Riding the Parkinson’s Rollercoaster One Word at A Time
My journal has saved me on more than one occasion. A lot, if I’m being honest. As a result it’s full of beauty, joy, humor and gratitude. It’s also full of hard truths, controversial feelings, half-considered observations, weird story ideas, and writing that really isn’t any good.
It’s exactly what I need.
People intimately affected by Parkinson’s are on the kind of roller coaster that offers every emotion on the spectrum — from pure joy and gratitude to grief that pulls you to the ground. A good friend of mine asked not long ago, “Where do you put it all?” The answer is different for every person with Parkinson’s, care partner or family member…and it depends on what day you ask. But where I often put “it all” is in the receptive pages of my trusty journal.
It never judges. It’s a good listener. And there’s always room for more. It took a bit for me to remember the power of this tool.
I journaled copiously from adolescence to my early 20s. Then during the next couple of decades my entries became sporadic at best. They all started with “I can’t believe how long it’s been since I last wrote in you” and then several lines of self-flagellation for not being a better journal-er. When my husband was diagnosed with Parkinson’s and I caught a glimpse of the long rollercoaster ahead I knew I needed to add this tool back in my tool box. I also knew I had to make a fresh start with it and make it my own.
Because I shifted my relationship with my journal, now any given day it brings me emotional release or clarity, even amidst great confusion and overwhelm. It creates space for me to explore privately, in even the weirdest ways.
It regularly helps me on days I don’t think I need help because it forces me to make time for myself, a particular challenge for care partners and caregivers. Even five minutes helps. When I’m feeling on the brink of burnout or an overreaction, it’s just enough time to jot a few words as I give myself some deep breaths.
My journal’s greatest gift, however, is that it is a place to deepen my relationship with myself. My writing time is a priority because it helps me stay in touch with my needs, my joys, my grief. I adore my son and husband (my PwP), but my writing practice is one way I make sure I don’t lose myself in my caregiving roles.
Shifting Your Expectations
When I tell people about my writing and journaling practice, usually in the context of encouraging them to start, their reactions often involve twisted faces of anxiety. This includes clients and workshop participants seeking ways to make writing more a part of their lives.
I get it. For many of us the word “journaling” comes with a truckload of baggage. Perhaps you were forced to journal against your will in high school literature class, or someone sometime told you how you should do it. Maybe like me you started a journal, haven’t touched it in years, and now believe it would be too difficult to start up again. It’s common to believe that a journal should only include a painstaking record of your goings-on, perfectly composed prose, or your best ideas. Or that your journal should only contain words.
I encourage you to not buy into any of that.
What a journal is not: What anyone else tells you it is.
What a journal is: Whatever you want or need it to be.
A journal is your space, and your writing time is your time. Allow yourself to express what is in your heart or on your mind however you need to that day. If you’re coming to it because of something specific, write about that. If you aren’t sure why you’re coming to it, pull up a random photo or a piece of music online, give yourself ten minutes to write whatever comes up, and see where it takes you. If you’re coming to it with something that can’t be expressed in words just yet, doodle or sketch instead.
When you claim your journal as your own, there’s no wrong way to use it.
In my writing practice I frequently use prompts or simple writing exercises I’ve learned along the way (e.g., the photo and music provocations mentioned above). It always leads me to something waiting to be expressed — sometimes the low-hanging emotional fruit and sometimes pain from four layers down.
Use the tools that are comfortable to you. I use a spiral notebook from the drug store. I have fancy journals and they sit on my bookshelf looking pretty. It gives me permission to write the sloppiest of prose and doesn’t care if I misspelled ‘though’ without the ‘u’ yet again. Handwriting may be difficult and a keyboard may work better for you. Wonderful. Use that.
The more frequently I use my journal, the better I feel. The more conditioned my writing muscles are, the more accessible that self-care tool is when I need it. But if I miss a day or even a few weeks, I just start up again when I’m ready. My journal is always happy to see me and is not marking off the days since I last visited.
I strongly encourage you to shift your expectations for what a journal can be. Even better, don’t have any expectations. It’s there entirely for you, ready for however you may show up, and thrilled you’re giving yourself a few minutes of loving care. It can be a steady, open-minded friend and a valuable tool along your Parkinson’s journey.
Happy writing.
Resources
20 Journaling Prompts for Working with Emotions by Kim Roberts
Writing Down the Bones Deck: 60 Cards to Free the Writer Within by Natalie Goldberg
Rebecca Gifford, is a writer, workshop facilitator, and a podcaster (When Life Gives You Parkinson’s, with her husband and PwP Larry Gifford). She is also an instructor for the BC Brain Wellness Program. Rebecca is a committee member and contributor for the WPC Care Partner Lounge and Care Partner Virtual Talk series. She is also a speaker at WPC 2023 where she will speak about writing, of course.
View the Scientific Program here.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®