Taking it Back
Photo by Jayma Leavengood on Unsplash
I’m taking back my trip to Joshua Tree.
The one that was stolen in April 2020 by Covid-19. The biggest lesson that Parkinson’s disease has taught me that Covid-19 drove home: Seize the day. You can’t get back time. So, I’m venturing out West, boostered and masked, in the face of Omicron, to meet up with Jody, my best friend of 54 years. We are booking an Airb&b and will spend 3 days in the arid, moon-like scape of Joshua Tree National Park. With my 60th birthday looming (I just turned 58), I push myself to dream big. While I may never see through my earlier plans to trek the Annapurna circuit in Nepal, I can find ways to adapt to more accessible hikes and time spent in nature. I can’t predict how I will fare on our hikes. Walking is my greatest challenge with off times leaving me uncoordinated at best and immobile at worst. I will be armed with my walking sticks and Hoka trail boots to get me through any tough moments and will have food supplies to refuel.
Photo by Nicolas Moscarda on Unsplash
Parkinson’s wants to make my life smaller. And sometimes it does. That said, I’m not going to make it easy. With Parkinson’s, you have to take a leap of faith. It’s much easier to stay at home and play it safe. To conduct life through the computer screen and zoom calls. Those of us with PD have to overcome that tendency to stay put. We have to bypass our internal naysayer, that prevents us from getting out of our comfort zone. I learned from @Mel Robbins (a leading voice in personal development) that if you wait for yourself to feel motivated that will never happen. She says to just count 5-4-3-2-1 and get up and do your exercise or whatever goals you are trying to achieve. This tactic has served me well helping me to overcome mild depression or feeling in a rut. She also recommends trying something new or doing something unexpected every week. I practiced smiling more this week and it made me much more aware of my “masked face” and more engaged with my loved ones. I felt happier.
It’s worth noting the impact writing has had on my ability to heal and take steps to achieve my dreams. Early in my diagnosis, I joined a writing class called “The Write Prescription” taught by author Judith Hannan. The premise was that by telling our “story” we can reframe and reshape our narrative to become more empowered. Writing about our experiences can allow us to access deep emotions that are lying just under the surface and hold us back. Since taking that writing group, I have developed a writing routine in which I journal daily (or as often as I can) and it prompted me to begin a series of stories chronicling what it’s like to live with Young Onset Parkinson’s Disease (YOPD). This became the basis for my blog “Shaking Up Parkinson’s,” which launched this past October and you are reading now.
And now as we approach 2022, I look ahead with optimism, grit, faith and resolve. I vow to continue my writing, set new goals, write down my dreams and be engaged and present. I want to be able to say that I was deliberate in my decisions, allowed for spontaneity and achieved my goals. I won’t let life happen to me.
About Miriam
I share my personal stories to offer a glimpse into what it is like to live with Young Onset Parkinson’s, revealing honest and intimate reflections. Hearing other people’s stories can be a lifeline for many of us living with this neurodegenerative disease. I hope to inspire and educate people living with Parkinson’s and to create community through shared experiences.