As I write this reflection, I’m sitting at the Phoenix airport waiting on a rental car to head to Sedona for a women’s healing retreat. Two months ago if you’d have told me this is where I’d be I would’ve said you are crazy. Well, here I am opening up to a whole new adventure of healing inside and outside, making new friends and just experiencing the beauty of Sedona.
To put things in perspective, two days ago I was overwhelmed with stress and anxiety that forced me to stay in bed for most of the day. This is one of the ways that Parkinson’s rears its ugly head in me. When I feel healthy and less pain, I put my body into overdrive knowing it won’t last so I seize the moment. I often pay a price of fatigue and/or pain but I don’t want to miss it. It’s strange how one day I might be able to hike for 2 hours while another I’m barely able to get out of bed or I have so much dystonia in my foot I have to repeatedly stop and sit down on a walk. This is when I try to appreciate the little things. I try to look beyond my cramping and see what’s around me. Invariably I’m intrigued by a bird singing, the leaves blowing in the wind, someone’s laughter or just simply taking in a moment of stillness.
I choose to live by this simple philosophy regarding my Parkinson’s: focus on what I can do versus what I can’t.
This has really helped me through the last six years as I am a doer and I am an active bodied person. I am still that person but have to sometimes put on the brakes. In that moment where I’m pausing I try to be OK with it. Thank God I have a circle of friends that understand this disease very well as they live with it themselves. We communicate through Marco Polo, an online app where you videotape yourself and when someone in the group is ready they can watch your video and respond if they wish to. It has saved me through this COVID-19 quarantine. Simply knowing that there are people who get it and are there to support, listen, laugh or cry is encouraging. It’s an honest and open communication with some wonderful people. They also choose not to quit but lean in and make the most of this life.
Lessons in resilience
I also credit my parents for a wonderful example of resilience, positivity and adventure. Both have endured many hardships and continue to today. Their faith and determination are unparalleled. I’m fortunate to have this framework as my model for life. My dad has late stage Parkinson’s and his grit and will are so admirable. My mom has RSD in one leg and just broke her good foot and ankle in 3 places. While she’s in great pain, she is determined to do it herself, at least give it a try and truly is my greatest witness to resilience while suffering. Important to mention, they both have learned it’s okay to ask for help with grace and gratitude. How lucky am I to have them as my parents and teachers.
I recognize March 23rd as my 6 year anniversary of being diagnosed with Parkinson’s disease. Whether or not this calls for a celebration is debatable. I do celebrate the lives this disease has introduced me to that have made it easier and honestly challenge me at being a better person. I also celebrate my inner strength and spirit that was always there perhaps but now shows itself to me in ways I can be proud. For example, once I was an avid runner and would spend a solid hour per day running for fun, exercise and inner peace. Since some of my symptoms are dystonia and balance issues, I can’t safely run. Plus it’s not enjoyable but painful. After mourning this loss like a dear friend, I took to the notion of “what can I do.” My husband Dan and I took this motivational phrase to a whole new level by moving onto a floating home on the Columbia River. Not only was it our dream to retire there one day but we also love to kayak. It was the best thing we have done since having a family. The daily movement of paddling against the current took away stiffness in my shoulder due to PD but also made me feel stronger. I actually forgot about Parkinson’s while out on the water. I’m forever grateful for our decision. Another interesting thing occurred during COVID-19 quarantine. I decided to finally self publish my book for children and the response has been overwhelming. It just so happens that the message is timely for children coming back to school by helping them breathe deeply in and out with a calming rock on their body to help them feel more calm. It’s also a reminder for me to remember to breathe deeply as well.
I will admit there are times when I am so sore I need to remain in bed or see my Physical Therapist or massage therapist. Mostly I need to keep this body moving. Stretching. Breathing. So like my parents and parky friends I do my best to be in the moment and have the best day possible no matter what comes my way. Today is a gift!