LIghts, Camera, Action
As mentioned in last week’s column , my family’s story has been featured in a short documentary entitled, “My Brother,” by filmmaker Edwin Mah . Since the film will be submitted to festivals, it’s not available for public viewing at present. But I can share how I felt, and what I experienced in watching it.
Viewing the documentary was, in a word, wild. Even though I’d actively participated each step of the way—digging up home videos, scanning old photos, doing myriad interviews—I was still shocked to see the material on-screen. There was a definite sense of self-consciousness and vulnerability. (People are going to see me at that long-ago dance recital in a bright orange hula skirt!) But I reminded myself that that was the point of the whole project—to share the story of my relationship with Willie, in hopes that other siblings and family members might feel a sense of solidarity and understanding. To be sure, each family’s experience of autism is unique and complex, but certain themes in our story are universal.
One common challenge, for example, is that of parental attention, and how it’s shared between autistic and non-autistic children. There’s a poignant part of the documentary that touches on this topic. The scene in question is actually a home video, featuring me in a figure skating competition. At the time, skating was my life. I dreamed of going to the Olympics and being the next Michelle Kwan, and I willingly sprang (well, stumbled) out of bed at 5:00 a.m. in order to be on the ice by 6:00.
In the home video, I’m wearing a royal blue skating dress. It’s secondhand outfit—skating dresses are expensive—but it fits perfectly, and the sequins make it sparkle like new. My mother has helped with makeup, and fixed my hair in an elegant braid. My father has shuttled me to early-morning practices, and he and my mom have worked to pay for ice time and private lessons. This, therefore, isn’t just my moment. It’s our moment.
Then, in the middle of my program, there’s a cry, which sounds close to the camera. It calls to mind a baby fussing. In the documentary, this subtitle flashes: [Willie crying.]
“That’s not Willie crying … that sounds like a baby,” I say to my husband as we stare at the screen together. I’m wrong, though. That pitiful sound is coming from a younger Willie, as evinced by the dialogue that follows.
Dad (encouraging tone): It’s nothing!
Dad: That’s right. That’s right, Willie. No crying.
Willie: Get away from me. (This is a line from a movie, one that Willie repeats when he’s upset.)
Dad: Willie, as soon as Caroline’s finished skating, then you can use the camera.
No, it’s Daddy’s turn.
Willie: It makes me … (The subtitle says, “unintelligible,” but I’m pretty sure the word that follows is “angry.”)
It’s surreal, watching this scene. So much is swirling within … frustration, incredulity, and, mostly, awe. Awe of my parents, who navigated moments like this every single day. Awe of Willie, that he kept it together even though he was upset that the focus was on me. And even awe of my past self, skating her heart out, with no thought to a scene in the stands.
Later in the film, I’m calling home, calling to talk to Willie. As the scene progresses, I gasp; I didn’t know that the filmmaker managed to pick up the audio from our phone conversation.
Our dialogue goes like this:
Willie [enthusiastically]: Hi Caroline!
Me [warmly]: Hi Willie! How are you?
Willie: I’m doing good.
Me: Did you have a good day at work today?
Willie: I had a good day at work.
Me: Are you happy I’m coming to visit?
The subtitles mark Willie’s next line as “unintelligible,” but it wasn’t, not to me. The sound was muffled, but I heard him.
“I’m happy,” I repeat to my husband. “That’s what he just said.”
The words stuck in my throat. After everything we’ve been through, after everything I’d seen on film … I’m happy. It seemed at once the simplest of statements, and the most profound.