Tag Archive: Parkinson’s disease


Wither I Goest

Okay, I get it. There are lots of people worse off than me. I know that. When I was young and very upset at what was happening in my family I used to try and gain perspective by reading about the Holocaust. And though I learned a lot about humanity (and inhumanity), courage and survival, still my pain was my pain. I couldn’t negate it or eliminate it just because of a growing awareness of pain on a global scale.

Just as someone else’s pain is theirs alone. They own it, they bear it. Comparing my pain with someone else’s is unproductive, a waste of time. It is what it is.

That is quickly becoming my mantra, bizarrely enough. I don’t know how I picked it up or where but that phrase is now part of my lexicon. It defines my outlook on life. It helps me react to negative circumstances in a…well, if I am unable to muster a positive or uplifting response, at least not a life-grindingly negative one.

Having Parkinson’s sucks.

It is not just the day to day things, the physical challenges, the demands on my patience with myself, and my compassion. It is those middle of the night terrors that drain me most. What if? What then? Visions of a hard future batter my emotions and my resolve. I struggle to keep in the now, keep my focus on the present. After all, who knows what is around the next corner. We only have today right? Actually we really only have right now…and now..and now.

I go to support groups (and will continue to do so) but it is scary and at times overwhelming. Sometimes examples of what my future might entail are right there in front of me and it can be a harsh look in  the mirror. I know that the reality is different for each individual, PD does not follow a uniform path. But still…I feel myself thinking I don’t belong here…yet I do. I want to run away, but I can’t run from this.

Maybe it is the combination of being 55 and of having PD. I think I am grieving the loss of my dreams, what I had hoped to achieve.

It is not just having PD that sucks…the letting go sucks. We all face it at one time or another. How we deal with the reality of our lives, our achievements, our gains, our  losses…the path we thought we were on that turned into a dead-end. How we deal with all that  is the ultimate definition of who we really are.

The best case scenario is to gather up all the loose ends, burnt bridges, broken hearts, faded dreams of our lives into a big colorful, cumbersome, complex bundle. Write our name on it in bold bright indelible letters (God forbid we get somebody else’s bundle by mistake). Then hoist it up onto our backs, gain our balance, turn our gaze forward and journey on.

                                                   

A Walk in the Park

I decided to head up to NYC  for the big Parkinson’s Unity Walk in Central Park. We took the dogs (first time for them in the big city.)

It was an incredibly beautiful day. High 60s, gorgeous sky. Everybody in the city seemed to have migrated to the park. I had, after considerable thought left my camera at home. My dog had never been to NYC and I didn’t want to weigh myself down too much. But ooh boy were my hands twitchy on the drive to NY, really wanted that camera!

After a few miscues with the gps (we ended up in Brooklyn) we got to the park (I should have just gone in the way I usually do). But we had a great drive around and through NYC.

I had girded myself for the emotional impact of the walk, not sure what I would see.  But it wasn’t too bad, except for an encounter with one woman outside the portajohn.

This woman was about 50, and we talked about meds and symptoms and she had some difficulties. She took up residence in my head for quite a while. Really wish I had given her my email, didn’t think about it til too late. I think there were an estimated 10,000 people at the walk, but the park absorbed all of us easily. The dogs were phenomenal. My dog, as usual, had her moments of timidity but rallied wonderfully. Especially given all the noise, the smells, the kids…

We walked and talked with people. I saw hundreds of shots I would love to have taken. Not just the PD walk, everything. There was so much life and so much variety. We had lunch at an outdoor cafe by the Carousel, the dogs curled up by our sides, and watched all the lifescapes going on around us. Mom with tiny baby on her very first outing, a tribe of young boys charging up and down a nearby hill while their mothers ate lunch. The tons of dogs going by attached to their owners – boy is this one dog-loving city. The punk/goth/pierced waiters with their endless patience and great smiles. The sound of a softball game across the way, the crack of a bat, the yells (or derisive groans) of the players. The umpire getting the most out of his moment of glory — STRIIIIIKKKKKEE!

As we walked people stopped to talk and say hi to the dogs, my friend’s dog was always ready with a lick and a kiss, my dog a step behind, more cautious in her greetings. We met and patted a lot of dogs of all shapes and sizes.

We sat for a while entranced by a woman violinist who played in the dappled sunshine, cherry blossoms floating down around her. People surrounded us, listening, playing, holding hands, reading, soaking in the sun and sound. As she played there was a group of hip-hop dancers practicing their moves sans music (so unusual it caught my eye). When, after a while, the violinist had finished her set, she waved to the dancers who promptly took over and started up their music. What a cool moment, the graceful changing over of a valued performance site from one artist and genre to the next. We donated to the violinist and got her CD before she left.

There were acrobatic street performers, living statues, rollerbladers — all mingling and performing among the crowds. Stopped by the hawk watch scope to check out the red tail hawk nest on top of one of the spectacular buildings lining the park. (The hawk pair have been there for years and are bonafide celebrities — outshining the comings and goings of the human celebrities who live alongside.)

Left the city around 5 and headed back. What a fantastic day.

Sunday was peaceful and rainy, listened to the CD, astonished at how good this woman is. It amazes me that a wooden box and strings can transform sound into music. From the rasping of a bow across strings into soaring notes. Who was the first person who realized this? That they could create this gift to the ear and the soul.