In July, my family acquired a new assistive device called the Hoyer lift. It looks like a torture machine with its dangling chains and numerous metal bars. I half expected it to work the way the machine in The Princess Bride worked, with me as a whimpering Wesley watching the six-fingered man turn the dial up to 11.
I think I’m mixing up my Christopher Guest movies. Also the lift doesn’t work anything like what I described above. Obviously.
As an aside, any time we watched The Princess Bride in my family when I was growing up,
my brother and I would tell our sister that the creepy white-haired dude from the pit of despair was her husband. That’s just the kind of nice kids we were.
The way the lift actually works is that I am rolled onto a mesh net every morning, and my dress is pushed up to my lower back, leaving my bare ass hanging out of a hole in the net so that I am able to use the toilet. It is the height of dignity. But it’s also critical, because lifting me manually takes a toll on my caregivers. I will happily swing around in a perverted hammock if it means taking better care of the people who are taking care of me. Read More>
I remember the day I met you, suddenly standing in the entrance to my office, wearing a suit and seeming somehow gorgeous and accessible at the same time. I remember the first time we talked on the phone, a conversation I cooked up just to hear your voice. How you used to drop the names of authors, how I used to feel so sure. You were like a magnet, like flypaper. Get away? I couldn’t even look away.
And then it was all airplanes and dinners and borrowing your sweaters and learning about wine, and trying to cook things to impress you. I had a chunky blue iMac which I used as a stereo, and I slept on a futon, but at least I had my own place. I was 26, trying to be a grown-up. You were 38, you were definitely a grown-up. You lived in an apartment with two bathrooms, the definition of success in Manhattan. You took me to shows, to tennis tournaments, to a B&B on the Jersey shore, even though you hate B&Bs, too much floral decor, way too much socializing. You met my family and danced with me at a wedding. I wore a black dress and we looked out of the floor-to-ceiling windows and you told me you loved me.
We went to France, and England, where I met your family and ate parsnips. I learned how to cook, something besides Trader Joe’s couscous and salmon in parchment paper. I was content, and I learned that when you were quiet or agitated, a large Starbucks cookie–preferably with M&Ms–would do the trick. (You claimed not to have a sweet tooth, but I still know what happens when ice cream is left in the house.) You tried to buy me shoes, but I was too proud. You bought me everything else instead. We went to Costa Rica, rode bikes through a little town, ate plaintains and drank cold beers on the beach. We played backgammon in a tree house until it was too dark to see. And I was still so sure. Read More>
Coffee. Coffee. CO-ffee, co-FFEE, coffeecoffeecoffeecoffeecoffee, COFFEE! COOOOOOFFFFFFEEEEEE.
That’s a song I wrote today. The tune doesn’t matter.
I haven’t had a cup of coffee since January, but this weekend there was a delicious cold-brewed jar of the stuff in a gift bag from my niece and…nephew-in-law?…waiting for us at the hotel. I tried some of it and it was good. Like, really good.
Now, I’m back home and I have that funny feeling that sometimes accompanies the end of a vacation. I’m happy to be back, but when Rob and Scarlett left this morning, I had a moment of sadness. We had a great trip together, and it turns out I’m just not sick of them yet. So I made coffee. And then I wrote my song. You have to do a kind of jazz hands thing at the end.
This blog is supposed to tell the story of what it’s like to live with ALS, but my inclination is often to gloss over some of the harder times in order to keep things light. Read More>