Producer's notebook:­ how stories can help us make sense of life

As humans we tell stories to make sense of the world. This is a simple statement but one that I keep reflecting on when I think about why I decided to tell Meg Bernard’s story, the story of a woman in her 30s who is trying to make sense of why she has Parkinson’s disease and how the disease will continue to affect her relationship with music.
Meg Bernard, left, and Trish Estabrooks.

As humans we tell stories to make sense of the world. This is a simple statement but one that I keep reflecting on when I think about why I decided to tell Meg Bernard's story, the story of a woman in her 30s who is trying to make sense of why she has Parkinson's disease and how the disease will continue to affect her relationship with music. Why Meg? Why Parkinson's? Why this story now?

As a storyteller I feel it's important — although often painful — to turn the lens on myself and ask the question I so often ask others during interviews: why? The answer is simple: I told Meg's story so that I could make sense of my world, a world where I'm watching my own father live with Parkinson's, a disease that's slowly eroding his independence and his ability to do the things he loves to do in life. In Meg's case, the disease is slowly taking away her ability to play music. In my Dad's case, it's taking away hockey and a rewarding career as a politician. I know that if he didn't have Parkinson's he'd still be knocking on doors talking to constituents, stopping to play ball hockey with kids from the neighbourhood and speaking at high school graduations. I hate that the disease has taken all of this from him. I hate that a disease has changed and will continue to change him.

Meg Bernard
During my first interview with Meg she referred to Parkinson's as her dragon. I could practically hear the beast clawing inside her to get out, to take control over more of her body. I hate the dragon, as Meg does —  for what it has done to my Dad, once strong, once confident. I also hate what it has done to Meg. What I admire about Meg, though, is her ability to first of all name the enemy and second, to have a plan for how she will attack it.

As I say in the documentary, every battle needs an enemy. Meg fights harder, endures more and tests herself each day because of the dragon. My Dad also has a dragon, and through telling Meg's story I realized that my Dad is also fighting his own enemy, with as much strength and confidence as he can muster. I admire him for that and recognize my old Dad, the fighter, thanks to Meg's insights into the disease that they both share.

The process of building a long­form radio piece is a new one for me, as is telling a story that has close personal connections. Emotion pokes out in strange and unexpected places. After recording Meg singing Danny Boy, which was a moving moment for her personally as she realized she could sing along with her younger self, I had to stop and pull over on the highway while driving home. While I recorded Meg singing in her living room I was perfectly composed. At the time, I saw myself as a conduit for her own story, a way to share her beautiful voice and her compelling narrative. Once alone in the confines of my car, I could still hear Meg singing, but this time I thought of my Dad. Tears fell, hard and fast.

I saw Meg's weakness that day. Her dragon sat wedged between the keys of her piano, an instrument she can no longer play, while we spoke. She also showed me the intricacies of her feeding tube and how it keeps her alive. And she told me the story about the time she attended her first support group meeting when she connected with people who were dealing with the  advanced stages of Parkinson's. "I left crying because it's, 'Behold my future.' Seeing people more advanced was terrifying," she said.

Meg is now entering the advanced stages of Parkinson's and sometimes it is terrifying, I can now see that thanks to her honesty and her welcoming me into her own life to tell her story. Just as that support group meeting encouraged Meg to behold her future, doing this story has forced me to behold my Dad's future and my future as a daughter who loves him dearly. Watching Parkinson's take over someone's life is painful, difficult and yes, terrifying. Parkinson's disease will keep stalking both Meg and my Dad. It lives inside them, watching, waiting and occasionally showing itself. Their journeys will be different, their dragons will come and go and the disease ... well, that's something to keep telling stories about, and in Meg's case sing about, while we can.

Video extra

Watch as Meg Bernard, 35, finds her singing voice with the people who know what she's going through in her battle with Parkinson's disease. Meg has early­ onset Parkinson's and was diagnosed with the disease at age 33. Most people with Parkinson's are at least double Meg's age when they are diagnosed. Despite the difference in their ages, this group is an immense support to Meg as she continues on her journey with Parkinson's and continues to navigate her changing relationship with music.

Thanks to CBC videographer, Peter Evans, for his help with this video.

Listen to the full documentary

What if the aging process suddenly speeds up and your ability to do the things you love most begins to slip through your fingers far sooner than expected? For Meg Bernard, her passion in life is music but at age 38 she is losing her ability to perform. 27:30


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