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Choosing a shared burden

Friday May 22, 2015

Parkinson’s Disease is not contagious. (Whew.) And though there is a genetic component, in the majority of circumstances you are not likely to pass it on to your children. (Double whew! Dodged a bullet there.) But, ever the over-achiever, PD is willing to go above and beyond, or below and behind. Your loved ones won’t catch PD from you, but in a sense, they will catch it with you.

choosing a shared burdenCo-tagious? Collateral disease? It’s too bad we don’t have a word for the additional damage that a disease inflicts on those who share the lives of people directly affected by a major disorder. It’s difficult to talk about, to even imagine something for which you don’t have a name. But that doesn’t mean that real suffering doesn’t go beyond the patient.

Doesn’t a spouse grieve for busted dreams of a shared future? Isn’t the apprehension at fulfilling the role of “caregiver,” let alone carrying it out, painful? As many families live from paycheck to paycheck, what opportunities and experiences are foreclosed by the necessity of providing medication and other costly forms of care to a stricken spouse or parent? What of the agony of seeing your mate transformed bit by bit from the energetic and capable person you fell in love with to a person unable to dress or feed themselves? What of the sheer exhaustion of navigating the health “system,” and managing limited finances while attempting to minister to an ailing partner? 

It’s not hard to see why Parkinson’s can strain or destroy marriages. It’s almost harder to understand how families can remain relatively intact when all the normal stresses of everyday life are compounded by the demands of a constantly assertive disease.

As much as I admire the perseverance of my fellows with Parkinson’s, the fact is we have no choice but to deal with this nasty twist of fate. Those who cope well are praised for their character and bravery.  Those who don’t are excused on the reasonable grounds that they are seriously ill. But coping  with PD is not optional for those who have it. This is not true of those who stick by their afflicted partners, parents or friends. These people do have a choice, although an unhappy one, between finding the lesser of two burdens. Either stay and confront the destruction, or go, and contribute to it.    

The bleak choice made in this decision will be influenced by many factors. Some of these factors may be mysterious even to those directly involved, and invisible to those who are not. So let’s be cautious about judging from the outside when a person seems to fall short in their response. Instead thank whatever gods you serve that this is one test most of us won’t be obliged to undergo. 

Yet there are many who do run this gauntlet. Somewhere, somehow, they tap into deep wells of courage and resourcefulness. Courage that withstands the awful threats of a powerful and pitiless adversary. Courage that is offered up by choice, and not entirely by need. 

Let’s not be cautious or stingy when honoring people who choose to undertake this formidable role. We don’t have to wonder at the invisible factors that influenced their brave actions. The visible dissuasions are daunting enough for us to acknowledge the mettle of people who defy them. Those who volunteer and hang in as caregivers in spite of all that is plainly coming should be studied, celebrated and sung. In our haphazard world, such people are the gossamer threads by which any of us, at any time, may come to hang.  

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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