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Boy in the Moon reh-photo by Dahli Lisa Repo-Martell as Johanna Schneller, David Storch as Ian Brown, and the young woman in a few images is Kelly McNamee who plays their daughter Hayley.

Johanna Schneller and Ian Brown's 20-year-old son, Walker, has what they call "a cocktail-party personality" – charming, but multiple-sided. In the first year of his life, Walker was diagnosed with Cardiofaciocutaneous Syndrome (CFC), a rare genetic disease that profoundly affects both physical and intellectual development.

Brown first documented his and Schneller's experience raising Walker in a series of Globe and Mail features, which eventually became his award-winning 2009 memoir, The Boy in the Moon: A Father's Search for His Disabled Son.

Some years later, playwright Emil Sher adapted the book into a frank piece of verbatim theatre; from life, to column, to book, to stage.

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As with Brown's finely documented journey to know Walker within the boundaries of CFC, these versions attempt to make legible something that is anything but easy to read or write.

First performed at Ottawa's Great Canadian Theatre Company in 2014, Sher's adaptation is now Crow's Theatre's season closer, directed by Chris Abraham, starring David Storch as Brown, Liisa Repo-Martell as Schneller and Kelly McNamee as their daughter Hayley.

On the morning of its first preview, the real-life couple and their stage doubles (also parents) met to discuss the question of replication versus interpretation, fears related to ego and the riddle of knowing and loving a child by way of omission.

Liisa Repo-Martell: As an actor, I think you always feel like an advocate for your character. You want people to understand them in the richest, most complex and truest way. [With this role] I also feel protective in a way that I wouldn't feel if I were playing a Chekhov character.

Johanna Schneller: It all started with Emil Sher – who was so respectful and gentle in his interviewing. I think both [Ian and I] were very moved by how careful everybody was to make sure that we were fairly represented.

David Storch: It's daunting knowing that actual Ian will be there.

Ian Brown: It's daunting on the other side, too, because the concern is that I will finally see myself objectively – what I did, how I behaved in those days. What I thought. Not to mention bizarre physical mannerisms – head cockings, leg twistings, rocking back and forth, all of which I'm sure David will capture brilliantly.

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LRP: A fundamental truth is that we're never going to get it right. Our raw material is ourselves, and our own experience and imagination. So it's an act of empathy, but we'll never reflect [your] exact experience. I think I've approached it not trying to do impressions or imitations, but as if it's an alternate universe where all these things happened to me.

JS: I think you can get it right, and from what I've seen, you have. The way you get it right, as actors, is to be true to the intention. And I really feel that. I feel your desire to get at the truth of what Ian and Emil were saying about this story. It doesn't matter if they're not exact replicas of us.

IB: The added irony of it is that you're trying to give voice to this person, Walker, who has no voice. It's all a bit of a –

LRP: House of mirrors.

JS: So far, everyone I've seen in these parts has played them so fully that I have [mortifyingly] cried. I expect that if I saw it every day for the rest of my life, I would probably cry. Mostly because of something that always makes me cry in any movie or play, which are people trying their best and not necessarily making it.

IB: Walker used to do this thing when he was in pain – hitting his head, which would make it hurt more, and he would cry even harder. You could see that he was trying to fix it. It was the act of him trying to fix it and thinking that he could make it better, therefore hurting himself more, that would collapse my chest and make me start to cry. But it was the hope of it.

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LRP: It's a really powerful, I would say, altered state to inhabit [Johanna and Ian]. More than other projects, one is inspired to let go of one's ego and feel swept up in the act of sharing the story. It feels like we're calling on people's secret pain, and living it for them in some way.

DS: Yes [the experiences] that are often too painful or too private to actually feel you want to burden other people with, or whatever other psychological hang-ups you have about sharing such things.

JS: When the articles in The Globe first came out, people kept coming up to us and saying, "I read that story about Walker!" Then they'd add, "My uncle's sick," or something. You realize that everyone is carrying something around, and nobody is talking about it. I think it's good, not only in terms of kids like Walker, but in talking about the imperfectability of life, and the need to connect with people in those imperfections. Emil making this play, and Liisa and David acting in this play, spreads what I'm going to fearlessly say is goodness.

DS: I think it's goodness, too, and I think an essential quality of [Ian's] writing is the generosity toward the reader, expressed through honesty about your lived experience; one of the central facts of your life – Walker.

IB: How do you deal with that [in performance]? Something that's too painful?

DS: It's a funny question, because we're going through the pretend pain. We're imagining your struggle. We try to root it somewhere in our own experience, and then there's the power of the imagination to meet you halfway.

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LRP: Acting is an interpretive art. It's never a blank page. We always have the blueprint of a script, so that's the frame within which we're creating. Because it's verbatim, there's a lot revealed in [playwright Sher's] choice of words and punctuation that we don't even know about, or that we didn't have to work toward.

IB: Every time I think about this, or talk to [Liisa and David] even, I see it as an exercise. There's a way out of grief. I wrote the book because I was convinced that there was something important there. There is something about being with Walker that equalizes us, makes us the same. So we have to reinvent companionship. And I always thought that was important; that he had something to give on that level. Johanna, for a long time, disagreed with me. She'd say, "He's not Gandhi. His value does not come from helping everybody else." But when I see this, and I see these two, this effort, Emil's writing and Chris's direction? That makes me think it's not just something I say to make myself feel better. It's real.

DS: That Walker is important.

LRP: He did a charm offensive on us. He was at his kingliest, most gracious self. We had a really delightful time.

JS: He took each one of them by the hand and graced them. He has a cocktail-party personality.

IB: Yes, and like most cocktail-party personalities, he has a totally other side [laughter].

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JS: You guys mentioned being changed by the process or the material. I wonder if you could put that into words?

DS: Meeting Walker made this whole process much more complex for me. He wasn't what I had imagined. There was such light and life coming out of him that it made all the questions of the play that much harder to answer.

IB: There was a geneticist who I met at one point and I asked him, "Will I be able to find Walker's mind?" And he said, "There are people who believe that the mind exists in the genes, but [I] believe that the mind exists between people."

Courage, humour, endeavour. "Those only exist when a brain engages with another brain." This is not some idiot like me saying it – this is a guy who has studied the mind all his life! When you see [Liisa and David] perform, you realize that's exactly what's happening.

LRP: There are spooky elements to doing it. That's why I said "altered state," somehow. When you see people in extremis, dealing with something that doesn't have any good answers, you understand that there are so many problems like that. I think this piece requires you to constantly interrogate yourself, which is probably not true of a lot of things.

IB: It's like Trump.

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JS: I was going to say that it's like life!

This interview has been edited and condensed.

The Boy in the Moon runs through May 27 at Crow's Theatre in Toronto.

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