Parkinson’s disease (PD) has an admirable work ethic. It is laying for you 24/7, 52 weeks of the year. It is dedicated full-time to making your life frustrating and hazardous night and day, week in, week out. It never takes time off, it will even come for you in your sleep, and is endlessly inventive in its approach to the mission of making your life unfit for human consumption. Should you forget for one minute you suffer this unwelcome guest, it will be quick to remind you it lurks in every corner of your life, brewing mischief, plotting pain, nurturing mayhem.
How do you live well with such a dedicated, tireless opponent constantly in your face? An enemy with such an array of tools at its disposal?
You have to be as relentless as PD.
You have to be dedicated and alert full time, never dropping your guard, never tiring, never losing concentration, never forgetting to take your pills, never blowing off your exercise routine, never leaving an opening for Parkinson’s to slip through. It’s lurking in the stair step you missed in the dark, because you were too lazy to turn on the light, in the mouthful you didn’t thoroughly chew because you were running late You can never shut your PD radar off, because that’s when it will trip you up.
In other words, you can’t do it. I know I can’t. Being as relentless as PD isn’t humanly possible. Being as constant in your vigilance as Parkinson’s is in laying siege to your health requires an effort that would be superhuman even for for a healthy person. It’s too much to ask of someone who is struggling with a chronic disease. Sooner or later, you will miss that step in the dark, or trip on a loose rug or a child’s toy, and you will go down hard and fast.
So where does this leave us? It means we have to re-define what we mean by living well. You can do this in two different ways. The first is by defining quality of life down. Living well in this context means enjoying small comforts minimizing unavoidable discomforts, and being grateful for what you have, comforted by the knowledge that things could always be worse.
The second way is to embrace our unlikely existence, in spite of the pain. To affirm the wonder of life in all its dreadful glory, to lie exposed beneath the magnificence of the Milky Way, to gaze into the caldera of an active volcano, to witness the grace of a breaking wave, to feel the power of an earthquake, to marvel at an infant’s tiny, perfect hand. To affirm that living is a wildly inexplicable privilege in a Universe that is mysterious and beautiful, no matter what drawbacks we must surmount.
Parkinson’s puts limits on us. But As poet William Blake put it, we can
“ … see a world in a grain of sand
And a heaven in a wild flower
Hold infinity in the palm of your hand
And eternity all in an hour.”
This path is open to anyone, healthy or unhealthy. Is sustaining this outlook on life any more possible or easier than maintaining constant vigilance against Parkinson’s? Let me answer this way: as I get farther into my progression, I find the fact that I function at all more mysterious and amazing all the time.