The “all of us”

Two days ago, I had four medical appointments at Swedish Hospital, the location of my Deep Brain Stimulation surgery in Seattle last November. It was beyond strange to return after two months of no visits, and I found myself fighting various demons of distraction.

In order, the appointments were with my primary neurologist, an MD sleep specialist, the Nurse Practitioner who adjusts my pulse-generator batteries to optimize performance for my Parkinson’s symptoms, and the final appointment was with the surgeon who performed the two procedures.

Sleep is still an issue, but it is vastly improved compared to before the surgeries. I still have a sensation of dyskinesia in the pit of my stomach that awakens me after several hours and requires that I stand up and walk. I might not fall asleep for hours when this occurs, but when I lie down, it is comfortable, the bed is soft, and there is no pain. Still, why not try a sleep specialist; day time fatigue can quickly morph into depression, and it makes it more difficult to counter Parkinson’s rigidity.

The real challenge I face is of memory and transcendence to not only understand the lessons learned in the past few years, but to incorporate them into my much improved physical life as well. Easier said than done. It is shocking how quickly we can forget even the most valuable lessons.

How to fight this, how to push back at this totally expected and anticipated challenge? So far, I can’t say I know the answer, which is in part why I’m writing. My greatest post-surgery fear is of what I’ve come to consider the “threat of the mundane.”

I don’t feel like I’m failing yet, but it certainly doesn’t feel like I’m winning either. The challenge ultimately may have less to do with Parkinson’s, and more to do with life in general. How do I ensure that I’m living the “examined life,” of Socrates, the life active in mind and body, a full life?

I don’t know. It’s an easy proposition on paper, but the seduction of a soft bed, ample food, and no sense of urgency make it difficult in reality. Looking at it in a different way, maybe the surplus of plenty is to the West what the “oil curse” is to the Middle East, and we can all see how well that’s playing out.

Parkinson’s has taught me to keep moving, seek out and accept challenge, and take control of my life. Now, after the surgeries, I consider myself less afflicted by Parkinson’s, and in some ways “Parkinson’s free,” which is nonsense—I realize that it is my destiny to travel down the same spiraling path interrupted by surgery sometime in the future.

It is incredibly tempting to slouch back into old routines and habits. How do I get around this? How do any of us do so? My gut tells me that the answer lies in grit, in perseverance, and I know it is right.

I will be fine and figure it out; just wanted to share, now that I’ve got a problem that is likely common for all of us—how to get the most out of life.

It’s good to back with the “all of us.”

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