Category Archives: Life

Progressions

“Live or Die, but don’t poison everything…” —Anne Sexton, Live

A friend wrote to me last week. He has ALS and is experiencing a noticeable progression in his symptoms. It happens. ALS  might technically be progressing all the time, but there are these moments, red-letter days or weeks, when you realize that you’re getting worse, that certain things are much harder to do.

Lately, I’ve also been dealing with a progression that feels big. I can’t get in and out of my chair very easily by myself anymore. So when it’s just the two of us, Scarlett and I can’t snuggle up on the couch after school to read books or watch TV. I can put her to bed, but only if Rob is home so that he can come lift me from my spot beside her and maneuver me back into the chair. I can’t sleep in late or take a nap, because I would find myself stuck when everyone else was gone.

This latest development comes alongside more weakness in my arms and hands, often leaving me unable to even prepare a decent snack during the day, never mind an actual meal. I woke up yesterday and couldn’t get out of bed, Read More>

|Categories: Life, Meditation, Progression, Venting | Tags: , , | Permalink

Life on Wheels

It’s Wednesday morning, and there’s a man in my kitchen. I’m usually home alone until about noon, but today is different, because Sal has come to patch up something like 60 divots and gouges throughout our recently renovated house. We were not attacked by starving woodland animals, nor was this the result of drunk Christmas tree decorating or anything to do with the resident 4-year-old. Let me explain.

In 2013, it was getting really hard for me to climb stairs. We lived on the second floor of an old Victorian in the Haight Ashbury neighborhood of San Francisco. One flight up to our door, another flight up to our home. As my legs grew weaker, it became clear that we needed to move. But there we faced a different kind of challenge: finding an accessible place to live in San Francisco, city of hills, multi-story homes and steep staircases. We were still searching when I lost my stair climbing abilities entirely. Rob carried me up and down two flights, every day. Over and over.

Finally we found a home that fit our needs. Read More>

|Categories: Life, Progression, Vanity | Tags: , , , , | Permalink

Speed4Sarah Fall Fundraiser

My baby brother Paul is six years younger than me. This is currently confusing, because although I still see him as a chubby adorable child, he happens to be 30 years old. This means that he is—and has been for some time—an adult (still adorable.) And that means that he can do things like support himself, be in a serious relationship, and band together with his good friends to set up a fundraiser on Speed4Sarah’s behalf, which he did the Friday night after Thanksgiving.

The idea, I believe, came from the girls. I’ve known the sweet Anna Biggins and her family for years, since back when she was a Schroeder and before she had two kids, little blond babies with the names of fairies. I asked her brother Eric to King of Hearts, our high school’s version of a Sadie Hawkins dance. Our moms are friends who used to teach together, and Anna’s mom has read every novel worth reading. She writes her name inside them before passing them on liberally. I like this fact. I wonder if the books always make it back home. I wonder if I’ve accidentally stolen any of them.

Anna is friends with Elyse Caringella, a pretty pixie who has written me emails that make me laugh, and who felt motivated to organize an entire event to raise money for ALS, despite never having met me. Read More>

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