Parkinson's: Snarky Parky and Friends

Guest Post by Corrine Bayraktaroglu: For 18 years Nancy and I met almost every Tuesday to  drink tea and brainstorm the most ridiculous community art ideas as Jafagirls and as Art council members and supporters. Some of those ideas  came to fruition and others fizzled into deserved obscurity. Then I moved to Arizona and we continued our Tuesday jafapal habit via skype. Nancy was still very active doing what she loved, running the Yellow Springs Arts Council Gallery, overseeing and trying to protect the Yellow Springs Arts council Permanent Collection, and enjoying her family and friends. So our chats centered around all the things that were making her happy and fulfilled.  On one visit back to Yellow Springs I took this lovely photo. 

Little did I know that the tiredness that another jafapal, Talitha, and I noticed that day in the garden as I took the pic was the beginning of a new chapter for Nancy.  Several days later Nancy had a heart attack, and the double whammy was confirmation that she had Parkinson's. 

Like many friends and family of anyone who deals with Parkinson's I've been on a major learning curve. What has really hit me in the gut is the poetry of Jim Sheridan because his poetry screams the reality of this daily assault on a persons life, body, mind, dignity. 
"Parkinson's and me
This disease won't let me be
It  is true, I am still me
But not the me I used to be"
Jim Sheridan
On  my recent visit to Yellow Springs Nancy said to me that the reason she wanted to see me so much this visit is because she is not sure she will be the same my next visit.  I flippantly said, yes but YOU will still be in there, while I fought back wanting to  cry my bloody eyes out.  The truth is my bestie will be a different YET still the same bestie and as I hunt through the layers of snarky parky I'll say,  aah there you are my jafapal" oh and "yes snarky, I see you too you little bastard."

“What’s the best way a non-PD friend can help friends with Parkinson’s?”


Comments

  1. nancy mellonAugust 7, 2023 at 11:39 AM

    thank you dear friend.

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    Replies
    1. jafabritAugust 7, 2023 at 12:27 PM

      I love you petal đź’—

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    2. AnonymousAugust 8, 2023 at 6:38 AM

      It's funny the range of emotions that run through one's heart.

      My older sister reached out because she feels that I am all alone. She wants to help, but doesn't understand. In the beginning she'd swat my hand urging me to quit the tremor from shaking. The constant drooling, the falling asleep, the apathy, she detest. She just doesn't understand. Some of it is the disease some is side-effects from the medicine. It appears to me that she is looking at me every time we get together, through the eyes of death.
      Sure, she congratulates me on being pro--active...but I feel the pity. Judging this week with last week.

      My little sister is quite different. She's been battling Non-regressive, non-remitting, Primary progressive MS for 30 years.
      SHE KNOW WHAT I'M GOING THROUGH. She decided not to fight it. No rehab, no experimenting. She is confined to a rolator or wheel chair. She can barely move her arms of legs. Thank God for her devoted husband. Thank goodness for the internet,

      Little sis does not judge me, does not question me. She knows it is a personal choice just how we want to live the rest of our lives.

      I decided that I wanted to reach out and help those that I didn't understand in the past. I was scared, I was wrong, but I can try to make it right.
      Jim Sheridan
      JUST BE THERE...LISTEN!

      Delete
    3. jafabritAugust 8, 2023 at 10:09 AM

      Learning to listen , just listen I so agree Jim.

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  2. Debra WilliamsonAugust 8, 2023 at 9:24 AM

    Being friends or partner with someone with this disease is definitely an invitation, one that asks us to be open, compassionate, and giving to what the person needs. But we often struggle with that because we don't really know how to interact, how to be with someone who has so many challenges. And sometimes that can keep us from opening up and giving of ourselves because we feel inadequate and scared we'll do or say something that might hurt. I am personally grateful for Nancy's honesty and truth -- they open me open, make me feel vulnerable and connected to her and others I care about. Sometimes we might not like this vulnerability, but letting yourself feel that is a powerful way to connect and relate to others' experiences, to all of life. Feeling our own vulnerability is a fabulous way to learn to be compassionate to ourselves and to others.

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