Here Comes the Sun

It’s a dreary morning in my head and out my window. The sky is so white with fog that I feel like I’m trapped inside a snow globe. Our outdoor furniture is dirty, the white chairs leaning against a red table, water drifting down their backs in slimy lines that pool at the bottom and speckle the chairs black. San Francisco summer.

It hasn’t been like this every day. Usually, the sun pops through, and turns the yard into a griddle, but I never wear sunscreen because I just feel like I have bigger things to concern myself with. So most days I sit  outside and sizzle my face a little more and try to meditate without concentrating on how shallow my breathing has become.

But on a wet and cloudy day, there are just windows for watchers, and that’s what I am. I can see seagulls flying over the ocean. I can see Otto pacing back and forth on the deck, head down sniffing at something through the wooden boards. When he sees me watching, he comes to beg at the door,  but there’s nothing I can do for him, and he wanders away.

The gloomy day either fits my gloomy mood or is the cause of it. It’s one of those days when Rob and Scarlett walked out the door and I felt like I had nothing left. Don’t feel sorry for me: first of all, I hate that, and second, I’m halfway through a cup of tea and I’m pretty sure there’s an attitude adjustment lying at the bottom of it. So I’ll just drink toward that and mull over the costume catalog that arrived this week and launched an avid discussion of Halloween in our house.

August is always the time when we start talking about Halloween. I don’t dress up anymore; I gave it a try for a few years when Scarlett was younger. A jack-o-lantern: orange shirt with toothy construction paper triangles and a green cap. Pushing an empty stroller past the houses giving candy, so I wouldn’t fall over. Scarlett running from house to house on her chubby toddler legs, unable to believe her good fortune. The next year, I put on a pointy black witch hat and taped a stubby broom to my walker to show what a good sport I am. After that, I decided to focus on kid costumes.

This year, Scarlett wants to be Zombie Girl. Or no no wait, Catwoman! Or maybe a rainbow teddy bear because that comes with an actual stuffed animal and she’s a savvy kid. More is better.

And look! Like some kind of magic trick, I finished my tea and the sun came out. If I have magic-tea-related powers, I’d really like to use them on something else, like my pitiful motor neurons or the misfolded proteins playing rugby in my brain. It’s probably too much to expect from a bag of Earl Grey, though.

So I’ll be content with the sun for now, and my newly downloaded Tana French book. There is plenty to feel good about, funny how that suddenly becomes evident. Even the chairs don’t look as dirty anymore. Actually, they do, but I’ve stopped caring.

This week a friend told me how frustrating her #whatwouldyougive challenge was, and how she thought of me and how often I must be annoyed because no one does things for you the way you would do them yourself. It’s true, and I have felt that way, of course. But you kind of have to get over it after a while. It’s like sitting in a snow globe, waiting for the sky to clear. You’re still trapped, but once the sun comes out, things always get a little easier.

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10 thoughts on “Here Comes the Sun

  1. Alina

    The days that I check your blog and there is a new entry are such a treat for me! I’m constantly having my husband read your words. You express the frustrations of disease/disability so well, yet the sparkly joy of motherhood can’t help but seep through. Thank you.

  2. Liz Mackney

    Your words never cease to show just how truly magnificent you are, regardless of the situation. I can only hope one day to be half as eloquent as you are at expressing myself. You are my hero Sarah in more ways than you can ever imagine. Keep fighting the good fight girl!

  3. sharon

    I couldn’t say it better myself. Thank you for saying it. I have lived will ALS for 15 years and just knowing there are other people out there just like me somehow makes me ok.

  4. Yolanda

    Another great post, Sarah. I so enjoy reading them and think of you daily. Big kiss.

    I am very familiar with the catalog you received…zombie girl is a good one! We have been memorizing the names of all the costumes! lol. I’ve only gone through it at least 20 times.

  5. Vanessa

    You are such a gifted writer. “…I’m halfway through a cup of tea and I’m pretty sure there is an attitude adjustment lying at the bottom of it.” – Beautiful. Your charisma drips off of every post. Thank goodness this disease cannot take away what makes you so special.

  6. Erin

    Your beautifully written words and your strength still never cease to amaze me, Sarah. I’m humbled every time I read your newest entry.

    Chasing Fireflies?

  7. Andrea

    Beautiful, Sarah. Thank you. I’m one of your Young Faces of ALS co- ambassadors. Having just gone through an excruciating session with my dad trying to channel my information and needs to the HVAC repair scheduler on the phone (since she couldn’t understand me), I am extra appreciative of your post this morning, especially the part about your friend recognizing how often you “must be annoyed because no one does things for you the way you would do them yourself.” Yes, argh!!! Thank you for imparting some wisdom to helping me just let it go and see the sun of having him here to help me…and the blasted HVAC repair finally getting scheduled ;) I hope you have a good rest of the day!

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