Jonathan Pitre and me: How I learned the miracle of Ottawa's Butterfly Boy
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When he was still a young boy, Jonathan Pitre had an older woman approach him in the grocery store as he sat in a shopping cart being pushed by his mother, Tina Boileau.
The woman took in Jonathan’s bandaged body and some of the red, angry blisters on his hands and other exposed skin.
“Oh, mon pauvre enfant,” she exclaimed.
Jonathan sat up straight in his seat, and shot back: “I’m not poor.”
The woman learned, in a heartbeat, what I have come to understand in four years of interviewing and writing about Jonathan: You cannot project your life, and your expectations for it, onto him. He doesn’t want pity; he wants friendship. He doesn’t want you to turn away; he wants you to understand his disease. And he doesn’t spend time feeling sorry for himself: he’s too busy squeezing the nectar out of the life he’s been given.
Jonathan’s life is full of pain, but equally full of love. And while it’s almost impossible to exaggerate the amount of suffering he endures in any given week, Jonathan is a fundamentally happy person.
There’s a force to his joie de vivre. Even when he’s sick and exhausted — as he was last week when I visited him in Minnesota during a chemotherapy session — he can will himself to take part in the world around him: to talk, think, analyze, joke and laugh.
His mother told me recently that she can’t help but be impressed by him.
“With all of the adversity he’s faced, he’s never once looked at me and said, ‘You know what Mom, I would wish to have another life.’ That’s something, because if I was in his shoes, I might wish that I would have somebody else’s life…
“He enjoys every little moment: standing there and looking at a chipmunk brings him so much joy. Watching someone cycle down a street. Not being envious but being happy to see that person do it.
“I think most of us don’t have that kind of maturity.”
Jonathan’s goodness comes across in all of his interviews, and it’s one of the reasons I think his story resonates with so many people.
Yet there’s also a fundamental mystery at the heart of Jonathan’s story, an unexplained miracle of sorts.
I’ve asked him about it again and again during the past four years, and it’s the question I’ll ask him when I see him next: “Where on Earth do you find the strength?
•
I’ve always had the emotional makeup of my Scottish mother, who cries only at funerals. In three decades as a newspaper reporter, I’ve covered with dry eyes plane crashes, car accidents, drownings, murders and child abductions. I’ve travelled to places traumatized by earthquake, hurricane and flood.
I’ve interviewed people paralyzed by rollovers, motorbike and diving accidents, and others shattered in Afghanistan. I’ve written about children with Elephant Man’s disease, Duchenne muscular dystrophy and Larsen Syndrome, a terrible affliction that leads to bone dislocations.
So I was surprised and embarrassed when I couldn’t keep it together in the newsroom as I described to then city editor Jordan Timm my first meeting with 12-year-old Jonathan.
It would not be the last time. Jonathan gets to me.
I was introduced to him because of Alice Ervin. Alice suffered from a severe form of Epidermolysis Bullosa (EB) and, like Jonathan, she had remarkable grace and determination: Alice graduated from Carleton University’s journalism program and was working on her first novel when she died of skin cancer at 25. It’s a common fate for those with severe EB.
When he was still a young boy, Jonathan Pitre had an older woman approach him in the grocery store as he sat in a shopping cart being pushed by his mother, Tina Boileau.
The woman took in Jonathan’s bandaged body and some of the red, angry blisters on his hands and other exposed skin.
“Oh, mon pauvre enfant,” she exclaimed.
Jonathan sat up straight in his seat, and shot back: “I’m not poor.”The woman learned, in a heartbeat, what I have come to understand in four years of interviewing and writing about Jonathan: You cannot project your life, and your expectations for it, onto him. He doesn’t want pity; he wants friendship. He doesn’t want you to turn away; he wants you to understand his disease. And he doesn’t spend time feeling sorry for himself: he’s too busy squeezing the nectar out of the life he’s been given.
Jonathan’s life is full of pain, but equally full of love. And while it’s almost impossible to exaggerate the amount of suffering he endures in any given week, Jonathan is a fundamentally happy person.
There’s a force to his joie de vivre. Even when he’s sick and exhausted — as he was last week when I visited him in Minnesota during a chemotherapy session — he can will himself to take part in the world around him: to talk, think, analyze, joke and laugh.
His mother told me recently that she can’t help but be impressed by him.
“With all of the adversity he’s faced, he’s never once looked at me and said, ‘You know what Mom, I would wish to have another life.’ That’s something, because if I was in his shoes, I might wish that I would have somebody else’s life…
“He enjoys every little moment: standing there and looking at a chipmunk brings him so much joy. Watching someone cycle down a street. Not being envious but being happy to see that person do it.
“I think most of us don’t have that kind of maturity.”
Jonathan’s goodness comes across in all of his interviews, and it’s one of the reasons I think his story resonates with so many people.
Yet there’s also a fundamental mystery at the heart of Jonathan’s story, an unexplained miracle of sorts.
I’ve asked him about it again and again during the past four years, and it’s the question I’ll ask him when I see him next: “Where on Earth do you find the strength?
•
I’ve always had the emotional makeup of my Scottish mother, who cries only at funerals. In three decades as a newspaper reporter, I’ve covered with dry eyes plane crashes, car accidents, drownings, murders and child abductions. I’ve travelled to places traumatized by earthquake, hurricane and flood.
I’ve interviewed people paralyzed by rollovers, motorbike and diving accidents, and others shattered in Afghanistan. I’ve written about children with Elephant Man’s disease, Duchenne muscular dystrophy and Larsen Syndrome, a terrible affliction that leads to bone dislocations.
So I was surprised and embarrassed when I couldn’t keep it together in the newsroom as I described to then city editor Jordan Timm my first meeting with 12-year-old Jonathan.
It would not be the last time. Jonathan gets to me.
I was introduced to him because of Alice Ervin. Alice suffered from a severe form of Epidermolysis Bullosa (EB) and, like Jonathan, she had remarkable grace and determination: Alice graduated from Carleton University’s journalism program and was working on her first novel when she died of skin cancer at 25. It’s a common fate for those with severe EB.
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