I’ve been running, and/or hiding ever since August of 2008, when I first heard the words, “I’m about 99 % certain you have Parkinson’s Disease,” aimed in my direction. There was an hour of panic, sitting in the car in the parking lot, not certain whom to call, feeling totally alone with the word “invalid” racing through my brain. A rush of visions of old folks shaking and drooling swam through my memories, scenes of people who had become objects of pity, as vivid as the day I saw them. Frantically, I rehearsed the relationship between people who were invalids with the other meaning of that word…and I felt a darkness close around my soul such as I had never known before. I cannot be invalid. Ever! My life will continue to have meaning. I will continue to be worth something. I WILL!…
That was the day the running began. Running in a race against time. Running to do all those things I have wanted to do. Running in the hope that I could somehow outrun a new, insidious contender for my life and attention. Hiding from the inevitable.
For the first few months, “Parkinson’s” felt like a foreign word, one that didn’t fit with my roles as elementary school music teacher, or grant writer, organist or gardener. I threw myself into those roles, earning National Board Certification even as I was adjusting to unwelcome new medication. “Teacher of the Year” followed, and somehow I convinced myself that I could get the best of this new companion.
I fought back, looking for timed trials for new treatments and meds. With Duke Medical Center only two hours from home, I braved the traffic and unfamiliar highways, traveling to participate in a clinical trial. Symptoms were mild at that stage. I was aware that my coordination at the organ was slipping, and was thrilled when initial doses of Sinemet gave me back some of the dexterity.
That reprieve was temporary, as I found myself struggling even more in less than a year. I chalked the exhaustion up to trying to do two jobs. School teaching was becoming more and more demanding, and the church job gave me no time to rest on the weekends. Letting go of that dearly beloved position was excruciating, yet necessary if I wanted to maintain my energy in the classroom.
I could not bring myself to leave the church after letting go of the organ. Rather, I suffered on as choir member – grieving every service as I sat so near the bench that had once been mine. That instrument was my voice, the place where I poured out my feelings, sometimes screaming over frustration. Sometimes, filled with gratitude for what I could do. Often times, just content with life.
Once, when there was no one available to play for the service, I looked at the worship guide and discovered we were singing some of my most favorite hymns…..and, asking no one, I simply sat down at the organ and played those hymns during the service. Even as the church moved on, finding others to play, I remained the back up, still able to play occasionally. It was easy to fool myself into thinking that Parkinson’s was not really going to take over my existence.
The school job continued to be difficult, and my ability to cope with changes diminished more rapidly than I realized. It was easy to blame the state government for my frustrations. Yet the stoic acceptance of those issues by my teammates gave me pause – “Why are they not any more upset? How can they just keep working when so much is falling apart around us?” I found myself raging inside as the job I had loved became unbelievably more difficult.
There was a day when a friend and colleague suggested the idea of disability to me. It sounded like an cop out to me. One that I could not legitimately or honestly pursue. After all, my Parkinson’s was mild and well-controlled by the meds. The disability label was closely partnered with invalid in my mind, and it did NOT apply to me – I didn’t need an “out” – I just needed to learn how to streamline my teaching and preparation. I just needed to get more rest and everything would be fine.
By the end of Year Five since diagnosis, the symptoms were becoming difficult to ignore. The meds were being increased at every doctor’s visit. They were wearing off more rapidly and taking longer to take effect. It wasn’t going to be very long before both my colleagues and my students realized that something was really wrong with me.
I had to do something radical, for I was in danger of losing much of my identity and activity. My doctor’s involvement with a clinical trial involving Deep Brain Stimulation (DBS) could not have come at a better time. Unknowingly, I was slamming into the Wall of Reality: Parkinson’s Disease has NO cure. It is progressively degenerative. And, it will destroy your life! My running was about to end.