Have you ever been sitting in a room and noticed the sun shining in at an unusual angle – an angle that makes you study your surroundings?
Summer light in the late afternoon with its brightness creates this odd effect. Dust particles float in shafts of light. I breathe that every day? you ask yourself. The room takes on a different look and feel. You notice design elements you forgot were there, such as the wood grain of the coffee table, or the texture of a chair’s fabric. You see details you normally don’t see which hide in plain sight the other days of the year.
I have those moments with CF.
When I was a child, I took powdered enzymes in applesauce. Then, at some point, I couldn’t do it anymore. I gagged on the applesauce and the terrible taste of the powder. They gave me solid pills when that happened. At some point I remember switching to Viokase, then Pancrease, and now Creon. Along the way I probably crossed the “300,000 pills taken” checkpoint, perhaps 350,000.
I often forget that most people don’t take pills with food. The other day I wondered if my wife had taken her pills before eating. Only one problem: she doesn’t have to take them because she doesn’t have CF. But for a moment I thought the norm for everyone was taking a handful of enzymes with meals.
Last night I was doing my inhaled treatments, which I do every single day without fail, and it hit me again that this is something most people do not have to do two or three times a day everyday. It’s routine for me. It’s white noise. But this was one of those brief moments when the sun shined in and I saw my situation in a different light. I noticed, became aware of, was reminded of the absurdity of the daily routine needed to stay out of the hospital.
So, I opened up a little box in my mind, placed the thought inside it, and shut the lid. Then I did two hypertonic salines, my Symbicort, my Spiriva, my heart medicine, and my Cayston, and headed to bed. I knew tomorrow I would repeat it. And again the next day. And the day after. And, with hope and luck, for many days after that.
And I thought: some days it’s best to ignore dust in the light.
The Unknown Cystic 
What a fabulous post – very well written.
It’s funny you mention the whole thing about taking enzymes before meals. My boyfriend and I always ask each other “Did you take your Creon” and he’ll always make comments like “I thought I forgot to take my Creon, but then I remembered I didn’t have to”.
I had one of those moments today – a realization that all the stuff I deal with is not the norm for other people. It only lasts a few seconds, but the fleeting thought is still very upsetting to me. Fortunately the older I get, the fewer those moments become. I try and stay in my zone and keep my eye on the hope of new drugs coming to market. Never soon enough.
Thank you, Stina. Very kind of you to say. I appreciated your tweet, too.
I imagine at your youthful age, as I was once that young, it would be harder. I had my moments, too, back then. Knowing what I know about you, I can say you have it together a lot more than I did. When those moments “unsettle” you, remember what a great job you are doing fighting CF. And there are more reasons to be hopeful than ever. I keep reading great things about the new drugs, including Manitol, which surprised me. Lots to look forward to. Hang in there with those new sinuses of yours.
Best to you.
UC
I think the same thing every single morning. Then I just let it go. It sucks, but it could be worse.
Peaceful things, my bag-headed buddy. Peaceful things.
Thanks, Josh. I shut off the light and the routine continues. I look forward to the day I can lie flat on a bed again and not have treatments to do before I sleep. But it’s all good, as the straw man says.
Thanks for the visit and comment, friend of Moganko. BTW, is your wife jealous of Moganko yet? I want to see the video, “Josh and Moganko go bar-hopping: the lost weekend in Mogankoland.” It’s like the lost weekend Lennon spent with Harry Nilsson. Rocking good time with that orange buddy of yours. 🙂
These are sort of my constant background thoughts. Thanks for putting them into words. You are a great writer. There’s something about the way you write that really makes me feel comfortable and relaxed, as if you are a longtime friend even though we’ve never met.
Dr. Nanos,
I am humbled by your kind words, which mean a lot coming from you. They have extra meaning, and I appreciate them a lot, because I spent a lot of time on that little post. At one point, I thought “oh, just press ‘publish’ you nut job. It’s not perfect, but you can’t spend all night on it.” But I did spend all night on it agonizing over every word to get it right. I’m not sure it’s quite what I wanted but what post is ever what you intended it? Your comment and my other friends’ comments made it all worth it. Thank you.
I am honored you think of me as a longtime friend you’ve never met. I feel that’s better than being the Chipotle worker you wished you’d never met – the one who messed up making your burrito. I’m glad I’m not that person.
BTW, one day I may forgive you for posting that image of the cow with the hole in its side. Once I can forget about it I will. I’m afraid that may be never.
Your crazy friend,
UC
I agree with Nanos. Reading your blog is much like having coffee with a friend…warm, relaxing, and always enjoyable, regardless of topic. I get what your saying, totally. Its from a different angle, but i get it. love and light to you and yours always. ~j
JULI, JULI, JULI,
Hey you. How nice to hear from you. Yay. Thanks for checking in. I’m hoping you’re doing well. I’ve been reading your blog.
Thanks for the nice words about the post. I think I’d better start writing to hard rock and not Coffehouse on Sirius. 🙂 I’m joking about that. My wife listens to that station. Hmm, it must be rubbing off on me.
I’m glad you get what I’m saying because I don’t. I reread the post and I still don’t understand it. Thanks for explaining it to me.
Guess what? We are nearing the start of our favorite sporting season. Broncos/Saints Superbowl. It could happen.
Best to you as always and much fun for you and the family.
UC
it could happen, and if it does……i’d totally root for your team, secretly of course so as not to be disowned or thrown out on my behind 😉 soooo very ready for it to get here!
Whenever i am out with my CK Kid and her mates, say in the park and somebody breaks the choccie out I freak out for a small second every time i see a kid eating WITHOUT Creon. I just forget that all kids don’t need it. Then i remember… it all comes crashing back.
That’s interesting. It seems like many of us do it. Thanks for sharing the story.