“I stepped on a screw and I didn’t realize it.”
Sure enough, there it was. She cringed at the one-and-a-half-inch rod of iron sticking out of her foot that had protruded through a thick layer of Nike tennis shoes. It must have been in there at least two to three hours already. Her parents rushed to the doctor for a tetanus shot, which to her, only felt like a small pinch.
But Lakota West High School sophomore Meggie Zahneis shrugged it off. No tears. No big deal.
She’s one of approximately 50 people in the world affected by Hereditary Sensory and Autonomic Neuropathy Type 2 (HSAN II), a rare sensory deficit disorder which leaves her with the inability to feel pain, temperature, and touch to the same degree as most people, as well as being totally deaf without the aid of her cochlear implants.
Zahneis’ handicap—(or as she likes to put it, handicapable)—is so symptomatic that it is difficult to pinpoint exactly the traits common of HSAN. Director of the Dysautonomia Treatment and Evaluation Center Felicia Axelrod, who is one of the few doctors in the world who sees patients with HSAN, says that 30 percent of HSAN II patients are affected with sensorineural hearing loss, and many HSAN patients have gifted intelligence.
“Although all the HSAN disorders affect the ability to feel pain, Type II is the one with the purest loss of pain,” Axelrod says. “[It can even reach] Type IV, in which patients also cannot sweat which results in inability to cool themselves and high fevers. They are more likely to have severe learning disabilities.”
Zahneis has been blessed with gifted intelligence, but her inability to feel pain the same way as most people has caused severe injuries. When Zahneis was 7, she scraped her foot on the bottom of a pool and didn’t realize it until her mom noticed blood in the water. Because she couldn’t feel it, she often would stomp her foot too hard and aggravate the injury, leading to a three-month confinement to a wheelchair.
“I would also put my arms around a tree and swing around, and scrape up all my arms without knowing. A lot of times I’ll just look and—” Meggie glances at a scab on her ring finger. “Like, where did that come from? Random injuries will pop up on my body.”
But Zahneis’ rare disorder distinguished her from more than 50,000 4th through 8th graders when she won the grand prize in a National Scholastic and Major League Baseball (MLB) Breaking Barriers essay contest that covered some of the effects of HSAN II on her life. The contest allowed students to share how they use the values of the first African-American MLB player, Jackie Robinson, to face their own barriers.
The winning entry received an assembly from Jackie Robinson’s daughter Sharon Robinson at his or her school, an all-expense paid trip to the All-Star game that summer in Phoenix, a laptop and several other helpful items for her school and classmates. But what Zahneis didn’t expect was a call from MLB Commissioner Bud Selig six months later offering her a position as MLB’s official Youth Correspondent reporter for MLB. com.
“I got that call, and I was literally rolling on the floor laughing because I couldn’t believe it,” Zahneis says. “To get my dream job at 14-years-old is pretty special.”
Zahneis’ dream job doesn’t have too many rules and boundaries— the task is simple: Zahneis writes stories of her choosing when she’s available that are published to MLB.com, and MLB pays a constant amount every month with the intent of helping her save for college.
“She’s down in a press box with these [journalists] who had to work their way up there,” says Bob Zahneis, Meggie’s dad, as he eyes the Reds game on television—a pastime typical of the Zahneis family. “Yeah she’s handicapped but she’s doing stuff most people don’t do until they’re adults.”
Reds player Brandon Phillips even attended a ceremony at Lakota West Freshman School to honor Meggie’s acceptance of the Youth Correspondent position.
“Brandon has always been one of my favorites,” Meggie says. “He and I have a good relationship. Whenever I’m down there when he sees me, he’ll come over and give me a hug. He [even] kisses my mom on the cheek.”
But it’s not just famous athletes who have been affected by Meggie’s story. Last year, Meggie’s Honors English 10 teacher Ian Avery, who taught Meggie sophomore English as a freshman, says that while supervising an independent study Meggie participated in last summer while writing for MLB. com, he noticed how strong of an individual she was.
“Those stories [she wrote for MLB] had an impact on me,” Avery says. “I was impressed with how professionally written they were, and I thought the way Meggie was able to get the players to open up to her was marvelous.”
Despite her successful job, Meggie has been a victim of cyberbullying via Formspring, a website that allows anyone to ask users questions under anonymous names. Although some of the comments hurt, Meggie says that just because she has a disorder, she doesn’t want any special treatment or sympathy.
“If you’re gonna be nice and friendly to someone else, then be nice and friendly to me. But if you’re gonna backstab or say mean things, I can take it just as well as anyone else,” Meggie says. “I don’t want people to sugarcoat or do anything different because I’m [handicapped].”
In order to give Meggie’s fellow classmates a better understanding of her disorder, Meggie’s mom Cindy Zahneis used to come talk to Meggie’s elementary school classes at the beginning of the year and explain her situation. Now, however, Meggie does so herself.
“If kids understand, a lot of times they’re OK with it,” Cindy says. “It’s just when kids don’t know [that bullying occurs]. Some people might not understand what her cochlear implants are. She wants to make sure that people don’t think she’s being rude if she can’t hear them.”
But Meggie doesn’t focus on the negatives. As mentioned in her winning essay, she makes a commitment to focus on what she can do, not what she can’t. Even after her 15th surgery last December, which resulted in vomiting up to 20 times a day in a two-week hospital stay (and being released just three days before Christmas and her birthday), Meggie still insisted she was the luckiest girl in the world.
“Really, a lot of people had it a lot worse than me,” Meggie says. “I mean, it’s a hospital—there’s cancers and all sorts of stuff. So as awful as that was, I got a glimpse of what it would be like to have something that’s way worse.”
Despite the surgeries, scrapes and hospital visits, Meggie takes each day with a smile. While other kids groan at the thought of writing an essay for school, Meggie keeps her own blog to relieve the stress of her strenuous classes and busy schedule.
“A lot of people say, ‘Your life must be so horrible.’ It’s not,” Meggie says. “If I were like everyone else, I probably wouldn’t have a talent for writing. You can’t just pick the good parts. You have to take the good with the bad.