On the first glance, it’s not apparent Joseph Torello suffers from an unusual disease that affects the nerves that stimulate movement. That’s critical for Torello, a 31-year-old dancer, actor and vocalist who was born in Waterbury and raised in Naugatuck.
Torello dove into community theater around the same time he received his diagnosis. He first noticed something was wrong as a young dancer when he had difficulty flexing his feet. His mother took him to the doctor where, at 12, he was diagnosed with CMT, a disease about which little was known. To make things worse, Torello’s doctor told him he would need to quit dancing.
“It was really hard, at my young age, when the doctor said ‘you can’t dance anymore.'”
Torello’s response? “I don’t really accept that.”
Charcot Marie Tooth (named for the three scientists who discovered it) is a progressive disease that destroys the nerves through a gradual degradation of the tissue that surrounds them, until the nerves can no longer send signals to the muscles. Once this has occurred, the muscles atrophy.
Torello says he has already lost some of his muscle mass: “I have no calves and no muscles in the front of my shins.”
Because of this, he cannot point his toes or flex his feet and has to wrap Ace bandages around both ankles and wear boots at all times. For someone suffering from CMT, a disease in which symptoms often manifest first through the weakness of legs, foot deformity, a slapping gait, numbness and the impairment of podiatric motor skills, dancing is probably one of the most challenging professions.
“I joke that I’m dead from the knees down and I kind of am,” he says.
Though Torello has feeling in his calves, he experiences numbness in certain areas and cannot move from the knees down because he has no muscles. Despite being “dead from the knees down,” Torello has performed in 47 states and across the globe from London to Asia and back again.
Although CMT is one of the most common heredity neuropathies and is as prevalent an illness as multiple sclerosis, the disease is not as widely recognized and is devoid of treatment options. By speaking about his journey, Torello hopes to raise awareness and research funding to find a cure.
Torello has raised $1,300 for CMT research. He hopes to exceed his goal of $5,000 for the Hereditary Neuropathy Foundation by Nov. 18, when he will be “running for a cure” in the Philadelphia half-marathon.
Without any medication or treatment options, the only advice his doctors and physical therapists could come up with was “‘the lighter you weigh, the easier it will be on your joints,’ but that isn’t easy when you’re Italian,” Torello jokes.
Despite all the positive strides Torello has made to overcome this disorder, he does have his off-days. At times he finds it difficult to be in such a judgmental business. One of the most difficult moments is walking into an audition.
“When I walk in, the people behind the table immediately look down at my feet and make a face,” he explains. “Sometimes when I walk in they just assume I’m uncoordinated, that I’m definitely not a dancer because I have a funny walk.”
These looks aren’t limited to the workplace. He also experiences rude reactions walking down the street in New York City. Even at his local gym, people stare at his feet, especially when he’s running. Torello has observed employees as well as gym members staring, talking and laughing at him.
Negative attention is just motivation for Torello. He says it makes him want to train harder. He also sees it as an opportunity to raise awareness for CMT. When approached by strangers, Torello gladly explains the facets and challenges of the disease so when they encounter a person living with CMT in the future, they are informed.
Lately, because of his looks and bass voice, he finds he has been taking on more ensemble roles that require less dance. The segue seems to be a smooth one as Torello moves from dance and toward voice-overs and music. He is working on an album he describes as having a “soulful bluesy” sound. Torello’s album, “Second Soul,” will be available on iTunes at the end of October and a portion of the proceeds from the track “Keeping Christmas” will go to the Hereditary Neuropathy Foundation.
Asked to describe the most serious challenge he’s faced since being diagnosed with CMT, Torello takes a long pause before answering. “Finding shoes,” he says with a grin. “Boots suck in August.”
Despite the challenges that CMT poses, Torello has not let it stop him from working at his goal of being a professional dancer and actor, and he’s done it all without an agent. He has acted in productions of “Cats,” “Oliver,” “Smokey Joe’s Cafe” and has performed in “The Music Man” 420 times in 46 states, most recently, a production this summer in Sacramento that featured Shirley Jones. And he’s traveled and performed on a cruise ship as the bass member of an a capella group.
“I was nervous about living on a ship because of my balance as bad as it is,” he says. “But then, with all the rocking, I realized now everybody walks like I do.”
Even with his positive outlook, at times he cannot help but get caught up in the what-ifs. “There are times that I get so mad that I think that I could’ve been this famous dancer, and had a whole career out of just dance, and that was sort of taken away,” he said.
Still, he maintains his optimistic outlook. “But I found that has led me to singing, which I love. You just gotta follow where the journey takes you even if it’s not where you think you’ve got to go.”
Shortly after Torello made plans to run the Philadelphia race, he was cast in a production of “The Music Man” at Philadelphia’s Walnut Street Theater. Located eight blocks from the marathon’s starting line, the show runs from Nov. 6 to Jan. 6.
“It’s gonna be a busy fall,” Torello jokes.
On the date of the marathon, Torello is scheduled to appear in two showings of “The Music Man.””My character may be crawling through some of it,” he laughs.
It is a busy time indeed, but for Torello it is worth all the effort.
“A friend of mine recently left me a voice-mail that said, ‘Wow, you inspire me.’ And I was like, ‘that’s why I want to do this, this race.'”
To contribute to Team CMT’s goal of $5,000, or to make a donation to the Hereditary Neuropathy Foundation, visit hnf.donorpages.com and search for Joe Torello.
