For Austin Carlile, the day that changed everything is a harsh reminder of what could have been. Growing up in Ohio, he had his sights set on going to college and playing baseball. He’d been playing since he was a youngster, practicing and staying disciplined for the rare chance to make it to the big time. Then his mom died.
At the time of her death, Carlile was 17 and still in high school. He found that his mother died from a rare genetic condition called Marfan syndrome, a genetic disorder that affects the body’s connective tissue. He wasn’t aware that his mother had suffered from the disease, and neither did she. Carlile’s mother, he says, went to a hospital that didn’t know what Marfan syndrome was. Once she was discovered to have Marfan, Carlile’s life was dramatically altered.
Knowing this, Carlile was tested for this potentially debilitating disease five years later, like his mother, he also tested positive for the disease. From the time he was diagnosed, the singer knew the rough road ahead of him. Only about 1 in 5,000 people suffer from Marfan, which can affect the heart, blood vessels, bones and joints.
“They told me I couldn’t play baseball and do track and field anymore,” he says while taking a break after a soundcheck in Charlotte. “I couldn’t smoke anymore, which I guess is a good thing! But, I lost my mom then I lost everything that I loved to do.”
Once he was diagnosed, everything suddenly began to make sense. Carlile finally realized the reasons why he’d be hurt playing, and plagued by nagging injuries that should have gone away faster.
“For a few years, I was in denial and didn’t want to believe it,” he admits. “Then I found out things were taking a toll on my heart, and I needed heart surgery in 2010. From there on out, I started taking it really seriously and have honed in on staying taking care of my body the past few years. I can’t just get by like everybody else since I’m not like everybody else.”
One of the few positive things to come from this life-altering diagnosis was music. He hadn’t been in a band before, even though his dad had a classic rock radio show and Carlile himself dabbled with the saxophone. First with Attack Attack!, and now with Of Mice and Men, Carlile has found comfort in a heavy style of music that was foreign before Marfan struck.
Though things are stable at this time, Carlile knows that his condition can worsen at any point. Pointing to the pitfalls of our nation’s healthcare system, the singer realized how tough it is for people who not only have Marfan, but other conditions that require the proper attention. Last year, he suffered a tear in his dural sac, which holds brain fluids and is another element of Marfan Carlile has to deal with.
He isn’t afraid to vent his frustrations (“It takes talking to five people and four weeks to schedule an appointment in the middle of America to get trigger point injections in my back”), but knows that he has a powerful vehicle in his music to help himself cope with his daily pain, and to inspire others.
“I don’t want people to go through what I went through and lose the people that they give a shit about just because an idiot doctor didn’t read the manuscripts of what’s coming up and what’s happened in the past 10-to-15 years in genetics,” he says of raising awareness for Marfan and of his own situation. “It’s something that I’m really passionate about and something that’s real to me. That kind of thing means more to me than this band. If I had to pick being in this band or being an advocate for Marfan, I’d pick the latter.”
On the band’s latest album, Cold World, Of Mice and Men reflect not only on the hardships that’s been plaguing Carlile since he was a teen, but the other incidents that helped shaped the band over the past few years. The thunderous album continues to highlight the band’s aggressive sound that had a higher sense of urgency with Carlile’s willingness to channel his own struggles into the music and lyrics.
“This new record, we touch on a lot of really personal subjects for us and draw a lot of it from a lot of real places,” the singer explains. “I used a lot of that experience and emotion and pain on there. I’ve been a victim of a bad medical system and it was cathartic for me to talk about those things. It was something that was so real to me that I deal with every day.”
Whenever Of Mice and Men are out on the road, the singer can’t partake in the usual fun activities that musicians cite as highlights from their time on tour. Instead, he wakes up uncomfortable. But, he says all of the pain and treatment he has to do during the day in order to gear up for a night’s performance is quickly forgotten once the band hits the stage and the first chords strummed.
“I wouldn’t be out here if I didn’t love what I do,” he says. “Mentally and physically being out on the road and having 12 other people tell you what to do and how to run your band, I mean with that, I literally would not be out here doing this if I didn’t have a love for performing music. It wouldn’t be worth it.”
Carlile’s bandmates don’t let him “Be weak or tired,” he says. Instead they inspired to him keep performing, saying that if he doesn’t have to be in the band if he’s not up to it.
The singer can’t help but laugh when he describes how his day is structured around his 45 minutes on-stage. Carlile spends his entire day preparing physically for his time rocking in front of fans, which means taking in the proper vitamins and nutrients, doing his stretches and exercises. Once an Of Mice and Men set is finished, the singer will either take a nap or if he can muster the energy, he’ll hide in the green room and read.
For others, the grueling nature of Marfan syndrome makes the mundane nearly impossible. Yet, Carlile, though he has no intention of martyring himself, humbly knows how important and influential he can be for people who are suffering from the same disease.
Before the release of Cold World, Of Mice and Men opened up for Slipknot and Marilyn Manson, a dual lineup of hard rock legends that any band would be eager to perform on the same stage as. Yet, as Carllile struggles, he has no regrets after a set and a night’s work complete.
“This is a strain on my body and I’m not supposed to be doing this in general,” he says of his rigorous schedule. “Of course, when I’m not supposed to do this, we end up booking one of the heaviest tours we’ve ever done. But it was all worth it.”
Being active has helped Carlile reconcile the conditions that plague him. As much as touring is a strain on his body, it’s been his the mechanism that’s allowed him to survive. “I don’t have to worry about having to live till I’m 80 or 90,” he quips. “I try not to think more than one day at a time; it’ll drive me nuts. I handle each 24 hours as it comes.”