Of Mice & Men Singer Is Not Getting Better

On October 11, 2016 front-man for metalcore band Of Mice & Men Austin Carlile announced that the band would be cutting their European tour short due to complications of his Marfan Syndrome. Many fans responded by wishing him well, and sharing their hopes that he’d get better soon. Carlile responded by explaining that “you don’t ‘get better’ w/ Marfans,” making me an instant fan.

Marfans is a genetic disorder that affects connective tissues of the body. Often there are visible symptoms like the elongation of limbs and torso, swelling on the back, crowded teeth, and stretch marks. The life-threatening aspects of this disease are also the invisible components: sudden lung collapse, enlarged aorta, separation of the layers of the aorta, and more.

As Carlile wrote in the tweet above on November 28, 2016, “You GET BY. I’ve had foot, ear, rib, head, hip, back, & heart surgeries just so I can function/live.”

It’s incredibly important that people like Carlile share their experiences with their fans for many reasons, the most important of which is education and awareness. With Marfans, like so many other illnesses, life expectancy/quality of life is better if the disease in caught earlier. Last year Avril Lavigne spoke out about having Lyme Disease, a potentially-chronic illness contracted from a flea bite. If caught earlier, Lyme Disease can be cured with antibiotics. However, the longer it is in a human system, the more damage it does, and even after antibiotics there can be many lingering effects.

With Marfans there is no cure, but starting treatment earlier can help prevent some of the more painful and life-threatening aspects of the disease. When stars come forward and share their experiences more people are aware of the signs of the illness, potentially saving lives of their loved ones, or their own lives. Carlile shared that he lost his own mother to the syndrome. Now, through his honesty, he is saving others. His Twitter bio includes a link to The Marfan Foundation which works to raise awareness and to connect those with the syndrome to resources they need. Marfans is a relatively rare disease and certainly not a household name the way “cancer” or “MS” is. Carlile even hosted a Question and Answer session on Twitter on November 30, 2016 using the hashtags #MarfanAwareness.

I am tempted to point to the Of Mice & Men song “Pain”: “So don’t you ever underestimate me/Daily death…Spitting blood on my pre-determined grave/This is all a game/Pressure in my brain/My shoulders take the weight/Back’s about to break/This is all a game/Pain/Every day that I awake.” While this song may not have been written with Marfans in mind, it strikes me as particularly relevant during this time for Carlile, and constantly relevant for millions of people around the world. About 11% of people in the United States suffer from chronic pain, that’s moderate to severe pain everyday. 

The common narrative of illness is the narrative of cancer. There’s always a hope for being cured, for a comeback. For those of us living with chronic and life-threatening illnesses this can feel like erasure. Our stories are different. Our stories are those of constant and consistent doctors visits, treatment plans, flare-ups from stress (like European tours), and honoring the days that we do feel good enough to do things, but also learning to allow ourselves to feel cheated out of the days we don’t have. There’s no one right way to be ill, but I’m glad Austin Carlile has chosen to be visible.

Al Rosenberg

Al Rosenberg

Gay weirdo. Talk to her about tiny games, big books, trash, and all things illness.

One thought on “Of Mice & Men Singer Is Not Getting Better

  1. I love your writing in general, but on this topic, you shine even brighter. (cheesy line, but true)

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