YOGA SAVED ME
After years of medical and mental struggles, a young man finds balance
W ITH his lithe frame and ever-present yoga mat, it’s hard to believe that for most of his life yoga instructor Robbie Lettieri lived with tics and seizures so severe they would last for days, and so violent that they broke nearly every bone in his body.
Lettieri, a Smithtown, LI, native, suffered from a rare form of Tourette syndrome that failed to respond to nearly every imaginable treatment — from conventional anti-anxiety medications to massive shots of Botox.
As they progressed in both frequency and duration, the tics eventually merged with the seizures and became so intense that doctors would place Lettieri, now 23, in medically induced comas to “reset” his mind, calm his body and — eventually — end the spasms.
Lettieri was semiconscious throughout these ordeals — wracked with pain and “feeling as if my body were on remote control,” as he describes it. “It was like he was living in a boxing ring,” explains his mother, Debbie, of her son’s extreme episodes. “He would poke his eyes, twist his neck — he could not be left alone.”
But that all changed in late 2011, when, at the age of 16, Lettieri became one of the youngest patients ever to undergo an experimental procedure called deep brain stimulation (DBS). Typically used to treat Parkinson’s disease, DBS involves inserting electric wires into the brain, which emit a constant stream of precisely measured volts directly along the affected areas.
Powered by a pair of small battery packs surgically implanted into his abdomen, “the wires stimulate the thalamus — the part of my brain that would misfire,” Lettieri explains.
The surgery worked — immediately — and from the moment he woke up, Lettieri felt an unprecedented sense of calm and control. “I had forgotten what it felt like for my body to be still,” he says. “It felt like I’d been reborn.”
And, yet, he also felt wholly unequipped to navigate his new life. For one thing, Lettieri was fat — nearly 300 pounds — a side effect of the intense anti-seizure medications he’d taken for years. He was also now a “normal” teenager — who’d spent most of his childhood in special-needs schools.
Thrust into his local high school, he was awkward, insecure and, increasingly, even more depressed with his new life than he’d been with his old one. He managed to graduate — and dabbled in college — but Lettieri couldn’t seem to find his footing. Until he found yoga. “I’d been practicing casually for years and took him on a whim,” Debbie recalls of Robbie’s first class. “I never imagined that one day yoga would dominate his life.”
That day is today. Since that first class two years ago, Lettieri has become devoted to yoga, making it into both a passion and profession.
On a personal level, yoga has not only helped Robbie get into shape — an impressive 6-foot-3 and 180 pounds — its mind-body principles have helped him manage (if not prevent) the occasional tics that can still strike without warning. “I’m so aware of my body now that, in a sense, I’m able to ‘soothe’ away the tics before they can intensify,” he explains.
Even before he lost the weight, Robbie seemed to have a natural affinity for yoga. “For years, I was already contorting my body into extreme positions because of the tics,” he notes.
Dr. Alon Mogilner, who led Robbie’s DBS team at NYU Langone Medical Center, describes this phenomenon as “habit reversal . . . Robbie is channeling the negative tic energy into something more calming and beneficial.”
Meanwhile, on a professional level, Lettieri just completed nine months of yoga teacher training at Family Tree Yoga and Wellness near his home — the same studio where he took his first class. Lettieri specializes in vinyasa yoga, and now teaches it to novices, yoga junkies and, most crucially, people with disabilities and mental illnesses.
He established an educational foundation, Grow To Love, and speaks at local schools to share his story, destigmatize depression and combat bullying. Most important, he says, is yoga and its power to transform both body and mind.
“Part of my visit includes a simple meditation and a focus on mindfulness,” he says. “I want kids to understand that it can be cool to be nice, and I want them to know how yoga truly saved my life.”