Getting Off Light

I am friends with dozens of other patients, to greater or lesser degrees, and follow their stories closely.  Naturally, this leads to some comparison between my condition and theirs.  I'm only human after all and understand the world around me through relative means.  I can list the components of my disease and can pinpoint where on the continuum of severity these components lie.  This is because friends have the same problems, but to different degrees.  And over time, I've heard and seen almost all possibilities, from the practically non-existent complication (some people w/ CF are pancreatic sufficient, for instance) to the dreadful, where death seems like a better alternative. 
Basically, there's far worse that this disease can dish out than I have had to experience, and I know how lucky I am.

How thick is your chart? How thick is mine?

Many patients have to get supplemental night feedings, either through a naso-gastric tube or through a mickey button.  I have not had to endure this.  Many patients' diabetes is difficult to control - mine is well-managed.  Many patients have GI complications so severe as to require daily Miralax, hospitalizations for blockages, and surgical resectioning of the bowel just to survive.  I've got away with mere abdominal pain and a stunning rainbow of, um, "bowel movement qualities" - but still have all my guts intact and manage to maintain a low-normal weight.  Many patients have kidney or liver problems so severe that those organs need transplantation, too.  Mine are OK. Many patients are on oxygen continuously - and for years on end before transplant.  I'm not yet 24/7 and there's a real possibility I can count needing it in terms of months, instead of years.  Many patients experience hemoptysis, some to such severity that, sadly, it has taken their life.  Of those who deal with the bleeds regularly, they've had multiple surgeries that attempt to stop these bleeds and lessen their frequency or severity.  I have had little more than spotting or streaking.  Only once have I reached the "coughing up pure blood" point and that stopped pretty quickly.  I wasn't even mad.

Those aren't half the physical issues.  And let us consider that no disease is purely physical.  There are mental, social, and financial issues that can be as crippling as the disease itself - or moreso! 

I have been blessed with having had a supportive family, rather than being surrounded by family members who not only don't understand, but actively seem out to hurt me. (Some patients live in households where parents deny the existence of CF or who smoke. It is horrifying.)  I have rarely felt alienation from potential friends or cohort groups just because of my disease (and there's a whole blog post in why I think that may be so).  I am not prone to depression or any other form of mental illness that preys upon us, such as body dysmorphic disorder. I am not prone to self-pity.  I'm blessed with good mental aspects of my CF.  Has it changed the way I approach life? The way I think and feel?  Of course.  But in THIS, at least, cystic fibrosis has made me a better person.

Socially, I seem to approach CF in a way that my friends accept it on an even keel, too.  I counter ignorance with education, exasperation with patience.  I have a pool of fellow cystic friends who are supportive in whatever ways they can be.  I know I am not completely alone.  In fact, I'll offer the hypothesis that I've made more friends in the last few years because I have CF than ever before.

And financially, I'm doing OK.  CF alone will probably not bankrupt me.  I have insurance.  I am each day more thankful than the last for that tremendous gift and I know exactly who to thank for it.  I grieve that he's not around anymore to hear that thanks.  It takes a load of stress off me to know what my yearly costs are going to be, and that I'll be able to earn enough money for that healthcare, plus keep a roof over my head.  It is a huge relief to know that a transplant won't be denied me for reasons purely monetary.

I recently went to dinner with a good friend who is somewhat ahead of me on the cystic fibrosis trail. We were discussing recent bumps in the road she's experiencing with her little monster (as she calls CF) as well as the ins and outs of cystic fibrosis complications and treatments.  I expressed to her that I feel I've gotten off light.  (Okay, "lightly" for you pedantic grammites.)  She assured me that even if I haven't experienced the entire smorgasbord of CF problems, that I have not in fact "gotten off light".  My lungs are shot, I'm on O2, and I'm hoping for a transplant to save my life.  This is not what she calls "getting off light". 

OK; I get that.  I get it in the same way I understand that everybody who drives a motorcycle to the Arctic Circle has achieved the exact same goal and traveled the exact same road -- generally.  But I also know that along that road, some will have flat tires, some will lose the drivetrain, others will need major engine repairs, new wheels, or even end up with such damaged machines they can't make the drive home.  Some people will have a great trip, and others will be miserable with colds, mosquitoes, getting lost, and bears eating all their food.

But some of us, whether through preparation, the help of friends and the timely intervention of experts, or just sheer dumb luck, get there with less trouble, with more reserve to endure the trip after.  We got off light.

