Category Archives: chronic disease

chronic condition, chronic disease, class, cup, MS, social impact, social implication, story

How to Teach Living with Chronic Conditions

I don’t think I’ve posted this story yet, but it’s one of two I think of when asked what having MS is like.  The first story is the spoons story originally written about Lupus(http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/), and it’s posted all over the place.  However, the second story is one I see far less often, but I like it more because it speaks to more than just my MS.  It speaks to the frustration of living with a chronic condition.
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The professor of a first year medical school class, enters the classroom and approaches a student in the front row.  He asks very seriously, “Will you please hold this cup for me.  I have a hard time walking around with it, and I am a much better speaker while I walk.”
 
Of course the student reaches up and takes the cup of water.  The professor then asks, “That cup of water isn’t heavy is it?  OH WAIT DON”T PUT IT DOWN!  The bottom is loose and may come off.  The cup means a lot to me, and the water in it was from by my late grandmother’s well.  It gives me comfort to think about her as I drink it.  You don’t mind holding it for just a little while longer do you?  It’s not heavy or anything is it?”

A few minutes later, he sees the student shift the cup from his right hand to his left.  “Wait!  The water in the cup is very peculiar.  You see if it is held for long in a left hand, something about it tastes funny.  Oh you are right handed?  Well surely one class worth of notes won’t be the difference in your failure will it?  You can get notes from the pretty girl next to you.  I’m sure she won’t mind.   Oh, you don’t like having to ask for help though do you?  But thank you.  You are doing wonderfully with my special water.”

The professor continues on his lecture.  Then about 15 minutes later he asks how the cup holding is going and is happy to hear all is well.
40 minutes later it is almost break time.  He asks if the student is heading to the bathroom.  He says, “As the designated drink holder, if you need to go, remember not to set the drink down.  In fact, you probably shouldn’t be more than 3 feet from it because I can see you are special and are an expert drink holder.  So, if you have to hand it to somebody else, please make sure they stay very close to you.”  The class laughs, but the guy is definitely starting to reconsider how much this little cup is inconveniencing him.  After all, holding and looking at a cup of water does make one thinking about drinking and peeing.  Still, he forgoes the bathroom at break because he doesn’t like the thought of asking somebody else to stand right next to him for him to use the bathroom.
In fact, as the class continues, the boy looks more and more like he thinks this cup is an unneeded, unwanted annoyance.  He wants to be rid of it!  Then he hears, “Since you’ve held this cup so well, would you mind holding it till our next class?  It turns out I don’t need a drink as much as I thought, but I would hate to waste it.  Oh yeah, this is our last class before break, but you’re doing fine.  The cup isn’t a big cup is it?  I mean if you can hold a pint of beer…”  then he takes the drink and downs it.
“Now does everyone understand how a small thing, even a cup too small to hold a pint of beer can be a huge imposition under the right or wrong circumstances?” Chronic conditions and symptoms are like the cup.  It may seem silly to complain about such a small problem, but over time the problems can multiply.  They can even become socially awkward though it seemed like nothing at first.
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I usually tell this one with the spoons story because I think both speak to important but different aspects of my life with MS.
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care taker, chronic disease, end of life, Fairy tale, life cycle, MS, murder, suicide

Lives Tied Together – Go In Peace

It seems there is a groundswell of murder suicides or reporting of murder suicides involving people with chronic progressing diseases.  Yesterday, I read about a case where a husband killed his wife who had Alzheimer’s before killing himself (http://www.nytimes.com/2012/03/31/us/love-that-endured-alzheimers-ends-in-2-deaths.html).  
Today, I read about a similar situation where the wife had a fairly progressed state of MS (http://www.nypost.com/p/news/local/brooklyn/mercy_murder_suicide_LWRF0UtUB8jKU0uTF2ZcdM#ixzz1rUzf1QSx).  
I am struck by how long these couples have been together.  It would seem the man in both cases was unwilling to continue down a road without his wife.  Both were progressing, though less is reported about the progression of the woman’s cognitive disabilities save she could no longer handle bills.  I imagine it must be very difficult to watch a loved one slip away, and I can imagine the stress of it being overwhelming.  After decades together, watching what we love in our partners’ mind eye dimming seems an incredibly disheartening prospect.  I could understand the actions if it was something they had agreed on together.
How many long time married couples die with in 2 years of each other?  In the grand scheme of events, is this that far outside the norm that we should be horrified?  The unnatural part is the gun and the immediacy of the one death following the other, but if they have tied their lives together for so long should they be denied tying their deaths together too?  It’s a little crazy for my way of thinking and living, but it’s not so far out I can’t imagine the thought processes.
Is it possible the real crazy is simply our inability as a culture to confront death in any way not summed up in our fairy tales?  Come to think of it, most of our fairy tales were rather Grimm.  
I am beginning to think we as a culture strive to only deal with the stuff in the middle of the life cycle, and only when given the Disney version which has to end with “and they lived happily ever after.”   Please remove all sex, birth and death from the viewing area of our culture.  We are cleared only for PG rated material, at least if it is something about which we have to think.  Everything else is simply too shocking to contemplate.
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