Writing About Parkinson’s Disease Is Hard
Writing about Parkinson’s disease is a cumbersome game.
I’m a journalist in my regular life, so I’m no stranger to telling complicated and emotional stories. But my lens is usually focused on others. I tell stories about accomplished athletes and faraway places that don’t affect me directly. But Parkinson’s disease (PD) does.
My last couple of columns revolved around people including Muhammad Ali and James Parkinson. That gave me an outlet to talk about PD without directly involving my dad. Learning about these heroes allowed me to put up a barrier between my heart and my words. But today I’m trying to let you in.
The truth is that sometimes I don’t want to talk about PD because it hurts to turn over these rocks. Talking about the disease forces me to turn inward and evaluate my own feelings. And while I’m incredibly grateful to be here connecting with you all, facing illness isn’t easy — even when it’s not my own.
My kind, sassy dad battles PD every day. And contributing to a column regularly feels like a constant reminder that he’s suffering. As strong and determined as he is, the ebbs and flows of the disease are always evident, glaring back at us like animal eyes in the dark.
An update on Dad
When I call, Dad’s voice sounds changed. It’s like Parkinson’s is forcing his entire body to slow down. His words come a little more slowly. But he’s still quick to laugh.
After his recent deep brain stimulation surgery, he’s finally getting the chance to go back to boxing. The structure, physical fitness, and community play a vital role in his world.
My little brother recently sent a photo of himself and Dad smoking their “old man” pipes. The photo made me giggle because I realized that after a few short weeks, Dad’s hair has grown back.
One of the scariest parts of seeing him undergo deep brain stimulation was that they shaved his hair. His big, fluffy head of hair has been a constant in his life. I’d never seen him without it. So seeing it come back so quickly provided relief, but also a bit of humor. Dad has always had great hair. It’s comforting to know that some things never change.
Which walls should remain standing?
Perhaps the hardest part of writing about PD is that I don’t want to invade corners of my dad’s life that should be kept private. Parkinson’s disease is a thief of so many things. I don’t want to take his privacy away, too.
Even Muhammad Ali talked about wanting to face the disease behind closed doors, because being seen shows the world that you’re struggling. Despite these fears, Ali carried the torch during the 1996 Olympics. Many were inspired by his courage; he shook as he lit the flame.
Like Ali, my dad has provided a window into his life. He opened up his world to us so that maybe someone else wouldn’t feel alone.
I know Dad is proud of me and the conversations we’re starting by talking about PD. I wanted to use this platform to get him to speak up a bit because he isn’t one to complain about his struggles. But I’ve never been someone who wants to create an exposé at the expense of another. That’s the greatest balance we must find as journalists: Does telling a story do more harm than good?
While sometimes I find it hard to verbalize the struggles associated with chronic illness, I also think that starting a conversation is vital to change. Suffering alone seems to increase the pain. Telling our story, however hard it may be, seems to offer a sense of connection to people who can relate.
Note: Parkinson’s 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 another 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 Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.