You wake up in the morning. You cough a few times, and a little phlegm comes up. You hardly notice and swallow it, willing yourself to find the energy to move out of bed. You crawl out of bed, walk out of the bedroom, and quickly find something to drink – you know it’ll be painful otherwise.
Unfortunately, you don’t reach the kitchen in time. The coughing begins again, only this time, you can’t suppress it. It won’t stop. And you’re not even coughing anything up! Next thing you know, you’re desperately swallowing air, trying to keep from throwing up the contents of your stomach. You fumble through the cabinets for a cup as you’re still trying to control your body. You quickly run it under the sink – oops, the water was on warm (no time to worry about that now) – and take a swig of the lukewarm water.
Your chest depresses, your shoulders relax, and your breathing slows a little. You might still cough, but for whatever reason, it’s controlled now. And now you’re out of breath from walking to the kitchen.
You lean on the counter for support. You huff and you puff, but there’s very little respite besides waiting and hoping your heart rate and breathing slows. A few minutes later, you’ve caught your breath enough to make some coffee. At least this part of the day isn’t so bad…
Sounds rough, right?
That’s life as usual with my lungs. And that’s only the first 10 minutes of the day.
So without further ado, I introduce to you the disease I refer to as Thing #3… Primary Ciliary Dyskinesia.
Primary Ciliary Dyskinesia is a disease that infects every facet of my life. It drastically affects my breathing, which as you might suspect, is something I do on a regular basis. The overly simplistic way that some doctors may describe PCD is that it is similar to Cystic Fibrosis (which a lot of people have heard of). However, that’s just not true. PCD is not CF. Unfortunately, because PCD is so stinking rare, it’s treated like CF, because that’s all doctors know how to do.
There is no cure.
The best way I know how to explain PCD is as follows. Basically, you have little finger-like entities all over your body called “cilia.” These little fingers work to keep things flowing. Unfortunately, my cilia are dysfunctional, sluggish, and just don’t work right (for whatever reason). As you can imagine, this is a problem.
Because these fingers in my lungs don’t work correctly, my lungs collect mucus. Lots and lots of mucus. Buckets worth, I’m sure (though I’ve never coughed up that much at once). And as this mucus collects, infections occur. And then my lungs get sick, become irreversibly damaged, and my breathing worsens.
Practically, PCD means a few things in my life.
First of all, it means that I spend about an hour and a half every day doing things like chest physiotherapy and taking medicines through my nebulizer. This time varies, and is usually more, but sometimes less (when life gets in the way).
And then there’s that whole “living” thing. As of right now, I have the lungs of someone who is over 85 years old. For the record, I’m 21. I turn 22 soon, so you never know – my lungs could improve a little! But, most likely, they’ll slowly get worse.
Now, before you get too sad, let me say this: my doctor says I should expect to live a full and rich life. If I continue to be aggressive in how I attack this disease, I will see more years than I can count.
It’s quite the paradox, though. I have to spend the time I have while I’m young attacking a disease so that I can live fully later. Frankly, it sucks.
But then the light bulb *clicks*
I’m a walking, talking sermon illustration.
What I’ve learned from PCD (so far) is this:
We’re each fighting a disease. It eats away at us every day, and trust me when I say we can’t be cured. Eventually, our disease will overtake us, and we’ll pass from this world.
But there’s a treatment.
Now before you get too excited, let me tell you this: it won’t. be. easy. It’ll be painful, time-consuming, and at times, tedious. It’ll take you away from the things that “normal” people get to do. But it’s much better than any physiotherapy I ever have to do for PCD.
It’s therapy for our souls.
It’s not quite a full-on cure, but it’s what we’ve been given.
And eventually, for a moment that will last as long as the blink of an eye, we will pass from this sickness into marvelous light.
And then, maybe then, we will understand the pain, the sickness, and the numerous hours spent in therapy for our souls.
And then, and only then, we will be healed.
Bio – I’m a 21 year old Christian college student, a writer, and an aspiring Marriage and Family Therapist. I’m into video games, marshmallow gun wars, TV shows on Netflix (namely Psych, Bones, and The Office), and my smokin’ hot wife, Kalyn. You can follow my musings on my blog, Life Before the Bucket, or through Facebook and the Twitterverse.
Blog - www.lifebeforethebucket.com
Facebook - facebook.com/lifebeforethebucket
Twitter - twitter.com/awaller1990