Tuesday, June 22, 2010

Quite a cough

Four.

It's, on average, the number of times a day someone makes a comment about my cough. (Really, I've been counting.) Which means that four is also the number of times each day that a comment about my cough is followed by a little white lie- usually something to the effect of  these darn allergies, I just can't seem to kick this cold, or yes, I think a cough drop might help, thank you.

You see, I could explain the real reason I cough so much, but I figure nobody really wants to know. They're just making small talk. Imagine what someone's reaction might be when they said something completely harmless like "That's some cold you have" and I answered with "Oh, it's not really a cold. It's a physically and emotionally painful, progressive, life-shortening disease that will ultimately be the death of me. But, have a fantastic day." (I would never say that, by the way.)

If you or a loved one happen to have CF, then you are probably very familiar with the persistent cough that is par for those of us with the disease. For those of you who may not know what I'm talking about, let me tell you a little something: I COUGH ALL THE TIME.

I cough when I exercise, when I laugh, when I vacuum, as I do the dishes, throughout and for quite sometime after my breathing treatments, when I walk up my stairs, during sex (oh yes, I went there), as I carry groceries into the house, when I'm showering, after I've sneezed, if I take a deep breath too quickly, when I sing and even while I'm sleeping. Basically, anything I do that requires any amount of physical activity makes me cough, and quite often when I'm completely at rest, I still cough. And this is all very normal for me. So normal, in fact, that most of the time I don't even realize I'm doing it.

Case in point: just the other day, my two year old nephew, Logan, must have noticed my cough for the first time because he totally called me out on it.

"Are you sick, Jenny?"
"Nope. I feel fine, buddy."
"Were you coughing?"
" I don't know.....Was I?......"
"You were. I think you're sick."

It threw me for a bit of a loop. I don't even give it a second thought when strangers ask if I need a cough drop or say something like "You've got quite a cold", but I've never had to explain things to someone so young, so innocent. After thinking about it for a few seconds, I said to Logan, "You think I'm sick? Well, I do cough a lot, but I feel GREAT today!" Then I picked him up in my arms, spun him in a circle, (coughed a few times) and gobbled his little tummy right up.

Later that evening, I kept replaying the moment in my head. He was satisfied with my answer, distracted by me swinging him around and tickling him. But, it really made me think...The day will come when Morgan realizes that not every mom does the Vest or nebulizers, or takes a handful of pills each time she eats, or spends weeks at a time in the hospital. When she's old enough to realize that her mom is "different" and begins questioning that, I'm going to need real answers. I won't be able to distract her with tickles each time she asks why I'm not always able to do things that other moms can. She deserves to know everything, but I'm not sure how or when to introduce her to this ugly aspect of our lives. I know I have time before that day comes, but there is no better time than the present to begin preparing for it.

So...
 
Four.

It is now the number of times a day I'm trying to have patience and think of a real (positive, honest, and brief) answer before rattling off another white lie.

3 comments:

  1. What a great post Jenny! It's too bad you can't just twirl, spin and tickle all the strangers that ask questions or offer cough drops! LOL :P I try to keep it just as simple for the nosy strangers as if I was explaining CF to a child. Unfortunately, I have found in my own experiences that an honest explanation about CF turns most adults off. I have learned how to dumb down the definition of CF for those that ask. If they want more detailed info, I tell answer their questions, and hand them a "business" card that has my blog address on it. Good for you for staying positive and ending the little white lies! :)

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  2. Ha! I laughed out loud at the image of me tickling people who make comments. I think it would successfully end the questions about my cough, but I think it would stir up all kinds of questions about my sanity!

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  3. I usually just say "I have a genetic disease" or some variant of that. If they ask, I'll tell them the name, though that means little to most people. Most people are content to leave it at that - but if they ask for more, I will tell them. I HATE, HATE, HATE when people think I have a cold/other contagious illness. It makes me absolutely crazy. Lately I've been having a hard time in church - last Sunday I was hacking so hard in Sunday School (even after 15 minutes of secret CPT in a classroom with Mahon) that I eventually had to go home for a neb... I tell you, I could FEEL the nasty stares from people around me, and HEAR them thinking "stay away from me and/or my baby!" I usually try to disabuse people of the notion that I have a cold or anything they could possibly contract right up front.

    As for little kids - when the triplets (my siblings) were little, I usually just told them I was "sick." It was simple enough for them to understand. When they got older, they caught on to the fact that I was sick all the time, and asked more questions. It actually led to some incredibly sweet conversations. Like this one:
    http://cindylouwho2006.livejournal.com/106859.html

    They did understand that I wasn't bedridden all the time, and that I often had times where I felt pretty good, but they also understood that it meant I sometimes couldn't do certain things with them.

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