Santa is real.

You were lied to. You were lied to early and often. And are still being lied to.

Let's start at the beginning.

At first, when you were young and innocent and the monster under the bed was more real than the concept of "tomorrow", you knew Santa was out there. Waiting. Watching. Making his list. Checking it twice. You wanted to be on that nice list SO bad and gave it your best shot. You figured though, that since Santa could see all you do, you stood a good shot of making the naughty list, too. And so Christmas Eve was fraught with a heightened, giddy nervousness. Because not only was Santa going to come that night, but only then would you find out the ultimate judgement upon your soul. A judgement so concrete, so final, that the other kind of judgement taught in Sunday School had all the substance of a heat mirage.

And then someone lied to you. Maybe it was on the playground, or maybe it was your older sibling. Maybe it was something you read in a newspaper or magazine meant for parents.  And all your subsequent fact-checking, your questions to friends, your clever linguistic traps you lured your parents into, all backed up the best lie you've ever fallen for:  Santa. Isn't. Real.

So you thought you were lied to as a little kid. You thought that, like the Easter Bunny and the Tooth Fairy, that Santa was all made up. You thought that, like the monster under the bed, the reality of Santa was somehow contingent upon your now-shattered childhood perception of the world. But brace yourself: the nasty truth is that you - the childhood you - knew the real truth first. And you turned away from it.

You had the certainty of a child's reality, but allowed yourself to be lured by the sultry musk of adulthood. And once you'd inhaled that tangy odor of being a "big boy", you were tainted and corruptible by lies. Big lies. Lies such as "Santa isn't real."  You'd been yoked by doubt, stripped of your childish cloak of belief, and given a new mantle of skepticism.  Poor you.

You know the history by now, right, now that you're a full-fledged, card-carrying, money-earning, alcohol-drinking, SUV-driving, Starbucks-swilling sophisticated adult. A bitter adult, who lives in a world of lies. This history tells us that Saint Nicholas was, truly, an actual man. As real in his day and in his deed as you are and that pesky twice-a-day masturbation habit of yours. But you believe, as other adults do, that St Nicholas died as mortals do and that "Santa" is nothing more than a made-up machina of commercialism. A cartooned stock market for exchanging your values for cheap Chinese trinkets. A golem for greed.

But strip away the buying, the selling, the deadly sin of Avarice. Strip away the comic-book sensationalism of A Night Before Christmas and Rudolph The Red-nosed Reindeer. Take down the nylon light-up, blow-up nylon golden calves glowing in your front yard, and cover over the tracks of the masses beaten into the Wal-Mart parking lot.  Assassinate the false idol.

What's left?

What's left is proof, a thousand, million times over, of the actual existence of Santa Claus. The selfless deeds of neighbor helping neighbor during Hurricane Sandy. The thousands of bikers and Marines gathering toys so that the children of the very poor won't have an empty Christmas. The simple charity of one rookie cop buying a pair of boots for a homeless man. The thousands of men and women who burdened themselves with hundred-thousand dollar student debt to earn a doctorate in the sciences so as to make a paltry living as a research scientist trying to find the always elusive cures to what ail us. The runners who didn't begrudge their canceled marathon, but instead took the day to go out the Rockaways and assist in cleanup efforts.  The organ donors.

These acts are all motivated by the exact same sense of purpose, empathy, charity, and selflessness  that motivated our original Nicholas to toss his wealth through a window into three young girls' stockings as they dried by the fire, such that they may have enough dowry to be married.

This spirit is sometimes hard to see, but it is in us and has never left us. Once we are lied to, we become blinded to it, but children see it plainly. Children see that spirit as a fat man in a red suit and, sure, that perception will change. But if children are not lied to, then only his garb and his face will change, but not the fact of his existence. As they grow into adulthood, they will see the new face of Santa - in the mirror.  And the real truth will out: Santa is - and always has been - quite real.

December 10, 2012.

Common courtesty...isn't.

So as of November 15th, I'm on oxygen.  There it is.  The next major change in the morphology of my lungs has happened and they can no longer provide enough O2 perfusion for activity or during sleep.  (Still OK at rest while awake.)  To me, this is a one of those major waypoints on the CF path, a certain point of no return.  More exercise might get my PFTs up, but it won't improve the tissue function.

