May 26, 2010


Cystic Fibrosis.  Yeah, I can articulate the basics but when it comes down to the science of it all, I know just enough to be dangerous...very dangerous.  Lucky for me I have a husband who is really good at taking it all in, digesting it, and then spitting it back to me in laymen's terms which helps immensly when it comes to calming me down at the first sniffle of an oncoming cold or the whistling wheeze heard after a too long hug. It's ironic, really, that my husband the NON multitasker, the NON stress basket of the family, Mr. SoLaidBackYou'dBetterCheckMeForAPulse posesses such a skill.  Meanwhile I'm the one schlepping into Clinic with the checklist of questions written out as a laundry list of whatifs and ohbytheways a mile and a half long.

When you boil CF down to the nitty gritty, the bare's a disease of the cells.  There's a broken one in there.  Outta commission.  Out of Service.  On the fritz.  And man o man, does that jack things up!  Add to it those 1500+ genetic mutations of which you could get two - the whammies - and you'll give yourself a migraine for sure.  You see, it's just two genes - the gift or curse you get from your parents, on which everything rides.  Sick or not sick,  enzymes or no enzymes, lung transplant or not..the lottery that are those two genes can mean the difference bewteen CF or NO CF. 

My simple, unscientific mind - the one that sorts underwear by color and pants from fat to skinny has no patience for this disease.  We can put a man on the moon.  We can click enter and send a ten page document to Europe in less than a hearbeat.  We can sew a finger, a toe, a leg or an arm back on.  But we can't fix this?  Go on now, get in there, dig out that faulty gene and pop in a good one.  One that WORKS for Godsake.  Geesh!  This is why I'm not a scientist, I guess.  Screw The Scientific Method.  Just get to the answer already.  I mean Come On...

May 15th was our annual Great Strides Walk for a Cure.  Des Moines managed to pull in over $205,000 - it's most successful walk ever in spite of falling short of it's $225,000 goal.  I was pleased, yet miffed.  Okay, truth be known, yours truly had managed to work herself down to outright pissed by end of the day.  I was pissed that I was is that even possible?  Well, for starters I was pissed about the fact that there were several family members who did not donate.  I'm talking CLOSE family members - people to whom I wouldn't think twice about giving a kidney or bone marrow.  Family members whose butts I once wiped.  Family members who call to chit chat on a weekly, sometimes daily basis.  They didn't even chip in a measly 4 quarters.  Come.  On.  Is the economy that bad?  Are they that out of touch?  My college roommates from nearly twenty years ago (20?!  Gulp.), the Facebook "friend" who's actually a complete and total stranger, my busy as a honey bee in June neighbor who I never talk to but see whizzing by in her SUV....they all donated. 

My attitude soured as I took a break from picking apart said family members and thought about the bigger picture.  Moolah.  Bucks.  Cash.  Benjamins.  Dough.  MONEY.  The catchy, Money Buys Science and Science Buys Life line that I pimped prewalk started to weigh heavily on me.  Des Moines had collected almost a quarter of a million dollars and there were how many other cities walking?  Houston, Tampa, Chicago, Seattle...millions upon millions were blowing around, whirling and swirling around and around all in the name of a cure.  Just how much money to you freakin' need to cure end this thing once and for all?  I've heard it takes a cool $800 million to get a new drug conceived, tested, approved and to market.  Are you kidding me?  Are we talking dollars or pesos?  EIGHT HUNDRED MILLION?!?!  For just ONE new drug?  What gives?  Are the cells charging a participation fee for each clinical trial?  Is the new company car for the scientists a Rolls Royce?  Is this whole beast just a conspiracy by the pharmaceutical companies so they can create more (profit making) drugs instead of a cure? Pop this gal a Vicodin quick before her head flips off!

The plane was in a huge nosedive, going down fast and I couldn't find the damned parachute.  Like always, I did what I normally do.  I yelled, no screamed, at my husband about the sink full of dirty coffee cups, slammed every door that I walked through, and then...then I splintered.

You see, I'm not a patient person.  No, not me.  Not at all.  I strum my fingers against the steering wheel, willing the car ahead to go just a little faster so I can make the light.  I open the microwave between 1 second remaining and zero just so I don't have to hear its annoying beep.  It's half impatience and half OCD.  But it's me.  So one would think I would know better than to cruise out to the CFF.ORG website post walk.  Like always, I lie to myself, telling myself that I'm going to look up walk results of friends and acquaintances.  But I'm coming clean - it's a lie.  It's always the same lie - a different excuse maybe but the same lie nonetheless.

Like a fool I'm a much too frequent visitor of  I'm a fool not because I visit so regularly but because I expect to see something other than the face of the middle aged physician who pledges, "I will keep working toward a cure."  Sorry Buckaroo, no can do.  Nope.  Not good enough.  Each and every time I see his face I let out a heavy sigh to give voice to my disappointment at the absence of what I have been waiting for since diagnosis: "We are Pleased to Announce That The Cure Has Been Found." How many times in fact have I seen that guy's face?  A hundred?  Five hundred?  A thousand?  I don't know.  The point is, it's still there.  His face.  His promise.  And I'm tired of waiting on promises.  I want a cure.  Did you hear me?  I WANT A CURE NOW. 

So pardon me if the apathy of a few has wet my feathers.  I know life is too short to wallow.  I just had to purge it.  I'm human afterall.  My feelings get hurt, I whine a little and then I move on, past all the bullshit and onto the next line item.

The kink in my line is fixed and I can go back to life as I know it...crayola on my leather couches, fundraising for a cure, dog hair on my kitchen floor, a husband who snores the whole night through, more fundraising, students who forget homework that was never done and don't let me forget, more fundraising for a know the drill. 

Oh, and by the way, thanks for the purge.



  1. I love your post. I feel relieved that someone else finally put into words what I've been trying to for so long!!

    I'm pretty sure we'd get along great in person ;)

    Thanks for purging!

    Lots of love!

  2. First, we did marry the same man! Creepy!

    Second, I hope you don't take this the wrong way, but I saw the movie Extrodinary Measures and immediately though of you the entire time. The family with 2 kids with Pompe and one non-pompe child, you with your 3 and the amazing way they fought for their children and for a cure! Passionate and inspirational, similar to you and my friendship with you. You inspire me on a daily basis, whether through your comments, reading your blog or just seeing(through pictures) how you are with your beautiful family and how you wake up on a daily basis and FIGHT! Keep it up! I've got your back!

  3. Amen!!! Love your post, your words are beautiful.... It is often so hard to describe this crazy CF life we all just trying to survive, and as a mother of a child with CF, it is often learning the constant unknown.... Nice to stumble upon your blog.... Marcy

  4. You said it mama! Feelin' the same big time. I now send out about seven emails regarding Great Strides until people cough up (pun intended) twenty bucks. And am always amazed by the generosity and sometimes stingy results. Soooo good to get caught up on your blog. It was great seeing you and Susie in Iowa. xoxo E