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Parkinson’s: More Than What You See

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Parkinson’s: More Than What You See

 Written by John P. Creveling, a retired self-employed business and career consultant from Philadelphia, Pennsylvania. In July 2018, John published his first book, More Than What You See.

“Yes, I believe you have Parkinson’s disease.”

I first heard those words in 2009, and they changed my life, and my wife’s life, forever. While such a diagnosis is never easy to hear, those words prompted my wife and me to begin reassessing our priorities to rediscover what was most important to us, both professionally and personally.

Though it took a few months for me to realize, I eventually shared one of my lifelong dreams with my wife. I had always wanted to write a book to share with our children and grandchildren, but life had gotten in the way. However, Parkinson’s introduced a sense of urgency into our lives, and I realized that now was the time for me to leave my legacy in the form of a book.

For years, I’d been leaving scribbled notes on the backs of takeout menus, snippets of poems on tissues and smudged lyrics on business cards. I would later rediscover them, barely legible after weeks in my pockets. It was at this point I felt I had finally learned my lesson and earnestly began to express myself in a more organized way, using my laptop as a medium instead.

Still, I didn’t limit my creativity – I am often my most prolific at two or three o’clock in the morning; so, I simply let myself write whenever the spirit moved me. I began to call my expressions “reflections.” The creativity that this self-reflection allowed made me better able to understand my Parkinson’s and myself.

As the project grew, my wife and I involved a friend of ours who had been a journalist for many years, and the book began to take shape. I included my poetry, my stories, photographs from over the years and even some drawings I had created. What had started as a family project evolved into a book that could be embraced by a larger community.

One of the biggest steps in the creative process was deciding how I would acknowledge Parkinson’s. I had originally intended to wait until the end of the book to mention it, but my wife and our friend convinced me to begin with acknowledging that I am living with Parkinson’s, and of course they were right. I am not my Parkinson’s. I am far more.

John refers to himself as an ‘outsider artist.’ Despite a lack of formal training, he enjoys painting and is learning to play the guitar as another way to express himself.

I don’t recall how old I was when I started viewing the world with awe and wonder, or how long I’ve seen the glass as half-full, but that optimism still runs in my veins and sustains me throughout this journey. I am mindful of being present now, in this day, living in the world as it is in this exact moment. And should I forget to live intentionally, my wife is quick to remind me of Oscar Wilde’s words from over a century ago: “Life is too important to be taken seriously.”

Despite my Parkinson’s, I maintain an optimistic and creative outlook on life. I let the trivial things go and focus on what is truly important. And when my wife quotes Oscar Wilde, I remind her of what John Ruskin said more than a hundred years ago: “What we think, or what we know, or what we believe, is of little consequence. In the end the only consequence is what we do.” And that is a good place to begin and end.

“Wanted Man,” by John P. Creveling: an excerpt from More Than What You See

Unexpectedly I caught a glimpse of you today

while I skipped a beat

walking down the street.

I struggled with memories of days before I knew you.

Sometimes I catch myself thinking

I wonder how you found me.

I did not seek you out.

I got out of bed one day

and there you were.

I didn’t invite you in

but you had settled within.

The world is round

yet here I am bound

and constrained.

At times I feel like a prisoner.

A wanted man with a number on my back

visible for all to see,

there will be no hiding from you.

Wishing it were different will not change a thing I know.

Better to focus on the reality

of living fully while I can.

I don’t want to be reminded of how it used to be.

For all of us, an end will come,

like a period at the end of a sentence.

How we arrive there is the real story.

It’s when I see you I realize

I want to be on another path and still another journey.

Yet, here we are together,

an odd couple,

where you won’t relinquish your hold over me.

There is no hiding from you.

Wherever I go, you’re there with me

and always will be.

Although I still struggle with that.

I thought of you today not because I wanted to.

SHARE YOUR VICTORY

Each month, we spotlight people from our Parkinson’s community who embody living well today – what we call Moments of Victory®.

Your story, like John’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.

Submit Your Moments of Victory

1 Comment on “Parkinson’s: More Than What You See

    • wayne a. Gilbert

      September 27, 2019 at 11:48 am Reply

      I love these stories about PwP’s who are not
      “battling” or “fighting,” but CREATING! takes so much courage and grit to make cool stuff! thanks so much for this story!

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