Thank you. It’s a lovely, clean little phrase that everyone should use on a daily basis. I often have to coach my daughter to say thank you at the appropriate time: the end of a play date or when food appears before her or when someone says she’s cute (because, to this last one, she is historically more likely to respond with I know.) I work with her on this because I want her to be a successful member of civilized society, a place in which it’s important to acknowledge the efforts of others. And because, in theory, there’s nothing wrong with these two words when strung together and used to express genuine gratitude.
For me, however, thank you has become something more complicated. At this point in my ALS progression, I need help with almost everything. From the start of my day, when my breathing mask is removed, through meals which are always prepared by someone else and often fed to me, to a bedtime routine that involves being dressed in pajamas and placed back under the mask, I am uttering the same phrase over and over until it simply becomes a constant reminder of all the autonomy I’ve lost.
Of course I want to thank everyone who helps me for every single thing that they do. But imagine saying thank you out loud to yourself as you make your way through your day. It goes something like this:
Thank you (for getting out of bed)
Thank you (for putting on a shirt)
Thank you (for putting on pants)
Side note: etc. on the other articles of clothing, but you can avoid one thank you by not wearing underpants. Just saying. Read More>
I’ve recently spoken to a few people with ALS who all said “I’m dying” at some point during our conversation. I understood. They are recently diagnosed, trying to make sense of a sudden, terrible loss of control over their lives, their futures. To say “I’m dying” can be a way to acknowledge what is happening, while still taking back some of the power. “Now I know what’s going to kill me,” one man said.
Or it could just be a way to begin to cope with what we’ve all been told is the inevitable conclusion of having this disease.
But I’ve found it doesn’t work for me. I once tried looking in the mirror and saying “I’m dying” out loud to my reflection. It just made me want to laugh. I don’t feel like I’m dying. Even though any one of us could look into a mirror and say those words, and they would technically be true, when I said them, they sounded false. Read More>
Scarlett had soccer on Sunday afternoon. She and Rob took a trip to a sporting goods store in advance, so she was all decked out in Adidas, including an A.C. Milan jersey. This was fitting, because her soccer class was organized through her preschool, and taught entirely in Italian. It was also fitting because the shirt fit. Haha! #winningatpuns
Sorry about that. I’m not editing it out, though.
With the epic rain we’ve had here in California this month (the phrase “Storm of the Decade” was bandied about last week), the soccer fields were still wet, and extremely messy. I basically ignored this fact, and cruised through the grass in my chair to join the other parents on the sidelines. It was Scarlett’s first class, and I wanted to be right there, even if it did turn me into the abominable mud monster. Read More>