me mowing on a steak. I learned the name Justin Bieber, held my first cell phone and learned what it meant to ‘poke’ someone on Facebook.”
“But despite daily progress, one thing never returned: my legs,” she continued. “I was told the swelling had caused permanent damage to my spinal cord and I would be paralyzed from my belly button down for the rest of my life. Every specialist told me the same thing: ‘You need to get used to being in a wheelchair.’ I’d already overcome the impossible. I’d woken up and re-learned to live. My idea of what is possible had changed. When my doctors said I would never walk, I didn’t believe them. I knew I wasn’t meant to spend my life in a chair.”
Arlen went on to find her confidence and strength by competitive swimming even though she didn't have the use of her legs.
At age 17, Arlen made the USA Paralympic swim team. In 2012, she competed at the London Games and brought home three silver medals and a gold in the 100-meter freestyle and setting a world record in the 100-meter free.
After gaining national notoriety for her performance at the Olympics, Arlen still wanted to achieve her goal of walking. She sought the help of Project Walk and used an activity-based therapy called Dardzinski Method.
“Standing upright felt like drastically changing my hair and then worrying what everyone else would think,” Arlen said. “I wondered if I would be accepted without my chair. But I needed to be comfortable and at peace with my new identity before I could ask the same from others.”
“I didn’t do this on my own, and I am grateful for everyone who has helped me to this point,” she said. “Each day, I become more comfortable with my new reality. I thought taking those steps on March 3 would be my finish line. But really, they were only the beginning.”
Dancing with the Stars airs Mondays at 8 p.m. ET on ABC.