The healing power of storytelling has helped me make sense of the chaos
After I wrote my sister's obituary, I decided to write more about CF
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My column, “Mutations & Conversations,” was first launched in 2018 after I observed Cystic Fibrosis Awareness Month by writing a blog post every day in May about living with cystic fibrosis (CF).
This decision to write this series was made in the midst of grief: My sister, Alyssa, had died less than two months earlier from chronic rejection following lung transplants for CF. She was 29.
My sister and I were close. She knew me well, and knew that I loved writing. She thought I was good at it. She encouraged me, even though I worried that people would think I was self-absorbed or narcissistic for wanting people to read what I had to say. Sadly, it took Alyssa’s death for me to realize that none of that mattered. In my grief, I realized that, if I wanted to write, I should. At the very least, I felt that I could do it in her honor.
What we take from it
Another reason I’d held back from writing was my fear that I would live to grieve my sister. I knew she and my parents would read whatever I wrote, and it felt wrong and selfish to broach the topic and anticipate the possibility.
But she did die, and my parents’ lives, along with mine, spun into chaos. I wrote my sister’s obituary — an honor, but also its own special horror. She loved fashion, so I recorded her eulogy in her closet, complete with outfit changes I knew she would’ve loved. I feel a lot of pride looking back at the 23-year-old Tré who embraced these opportunities to do justice to Alyssa’s life. I wanted to make sure I honored her and told her story. Within a couple of months, I would decide to write more about CF and what it’s like to live with this disease.
We’ve all heard the saying, “Everything happens for a reason.” I know people who say it mean well, but it’s hard to make sense of that when you grow up thinking you’re going to die before adulthood as you visit your sister in the hospital. What could be the reason for something as horrific as CF?
What I’ve come to learn is that this saying is true, in a way. It isn’t so much that everything happens for a reason, which suggests that things must happen for a specific reason. Instead, I think there is a much more poetic and beautiful way of looking at it — that things happen, and then we get to decide what that reason is and what we are going to take from it.
Telling my story
And that’s what storytelling is. It’s taking what we experience, giving ourselves the space to ponder and reflect on that experience, and trusting that we are capable of weathering what life throws at us. We get to tell the story of our lives.
When I think back over the last eight years since my sister’s death, writing — and storytelling, especially — has been instrumental in how I’ve processed and made sense of the chaos. Writing her obituary and her eulogy, writing more about CF, and writing this column — in its initial iteration, and now this one — have been healing for me. It’s turned chaos into something that makes far more sense and has far more meaning.
Storytelling looks different for everybody. I’m not encouraging everybody to tell their stories the same way I am. It doesn’t need to be public, nor does it need to be in writing. It might be recounting something in a journal, it might be producing music or painting, it might be crafting a PowerPoint deck that you show to your dog. What matters is reflecting on your experiences to begin making sense of them.
I encourage you to take some time to do this. It just might be more healing than you realize.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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