When I was first diagnosed, I walked around thinking: Oh my god, I’m dying! How can that be? It seemed surreal, because I looked and felt in great health. Barely 30, I’d been a gym habitué for years. I ate well, got enough sleep, and spent most of my waking hours in some type of motion. Furthermore, the timing and setting were all wrong: I’d just moved to San Francisco to be with Dan. It was scenic, sunny, beautiful. We were always biking and hiking. He was teaching me racquetball. It only began to sink in when I picked up my tennis racket for the first time in ages and discovered that I could barely hit the ball across the court.
You can’t really function with your head on the executioner’s block – at least I couldn’t – and the sense of immediacy gradually grew duller. I don’t live in denial; it’s more a state of deliberate myopia. At any given point in my progression, I’ve been grudgingly okay with the status quo, but I’ve trained myself not to contemplate the future. It’s a dark and scary place for me; even brief glimpses spark anxiety and depression. Better to focus on the present and count my blessings, something I rarely did before ALS.
Myopia might not be an option if my progression weren’t so slow. As it is, I often have the sense that my deterioration has plateaued. But whenever I’m lulled into cozy complacency, ALS has a way of bitch-slapping me back to reality and reminding me who’s running this ride.
The week before last, I caught a cold. Normally I’m not too aware of the decline in my breathing and swallowing, but the moment I got a little phlegmy it became uncomfortably apparent how compromised both were. With an easily blocked airway, clearing my throat became an exercise in terror, and what would have been a moderate annoyance for a healthy person proved truly harrowing for me – and a humbling reminder of my ever-increasing frailty.
I’m all better now. Well, not all better, but over my cold.