After three of their four kids were diagnosed with the incurable disease retinitis pigmentosa, which causes loss of vision, Edith Lemay and Sébastien Pelletier set out on a journey to show their children everything the world has to offer. Chronicled in the documentary Blink (now in select Canadian theatres), we get to see this incredible journey the Montreal family went on, beginning in March 2022.
“It was never our plan to share our story, but a lot of people approached us saying, ‘Oh, can we do a documentary?'” Lemay explained to Yahoo Canada. “So after one or two you say, OK maybe there’s something interesting in our story.”
The filmmakers the family trusted to tell their story were Edmund Stenson and Daniel Roher.
“The deciding factor was that, well if we can document it for our kids, it would be great,” Pelletier added. “But there was not much more thought than that.”
Lemay and Pelletier have four children, Mia, Léo, Colin and Laurent. Mia is currently 13, Léo is 11, Colin is nine and Laurent is seven years old. In order to navigate where they were going to travel, Lemay and Pelletier told their kids to make a list of all the things they wanted to see.
The list included:
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Swimming with dolphins (Mia)
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Hot-air ballooning in Cappadocia (Edith)
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Sleeping on a train (Colin)
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See elephants (Léo)
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Hiking for days (Sébastien)
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Horseback riding in Mongolia (Mia)
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Try surfing (Mia)
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See a sunrise on a mountain (Edith)
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See Pokémons (Léo)
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Visit the historic site of Angkor Wat (Sébastien)
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Eat ice cream (Colin)
“It was really at the beginning, with the diagnosis, we were trying to get into action,” Lemay said. “For me, the way to cope with the situation is find a solution.”
“I wanted to teach them how to cope with it for the future and a specialist told me the best thing you can do at this point is to fill their visual memory. And they talked about seeing giraffes and elephant in books. So we’re like, oh that’s a good idea, but we’ll do it in real life. And it went from like one Safari trip to, oh we can add that and this, and go see this thing. So we’re like, OK there’s too much to do and see, let’s take [a] whole year.”
What makes Blink unique is that the film is very much not a travelogue, but really focuses on this family unit.
“It was in those early experiences with the family, getting to know them and the children, and realizing that there was a deeper emotional core to the story,” Stenson said. “Yes, retinitis pigmentosa is the kind of genesis of the trip, but I think what our film does, and what I loved about the family, is it says something more universal about when you are dealt an unexpected blow, or when the future looks differently to how you had expected it, … what do you do with that decision?”
“Because to me, that says something about who you are and the kind of life you want to model for your kids. And I think that, for me, was the deeper truth that really inspired me as a starting point for the film.”
What is retinitis pigmentosa?
Retinitis pigmentosa is a disease that’s part of a group of genetic disorders that cause vision loss, due to the cells in the retina slowly breaking down over time.
Symptoms for individuals born with retinitis pigmentosa begin when they’re children and the majority of people diagnosed with the disease will lose almost all of their vision. Symptoms can include loss of night vision, issues with colour vision, tunnel vision or loss of central vision.
There is no cure for retinitis pigmentosa, but there are visual aids that can assist individuals with low vision with making the most out of their sight.
Understanding that blindness is a spectrum
Where Blink also shines is in the way we get to see really pure and authentic moments of the younger children figuring out what blindness means, a discovery that we may take for granted as adults.
“One of my favourite moments in the film is when Colin says, ‘I’m going to get a guide cat,'” Stenson highlighted. “I think what it says to me too is, as filmmakers and as a general audience, we all have a very vague sense of vision, of visual impairment, and I think that the kids responses, and the beautiful innocence and irreverence of those responses, kind of throw into starker relief the bigger reality, which is, when we all sit down and think about it, we’re like, ‘Oh yeah, blindness is a spectrum. Oh yeah, there’s not just this light switching on and off.'”
“So for us as filmmakers, I think it was an opportunity to softly include maybe a bigger point about how, generally, us included, maybe lack an understanding of that, and that was a learning process for us on the team. And I think also, there’s something disarming and charming about the kids’ responses, because you know, in a sense, everything’s going to be OK when you can have an attitude like theirs.”
Everything’s going to be OK when you can have an attitude like theirs.
Lemay and Pelletier shared that they also didn’t initially realize how all their children interpreted the meaning of blindness.
“We told Mia about the diagnosis, but the two other ones were too young to understand, they were three and one at the time, ” Lemay explained. “But then they would grow older knowing that’s what’s going to happen. We knew they knew, but we didn’t think, ‘Oh, they don’t understand everything.’ They didn’t ask questions.”
“Right now it affects them so little in their day-to-day, so it’s not present like in our mind all the time. It’s just those little moments, which just brings you back to that diagnosis, and you need to answer their questions as [normally as] possible. You don’t want them to feel that you’re sad and that it’s not fair. I didn’t want to link the diagnosis to any negative emotion. I just wanted them to feel that, OK, that’s their path. It’s OK.”
“Since we told Mia, she was seven, and she acted so mature about it and took it so well that, for us, we didn’t go the step further of really sitting down with all of them,” Pelletier added. “We do talk about it, but more casually, and it’s more a part of their life now.”