Breathe Easy

Earlier today, I gave up on writing a blog post for this week. I wrote three paragraphs, tweaked them for a while, and then erased them. The writing was clunky and uninspired and I couldn’t find the words to articulate what I wanted to say. Mondays are typically a day off for me. So, after my failure to write, I went back to my usual routine of catching up on the various blogs and YouTube channels I follow. While I was doing that, my mind continued working on the problem of what to write about. Feeling sluggish and defeated, I drank some tea to try to muster up enough energy to accomplish something meaningful this evening. Turbocharged with a bit of caffeine, my brain finally kicked into gear and I arrived at the topic for this post: my disability. Makes since for a blog entitled “Invaluable Invalid,” right? More specifically, this post will be about my perspective as shaped by my disability and the recent, invisible trial I’ve recently conquered (for now).

For as long as I can remember, I’ve always dealt with physical limitations of some kind. First it was falling down frequently. Then it was the inability to walk long distances and soon after, the inability to walk at all. The progression continued until I reached high school. By then I couldn’t stand or lift my arms above my head or shower or dress myself, but I could still eat, write, speak, sing, and do most of the other things I liked to do. I started taking a corticosteroid drug at that time that seemed to significantly slow the progression of my disease. For a good stretch of time, maybe 8 to 10 years, I didn’t experience any noticeable decline in my ability to function. I’m sure things got harder or I adapted to the weakness over time, but the degradation of my condition was so slow that I barely noticed it.

After I broke my hip in 2013, I started noticing a more rapid decline. It was minor at first: my appetite waned, feeding myself became more difficult, and brushing my teeth took more effort. My heart and lungs were still pretty strong. I could still speak and sing pretty normally. Then I got really sick last summer. You can read all about it in Summer Storm. Once I made it through that, my lungs were a little worse for wear. Sometimes I felt fine; other times I felt short of breath, making it difficult to talk and impossible to sing without frequent pauses to catch my breath. Although I tried not to let it show, the difficulty I had breathing was affecting the way I lived my life. On days when I felt short of breath, I didn’t feel comfortable talking to people at church or other events because I couldn’t speak loud enough to be heard, for example. I’m already an introvert, but this whole not-being-able-to-breathe thing was making me more that way. On the increasingly rare days that my breathing returned to normal, I felt almost superhuman.

So I’m thinking: do I need to go on a ventilator? Is this it? Is this the end of my so-called untethered life? The answer for me was still no. In quieter settings, I had no problem being heard. And my breathing wasn’t labored just sitting in my chair. Still, I had to figure out some way to improve things. I started experimenting with my breathing equipment to see if that might help. At night I wear a BiPAP machine, which uses positive air pressure to push oxygen into my lungs and negative air pressure to pull carbon dioxide out. Up until several weeks ago, I would take my BiPAP mask off in the morning when I rolled to my side for half an hour to an hour before getting up. This was allowing fluid or carbon dioxide or something to build up in my lungs, which made breathing more difficult throughout the day. By keeping my BiPAP mask on from the time I go to sleep to the time I get out of bed, I have been able to keep my airways much clearer. That, in turn, has made loud social settings a little less daunting, at least from a breathing standpoint.

Good—bullet dodged, right? Well, yes and no. Whether it’s five months or five years from now, at some point I’ll probably to have go all Christopher Reeve and get a fancy tube installed in my throat. Will that make it impossible to work or disqualify me from dating or eventually marriage? No on both counts. And if anything it will only serve to strengthen my testimony for Jesus. Still, it is scary to think about. So, what have I learned from all this? Simply to be grateful for every day and trust that, despite whatever the future holds, God is always right there with me.