“I know that whatever is happening, if I’m in pain, it’s for a better purpose.”
Boy has endured moments of pain, but they’ve been preface to success
For a young man who sees his future in film, it comes as little surprise that Michael Casey draws inspiration from a line of screen dialogue: A moment of pain is worth a lifetime of glory, a character tells the hero of the 2014 release “Unbroken.”
“That’s always been my mind-set, but he summed it up for me in one sentence,” says Michael, a 17-year-old Westminster student who found refuge in movies while recovering from more than two dozen medical procedures to address a rare medical condition. “I know that whatever is happening, if I’m in pain, it’s for a better purpose.”
He has collected a box full of medical hardware that dates to his birth with Treacher Collins syndrome, which affects development of facial bones and tissue, often with complications like breathing difficulty and
hearing loss. But some of the most distinctive characteristics are abnormalities of appearance: flat or absent cheekbones, downsloped eyes, unformed or unusually formed ears and a lower jaw that’s small and set back.
But Michael, like many others touched by up to a 1in-50,000 chance of being born with Treacher Collins, has plowed through the pain, embraced his differences and written the script for an extraordinary life. A senior at Northglenn High School, he plays several instruments, dabbles in sleight-of-hand, learned Japanese from his piano teacher, took up competitive ice hockey and now aims for a career in movies.
His life intersected cinema yet again last week, when he dressed up and walked the red carpet for a private screening of the movie “Wonder,” the fictional story, based on the book by R.J. Palacio, of a boy with facial differences and his trials adapting to a mainstream school. The event, organized by Children’s Hospital Colorado to celebrate current and former patients from its Craniofacial Center and Cleft Lip and Palate Clinic, reminded Casey of his own struggles — and of the power of filmmaking.
Even after viewing the previews ahead of the private showing, he felt its resonance.
“This was me,” Michael says.
*** When Michael Casey was born in May 2000, the diagnosis was immediate — and a surprise. Although his mom, Michelle, had endured a high-risk pregnancy, there had been no early warning.
Instead, she and her husband, Ed, heard expressions of sympathy for Michael, their second child — a daughter, Meghan, had been born five years earlier — and Michelle kept wondering: Why are you sorry? His heart was sound. His breathing seemed normal. There appeared to be no cognitive damage.
His outer ears were underdeveloped, and his parents realized something was amiss when he didn’t respond to noises in the hospital room.
“Obviously, he was hearing-impaired,” Michelle recalls. “We can deal with that.”
But once they’d taken him home, they noticed some emerging irregularities in his breathing. When he was 11 days old, they took him to Children’s Hospital Colorado, where he was launched on his years of treatment to incrementally address the respiratory difficulties caused by the structural differences in his skull, plus his hearing and issues stemming from his lack of cheekbones and undersized jaw — all typical symptoms of Treacher Collins syndrome.
Most of the time, the condition is caused by a gene mutation and occurs spontaneously, meaning that neither parent had TCS, says Dr. Greg Allen, a pediatric otolaryngologist and medical director of Children’s Cleft Lip and Palate program who has been Michael’s ear, nose and throat surgeon since he was just months old.
He notes that a variety of procedures can mitigate the typical complications, most commonly surgery to enlarge the lower jaw — Michael has had three as he has grown — additional surgery to implant or augment bone in the cheeks, and operations to correct the eyelids.
Although Michael learned sign language early on, his hearing developed with the ever-advancing technology of hearing aids, which he began using at 1 month old and has seen through stages of analog, digital and most recently Bluetooth development.
“As far as hearing and things like that, that’s something we could work with,” Michelle says. “We weren’t first-time parents. As far as the rest of it, we treated Michael like a typical kid. Yes, he’s had a lot of medical issues, but he’s a kid first. His medical stuff comes second.”
He attended a public school that mainstreams deaf and hard-of-hearing kids. And while he came away with fast and longstanding friendships, his facial differences still elicited occasional unkind remarks from some kids.
“I was bullied in elementary school for the most part, and middle school some,” Michael says. “It was mostly kids saying, ‘Oh, look at you, freak.’ The nice thing about being deaf, I always could turn off my hearing aids. You don’t have to listen to it.”
The experience made him who he is, he adds, and sharpened his ability to navigate life’s rough patches. And once again, he leaned on Hollywood.
“I watched ‘Rocky’ when I was really young, and it was not about how hard you could hit, but how hard you could get hit and get back up and move forward,” he says. “That stuck with me.”
