The Nurse Visits (or) Sarah Goes Off on Several Tangents

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? Don’t answer that, I do understand how slang works. But it sounds like a paradox to me. I wish to be filled with air, to never struggle for it. Air in my head, in my lungs, deep in my diaphragm. It seems that it’s the opposite of shallow. A body awash in air can go so much further. Also, Airheads the candy were so heavy and sticky, not light or fresh at all. So…bad name. Do they still make those? They DO! Sick.

Scarlett had her first soccer practice yesterday, and the field was hot and dusty. I could feel little particles of sand in my throat, drying it out and making it harder to talk. But I have a bit of a problem not talking in social situations, so I just went ahead and did it, sipping water to soothe my throat and thinking that it was unlikely that I’d pass out at soccer just from being overly conversational. Sometimes in those situations, I can feel my body working to push words out, and I think to myself just shut up and rest, but myself doesn’t listen. I like talking.

Scarlett likes talking, too. She hopped in the car after school and regaled us with tales of lunch (corn on the cob), reading (she read two books by herself, but not actually all the words), her fears of Otto throwing up (which he did, in the car, after soccer, as though she’d willed it to be so. Scarlett then spent the remainder of the ride screeching in horror as Otto snacked on his vomit.)

The nurse has come and gone. She said all the things that I wanted to hear, and she moved my arms around in range of motion exercises that brought me back to my days of kickboxing in college, when those same arms moved like windmills and my tightly wrapped fists landed heavy on a black body bag. Back then I was strong, even if it was college and my job as a bartender meant my diet was mainly sugary shots and fried cheese. I moved to California and got healthy, and now I have a nurse monitoring my breathing. Life is weird.

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2 thoughts on “The Nurse Visits (or) Sarah Goes Off on Several Tangents

  1. Nana

    I’m so glad your report was good and I like your nurse. Otto sounds like a character. Can he sit on your lap and look out the window. That did it for your Aunt Louise. I love you. N

  2. Darren Alessi

    LIfe is weird. I’m glad your nurse reported no progress Sarah! Let’s keep it that way, eh?
    xoxoxoxo
    -D

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