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.