The overarching factor that carried him through his challenges, though, was the sheer normalcy of his home life. Ed and Michelle nurtured his natural interests in performing arts, music and sports while treating him by the same house rules that governed his sister.
Michael says his childhood helped him outgrow self-consciousness. His physical differences faded in significance and, in at least one instance, offered him opportunity to craft his own creative backstory to spoof his friends.
Offered the chance to have his left ear reshaped with plastic surgery when he was about 5, he declined. He liked his ear the way it was. When kids asked him what happened — there is little more to it than a lobe — he would tell them it had been bitten off by a mountain lion.
Later, he wore a T-shirt that simply proclaimed: “I fought Mike Tyson.” That creation, which alluded to the infamous 1997 fight between Tyson and Evander Holyfield in which Tyson bit part of his opponent’s ear off, was the invention of Meghan — further evidence of a tight relationship that has influenced her every bit as much as her brother.
In high school, Meghan did an internship with Michael’s surgeon that she still regards as the “coolest thing ever” and sparked her desire to help kids. She drew on her relationship with her brother in composing her admissions essay for Colorado State University, and ultimately resolved to work in some aspect of pediatric medicine once she graduates in the spring with a psychology degree.
“I’ve looked up to Michael my entire life,” says Meghan, 22. “His perseverance makes me proud he’s my little brother.”
***
Even from a very young age, Michael’s evolving physical appearance hardly put a brake on his outgoing personality and his instincts as a performer.
His dad pulls out his smartphone and plays a 10year-old video conceived by Michael, in which he finds and confronts a shark in his bathtub. With a succession of one-liners and some rudimentary special effects — the image of him flushing the shark down the toilet is particularly memorable — he revealed a comfort in front of the camera that reflects his affinity for performance.
He became an amateur magician at 6 and performed for fun on Boulder’s Pearl Street Mall, sometimes playing off his sister’s skills as a ventriloquist, as well as local talent shows. He would later combine ventriloquism and magic into his act as the “VenTRICKolist.”
Along the way, he embraced music through a variety of instruments: drums in the third grade, guitar in fourth grade along with piano, which he learned from a neighbor who split his lessons between the keyboard and teaching him her native Japanese language. He gravitated to the cello in middle school and continued his knack for picking up almost any instrument and figuring out how to play.
“Music,” he says, “is not listening. It’s feeling.”
But movies were all of those things wrapped up into one, an evocative medium that he loved for the entertainment value but that captivated him with its behind-the-scenes complexity. Early on, movies provided escape while he recuperated from his procedures. Then they became
something more.
“Magic,” he explains, “is unbelievable when you watch it, but there’s so much that goes on behind it. To me, movies were magic.”
That’s why he sees himself directing, producing and acting.
“I had always watched them for entertainment,” he says, “but the older I grew and more knowledge I gained, I broke down movies: How did they do this? What cam- eras are they using? Where are they?”
With his cello, and his beagle Simon, he has entertained passing patrons on the Pearl Street Mall to raise money for his senior capstone project — a January stint in Hawaii with a professional filmmaker who will guide him in making his own short production. Then he hopes to attend the University of Texas at Austin and study film.
Sports provided another outlet for performance, with baseball capturing his interest at 5. But a latent passion for ice hockey wasn’t fulfilled until just a few years ago, because his frequent hospital visits made physical contact a greater risk. He figures now that all the surgeries bestowed an unforeseen benefit: high pain tolerance.
That dovetailed perfectly with hockey. Heading into his freshman year, Michael spent an entire summer taking lessons to learn skating and hockey fundamentals, and now plays on recreational teams and his high school club team.
He did, at least, until his jaw surgery in May, which forced him to temporarily back off from contact for the winter — though he’s skating on his own in anticipation of the spring season.
“Michael has continued to surprise me,” Allen says. “When he came in and told me he was playing hockey, or when I listen to a recording of him play his cello, those are two examples of when I was very surprised. His tenacious attitude, his skill and level of accomplishment are exemplary for any kid.”
Michael admits there have been times when it seemed all the medical attention felt interminable, and that there would be little space in his life for either his athletic or artistic passions.
“When I was younger, it felt like nothing was ever going to end, that I was going to be in the hospital for eternity and I was going to be sitting there and sitting there, not being able to accomplish anything,” he says.
But then he looked to the big screen and reassessed the calculus of pain and glory.
“After I heard that,” Michael says, “life became easier.”