February 8, 2014

Die with your boots on

Post-transplant day #59. What have I lost?

"Um...well, it's kind of funny. When I got my diagnosis – cancer – I said to myself, y'know, 'Why me?' And then the other day when I got the good news, I said the same thing." - Walter White, Breaking Bad S2E10

No, Walt isn't talking about survivor's guilt; he was talking about what gets stripped from you when you are no longer dying.

There's something I've lost in this whole process, a part that's been peeled away from me and left me exposed and raw.  Part of my psychic skin has been removed.  With the replacement of my lungs, I am no longer the man I was, that much is self-evident, but it goes much deeper than a mere change of address for a pair of lungs, deeper than the psychological challenges of recovering.

People often exclaim about my mental strength; normal people who have never had to handle a chronic illness profess that "[we] don't know how you do it!"  Well, the easiest answer is that you don't have a choice.  You do, of course, but the implication is that rolling over and dying is not a choice - so we fight.  And when your fight is daily and lifelong, it becomes not just something you DO, but something you ARE.  You GROW armor, not just put it on.

I've lived my life so long battling the CF monster that my warrior self is a fundamental part of who I am.  Now, through deus ex machina, the hardest part of that fight is alleviated, banished.  The nastiest head cut off the hydra.  Oh, sure, a new head or two is growing back and will represent a new battle - but it is a different one, requiring learning new skills and tactics.  But I used my long experience in handling my pulmonary problem as my armor to handle the ills of the world.  My cough was my weapon.  And now it has been stripped from me.  My hyper-vigilance was my armor. And now it may be overbearing.   To be put into remission, to get new lungs, to have a death sentence put on hold is to be unsure if its appropriate to continue wearing the same armor that got us this far.

This afternoon, with fellow 59-day survivor April Hansen, I saw Dallas Buyers Club, a movie which hits close to home due to its examination of terminal illness and of fighting bureaucracy ....many sentiments expressed in words I've only kept in my heart 'til now.  I was constantly hit by moments that were too similar to my own experience.  The moment when Ron climbs out of his car, forgetting he's connected to an IV, and yanks his PICC line -- I felt that physically.  The desperation for drugs that are either banned by the FDA, or not approved yet, especially rang true, as the combination therapy from Vertex Pharmaceuticals for cystics with Double delta-F508 heads into Phase II trials. 

But what I most liked was watching Ron Woodruff develop a better, more hardened personality.  He becomes an honorable warrior in the face of being forced to fight a monstrous disease (and the system). The things he DOES in order to find alternative treatments and survive become the thing he IS.  He becomes nothing short of a modern samurai.  As Ron would say, I liked his style.

[This is not an attitude all people with a terminal illness cultivate.  If I didn't have proof of that before, I do now in front of me at rehab.  Those of us who have grown up with our disease (CFers) tend to have a far better grasp of the medicine ahead of us and handle medical difficulties easier than those who have had their disease sprung on them (COPD, IPF, etc).]

Now, Ron died with his boots on seven years after his diagnosis.  In the 80's and early 90's, it was inevitable.  But what Ron didn't lose was the integral parts of himself - the shield and the sword.

Today, I was reminded of the best parts of us that chronic and terminal illness builds into us.  The strength to survive is made of simple everyday tasks, nothing special really, but tasks which must be *acted* upon.  Every.  Day. And when the need for those particular refined actions is removed...what's left?  Sure the fight is still there, in a different form; but the armor I am growing now is unfamiliar and doesn't fit the same as before.  I miss my old armor.  But I'll move forward with what I've got now and hope, when the time comes, to die with my boots on.

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