Ten years ago, I was blithely ignorant. About my future. About people with disabilities. About the hidden benefits that came with my teaching position. About Parkinson’s disease. Unaware of the dramatic turn that was about to take place in my existence.
Ten years ago, a doctor asked innocuously about the slight tremor in my right leg. I was only vaguely aware of it…..could make the twitching stop just by thinking about it. He sent me for an appointment with the local neurologist …. An appointment I put off because of big (brave??) plans to drive my mother and her younger sister (both were seasoned octogenarians….) north into Minnesota to their stomping grounds at a cabin on a lake north of the twin cities.
I was aware of some strange details: while swimming the traditional half mile across Sugar Lake, I struggled to stay on course, pulling dramatically to the left as I swam. At the organ bench, it was getting harder to play “clean.” I found myself tripping over notes in favorite hymns that I had played for years. Handwriting was growing difficult as well…my once beautiful script was turning into inelegant scrawl… In my naivete, it never occurred to me that all these little irritants were part of a much larger issue….
Ed and I had just moved into a wonderful space on Pine Road, and I was eager to begin landscaping our 2.5 acres. We planted a rose garden, and began planning the landscaping for the front of our new home. As I photographed the first rose blooms with my new DSLR camera, I could not know how precious those developing camera skills would become. Nor did I realize then just how valuable the “all on one level” layout of our new home would be.
I eventually kept that neurology appointment, going as a “lamb led to the slaughter.” The doctor’s diagnosis ( “I’m 99% certain you have Parkinson’s Disease.”) introduced me to the reality of panic attacks, and the horrifying realization that nothing would ever be the same. In the coming months, as I researched, read, asked questions, and made the rounds of an ever-growing list of doctors and specialists, I learned that there was nothing that could cure me. Nothing that could stop the progression. Nothing to prevent this interloper from gradually, ruthlessly stripping from me many things that I enjoyed doing.
Ten years ago, I took on a new mantle, unwittingly and unwillingly, without any choice. This new journey brought with it an all-important decision; one that has to be reconsidered nearly every day: Is the proverbial glass as half empty or half full? Is it a stop light or a go light? Do I dwell on what is lost, or look for new perspectives, maybe even savoring new ideas or opportunities? Does Parkinson’s define who I am? Or does it serve as a catalyst, prompting me to think outside my own proverbial box?
Let me be honest here: I am not superhuman! Not an angel nor a saint. Sometimes, I am afraid. Sometimes, angry at what I have lost. Sometimes, overwhelmed by grief. I miss my classroom and my students. I miss playing the pipe organ and singing…I can no longer physically make music. I ache to perform again and am repeatedly devastated with the realization that it just is not going to happen…ever! With each fall, each setback, each loss, I sense the growing concern and protectiveness of loved ones. I loathe what this illness is doing to all of us.
Ten years, the first decade of this “decades long” diagnosis. I am different: older, wiser, less-stressed. I have explored new artistic avenues (things that may have never entered my mind before), enjoyed successful competitions in photography, learned to make teddy bears from old fur coats. I’ve learned to think my way out of a “blue funk” as I color extravagantly detailed pictures, go for walks, try new exercises. I have met new friends and found fulfillment as I work to make life easier for others with serious medical issues. I have been very fortunate during most of the journey, reaping the rewards of countless benefactors…those Parkinson’s patients who have gone before me, testing new drugs and procedures. And the brilliant doctors, neurologists, movement specialists, and scientists who have passionately searched for answers and solutions. And there are the untold thousands of friends, neighbors and fellow citizens who have generously given to fund the research.
So now, as I enjoy the wealth of research…as I obediently take the drug regimen custom fit for me….as the Boston Scientific brain stimulator works silently inside my head, canceling the tremors and much of the rigidity….well, now it’s my turn to give back. Fund raising is not my usual forte, yet it is a challenge that I cannot ignore. It will culminate in what is called “Parkinson’s Moving Day.” the annual national fund raiser for the Parkinson’s Foundation. One of the events will be held in Winston-Salem, not too far from my home. Even many of the medical care providers (who, incidentally, have become like a second family to me) will be involved. On Saturday, April 28, we will gather as a community from 9:00 to 12:00 for a morning of walking, moving, learning, playing – as we raise awareness and gather funds to help the next generation of Parkinson’s patients.
SO what happens in the two months between now and then? I need to build a team who will commit to a Saturday morning in April immersed in the PD community, who can meet with me at least once for some initial planning early in March, who are willing to share by any and all means possible the absolute necessity of funding continuing research. I need team members who can help me get past my own personal hesitancy to ask for money….Who are willing to join the “Spunky Spencers” in a quest for $1500 for Parkinson’s.
Will you join me? Any donation will be most welcome. New team members are welcome too! You can register, join my team and/or make donations by going to this web address: https://movingdaywalk.org/event/moving-day-winston-salem/participant/1704584/
Thanks to all who have been part of this incredible journey. Thanks for your encouragement, your presence, your patience, your understanding. For those of you who have already volunteered, don’t forget to officially sign up as a team member at our website.