Time is Change
I stopped writing my newsletter for a while because I was sad and didn’t know what to say.
It’s okay. Time is change and we absorb that change at our own pace–until we finally change with it. I’ve been sad long enough now that I’ve accepted it as part of me. And that’s okay too.
My mom got sick this year. We thought she would get better, but she didn’t. Her mind and memory are as sharp as ever, but her body is shutting down day by day. It’s still not clear what caused it or even what it is. Her most recent diagnosis is Brait-Fahn-Shwartz disease, which is essentially a “worse” variety of ALS and Parkinson’s combined. (I put “worse” in quotes because these illnesses are all too devastating to fit into hierarchies.)
In April I drove from Colorado to my parents’ house in Rhode Island, set up my tent in the yard, and started caring for my mom full time. The logistics of health care in the US right now is a mess that I don’t want to talk about. Every day is an epic tangle of problem solving. But it’s also a lot of quality time with my mom, which I’m grateful for.
Quality time does not always mean happy time. Quality time with my mom includes the times when we laugh together and also the times when we cry together. The times when things go well and the times when they do not, which quite frankly is increasingly often.
My mom has always had the gift of expressiveness. Her feelings rise to the surface. As her body shuts down she’s losing the ability to move and speak, but she still expresses a depth of feeling. Time is change and her body is changing, but she is still very much here. I feel lucky to be here with her.
We’ve been going on lots of adventures. I push her wheelchair through the neighborhood or down the road as far as we can go. Sometimes we have a destination. Other times we don’t know where we’re going until we get there. We’re often accompanied by Diamond, a stuffed animal tiger who makes a great armrest. Of all the adventures I’ve been on, these tiny trips are some of my favorites.
Time is change. These bodies are shifting iterations. We’re recycled from clouds and dinosaurs and flecks of dust–from bits and bobs of everything that ever was and will be. Time is change, and we will always be here. What’s special about it is also what’s heartbreaking.
