I’m drinking tea and waiting for the visiting nurse to come. She checks my blood pressure, listens to my lungs, examines my stick skinny legs that lead to feet so swollen it looks like I could use them to paddle a rowboat. I like the nurse because every week for a month she’s told me she detects no change in my progression. Her focus is mainly on my breathing, so it’s always a relief to hear that my chest is clear and my oxygen levels high. She calls me “love.”

ALS is a tricky disease. When a muscle starts to go downhill, you can’t help obsessing over it, and obsessing over your breathing turns out to be a great way to feel like you maybe can’t breathe. Anyone who has ever had a panic attack probably knows what I’m talking about. It can be hard to decipher the real dangers from those that are merely in your head. Harder, still, when you truly can’t trust your body to function properly.

For now, the nurse tells me, my symptoms can be managed with anti-anxiety medication and Aleve. I take a few pills a day, when my chest feels tight, when my ankles feel like ticking time bombs. It works, so that even though my breathing remains shallow, I can always manage to stay calm—and conscious.

An aside: Why are shallow people called airheads? Read More>