It's been quite a learning curve just figuring out how to deal with oxygen as I move about the city, especially the timing of things as I put on and take off my cannula and turn the regular on and off.  Soon, I hope to be on a pulse regulator rather than continuous flow and perhaps make these tanks last longer.  For that matter, I'm looking into trying to get liquid O2 because these tanks will NOT last me long enough for a decent bike ride.  I went through 1/3 of a tank yesterday in a 2-mile ride (at 2.5 l/m).  So how is a tank supposed to last me even the length of a typical home-to-Spaeth commute?

Anyway, this post is about the changes I've seen in the way total strangers interact with me once they notice I'm on oxygen.  I have to preface this by observing that ANY change in physical appearance tends to make people react differently to you.  Anybody who regularly wears a suit and then one day just wears a t-shirt and jeans (or vice versa) can feel the changes.  My fedora is a big game-changer.  I quite simply get more respect, for some reason, when I wear that hat.

So knowing that as we walk among each other, we are all making snap judgements and snap decisions about our own behaviour, we can adjust our appearance and demeanor to suit our goals, if we wish.  Not many people DO, mind you, but we COULD.  And, perhaps, if more people did - and if those snap judgements were a wee bit more considered each time, then perhaps common courtesy itself would be on a rebound.

But that's dreaming, right?  Well...maybe.  Maybe not.

A few nights after I started on O2 while walking, I was passing by an NYU building just as a student was struggling to get out of a heavy door.  Poor guy was on crutches and in a boot.  Damn; I've been there!  I know that struggle.  Everybody else was walking right past, but I took a moment and opened the door and held it for him.  What a sight we must make - one cripple helping another.  OH wait!  I did not just use that word!  Neither of us are crippled - we're just temporarily burdened by certain medical apparatus.  Right.

So...has MY behaviour changed because of the oxygen?  Maybe.

Other people's has, I think.  I was in a grocery store last week; had stopped in to snag some boxes of Uncle Ben's but I also checked for some chocolate-fudge pudding.  And they had some!  I hadn't expected this, so there I was in checkout with my oxygen on and balancing several boxes of rice and pudding in my arms without a basket.  Dumb Dopher.  I dropped a couple boxes of pudding and the guy ahead of my turned around in a sort of annoyed way, but once he spied the oxygen, his demeanor changed instantly.  He quickly picked up the boxes amid my stammering explanation of  why I hadn't grabbed a basket.  Then he pushed another guys stuff further up the belt and dumped his own stuff out of his basket onto the belt so I could unload my arms into his basket.  I was shocked.  Strangers just aren't usually this nice.  Could this have just been coincidence?

Well, I don't think so because I can stack that up against similar observations about a decidedly uncourteous group: smokers.  Now, I don't want to get into a long discussion of what's courteous or not where smoking is concerned.  Suffice it to say that my standards (and other non-smokers') differ greatly from smokers' standards on what is common courtesy.

But now I'm seeing it happen where a smoker hanging out on the sidewalk, who would otherwise not give the first care about anybody else sharing that sidewalk, when seeing my cannula on my face, has clearly altered his behaviour.  Some hold their breath in until I've passed; some have turned 180 degrees to blow their smoke directly away from me or out of my path; some have stepped around a corner or off the sidewalk completely.  Not everybody, mind you, but some.

And if I need any last, definitive proof that my oxygen changes other people's behaviour for the better, there is this short incident:  I was walking near NYU and was trying to cross caty-corner.  I started to cross the streets in one direction, but the light changed and as I turned to start across in the other direction, a group of young men and women strolling up from behind me sort of blocked my path, so I went to step around them and pass in front of them as they, too, waited to cross the first street.  One tall kid didn't see me approaching from his right and crossing in front of him, I guess, and blew out a lungful of smoke right in my face.  I got two reactions.  First was a prompt, automatic, and almost sullen "sorry".  You know - the kind you give to a stranger you've bumped. No harm, no foul territory, right?  But the second reaction came an instant later, after he'd registered my oxygen cannula.  "I'm sorry!" he said again, but the tone was much different - completely honest and maybe a little embarrassed with himself.  I just nodded and kept going; I hope he understood that I understood his apology was genuine.

And THAT never would have happened without the oxygen.



We city-mice very much embody a "just deal with it" attitude about all things.  We enjoy the little trials that would drive our country cousins bonkers.  But even under the gruff and unsympathetic exteriors, there are human beings who understand when the rules of courtesy must be bent for the better.