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January 1 - January 5, 2021
I’ve long realized that control is out of the question; instead, I’ve settled for an understanding that requires adaptability and resilience.
Rather than jump up and down with glee, I simply accept it, with gratitude.
Having Parkinson’s is being in constant flux; in and out, on and off. Every reaction to the drugs is met with an equal and opposite reaction when they wear off.
Never drive in a country that believes in reincarnation.
Ironically, this is similar to a Parkinsonian problem called “festination,” literally “to act or move at high speed.” This is when our footfall increases at a faster rate than our bodies can maintain; our stride shortens, and we find ourselves feet together, up on our toes, starting to pitch forward.
The fingers of my other hand carry their own message: It’s time to take my Parkinson’s meds. I haven’t had this strong or sudden a cue since my arrival in Bhutan. “How can I miss you if you won’t stay away?” I mutter.
To me, movement always represented freedom. It was a couple of years into my Parkinson’s diagnosis that I recognized “movement disorder” as an accepted handle for my affliction.
When I think about walking, a word that now comes to mind is “deliberate.” I have to plan every step I take; no extraneous side trips or wasted effort. I have to think about the way I sit in a chair: Am I settled in the right way? I do an inventory of where my limbs are. All of this calculation and deliberation is rigorous work. Physical tasks are made more difficult by the need to break them down into all of their components.
The required mental work is harder than the physical effort. I need to think about every step, which demands intense focus.
What Ryan’s doing is simple. He’s trying to teach my mind to perform one exercise while my body performs another. I need to create new pathways in my brain, new ways of compartmentalizing actions and words. Basically, what he’s teaching me is not only how to walk and talk at the same time, but how to safely think about other things while still being aware of the kinetics involved in moving from place to place.
Over thirty years of Parkinson’s, I’ve progressed into something dangerous. I’ve been weaponized. Most recently, my mobility and balance issues have definitely worsened.
When they do, I’m like a receptacle—a hamper suddenly filled with used beach towels, none of them mine. I experience the adventures of the family only through their recounting. Not that they abandon me; I do get occasional company poolside. But I insist they go and enjoy the environs.
What does that mean, exactly? Wheelchair-bound suggests that one is bound to the chair; held hostage. It contains you. Perhaps the person who is used to mobility (and the unrestricted use of their body parts) looks at the chair as a concession, as an instrument of surrender.
For someone who is used to having mobility and a sense of free will, being in the wheelchair is completely the opposite.
Once they have seen the wheelchair, they believe you’re immobile.
That kind of physical rescue from an imminent fall is often mirrored by an emotional rescue, in the form of support from my family.
The key to walking to the other side of the room is not being there, but getting there.
Parkinson’s has robbed me of the luxury of spontaneity. I can’t initiate any new activity without a careful assessment of my physical circumstance and mental alertness.
am unprepared for the fallout. My mood darkens. Even with all my health issues, I don’t believe I’ve ever fully grasped the very real depression and marginalization experienced by many who are ill and suffering.
Positivism is a state of mind one achieves, and I am presently an underachiever.
“If you imagine the worst-case scenario, and it actually happens, you’ve lived it twice.”
With gratitude, optimism becomes sustainable.
Strange that the good guys wear the masks now.
We can all take something positive from the class of 2020; to accept what has happened in the past, to embrace the present, and to remain open to the probability that it will get better in the future. I hear echoes of Stephen Pollan in that advice: With gratitude, optimism becomes sustainable.
