The Gulf Between Pity and Empathy: ALS and Cultural Response

It’s not something that many people give much thought to in their daily lives.  In fact, Motor Neuron Disease is one of those “invisible” degenerative conditions that many won’t recognize in those who suffer from it, even if they interact with them on a routine basis.  Why am I writing about ALS and other MNDs today? Because recently, I had the opportunity to engage with someone who has it.  While our interaction took place via Twitter, it’s something I think merits a little time and consideration.

 

Take a Moment to Consider…

ALS is short for amyotrophic lateral sclerosis.  One of four main types of motor neuron disease, it impacts first the voluntary nerve impulses that allow us to complete our daily tasks, then it inhibits signals that regulate involuntary functions, like breathing and our heartbeats.  The progression of the disease is relatively rapid, but it begins with slight symptoms–stumbling or difficulty grasping items.

I’m going to take it on faith that we’re all familiar with Stephen Hawking, who suffers from ALS–also known as Lou Gehrig’s disease.  But whether it’s due to a short cultural attention span or some other factor of social forgetfulness, most of us see him as he is now and never think about him as he was before.  I think it’s something we should be mindful of–the Before.  It exists for every one of those stricken with ALS, a consciousness that this state of slow degeneration was not how life always was.  Learn more about ALS here.

 

Seeing the Who, Not the What

This is important.  In many cases, when we draw attention to a disease or disorder, that’s all we see.  And we respond with pity, because, obviously, to have such trouble sucks more than we have words to convey.  But that’s a limited and dehumanizing response, because these people are people.  They are in a position where they must now watch those who have chosen to care for them do all the things they once did themselves. They will, in the course of their illness, be subject to unintentionally patronizing and misplaced pity.  The emotional toll this takes on an individual human being, an adult who was once self-sufficient and active, is enormous.

 

Personal Impact

Last week, I had the opportunity to converse with David, a gentleman who was recently diagnosed with ALS.  I promised I’d write a blog entry to draw a bit of attention to a cause his company is currently crowdfunding.  For one reason or another, I put it off.  I felt strange, because I knew so little about the disease or how it feels to have it.  I didn’t want to come off as cavalier or simpering.  I wanted to inform, to enlighten, and to draw intelligent attention to something I feel is important.

David works with a group of entrepreneurs who craft rather lovely, handmade jewelry.  He was engaged in this project before he was diagnosed, but his coworkers have rallied around him.  Switch Rapz, created by Richard Switch, now has a crowdfunded project aimed at raising awareness of ALS, as well as fund gathering to assist David in the  therapies and life alterations his disease has made essential.

I’m not simply saying, “Hey, go buy some stuff.” What I’d like for you to draw from this is a greater awareness of the humans who live with this disease, what it entails, and how it can make a difference if you’re simply more attuned to the people, as opposed to their disease.  I’m including a link to the fund raiser.  There’s just a bit over a month left on the calendar.  They craft beautiful jewelry in its own right, but their mission of awareness and aid is also worthy of your time.  Take a moment and visit their page, here.

 

Thank you for taking a moment to think about ALS, and also to peruse the page.  It means a great deal to me.

 

 

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