August 4, 2013

The Relativity of Cystic Fibrosis

Remember in high school watching the clock on the wall and it seemed like time absolutely stood still between 3:14 and 3:15?  I do.  But do you really want time to stand still?  Trying waiting for the last 10% of an IV to infuse when you're already 90 minutes late for bed and have to be up early in the morning.  That's time travel! Albert Einstein could not have described relativity better.

There are a few things that having cystic fibrosis makes just a liiiiiiitle bit different than most people's lives.  I'm not saying that makes us special, just that our experiences will never 100% jive with normal people's experiences.  Or, for that matter, the experiences of people with other diseases, especially ones acquired later in life.  I'd like to talk about things that come out, well, a slightly different shade of life - as if those of us with CF are moving at relativistic speeds and have red-shifted from your point of view (as you have red-shifted from our point of view).  And this difference gets more pronounced the farther down the rabbit hole we go; the farther our disease takes us.  A key difference is the tenor of our relationships.

Wednesday, a friend of mine whom I've known for more than a year, attended many transplant meetings with, and feel very close to -- yet have never physically touched -- finally, finally got her transplant.  You know, I really thought Emily was doing OK there for a while, but then she took a sudden turn for the worse, ending up hospitalized on high flow oxygen, then ECMO... I began to worry.  ECMO is a real sign that your lungs are done.  Were it not for this mechanical intervention, she'd have died.  And it kept her alive...for about two weeks, she waited in this state and finally she got her transplant this last Wednesday night slash Thursday morning!

I am incredibly relieved and thankful!  It may be the prednisone in my system, but I broke down in tears of joy when I read the notice on her Wall.  In these cases, it's always possible that lungs won't be found in time.  But there was a time when I told her I was sure that though she came to the transplant program after me and was listed after me, she'd get her transplant before me.  I also told her that I was sure she'd get a transplant because girls like her ALWAYS get a transplant, but that I am not so sure about myself.  (Ah, but those doubts are for another blog post.)

So...why am I so invested in Emily's progress?  Why is her journey, the travails of a girl I actually actually hardly know, so riveting to me?  It's because, I think, those of us with CF and particularly those of us who have reached end-stage CF, feel close to one another in a way similar to what soldiers describe after surviving harrowing battles together.  In very real, very concrete ways, we are more brothers and sisters to each other than our biological families.  It's true!  My brother and my sisters will never understand what I'm going through or what I'll soon be going through.  But Emily can and does.  And I understand her struggles.  Same goes for Piper and Jerry and James and Kenna and Megan and dozens of others.  We know precisely -- and in minute, excruciating detail -- what each other is going through.  And for the few parts of their journeys I haven't already experienced, I am incredibly thankful my brothers and sisters are slightly ahead of me on their journeys, so as to shine a light on a very dark path, as I strive to shine a light on the path I've already traveled.

This, you see, is one of those relativistic differences.  How many people have such an extended family?  That when you gripe about coughing up green mucous with red streaks in it, that there's a chorus of "yep, been there done that"?  Or when you have a question about the best way to keep from getting tangled up in your oxygen tubing while sleeping, that there's a half dozen good suggestions?  Or grumble about having spent half your morning on the toilet attempting to kill every living thing in the house...  Well, I honestly don't think most people can experience this.  There's also the fact we've lived with this our entire lives.  OUR ENTIRE LIVES.  By contrast, there's damn few other people who have life-impacting conditions since birth.  Most people's problems - whatever they are - came on with age, with injury, with having done something stupid, or stupidly having failed to do something.  (Let's face it: as a race, most of our problems are the result of putting things of too little quality and too high quantity into our various orifices.  I am sometimes....not as sympathetic as I could be towards the problems brought on by excess, as opposed to the problems brought on by genetics.)

Having CF is also somewhat like being a photon in a laser beam.  We are not only on the same wavelength, we are on the same vector.  And those who aren't part of the laser beam, can't even SEE the laser beam.  (CF is often an invisible disease to others, but that's for yet another blog post.)

So if you find me jumping around in ecstasy over the news that my friend Emily is off the vent, or her chest tubes are out, or she's finally gone home - don't think me lunatic or overly attached.  Just realize that one of my sisters has had her life spared and I'm not only happy for her, but I'm happy for all of us with this miserable disease.  Her progress becomes the progress of all of us; her success, our success.  Her hope fulfilled, the expectant hope of us all.

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