Sinus infection. Day 6. Incomplete thoughts. Lots of wall staring, and, look, there’s an Amazon box in the corner. Ohmygod, I just figured out the Amazon logo. Just now. The A is pointing to the Z. A-Z. I can’t believe I just noticed that. I am an idiot.
I managed to hang in there for Scarlett’s 6th birthday last week, and then. The sore throat, the stuffy head, my body just let go. I estimate that I get sick like this once a month now. My immune system cracking like an eggshell, exposing my many vulnerabilities. If it turns out that I’m made of nothing but oozing egg yolk, then the only thing to do is chug bright orange DayQuil, with its poisoned candy taste.
Perhaps I’m being a tad dramatic about this.
For days, I’ve been trying to ignore my symptoms, thinking maybe I can will this infection away. Start small, and then use my evasion superpowers against the ALS. Alas, that’s harder to ignore. There have been lots of ALS meetings lately. An ALS TDI Ambassadors call, an Every 90 Minutes advisory board meeting, an ALSA advisory panel call. Everyone is busy, lots going on. Lalala. Still no cure.
But here’s something cool. The latest season of Deadliest Catch features Captain Sean Dwyer, whose father Pat died of ALS in 2013. This is a big opportunity to introduce a new audience to the disease. Plus, perilous fishing situations! You can watch the season premier here.
It makes me feel productive to be a part of these groups, even though it’s sometimes frustrating to note the lack of progress. I want magic. overnight solutions, immediate action. A silver bullet, that sudden stupid clarity of A-Z. Toes that rise and balance the weight of my entire body. Fix it, I want to say to everyone. Call me when it’s done.
In other news, I have a 6-year-old now. That feels like an accomplishment, because I’ve heard people say that kids’ characters are set by the time they’re 6. As if my job is complete. I’m guessing anyone with a 7-year-old (or a 15-year-old, for that matter) would take issue with that statement. But when you have ALS, and young children, you take comfort where you can find it.
My head is a beach ball. Swollen and empty. I know, I know. Earlier I said I was an egg. Pick a metaphor. I am a rock, I am an island. These words are a struggle, dictation insists on misunderstanding my sick voice, even more than usual. On days like these, I realize that no one expects anything of me, and it’s a semi-reassuring thought, but also kind of sad. I used to be reliable. Now I’m not really sure what I’m supposed to be doing.
Who will plan dinner? Who will send the Amazon box back, because the Hogwarts robe inside is the wrong size for Scarlett, which I realized in time to order the right size, but couldn’t summon the energy to deal with the return?
Who cares?
“Why don’t you take a night off from worrying about everything?” My husband said to me last night.
“Because then what would I think about?” I asked.
So today. Sleep. Blissful in my bed, during the actual mid-morning, time stolen away from…what? Facebook? Crossword puzzles? The blog? Sleeping, today, is so much better than thinking.
Rob is right (this time.) I can give myself a break, let myself rest, not let it mean more than it means. I think part of me assumes that if I start spending my days in bed, I’ll never get out again. And we can’t have that. There are discoveries to be made (how many more logos have I neglected?), the six-year-old who probably still needs me despite her advancing age, and I’ll have to see what happens on Deadliest Catch.
For now, more wall staring. I’ll call it meditation.
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Feel better sweetie. And I rely on these posts to lift me up…which they always do! Love you!
sarah: I just had an idea. you (and a helper) could make a book for your daughter. print out your favorite blog posts, let her make an illustration (or not), and have it as a gift for her teenage/young adult self, to learn about her mother.
Bind the book with ribbons, and put away in a drawer. I’ve done these books with people before. Your posts are so beautiful and poignant, this last one particularly.
❤️
Thanks for the shout out Sarah. Staring, um I mean meditation, is not recognized enough as a fine way to spend the day. xo
I did not realize the a▶️Z either!! I hope you feel better soon Sarah it’s ok to rest. I’ll be waiting for your next meaningful clever post
I think you should have that 6 year-old decorate your walls so you’ll have things to ponder as you stare. You, Sarah, are a precious gift to all you touch with your heart and spirit. I hope you can breathe easier soon.
Hello Sarah,
Not true at all. I was expecting from you. I checked you blog a couple of time in the last few years and I though you would be on holidays or something. Again, I cannot do anything beyond wishing you an speedy recovery but I do it with all my heart.
Big hug!!!
Feel better! Sinus infections are BLECK!
Sometimes wall staring leads to deeper considerations and even some peace. I hope you can feel that peace, even as you wonder what useful things need to be done or what needs to be worried about. I am working on finding that peace, myself, and I think slowing down to stare at something, even a wall, can be helpful. Play some sweet music. Let your mind drift. It’s ok to stare, really.
Love this idea!
Oh holy hell. I never saw the A to Z thing, and I work in advertising. I thought the smile meant “Look! A package!”
People do count on you. There are a few writers I read when I hit a wall in my own writing, and you’re one of them. Reminds me how it’s done.
And yes, the world needs more people willing to use profanity in meetings. Is patience really such a big virtue?
A to Z. Mind blown. I don’t think I would have ever figured that out!