Category Archives: Relationships

No Thanks?

Thank you. It’s a lovely, clean little phrase that everyone should use on a daily basis. I often have to coach my daughter to say thank you at the appropriate time: the end of a play date or when food appears before her or when someone says she’s cute (because, to this last one, she is historically more likely to respond with I know.) I work with her on this because I want her to be a successful member of civilized society, a place in which it’s important to acknowledge the efforts of others. And because, in theory, there’s nothing wrong with these two words when strung together and used to express genuine gratitude.

For me, however, thank you has become something more complicated. At this point in my ALS progression, I need help with almost everything. From the start of my day, when my breathing mask is removed, through meals which are always prepared by someone else and often fed to me, to a bedtime routine that involves being dressed in pajamas and placed back under the mask, I am uttering the same phrase over and over until it simply becomes a constant reminder of all the autonomy I’ve lost.

Of course I want to thank everyone who helps me for every single thing that they do. But imagine saying thank you out loud to yourself as you make your way through your day. It goes something like this:

Thank you (for getting out of bed)
Thank you (for putting on a shirt)
Thank you (for putting on pants)
Side note: etc. on the other articles of clothing, but you can avoid one thank you by not wearing underpants. Just saying. Read More>

|Categories: Life, Relationships, Venting | Tags: , | Permalink

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>

|Categories: Life, Relationships | Tags: | Permalink

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