by Jane Miller
November 1, 2018
There comes a time when you have to face the fears you can barely acknowledge, let alone stare down, and step up to the edge of the precipice. Your body tenses as you look down into the abyss and realize that while there are people who love you, you are in it by yourself, and pretty much have been since the beginning.
Being diagnosed with something like Parkinson’s, or sympathetic ophthalmia, or facing multiple surgeries does something to your psyche. A part of you can accept reality, at least in small bits, and knows how bad it will be. The other part of you refuses to accept the situation, or how bad it is, or how difficult facing it is going to be.
Breaking down the wall between knowledge and acceptance or understanding is a delicate process. Too soon and you are scarred, unable to save yourself and make the most of your strengths. Too late, and you’ve lost the chance to slow the disease progression, to learn how to live, to help others on their journey, and accept help on yours.
So I found myself walking out of the boxing gym this morning, feeling a little shell-shocked. I climbed into my car, and cried. Admitting to myself how afraid I have been and still am about facing what I have to. How once I cross the line and face fully and completely the truth about Parkinson’s, there will be no going back into denial.
Having Parkinson’s disease is like playing a game, only you don’t know the rules, which are different for everyone; you know you can’t win the game anyway; and no one told you where the enemies and battles are. It is not until later that you realize the truth.
You lost your sense of smell? Parkinson’s.
Your handwriting is becoming illegibly small? Parkinson’s. Can’t fill in the information on a check? Or a form that’s not online? Write a personal note that can be read without the magnification aid of the Hubble telescope? Parkinson’s.
Pain from muscle tension, cramping, and continuous movement dogs you every step of the way? Parkinson’s.
Fatigue, bone deep heavy fatigue, creeps up your spinal cord and into the tiniest corners and crevices of your brain? Is it the meds? Nope, Parkinson’s.
The heartburn, the intense pain when food or (good grief) water stalls partway down the esophagus, threatens to come back up, then stays stuck for hours? Parkinson’s.
Falling. And the gut-wrenching fear of falling again. The memory of such pain that death was welcome and God nowhere to be found. Parkinson’s.
What a stupid game, you say. No one tells you these things. Except they do. You’re just not ready to listen.
Until you are. And then it dawns on you. Denial has been preventing you from moving on. You can’t defeat the enemies in the game if you deny their existence. It takes recognizing them, seeing them for what they are and not what you’re afraid they are, and then charging. It is only through acknowledgment, strength, and perseverance that you can win this game. And you can win it. We all can.
by Jane Miller
You will win.
Attitude, hope and grace. That’s you, my dear friend!
A can’t really know what you are going through, but I feel privileged that you are helping me understand and letting me see a window into you and your life. I’m honored. Stay tough, keep up the fight and the sense of humor.
Thank you for sharing your story and trying to help us understand. More strength and perseverance to you! Jane 2
From the short distance between us in our twice a week PD boxing class, all indications are that your focused approach to dealing with adversity is truly working. Your smile and energy level are infectious. Thank you for the fresh perspective.
Jane, my doc told me PD is like playing a game of Wack-a-Mole so you’re right on with your analogy. You work at getting one symptom under control and another pops up. Keep on keeping on. I look forward to seeing you and your incredible energy at the boxing gym.