I have been blessed in so many ways that words cannot express. I have people in my life that have chosen to journey with me. Some will simply ask my lovely wife how I am doing or how I am feeling, others will take a more direct approach. Either way, I have something that not everyone has; a circle of care. This phrase, borrowed from an organization that has proven to be instrumental in my care, changed my outlook on how the delivery of care can alter the trajectory of the progression of a degenerative disease. I have a loving family, a neurologist that is nationally recognized as an expert in the treatment of Parkinson’s, and because of my wife’s health insurance, I receive life changing medications at an affordable price. It should come as no surprise, given these as a foundation, that I believe with all my heart that 2016, will be my best year ever.
For the first few years after I was diagnosed, I was waiting for a miracle to happen. I was waiting for something external to change my condition so that I could live a “full and productive” life, when in reality I needed to change something on the inside. Mentally, I was slowly drifting into a state of dormancy without even realizing it. I was starting to envision my life as if I needed to walk with the assistance of a cane, or would be confined to a wheel-chair, even to the point of conceptualizing living in a facility that administered full time care. I was allowing my mind to go down rabbit trails where the possibilities of what might happen were drowning out the voices of reason that were saying something to the contrary. One of my first two doctors, truthfully, I forget which, told me that PD is not always debilitating in everyone’s case. That message was lost, in part, to the physical changes I was beginning to experience, changes that could, and soon would be reversed, by a simple modification in my meds. Deep inside, I believed that I was too young to feel this old, I just needed to turn this belief into an action.
I am fortunate that I am married to someone who was willing to walk along side of me to find a new doctor. She wanted me back. Through a series of coincidences, or divine interventions depending on one’s theological world view, I “found” a great doctor. That doctor then prescribed a great drug regimen. The miracle that I was waiting for did happen, I was beginning to resume a life of normalcy. Physically, I was improving, but still not emotionally or psychologically. I needed a miracle that would take away the hurt on the inside as well. But ever so slowly, I began to really see the reality of the world around me and realized that there are a lot of people with medical conditions, many much worse than my own, who live full and rewarding lives. They are raising their children, they participate in social functions and hold jobs.
Charles Krauthammer has been paralyzed since his early 20’s and requires the use of a wheelchair yet in his book Things that Matter, he can write about how full his life has been. His condition didn’t diminish his goals. I have come to realize that I too, in spite of my PD, am driven to have a full life.
The transformation on the inside was beginning to happen; it just needed to be nurtured. I needed to develop the perseverance that can only come from answering the “why” question, “I want to thrive in the face of this adversity because…” Once I found the answer to “because…” the rest was doable. Articulating the “why” was much harder than the “how!” I didn’t expect a miracle to happen, but it did. Maybe a better way to put it is that I allowed a miracle to happen. When it began, I got out of the way and I let it.
I still have an active role in this transformation, I need to maintain a positive attitude and resist the negative thoughts and the voices of doom and gloom. I can no longer drift through life and expect positive life changing events to fall out of nowhere. They may, but I can’t expect them to. I have to create a mindset that can graciously accept the notion that I am so much more that a middle-aged man with PD. It sounds a bit flakey, but my physical healing started when my doctor provided me the resources to allow my own desires of emotional healing to take hold.
I would never have gotten to this place alone; my circle of care had to step in and intervene. And I had to allow them too. Like I said, I have been more blessed than I deserve, and I owe a debt of gratitude to so many.