Monthly Archives: December 2015

Happy Holidays

Hi. By the way, Christmas is in like a week. Every time I think I’m ready for it, I realize there are nine new things that need to happen before next Friday. It’s a funny time of year, definitely one of the happiest for me, because I have such fond memories of Christmas growing up, and because it’s so much fun to experience the holiday through Scarlett’s eyes.

I love sending holiday cards, love when the tree is decorated, love when I can find the perfect gift for someone. But all of that is certainly made more complicated by ALS, and the weakness in my hands that is really getting in the way of this year’s progress.

So far I’ve had lots of help: a lovely and talented friend who volunteered to take our family photos, people to enter addresses into my computer when my hands got tired, Rob and Scarlett who decorated the tree so beautifully, the Internet and its unlimited gift possibilities. Also wine. And straws. Read More>

|Categories: Life, Parenting | Tags: | Permalink

The Way I See It

I’ve been having a hard time getting my contacts in and out. My fingers still have a pretty good amount of dexterity, so that I can get an earbud jammed in for dictation, aim a tortilla chip (or 57 tortilla chips) into my mouth, grip my glass of wine and pull it closer to me to drink through the straw, flip the pages of a book that I’m reading to Scarlett.

But the contacts, so small and thin, are presenting real difficulty these days. Rob opens the case and places it in my lap. I use my left middle finger to fish the lens out, and then raise my left hand with my right hand to get close to my eye. Balancing both hands on my right elbow, I pull my eyelid down with my ring finger and try to wedge the contact in. My hands shake, but sometimes it’s easy and happens quickly. Other times I drop the contact again and again, becoming frustrated and wondering why exactly I’m putting myself through this particular ordeal.

There are three choices, as I see it. The first is that I can continue to struggle until I finally just have to ask someone to do this for me. This does not seem smart, but the lazy and tired part of me feels like sticking with the status quo.

The second option is to wear glasses. I have glasses. I got my first pair when I was in third grade, and a boy named Bobby stopped being my boyfriend pretty shortly after, which I do not think was a coincidence. In third grade, having a boyfriend just meant that he walked me home, and sometimes his older brother prank called my house. But not after the glasses. Read More>

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Why would I be in Parliament’s room?

I just bought a new book, and the sun is shining on the tree with the red berries outside Scarlett’s window. Otto is licking all the stuffed animals that are piled up in a beanbag chair, and it occurs to me that the thing I say the most these days is “Otto, NO!” But suddenly he’s asleep next to my wheel, snoring gently and snuggling with a small stuffed turtle in a non-drooling way that I find acceptable.

It’s a calm day here, a high contrast to last night when the hail hammering down on our back deck woke up Scarlett, and we sat for a few minutes and watched the storm together.

“It’s snowing!” she shrieked, and insisted on opening the door to touch a piece of hail, such a novelty for a kid who’s growing up in San Francisco.

I’m tired this week. My arms seem heavier, and it’s a struggle to correct all the stupid mistakes the dictation is making. I want to scream at it I said Scarlett not Parliament! Why would I be in Parliament’s room? Read More>

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