Before 2008, I had not been in the hospital ever. I was even born at a Grateful Dead concert because my mom and dad were passionate Deadheads. OK, that part is not true. My parents are normal, and I was born in a hospital. But, other than that, CF has never gotten me. Life was pretty all right. I was married for about a year and just got a radio job.
Then 2008 hit.
Three times in the hospital in the span of one year. I was sweating in my sleep so bad from perpetual infections that I couldn't be in the same bed as my new wife. It's embarrassing to use bedwetting sheets when you're 27.
And what was I supposed to do at this new job at a Christian music station?
I had been working in TV since 2004, which was very enjoyable, but it was all behind the scenes. Now, in radio, I got to be “the personality.” Fun! And, since I wasn't exactly bathed in the culture -- I knew one Christian artist when I started: Steven Curtis Chapman. The rest of the time, I felt like I was saying, “That was the new song Glabla from Hobie and Blabble” -- it was a great experience to learn why people listen to Christian music in real time. But, all of a sudden, I was having trouble breathing -- let alone talking, and certainly not laughing -- and often found myself in an irrecoverable coughing fit.
So, thank God, I got to pre-record my talk breaks and could still make it work -- although during allergy season there were days where it barely did. Even more so, thank God for the Kalydeco® (ivacaftor) study I got into in St. Louis. It was double-blind, so I didn't have any idea whether or not I was on the drug or the placebo. But I knew from day 1 -- I was on it. I felt that much better instantly.
I even told my research techs, “I'm 100% sure I'm on it.”
“You can't tell us that.”
“Please don't kick me out of the study.”
And, I didn't go into the hospital for another five years -- and only once -- in the last 12 years. That one hospital visit was because we had twins in 2014! I wasn't sleeping much that year, but this new pill had changed everything.
My twins are now 6 years old, and we added a third child who is 3. From 2016-2018, I got to create and host a TV show called, “Song Stage,” on PBS. More important, during that same time, I created a show called, “What It's Like to Die.” It was about individuals who died and had afterlife experiences. Many heavenly … others not so much. It's a topic that raises eyebrows.
When I get asked why I made, “What It's Like to Die,” I think it's because of 2008.
I really didn't think I had much time left, and that changes you. It makes you think about death and the terrible reality of it.
In fact, if you're reading this, and you think the subject is too macabre for the CF community blog, that's because you've never been there. Lots of CF people have, and we think about it. We get mad. Why do we have to deal with this? Will I get to leave a mark on the world? Am I even capable?
Here's what I've discovered -- that thinking about life from birth to death is depressing when you have CF. It will probably be shorter than most, and -- even if it isn't -- you'll have a crappier version. But if death isn't the end, then there's a whole lot to look forward to. And that's probably why I sought out people who went past “the light at the end of the tunnel.” I wanted them to make it more real for me. And they really have.
But there's still the here and now. Right now, I'm working in radio again.
One thing nobody tells you about radio is that every single major studio has this little thing called the “Cough Button.” I've worn mine out.
While I'm much healthier now than when I hit bottom, I still have CF and all the little things you already know about -- like that you sometimes have to think about breathing. Shouldn't breathing just happen? Well, yes, but when you're moving or talking, you've got to control it, so it doesn't control you, and you have to devote brain-space to it that others don't.
So, I hope I have a long career ahead of me in radio, or TV, or whatever God has in store, but -- the truth is -- I really don't know. Nobody does. CF or no CF. We're all fragile, and we all have an expiration date. The Cystic Fibrosis Foundation and all this awesome research that's being done have extended that expiration date for some of us with the disease, and for that I'm very thankful.
Don't let cystic fibrosis become your identity. You're more than a defective gene. This life is stupid, but you are made for a purpose.
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