Federico Petrelli, 34, always felt it was his responsibility to work hard and accomplish a lot. "I grew up in Italy, a mixed family," he says. "My dad is Italian Catholic, theoretically, and my mom is Syrian, Lebanese, and Jewish."
"In both cultures," he says, "there's a lot of importance placed on work and in general on one's duty" to be a good son and a productive member of society.
The culture in his local Milan only compounded the message. "The Milanese are very notorious for being all about work, for wanting always to be productive, and for having this no-nonsense attitude: 'Let's cut the B.S. and let's get to the part where we make money.'"
This messaging stayed with him throughout his early adulthood. Petrelli got a bachelor's in diplomacy from Reichman University in Israel and a master's in foreign service from Georgetown University. He moved to New York, worked at the Israeli mission to the United Nations, and later founded a company called Kitchen Therapy, which sold whole-food, plant-based meals to try to reverse chronic diseases like Type 2 diabetes.
Soon, however, his health began to deteriorate. After being misdiagnosed throughout his 20s, at 30, Petrelli was finally told he had a neurological disorder called dystonia, which the Mayo Clinic describes as a "disorder in which your muscles contract involuntarily, causing repetitive or twisting movements."
By the time he was diagnosed, he couldn't talk without his face spasming and hurting and he couldn't sit without pain shooting up and down his right side. At times, he'd wake up with a sense of "doom" and "maddening pain," he says, rendering it impossible to get out of bed, let alone work.
The professional activities that had provided him with a sense of self-worth were no longer possible. "It was very painful," he says, to realize that "the things that were possible before are not going to be possible in the future."
As his body gave out, he had to try "to understand who I was outside of work," he says, "and, really, what makes someone a valuable human being."
Signs of the disorder started showing up as early as age 18. By the time he was at the U.N., Petrelli found it difficult to work.
"At the time, I just knew that I was miserable whenever I was at my desk," he says, "and I was in pain and I felt angry and dysregulated and, just, not really myself."
Even after he switched gears to Kitchen Therapy, his health continued to deteriorate. "These spasms in my face were causing something called trigeminal neuralgia," he says. "People call it all kinds of things, like the suicide disease. ... It's a kind of pain that feels inescapable."
Kitchen Therapy's meals were featured on a television show called "The Big Fat Truth," started by a co-creator of "The Biggest Loser." But when the show only lasted one season, Petrelli had to figure out what was next for his business.
"My body was at a point where I had completely run out of batteries," he says. "And I was in bed constantly. And so I just had to close that chapter and basically launch into the unknown."
An estimated 300,000 people may be affected by dystonia in North America, according to the National Organization for Rare Disorders, a patient advocacy nonprofit. Its cause remains unknown, and the disorder has no cure. Depending on the severity, treatments may include medication, physical therapy, and surgery.
For Petrelli, it meant learning to use his body anew.
"You can think of it kind of like a stroke recovery," he says. "In a stroke, a part of the body may become unavailable because it physically was blocked by the stroke. Here, it wasn't physically blocked. It was just forgotten and underused by the brain. So you have to learn a different way of speaking. You have to relearn how to speak, literally. You have to learn how to breathe with both sides of your body."
Over the course of several years, Petrelli was able to find a number of health-care providers worldwide ― in South Korea, in the U.S., and in Canada ― who could help him understand what was happening and realign.
Meanwhile, he began to ask himself questions to reassess his understanding of what work means to him and to who he is.
"My sense of self-worth and my sense of self-esteem were very weak and were very tied to these accomplishments," he says. "And I was confronted with the need to kind of understand, 'Who am I beyond all this? What's the substance beyond the labels, beyond the accomplishments?'"
To do this, Petrelli put himself in a scenario: He imagined a future in which jobs did not exist. How, in that future, would people judge each other and themselves?
He realized that the "gold that is within each one of us" is actually our "our innate good heart, our innate compassion, our innate capacity for love." He began "taking that as the starting point for what my identity is."
These days, Petrelli, who is now living in Montreal with his husband, says, "I have my life back." A full recovery, to the extent that's possible, will take some time, but he's "making a lot of progress."
With the help of the work he's done with his health-care providers and some methods he developed on his own to help his recovery, "I can speak, I can walk, I can chew."
In 2019, Petrelli founded one source of income, Hope for Dystonia, through which he's been teaching other people dealing with similar neurophysiological disorders the techniques he developed for recovery.
Next year he'll be completing a mindfulness meditation teacher certification, and has just founded FedericoPetrelli.com, through which he'll be offering mindfulness instruction and coaching to anyone interested in pursuing "holistic mind-body healing," he says. He hopes the latter will become a regular source of income as well.
He's still motivated to work. But his drive is no longer about fulfilling some prescribed role or proving his worth through accomplishments or vocation.
Instead, he wants to "make sure that what I do to make a living actually leaves a mark that reduces suffering in the world," he says.
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