I’ve been holding onto this one for a while now. Since April, actually. I wrote this for my last English class to get my degree and submitted it to Newsweek in April. They require anything they publish to not be previously published, but it apparently didn’t make the cut, because they’ve have it for the allotted time to make a decision to publish it. Now it’s mine after the wait, so I’m going to use it here and re-purpose it for an online magazine soon. It’s more of an essay than an article like I usually write, so I hope you enjoy it just the same, despite many “givens” about CF that we already know as a collective group of readers.
That Sure Is a Bad Cold
My doctor says I’m doing great. “You’re over thirty and haven’t had a lung transplant yet,” he says with a big grin of approval of my condition. Only patients who are generally compliant with their treatment regimen and not in dire need of immediate medical intervention receive this grin.
Cystic fibrosis is the most common fatal genetic disease in the United States, with over 30,000 children and adults who carry the recessive genes from both of their parents. There are over 10 million carriers (those who only have one copy of the CF genetic mutation) in the U.S., which comes out to approximately one in every 30 people.
From a lifestyle point of view, cystic fibrosis isn’t much different from progressive, terminal conditions, such as multiple sclerosis. Things start out great as a child with medicine to keep trouble at bay. Some even enjoy a blissful unawareness of the disease due to a mild mutation of the gene that causes it. Generally, in the teens and twenties (when Mom and Dad aren’t an iron grip of treatment police), things take a turn for the worse. From then on out, it’s a battle against damage done and the natural progression of the disease transforming the lungs into something straight out of a horror film.
One of the unique decisions that we face is the timing of letting others know about this genetic atrocity. Often, the symptoms of the condition make it obvious that something is different with us, but I prefer to wait until a relationship has been established before entrusting others with, what I consider to be, somewhat personal information. Unlike someone in a wheelchair or with an obvious physical deformity, I can hide or disguise my CF for weeks or months.
I began working from home eighteen months ago and struck out on my own a year ago, forming an LLC with my wife and carving out a nice niche of work in my field. The newfound freedom to travel came in handy by allowing us to go to Ohio for a family vacation and I was able to connect with another guy in my field.
