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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Exposure Solves Many Fears

I went to the MS Walk down on the Mall in D.C. this past weekend.  My wife and I had debated me taking our kids for the walk.  I want them to see others with MS if only to counter any fear they may get when they see me have trouble with it.  Ours is a medical family with everyone having their issues.  To a large extent, the best counter for fear is exposure.
For example, when I started my MS treatments, I had a shot a day of Copaxone.  I tried to make sure and do the shots in front of my daughter because as a heart patient who was going to need fairly major heart surgery, I knew her future would include many a needle.  For that matter, exposure helps remove fear and apprehension of many a scary or distasteful part of life.  I’ve had it noted my kids take medications by mouth better than just about anyone’s kids.  Of course they do.  they have been taking them their whole life.  Heck, my biggest problem with getting my daughter to take her nasty tasting meds with her filled syringes is her desire to take them new ways. This weekend, she took them not using her hands and just sucking them up, she took them by standing them up on the table and covering the exit point in her mouth and pushing down on the table to push in the plunger, and she tried to take more than one at a time.  The last is the only one I discouraged because she has tried this in the past with a little chin dribble as the result.  Now tell me most kids would have fun taking their meds like this.
ke them with me, but ultimately, we decided to wait until next year to take them.  There was little notice because I didn’t realize the walk was this weekend till Thursday, and K had an appointment with the MD School for the Blind which the kids also wanted to attend.  Their love for her is commendable.  In addition, it would have meant waking early and the dealing with some anxieties while tired.  We had some fear of “Daddy, you’re not going to end up like him/her are you?  Oh NO.  We have to do something!”  While medications for extreme anxiety are being altered to get a stable state of mind, we weren’t sure what the end result would be.  So we postponed for one year.  Still, I went.
I liked the walk, and I had a great time talking to other walkers about their MS or about the people for whom they were walking.  I also got some information on a non-steroid treatment for flares which I would like.  I almost feel like turning in my man-card every time I find myself crying at something like “Independence Day” with Will Smith.  It’s a comedy darn it!
All in all, it’s been a pretty fine week, even if kids refuse to sleep most nights.

My favorite quote of the week was “Courage is standing alone on the edge of a cliff and being OK with being alone.”

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Our Family's Stories of Growing Up

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