“Be yourself, everyone else is already taken.” -Oscar Wilde
“On the outskirts of every agony sits some observant fellow who points.” -Virginia Woolf
The program director for Raleigh Research called me up the other day and asked if I’d partake in a two-day overnight clinical trial to test a device which sticks to your skin much like a nicotine patch. It measures motor symptoms such as balance, stiffness and slow movement, to name a few, their decline is the result of Parkinson’s disease. But the most obvious motor symptom it will measure is ‘tremor’; the consistent uncontrollable shaking of one hand, as is the case with my right hand.
Continue reading Part 6- Tremor… I’m All Shook Up
In time I also heard a singular voice whisper to me as though it were an echo of words spoken long ago that keeps going and will forever sound through the epochs of time as long as love and compassion inhabit this Earth… “There are many ways to touch and kiss the sky.”
Pure imagination, without form, the absence of ego, vertical, the freedom of an oak, the rhyme between two words, the silence between two sounds, an open book, a lost manuscript, the knowing that knows it knows not, the rhythm in blues, Perceval in search of the Grail, a student of all, a teacher on call, a joyful boat, a river that runs, a pond with no ripples, a son of the light, a light in the dark, a smile, a good word, the rider of a horse that knows no reins, the left hand way, the dark side of the moon, acceptance, hope, faith, intention, a symphony, a play, a comedy, pure spirit, centered, mindful, altruistic, an enlightened rogue… at peace.
“The Light shines in the darkness, and the darkness has not overcome it,” -John 1:5
It was the medical treatment with an emphasis on medication, exercise and mindfulness that came to my rescue from the deep-sea of cognitive and physical disparity. Those who knew me at the beginning of this ordeal and see me now comment on how much better I seem. With excited eyes they infer that the doctors must have made a mistake, the diagnosis was wrong, you’re not sick! So when they ask how, I tell them the truth, “I’m on drugs.” Suddenly they get this quizzical look on their face, not knowing what to say. I reassure them, “it’s still the same me shaking under this mask of medication. I’m in control with a little help from my friends… for now”. Then it suddenly occurs to me, what an absurd statement that is; am I ever really in control. Yes, on some days you have to look a little closer to see if I have Parkinson’s at all. But it’s there and never really gets too far away, tied at the hip it seems constantly waiting for the next adventure. Continue reading Part 5- Meds… The Art of Symptoms and Side Effects
“If you would tell me the heart of a man, tell me not what he reads, but what he rereads,” -François Mauriac
In an old cave or a treasure chest it may seem, scattered throughout pages and to-do list, I have collected fragments of writing without a home, with no prospects in sight. These words are to the point and do not own any lavish pretenses of grandeur. They simply speak their truth as directly as possible, such as the truth a child will convey out of sheer innocence. I fear that these ‘short verse’ will fill volumes if I allow them as much and bring me to task for my truth. But I will do away with my unwanted proposition of fear and let this winding road of words take me to where they may lead.
“I would hurl words into this darkness and wait for an echo, and if an echo sounded, no matter how faintly, I would send other words to tell, to march, to fight, to create a sense of hunger for life that gnaws in us all,” -Richard Wright
*adapted into Echoes In The Dark
Some time ago whilst I was sitting in Starbucks, a woman noticed the tremor in my right hand and asked, “do you have Parkinson’s disease?” I looked at her a little surprised captured in my tremor and answered “yes.” She proceeded to ask questions of which I answered freely. Most of the questions centered on PD and the fact that she has is a distant relative who was just diagnosed.
I get this kind of attention a lot, which I don’t mind, either people ask questions or those too embarrassed to ask. However, they reveal a slight smile with a look in the eyes and you can tell they know. And rest assure, that whether you ask outright or you’re too embarrassed to ask, you have a few things in common; either you know someone with Parkinson’s or know somebody, whom you feel might have it. That someone might be you!
So the relative in question was a sister-in-law who upon hearing her diagnosed, stayed in bed for two weeks, too upset to get out of her room. And here is this woman looking at me and seeing two extreme reactions to the same diagnoses. I know in my mind I was thinking the same thing. Upon leaving, she told me she would pray for me of which I thanked her. This was probably the first seed of inspiration to write about Parkinson’s.
So the gist of my story is this: I am like these individuals and all others who know. And depending on what day it is, I can go to extremes. So my therapy is to write and share these words and just maybe this will give those with a close connection to this disease a rhyme or reason as to ‘why’ and move forward. As T.S. Eliot wrote in ‘Little Gidding’:
“We shall not cease from exploration,
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”
I didn’t set out to write about Parkinson’s figuring there was enough being said and written. But the more I told my story to friends the more encouragement I received. It wasn’t enough that others have written about this disease and their relationship to it, what mattered was, my story wasn’t out there for I had a voice and an obligation to write it.
For their understanding I want to thank family and friends for being there and patience in the fact that my life had changed and I now moved a little slower. To my fellow bloggers who encouraged my creativity in the blogosphere and to Mirja who always had an unending faith in my abilities as a writer.
Thank you, JC
The untold want by life and land ne’er granted. Now voyager sail thou forth to seek and find.
-Walt Whitman- Untold Want
I am the captain of my storm… of my fear… of my anxiety… of my impatience… of my negativity… of my prejudice… of my animosity… of my ship of fools. I am the captain.
I am the captain of my blue sky… of my courage… of my peace… of my tolerance… of my optimism… of my love… of my compassion… of my ship of awareness. I am the captain.
And which ship do I board? Why I take the helm of both vessels, for they are one and the same as they are of me and together we sail through turbulent and calm waters off to the center of unexpected sky’s as a lover to his beloved.
“I will not cease from mental fight… Nor shall my sword sleep in my hand.”
Merriam’s dictionary defines ‘cognition’ as the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses… the mental activities of thinking, understanding, learning, and remembering. The negative side of this definition is what I felt during that period before and into my first year of treatment for Parkinson’s. It is cognition or lack of it that played a heavy role in my actions and way of thinking at that time and still does today. Continue reading Part 4- Cognition…In the Time of Not Quite Knowing
“My life extends far beyond the limitations of me.” -Cloud Atlas
A bit of a tantrum and the voices of my better angels talking me down one day after my official diagnoses… Continue reading Part 3- A Question of Balance
“All changes, even the most longed for, have their melancholy; for what we leave behind us is part of ourselves; we must die to one life before we can enter another,” -Anatole France
At first I made a doctor’s appointment because of my diagnosed pinched sciatica nerve in my lower back and wanted a second opinion but things had changed; I now suspected that I was experiencing certain symptoms not associated with nerve damage.
The office set my appointment for the morning of October 29, 2012; asked to arrive early to complete the new patient forms. As I arrived, I sat in my car in silence, the situation seemed too surreal and at the same time permanent. I knew I would see this place again. October is my favorite month and I couldn’t help but think of those lines by Thomas Wolfe: Continue reading Part 2- Diagnosis…Down the Rabbit Hole