I was recently invited to join the board of the New Mexico Parkinson’s Disease Coalition (NMPDC), and the process of considering this invitation has revealed how I feel about time, energy, and my relationship with the world.
I immediately felt a connection with this group, which arose two years ago in the wake of the national “Parkinson’s Disease Foundation’s” decision to pull out of New Mexico. From the perspective of the community left behind, I gather this national decision to withdraw locally seemed sudden and drastic.
As T S Elliot pointed out, sometimes our lives are measured out with coffee spoons, but sometimes we are empowered to change course mid-stream. And for some, change feels like being hurled overboard, and for the rest of their lives they can no longer count on their faculties to hold steady.
For decades I have felt that people with a progressive disability have something important to teach me about the nature of my own life and about the beginnings and endings that mark each milestone along the way. But it’s easy to turn away from looking too closely at the small print of our stay here on Earth. We tell ourselves that we should enjoy things while we can and not darken the light by imagining storms that have not yet blown in.
Meanwhile back in the late ‘80’s—when my mother was affected with dementia and I was developing a friendship with a man with ALS—something shifted in how I viewed my own life. I began to see people who have been struck with a disability—especially those who live with courage in the face of the unwelcome loses that keep coming one after another—as scouts who are sending back reports on what lies ahead for all of us, in one form or another.
I wanted to get closer to these travelers in the twilight and learn from those who have had to look into the shadows in order to find a deeper, abiding light.
Engaging with the disabled and their families for the past quarter century (mainly through Friends in Time, which I co-founded with my friend, Foster, to help others with neurological diseases) provided a context in which I could observe my own arc of life unfolding. And now it has me wondering if I should get involved with this new organization that is trying to fill a gap and provide support for the local Parkinson’s community.
Contemplating this possibility, I’ve been noticing that self-images—that I’m too old, don’t have enough energy or time left in me, and lack the competence required to be useful—warn me away from rashly jumping into something new. At the same time, I find myself hearing a voice inside, urging me to give it a try. That voice seems to be a younger part of myself (or is it an older, wiser part?) that is willing to believe there is still time to pack a box lunch and set out on a new adventure, joining forces with people who are trying to do something worthwhile in our community.
Perhaps the fear that I no longer possess the capacity to contribute effectively is one of those self-fulfilling prophesies. Perhaps if I say “No”, then my fears will come true to accommodate that vision, and I will in fact find myself in the grips of dwindling life energies.
Could it be that a willingness to start something new—especially when it provides a continuation and a celebration of what has enlivened us in the past—may be our best way to swim out into the middle of the flowing river of time? And if we are moving in time and with time, then we will not have to struggle against the energy that time is presenting to each of us every moment of our lives.