How do you communicate, and even more importantly connect, with someone who has almost no ability to do so? And what kind of toll does that take on a person when the human being happens to be their son?
These are among the big questions asked in The Boy in the Moon, Emil Sher’s play based on a book by Canadian journalist Ian Brown.
At the heart of Brown’s award-winning memoir, subtitled A Father’s Search for His Disabled Son, is Walker, the second child of Brown and his Canadian writer-wife Johanna Schneller. Walker was born with Cardiofaciocutaneous (CFC) syndrome, a rare genetic condition that left him unable to talk, eat, or care for himself.
“One of the reasons that I was so drawn to the story is that, central to Ian’s journey, is the question ‘What is the meaning of this boy’s life?’ ” Sher says, on the line from his Toronto home. “When you use a conventional yardstick, if you don’t measure up, it’s almost like you’re just not counted. The reason that I found Ian’s book so profound, moving, and affecting, certainly as a parent, is that, in asking, ‘What is the meaning of this child’s life?’, it’s also asking ‘What is the meaning of mine?’ ”
After his birth, doctors had to install a tube into Walker’s stomach as he couldn’t eat or swallow. At age 2 he began viciously hitting himself, unable to stop despite the pain. Now in his 20s and living in an assisted-living home, he has the mind of a two-year-old, his intellectual challenges leaving his parents with questions that have reshaped their lives.
A big one is how to relate to someone you love when there’s no way to know if they know they are loved.
“The play is about kickstarting the conversation, and that can either be between people, or within yourself,” Sher says. “That’s another reason that I was drawn to Ian’s story. Parents will go ‘I don’t have a Walker in my life. But what if I did? What would have I done?’ ”
The Boy in the Moon, which in Vancouver will feature Marcus Youssef as Ian Brown and Meghan Gardiner as Johanna Schneller, addresses details like the complicated feeding process for a child with CFC. From there the two main characters talk about the struggles, realities, and rewards of raising a child with profound challenges. A big part of the narrative is the effect that having a child with special needs can have on a family, with Walker’s sister Hayley (played in Vancouver by Synthia Yusuf), also part of the production.
Noting that Walker has been cared for by an extended team that includes not only his parents, but doctors and caregivers, Sher says,
“When I looked at Ian’s book, as much as I loved it, I thought ‘This man did not raise his two children, Hayley and Walker, on his own.’ Another playwright might have chosen to make it literally a one-man show. I had no interest in that.
“I wanted conflict beyond internal conflict,” he continues. “So as much as Ian grappled with these questions, let’s have his wife on-stage, because it’s essential to have Johanna Schneller’s voice as part of the equation.”
Instead of taking full credit for The Boy in the Moon, Sher suggests that he acted as more of a tailor, taking Brown’s book and then cutting it up in a new way for live (and now virtual) audiences. That’s likely selling himself short, with the playwright revealing that he conducted interviews not only with Walker’s parents during the creative process, but also his sister and even the family nanny, Olga.
“While this is verbatim, documentary theatre, there were two bits of original material that I added,” Sher says. “There’s a fight scene, which goes back to not wanting to see Ian alone on-stage. Let’s see a couple on this journey together. How could they not fight? It’s a miracle they are still together because the healthiest of marriages often dissolve when you have a disabled child.”
And then there are larger issues, including how we deal with those who are different than us. The power of Brown’s story, and of the play, is that there are no easy answers.
“The worst thing you can do with theatre and storytelling is go ‘Now that we’ve given you the questions, we’re going to spoon feed you the answers,’ ” Sher opines.
The one character we don’t see, except for in photographs, is Walker.
“The wrong way to do it would be to hire an actor to play Walker,” Sher says. “Walker is mobile, so you could have him on-stage, but I’m worried it would be a distraction. And this leads us back to one of Ian’s big questions. About how this is not about the surface of a person. You have to dig deeper sometimes—ask yourself who the person in front of us really is.”
Asked what he hopes audiences take away from The Boy in the Moon, Sher suggests that the goal of the work is as simple as it is ambitious.
“It’s our journey and responsibilty to come up with the same answers as the parents who love Walker,” Sher says. “I’ve never seen this as a play about getting into the mindset about Walker, who can’t express himself. To me it’s about the parents and the journey that they have made. There’s no claim that they are speaking for their son. They can’t. And if they could. there wouldn’t be much of a journey.”