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Leading the life of malicious whimsy

Friday October 09, 2015

A friend who underwent successful ​Deep Brain Stimulation surgery told me that now, with major motor problems sidelined, she was free to savor “the finer miseries of Parkinson’s.” Among these finer miseries​, I would include the malicious whimsy th​is​ disease inflicts on sufferers.

What do I mean by “malicious whimsy? It’s those sadistic little touches one undergoes when living daily with this malady. The indignities that seem so​ well-planned in their maddening logic of frustration, it’s hard to believe they are not the work of some bent but powerful imagination.

Blog Illo 22It's as if they were thought up by a spiteful poltergeist with way too much spare time on its hands.​

​Let's look at a few examples:

​Our first instance of this peculiar facet of PD has to do with “freezing.” One minute you are making your way forward with relative efficiency, the next your feet are velcroed to the floor. You are reduced to mincing, or worse, falling. In spite of your most urgent commands, you cannot take another step forward. You are marooned where you stand, frozen. You have a simple choice. Stand there completely still, and pretend to be a mime, in hopes that nobody will notice you... or at least, will pretend not to notice. Or, there is the second option. For some obscure reason, a reason that can only be attributed to a malign, mysterious persecutor, you may walk if you walk backward. Walking backward to go forward: classic malicious whimsy. 

​Another example is REM sleep disturbance. People without Parkinson’s can move freely throughout the day, but at night their movement is restricted. There is good reason for this. If you act out your dreams you may blindly kick or punch your bedmate, or the nightstand, inflicting damage on your beloved or your own hand. Unfortunately, those of us with Parkinson’s, unable to move freely during the waking hours, may move freely during REM sleep, the period of sleep during which we dream.

People with Parkinson’s often suffer from vivid dreams in which they must protect a loved one from a threat, defending them physically and energetically. “Living the dream” takes on a whole new meaning when it leads you to accidentally striking or biting the one you love. Other times the person with Parkinson’s may dream so actively they fall out of bed. The result may be a broken leg or hip. This is malicious whimsy at its most sardonic, and downright dangerous. 

​And h​ow about that urgent need to pee that starts to run your life as the disease settles in for the long haul? That feeling that your bladder is swollen to grapefruit size, and demands release with every selfish fiber of its black little heart? You are in the middle of an important meeting? Tough. There is no restroom within a ten mile radius? Time to get inventive. You just went twenty minutes ago? Overruled! OMG!RUNFORIT!SHE’SGONNABLOW! Finally, after an energetic interval madly doing the bladder dance, the chance arrives to loose that vat, that swimming pool, that cresting Mississippi flood of urine.

​But your joy at relief gives way to ​exasperation when all you have to show for the effort is maybe two puny tablespoons. That, my friends, is malicious whimsy. 

These are all forms of the malicious whimsy of Parkinson’s I have experienced firsthand, but by no means the only ones. I’m curious to know if others have noticed this in their passage through PD. If you have your own examples, I’d love to hear about them via the comment section below.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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