Ivan keeps coming back from losses, this time with a memoir

By Robin Koczerginski

At 30 years old, Ivan Sharma has already lived many lives. As someone who has Duchenne muscular dystrophy, his journey has involved the loss of physical skills like walking and the emotions that come with that. Duchenne is a genetic disorder that gradually weakens the body's muscles.

But today, Ivan is stepping into a new role: author and motivational speaker. His new book, The Limitless Journey: From Limited to Limitless, chronicles his path from a place of deep hopelessness to a life defined by advocacy, artistic expression, and potential. 

The weight of the word 'limited'

For a long time, Ivan says his worldview was defined by a single, painful word: limited. 

"That would be in the deep end where I didn't have hope at the time," Ivan recalls of his younger years. "Even minimal movements... I couldn't get past the physical pain... and looking at other kids running around and just crying, 'Why can't I? Why aren't I like that?'"

At certain times he didn't get the supports he needed, Ivan says, leading to a loss of hope. 

The turning point didn’t come from a grand medical intervention, but from the quiet, persistent patience of his caretaker George. Rather than forcing Ivan to change, George met him where he was, gently pushing him out of his comfort zone through activities like baking and swimming. 

"He put up with me being fussy because I didn't believe in myself," Ivan says. By redirecting Ivan’s focus away from his circumstances and into engaging activities, he helped lay the groundwork for a mindset shift.

Finding freedom in the arts

As Ivan continued to learn about himself, he discovered a powerful passion: the arts. Ivan threw himself into drama, dancing, piano, and Indian classical singing. For Ivan, art wasn't just a hobby; it was a form of meditation and expression. "When it came to dancing, because I couldn't have some of the movements regular people do, it was more so the expression on my face," he explains. "Performing and making others happy made me feel happy."

Whether he was acting on stage, volunteering to play video games with Holland Bloorview inpatients, or navigating the city through the hospital’s skill-building programs, each small win helped him grow into his own identity.

The shifting landscape of identity

A central theme in Ivan's book is the evolution of his identity. Like many people with disabilities, his relationship with his diagnosis has been complex and ever-changing.

"When I was more physically able and walking, it was the identity of a child just having fun," he reflects. "Then being labelled with the wheelchair when I was not able to walk anymore translated into, 'I can't do anything.' But eventually, that pivoted to 'I can do some things.'"

Today, Ivan views his disability as just one part of his multifaceted identity. However, he is refreshingly honest about the ongoing nature of this journey. "When you're capable, you think you're more than the disability. But on the days you're not, you think, 'I am the disability and nothing else.'"

Hard-earned advice for youth and parents

Having navigated the dark waters of depression and physical decline, Ivan’s advice for young people facing similar genetic conditions is rooted in empathy. 

"Just don't lose hope," he says. "There will be a moment of lots of uncertainty, and there will be hard days, and there will be pain. But that's not what life has to offer. That can be the beginning, but it can also transition into something much more beautiful—as long as you can convince yourself not to give up at that moment."

For parents, his advice is direct and impassioned. He credits much of his own success to a mother who relentlessly believed in him, but he has also seen the devastating effects of parental abandonment.

"Please don't abandon your child when they're in that fragile state," Ivan urges. "Be there with them. Support your child as much as possible." At the same time, he notes the importance of balance: "Don't love too much, either. That kind of hinders your child as well. It’s about finding that balance between supporting them and letting them be."

Breaking down systemic barriers

Ivan’s insight isn't just personal; it’s systemic. Reflecting on his transition from pediatric to adult healthcare, he points out the frustrating fragmentation of the medical system. 

"You have one department for your eyes, another hospital for your heart, another for your respiratory, and another for the neuromuscular team," he says. While he considers himself fortunate to have had a relatively smooth transition, he knows many fall through the cracks. "It's frustrating having to go through the family doctor to get them to arrange everything. We need a one-stop shop where all the things are accessible, where you don't have to run around to different doctors."

The power of sharing

Writing The Limitless Journey was not without its emotional toll. Ivan admits that revisiting painful memories sometimes left him unable to write for weeks. He ultimately sought out therapy to process the emotional weight of his past. 

However, the act of sharing his story has brought its own reward. "The more I talk about myself, the less pressure it feels," he shares. "It's loosening its grip on me. I don't feel the emotional influence of those situations as much." 

Today, Ivan is embracing his post book launch limbo—a transitional space he is navigating with optimism. His goal for the next decade is clear: to become an international motivational speaker and a "limitless breakthrough coach," helping others unlock their potential.

Through his book and his voice, Ivan is proving that while a diagnosis may shape a life, it doesn't have to confine it.

"No matter how you get punched down... it's like getting up," Ivan says. "Like the scientific refractory period, once you get down, how quickly can you get up? ... It will feel scary and not always easy. But as long as you find a way to be optimistic and believe everything will be fine and not to give up, I think that's what resilience comes down to for me."

Check out The Limitless Journey: From Limited to Limitless. You can also borrow it from Holland Bloorview's library on the main floor. Like this content? Sign up for our monthly BLOOM e-letter or take our short BLOOM survey.