Stories

Today when I woke up, my hands felt different. Weaker. It reminded me of when my feet started to get weak, the effort to use them exhausting and involving muscles that you would think have nothing to do with feet. It was like that today, with my hands, as I moved them clumsily to drive my wheelchair. I could feel the muscles in my neck working to help. I tried to observe it from a distance, an impartial witness to an odd bit of impotence. I don’t know if the losses get easier or harder to deal with, and the answer is probably a little bit of both.

Sometimes I tell myself I’m just tired or cold, two things that affect my strength to shocking degrees. And I am tired. We had a nice time in Healdsburg, a little town nestled into Sonoma County, a wine wonderland. But both Rob and I forgot about packing my foot braces, and so the nights were uncomfortable, requiring near hourly adjustments. It was miserable. The days were rainy, so that Scarlett couldn’t swim in the pool, but we had fun taking Otto out into the vineyards to run around and act – – finally – – like the hunting dog he truly is. Although he didn’t successfully hunt anything (phew!), he was driven nearly crazy by the birds and the new smells, and it seemed like he was trying to run in every direction at once.

We knew it would rain and had debated not going, but both Rob and I felt like it would be good to get away for a while. Despite the long nights, we were able to spend two days together just wandering, spending hours in the bookstore. Healdsburg has two independent bookstores on the town square, something I find pretty remarkable. There are entire states in this country that only have a handful of independent bookstores, and here is a town that sustains two within book-throwing distance.

Independent bookstores, to me, are like churches. The book covers are stained glass windows, colorful storytellers. The smell is paper, or candles, not quite like old Bibles tucked into wooden pews, but its own aged scent that immediately calms me. On this trip, we spent most of our time at Copperfield’s Books, where two cats roam the store. Sweet Pea, who we didn’t see much of, and Jack, a fat 14-year-old whose protruding sides completely obscured his little head as he waddled along, tail swishing. Scarlett sat with him amid a small pile of books, and I could see that she shares my love for these different houses of worship. I could mainly see this because she was finally using her indoor voice.

I wheeled around the tables: new paperback nonfiction, staff picks, cookbooks with their inclusive promises. I couldn’t pick them up, couldn’t flip through them, so they felt more than ever like those tightly crafted mosaic windows, just out of reach. It didn’t upset me; it’s been a long time since I could pick a book off a shelf. I went to the children’s section with Scarlett, a small corner where illustrations leapt off covers, and where she could pick up books and climb into my lap so we could read them together.

Each time we visited, we left with more books. The Princess in Black books 1 and 3 for Scarlett. [“Why not 2?” I asked, after we bought them. “I got confused,” she said, without concern.] A novel, a memoir, and a cookbook for Rob. Nothing for me, although I was momentarily distracted by a Valentine’s display at the front of the store, where books were wrapped in plain brown paper, a short but secretive description written in sharpie, and signage encouraging customers to go on a “blind date with a book.” Amazing, I thought, wishing I could pick one and unwrap it to discover what lay inside.

This morning, although my hands are weak, my mind is back in that bookstore and I feel ok, even peaceful. I am always surrounded by stories.

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10 thoughts on “Stories

  1. Rami Randhawa

    Your stories surround us Sarah. Your honest, sad, funny, courageous, happy, stories of your life with ALS, your superhuman ability to cut to the essence of what touches and moves you…. they stay with me always and I send you good thoughts and prayers.

  2. Dianne McGee

    I want to say something that makes you nod and weep . . . smile. I want to hold you and read to you and tell you how much you have touched my life forever. I want you to know how much I will miss you if you blow this pop cycle stand before I do. I want and want and need. I need you to know how much you’re loved. Dianne

  3. Gaurav Gollerkeri

    Sarah, real bookstores are the closest I’ve ever come to a religious experience (that and Centre Court at Wimbledon)…thanks for transporting me to that wonderful world again. And thanks too for sharing your words, ideas, grace and courage with your readers.

  4. Pierre Lescure

    I was also diagnosed with ALS in 2012. I moved from Santa Rosa in 2008 and now live in Colorado. I know of several cases of ALS in Santa Rosa and am wondering if you live in Sonoma County?

  5. Deidre Reed

    Another beautiful essay. Being surrounded by stories is a lovely place to be. Especially the way you capture them!

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