But You Seem so Healthy

Some of you are shocked that I have cystic fibrosis because I lead such a normal, high-octane business owner life with a family, fostering, and two boys. Most of you are shocked that I am to the point where I’m ready to be listed for a double lung transplant because you just saw me as recently as September or December walking around a WordCamp. True, but I’ve learned over the years to carefully hide my issues and live life as normally as possible. However, now I’m about to get a handicap hang tag so I don’t have to walk as far when we go out, so that’s a whole new world.

Before I go into how I hide it, I’ll admit now (under the slight scorn of my wife’s shock that I feel this badly) that perhaps hiding my symptoms wasn’t the best approach to not overworking my system, but my “normal life” isn’t all about keeping on trucking with no stop.

One of my best approaches is to play my introvert card as heavily as possible. Just find a place to sit and people watch or pull out my laptop or phone and ensure I’ve got my heart rate down and caught my breath. It works very well. Until very, very recently, someone coming over and talking to me, even at length, was more an introvert exhaustion than a CF exhaustion. Now a long conversation does make me winded.

I’d make every effort to walk places alone so I didn’t have to talk to anyone and get behind on my oxygen consumption. I still managed to hide being out of breath most of the time when I couldn’t avoid this situation. I’d leave to the bathroom to have a huge coughing fit alone or in a stall to avoid a public display of turning 3 shades of red and purple. My spasms make everyone uncomfortable, which then makes me uncomfortable. A long conference day or long meal with lots of laughing often leads to an anxious search for a quiet corner or bathroom not flooded with people with bathroom needs.

I know that writing this all out seems like I’m ridiculous… in hindsight. I’d also normally not let anyone in my business network know en masse like this, but I see the transplant as a speed bump that people should be aware of for a multitude of reasons. Then I plan on being business as “normal” when I’m fully recovered and pretend I don’t have CF again. I pretty much won’t have CF except for the tight medicine schedule and becoming an overboard germaphobe. I have super-duper masks arriving tomorrow for comfortable wear to avoid situations where we find out someone is or has been sick.