Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
By Sheryl Jedlinski
It seems a lifetime ago when I arrived on the Parkinson’s scene fearful of what the future held for me, and hungry for whatever knowledge, coping strategies, and experiences others with Parkinson’s were willing to share. At some point, when I wasn’t looking, I became an “old timer” myself, teaching newbies, as others had taught me, to face this progressive, incurable disease with courage and grace, giving them the confidence to try new things as well as old things in different ways. Accomplishing things we think we cannot do, gives us renewed strength and courage to keep fighting.
Lining my office walls are photographs of many relatives, friends, doctors, and therapists who have helped me to live well with Parkinson’s for 17 years. It takes a village to achieve this, and these are my “village people.” Frozen in time, before Parkinson’s left them with expressionless faces, are my fellow advocates as I remember them from an online grassroots group (the Parkinson Pipeline Project) which challenged big pharma and the government to do right by patients. At the top of our wish list was a seat at the table where decisions were being made for and about us, without us.
Instead of allowing Parkinson’s to limit what we could do, we found new purpose for our lives, did things we never dreamed of doing, and forged friendships that have withstood the test of time and chronic illness. All these years later, the early Pipeliners remain among my closest friends. In the darkness of the night, when the nightmares come, we find each other on line and chat until the sun comes up and the world seems brighter again. In the words of Mark Twain: “Courage is resistance to fear, mastery of fear – not absence of fear.”
The worst part of living with Parkinson’s is helplessly watching friends in more advanced stages decline before their time; knowing that absent a miracle cure, our fate will be the same. This is the sad reality we live with. What helps make it bearable is knowing that new advocates are prepared to take the leadership baton and run with it, keeping alive the memories of the many who came before us and moving us ever closer to the cure.
I am reminded of the lyrics to singer/song writer Sally Fingerett’s, Faces On My Wall ©2004:
“To these faces on my wall, I will protect you.
I make a vow to hold you dear – I’ll speak your name year after year
Your voice will echo in my ear, you left your lessons here inside my head.”
Dear Sheryl, When I was diagnosed and I researched the internet over and over, a photo of you running (or walking) raising your hands and with a big smile – inspired me. An image speaks louder than words, and I was not wrong when I sensed that the woman in the photo was strong, optimistic and a good friend. I am extremely lucky! Patients like you are truly inspiring, and encouraging. You have no idea the outreach of your writing or calls. Yes, I do believe that PD brings a lot of opportunities for friendships and for helping others. We are always someone’s past and someone’s future, but today we are our own “me” and that’s what counts, you are a great friend and an example to follow. 🙂
Thought this was really good…and accurate…the transition mentally from different stages Is challenging…hard to stay upbeat all the time…will be interesting what comments you get…as it always is…am sure many, as always, will identify with this…..tem
I am so glad that I found your blog and you web site. My husband has pd and I have lupus and blogs like yours is a real blessing.
I am happy that I can help you, even in a small way. Wishing you the best