Victoria Arlen is a bullet in the water. The 19-year-old is so fast that she won a gold medal and three silver medals in London two years ago. And she’s paralyzed from the waist down.
Still, she seemingly has it all: athletic prowess, beauty, brains, a sense of humor, and self-assuredness. And despite being confined to a wheelchair, she refuses to let anything get in her way.
Arlen told School Transportation News that she has learned to laugh rather than cry and to have fun with her disability and the silly, even rude, questions people ask. It also takes her longer to get ready in the morning, a ritual that actually begins the night before by selecting and laying out her clothes.
But she’s taking it all in stride, so to speak. She even rolled on the Red Carpet at the ESPYs last July, ESPN’s sports awards show.
Student transporters in attendance at the NAPT Summit last fall in Grand Rapids, Mich., met Arlen, and heard her amazing story and message on “Rock Your Disability,” namely that the physical or other limitations of a person don’t define them. She tells the disabled during speaking events nationwide to not focus on what they don’t have. Instead, she urges them to use what they do have, like she does.
And she attempts to help others, such as school bus drivers, to feel more empathy for the disabled and to understand the true effects of bullying as she has lived through it. At NAPT, she spoke to those who care for disabled students during the school bus ride. And the message was essentially the same: “Yes you can!”
“The world would be a much better place with the kind of support that I’ve gotten,” she added.
She said the only disability is a bad attitude, and Arlen is as positive as they come despite her circumstances. After all, she realized new heights that she may never have but for her paralysis. Still she doesn’t consider herself the real hero.
“School bus drivers are the real heroes,” Arlen said last fall. “Yesterday was amazing. They want to know how they can be the best they can be for the kids, to empower them to be all they can be.”
The reigning Gold Medal winner in the 100m Freestyle and Silver Medal winner in the 50m Free, 400m Free and 4x100m Freestyle relay at the 2012 Paralympics in London was representing wheelchair securement manufacturer Q’Straint, which signed Arlen last spring as the company’s brand ambassador. She appears in ads published in national trade publications, including School Transportation News, and on the company’s website and social network sites.
“Our mission is to ensure that people in wheelchairs are able to safely get wherever they are going whether it is on public transportation, taxi or their personal vehicle,” explained a Q’Straint spokesman in May.
“Victoria is an amazing young lady who has overcome incredible odds during her life to become a very successful Para-athlete. We are honored to have someone with her dedication, poise and determination as our brand advocate.”
Arlen’s story began as it does for most athletic young girls in a middle-class family. A fun-loving little girl, she was born in Boston as a triplet along with her two brothers and grew up in New Hampshire. At age 5 she told her mom, Jacqueline that she wanted to win a gold medal. By 9 years old she was competing in and winning local swim meets.
“I got a lot of ribbons and medals and trophies,” she recalled during an interview on the NAPT Trade Show floor last fall. “I got the sportsmanship and team spirit awards a lot. I did decent for my age.”
But soon, something was to go horribly wrong. One day, as an 11 year old, she started suffering nerve pain in her back and down her side. In a matter of weeks her legs no longer could support her body weight. Paralysis below the waist followed, and Arlen could no longer eat on her own. She quickly fell into a vegetative state.
“It was very frustrating because I was so young,” she recalled. “One day I was fine and the next day I was really struggling, and it just kept getting worse for the next three-and-a-half years.”
Doctors could detect brain activity, but the swelling of Arlen’s brain as well as her other symptoms continued to baffle them. To them, Arlen was a lost cause, she said. Meanwhile, Arlen said she remained conscious … and frustrated. To others she simply stared off into space and had to be force-fed and bathed. She couldn’t communicate with anyone, so she held conversations with herself to pass the time and to keep sane.
“I was able to do a lot of reflection and just really determine to get back and live my life to the fullest,” she said. “It definitely opened up my eyes and helped me appreciate every little thing.”
Three more years went by before an MRI finally diagnosed the condition as transverse myelitis, or acute disseminated encephalomyelitis, which attacks the brain and spinal chord via a virus or, potentially, a vaccine. This rare inflammatory disease essentially causes the body to attack itself, Arlen explained. It affects about 1,400 people each year regardless of age, but a quarter of all cases are children, according to the Transverse Myelitis Association.
“It’s literally a one in a million misfire,” she added.
With the diagnosis made, doctors could begin to treat her, and she slowly improved, first coming out of her vegetative state in February 2010 and then relearning to talk and to do just about everything else that she had once taken for granted.
But her paralysis was permanent, and that made the pool, once her haven, petrifying for her. So that August her brothers, like boys will do, strapped a lifejacket on Victoria and tossed her in. It was a fitting reintroduction.
By November Arlen was working out with coaches and by January she was competing again. She qualified for the London Paralympics in September 2011.
But while she was getting her life back in the water, elsewhere, such as at school, things weren’t going well. Arlen suddenly had to learn what it is like being the only student with a disability at her school. Years earlier, while still in a vegetative state but somewhat lucid, Arlen’s parents sent Victoria to school for two of hours a day in the hope of slowly reintroducing her to a normal environment. She started riding the school bus. In fact she was the only rider. Though Arlen was seemingly “not there,” school bus driver Lisa greeted her everyday and would hold conversations, albeit one-sided ones. Arlen said Lisa helped her immensely with her confidence when her condition was still new and so difficult to understand and to deal with, and the two have remained friends.
“Some incredible people have come into my life,” Arlen added.
But by middle school, Arlen said she felt the brunt of bullying and no longer had her friendly driver to rely on, as by then her mom was driving her and the boys to school.
“Kids are so cruel,” she said. “They are afraid of what’s different, so they let me have it.”
While she retained a core group of close friends, Arlen said the other kids were rarely mean in an overt way but would get to her with the “small things.” For example, they would be very condescending and even contemptuous. They would talk to down to her as if she was a 3 year old and would pat her on the head. Whether they realized it or not, the condescension took its toll.
Many of those same people suddenly acted like her best friends when she returned from London in September with her medals. Like the paralysis that came before it, bullying, and her reception at home after the Paralympics; only strengthened Arlen’s resolve to rise above it all. To that she credits her loved ones as well as her friends who stayed with her through thick and thin.
She said she also draws strength from her new hero, Brad Snyder, a fellow Paralympic swimmer. As a lieutenant in the Navy and an explosive ordinance officer in Afghanistan, he lost both of his eyes after stepping on an IED while attempting to help victims of another bombing in September 2011. A year later in London, won two gold medals and a silver. He also won four gold medals in swimming and three in track and field at the Warrior Games in Colorado Springs, Colo., in May 2012.
Arlen graduated high school last June and after taking a year off said she hopes to attend college at the University of California, Los Angeles or at the University of Southern California and pursue her swimming career. She wants to swim professionally and even has her sights on competing in the Iron Man Triathlon within the next three years.
“I have an incredible family,” she said. “I’m blessed to be here and have a second chance at life.”
