While waiting for my car to be serviced yesterday morning, I watched a few minutes of a CBS News feature on how patients in the early stages of ALS are preparing (to the extent that’s possible) for the later stages of the disease.
“Before her speech becomes severely impaired, Hubner turned to speech pathologist John Costello at Boston Children’s Hospital. He gives patients a voice recorder and tells them to think of phrases that reflect who they are.”
As I watched the woman making notes and recording simple statements I found myself thinking about all the things I say during the course of a day (“Hey, Lucy. You want to go outside?” “Hattie! Come sit to the couch and get some loving’” “Have I told you today how much I love you?”) and what it would be like if I could no longer say those things.
In the CBS piece they entered the patient’s recordings into a computer so she could play them back with a keystroke. As I watched I wondered what would I want to say if I could no longer speak the words. Whew.
A list of things I take for granted would be too long to list here, but the simple act of speaking would be high on the list. How many spoken thoughts have I wasted? What would I say if today was my last day to speak?
The woman in the news story was writing down things she wanted to record. Not a lot of negative or mean things on that list, if I had to guess. Probably not a lot of political comments or complaints about waiting in line.
In an ancient blog post I imagined getting a printed transcript of every word I uttered in during the course of the day. With a red pencil I crossed out everything that didn’t need to be said. What would I be left with? If I could say only 20 things tomorrow, what would I choose?
