It’s Labor Day today, and I guess technically I should not be writing, because the blog, while a labor of love, still definitely requires work. These days it’s easier to think of the words than to get them on the page, so I wait for a burst of energy, type what I can and then switch to dictation, even though the sentences never quite come out right. Then there’s more typing to correct all the weirdness. It’s laborious for sure.
When I was gainfully employed in the publishing industry, I knocked out emails like it was the easiest thing in the world. Day and night, using those typing skills I’d first learned in 6th grade computer lab. Now I’m so behind in basic communication that it’s embarrassing. I should have an auto reply on my gmail and text platforms: “Sorry, I am unable to reply to your message in a timely fashion because I used all my energy to put my contact lenses in. And by the way, it didn’t even work; my husband ended up putting them in for me. I’ll try to get back to you at some point this month.” And then some emoticons: a kissy face, a surprised cat, a thumbtack, the Golden Gate Bridge. Just because. Read More>
Scarlett’s school fundraiser was on Saturday night. It was a beautiful event, and a smashing success, thanks to the efforts of so many people. Two days before the party, I came down with a little cold, and by the time Rob and I arrived at the venue, I had almost no voice. So there I was, in a loud room of 400 people, without a great way to communicate. And it made me think about ALS. I was in a wheelchair, my hands weak enough that Rob had to cut my food for me at our table, and to top it off, I couldn’t talk. This is the reality for many people with ALS, all day, every day.
I thought about my friends who say that ALS is destroying their intimacy with their spouses, their ability to parent their children, their social lives. We can—and we do—make the best of it. But at its core, ALS is a disease that seeks to destroy our relationships with other people. It’s a cruel and isolating illness. That night at the party, I was ok. I knew my voice was coming back, and I could still summon up a whisper to get short thoughts across. As I said to a friend that night, I love talking (“Oh really?” she joked. “I hadn’t noticed!”), but taking a night off from it was illuminating.
It’s highly likely that I talk too much. And it was interesting to just listen, to hear what people say to a person who is pretty much just smiling and nodding. But it was also frustrating. I have comments. I have stories. I have jokes!! That night, I relied on a whisper that was still sometimes too low to be heard, which is why Rob almost lost a bunch of money during the live auction portion of the evening. Read More>