One is the loneliest number

Writers write, singers sing, painters paint, organizers organize, dancers dance and computers compute. What do poets do? Do they poet? I digress. As a writer, I have many scraps of paper with words, phrases, snippets of thought and ideas for stories. Unfortunately, I am not an organizer. These notations are scattered all over the house, the car and even the garage. As Pamela and I, both now into our seventies, continue the Herculean task of trying to downsize, I came across just such a long-forgotten scrap in a box in the garage. The piece of torn-out spiral notebook paper had a nearly complete story— I originally wrote it in stanzas, but I am clearly not a poet. Rereading it after many years, got me thinking about the concept and reality of loneliness and being alone.

Parkinson’s predisposes people to social isolation. Many are embarrassed by their tremor or other physical manifestations of the disease while others experience anxiety or are concerned about their soft voice, urinary or incontinence issues or excess saliva and swallowing difficulties. Non-motor symptoms can affect quality of life as much, or more, than movement issues.

Without a carepartner, life is even more lonely and more difficult and may contribute to depression—sometimes profoundly serious. I have several friends who have lost a partner for various reasons and are now on their own. Of course, many people live without a partner, but it can be a nearly impossible situation for someone moving toward or with advanced Parkinson’s. Imagine not being able to drive oneself to the doctor or grocery store. Imagine having difficulty filling out forms due to micrographia (small, cramped handwriting). Imagine having trouble with buttons, zippers, and belt loops. Without fine motor control, sorting the various pills can be nearly impossible. Even more troubling is a person with Parkinson’s (PWP) whose spouse has decided they do not want to take care of a person with Parkinson’s and leave. “This isn’t what I signed up for,” is an all too common refrain. (Whatever happened to “in sickness and in health”?)

One means to help alleviate this unwanted solitude is participating in a support group. Here in Sandpoint, we are lucky to have a Parkinson’s support group called PowerPAC. PAC is an acronym for Parky’s (what some people call those of us with Parkinson’s) and Care partners. There is even a sub-group just for carepartners. [For more information 208/304-5756]

What can you do? As family, friends, and neighbors, you offer to help--preferably with something tangible or specific. For example, “I’m going to the store. Can I pick something up for you?” Mow their lawn. Clear the snow on their driveway. Check in on them. Invite them over for a meal or a movie. You get the idea. It does not have to be very much or very often. Every little bit helps to improve their quality of life—and yours!

Back to that story I found in the garage. Like any married couple, Pamela and I have, on occasion, had disagreements. Early on in our relationship as we were getting used to each other and I for one still had some growing up to do, I sometimes acted like a stereotypical male and avoided whatever issue, situation or conflict that might arise. On one occasion, I took avoidance to the extreme. In other words, I left — angry and hurting. I got in my car and starting driving. Where? Wherever. I had no destination in mind. I just wanted to get away. Somehow, I ended up in a bar in Stanley, Idaho (at that time pop. of about 100). While there, this is what I wrote:

I sit all alone in this dance hall in Stanley wishing she were here, but she isn’t. All this way to find an empty chair beside me; just to learn what emptiness is. I turn to speak, to reach to touch … nothing there. I’m all alone in this dance hall in Stanley; missing her, wanting her. The barmaid is fair, the redhead at the end of the bar is kind of cute, but they aren’t her, they aren’t important. What matters is this empty chair and my hopes and dreams.

The next day, I tucked my tail between my legs and drove home. Funny, I don’t remember what the issue was, but we worked through it and 20-something years later, we’re still together—stronger and more united. I have learned life is better together and I give thanks I have such an amazing and wonderful partner.