Category Archives: Life

You can call her Leroy

Today is my little sister’s birthday. I’ve written about her here. And here. Also here, and sort of here.

So anyone reading this has access to a lot of information about Liz and our relationship, and how I think she is exceptional. I don’t call my sister by her name a lot. It’s usually Leroy, a holdover from our childhood (Lee for short), and other times it’s Shishie, because that’s what Scarlett calls her. Even my nephew Jack, her own son, refers to her occasionally as Shishie. But the best development by far is that her husband now sometimes calls her Leroy. This is how you know that big sisters are in charge of everything.

Since it is Liz’s birthday, I’ll use her regular name for the rest of this post. Liz listens to me whine a lot. I don’t mean to, but sometimes when I’m around her, all of my frustration and anxiety come spilling out, interspersed with stories about bizarre things Scarlett has recently done, like spitting on the dog. I usually do all this while she’s helping me shower, because she’s trapped and she has to listen. Sometimes when I’m done whining, I ask my sister what’s going on in her life, because of course I do care.

My favorite mornings are when Liz brings over her homemade pumpkin muffins, and Liz, if you can’t tell that this is a hint then you’re not reading closely enough. Read More>

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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? Read More>

|Categories: Drugs, Life, Progression, Relationships, Therapy | Tags: , | Permalink

Labor Day

It’s Labor Day today, and I guess technically I should not be writing, because the blog, while a labor of love, still definitely requires work. These days it’s easier to think of the words than to get them on the page, so I wait for a burst of energy, type what I can and then switch to dictation, even though the sentences never quite come out right. Then there’s more typing to correct all the weirdness. It’s laborious for sure.

When I was gainfully employed in the publishing industry, I knocked out emails like it was the easiest thing in the world. Day and night, using those typing skills I’d first learned in 6th grade computer lab. Now I’m so behind in basic communication that it’s embarrassing. I should have an auto reply on my gmail and text platforms: “Sorry, I am unable to reply to your message in a timely fashion because I used all my energy to put my contact lenses in. And by the way, it didn’t even work; my husband ended up putting them in for me. I’ll try to get back to you at some point this month.” And then some emoticons: a kissy face, a surprised cat, a thumbtack, the Golden Gate Bridge. Just because. Read More>

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