Wednesday, September 3, 2008

The Isolation Room

When I was about 10 years old, my family and I visited Molokai Island in Hawaii. It's a tiny little place with rocky volanic beaches and not a whole lot of nightlife, and its major tourist attraction is an old leper colony. Being 10 years old, I didn't really grasp what a leper colony was, so of course I asked my all-knowing parents. They explained to me that back in the old days, people with contagious diseases like leprosy were forced to live together in a contained space so as to protect the rest of the population. Forced into contact only with others who shared their same disease.

Lucky bastards.

Most of the readers of this blog are probably pretty familiar with CF. You all know that the CFF has responded to the challenge of cross-infection by advancing strict guidelines. You've probably been warned by your CF doctor (or the doctor of your loved one) to stay away from other CFers. Many of you watched as the CF camps shut down in the wake of the Cepacia scares. You know what the 3-foot rule is. You have a stash of germ masks somewhere in your house. The very words B. Cepacia, MRSA, or multi-resistant PA strike fear deep into your heart. And for good reason. Nothing makes a CFer reach for the Purell faster than the threat of a superbug.

I understand all of fact I fall squarely into the self-protective side of things. I admit that I'm scared to death of resistant bacteria - especially since learning my particular transplant center's criteria - and I'm downright paranoid when it comes to exposure to new infections.

But that doesn't mean I have to like it.

Look, CF sucks. It sucks to cough all the time and to be constantly dealing with IVs or treatments or weight issues. It sucks even worse when people don't understand, when the stranger in the movie theater turns and glares when your cough interupts the crucial action scene, or when the cashier at the grocery store can't stop staring at that PICC access in your arm. And it sucks the worst when you are told, again and again, that it is simply not safe, not smart, not fair to yourself or others to meet up and spend time with the one group of people who might actually, finally, get where you're coming from. That group who doesn't find your O2 cannula disturbing, who understands what you mean when you throw around terms like "plug", "port", or "FEV1", and that doesn't start looking around for your car when you mention a "tune up."

So yeah, I get it. People gotta be cautious, and deciding when to take risks about cross-infection is a personal choice. It is not a judgment against those with the superbugs or more virulent infections. It is not about trying to create a culture of isolation; it's about keeping healthy. Like those Hawaii citizens of old, we do what we can to protect our own health, even if it means sacrificing the feelings of some others. We're all just trying to survive.

Still, does anyone else miss the leper colonies?


  1. =D

    Love it!!! I do miss the leper colonies and wish we could all just happily get along w/o bugs!

  2. I miss the leper colonies! But, at least we have blogland to connect with each other.

    I stumbled across your blog somehow and I just wanted to say hello! I'm a 26 year old CFer.