December 16, 2012

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.

No comments: