9 October 2022: Today I learned:
A little more about what it’s like to have Parkinson’s and to plan your own death, from this thoughtful and beautifully written essay and interview at The Cut, “Nature Has Its Way of Ending Life. I’m Changing the Manner and the Time” (29 Sept. 2002) by Rachel Handler. Really, just go read it, but if you’re definitely not going to read it, here’s some of what stood out for me:
Rachel’s feelings (including curiosity) about her partner’s grandfather David’s decision to assist in his own death:
Rachel: “I found [David’s] decision to die on his own terms fascinating, brave, terrifying, devastating, infuriating, and awe-inspiring. Selfishly, I wanted to understand everything about that choice. I’ve always processed things by burrowing deep into them, dissatisfied until I hit the bottom, as dark and weird as it might be down there. … I recorded the conversation, because I knew that [her partner, David’s grandson] Adam would someday want to hear it — he’d told me earlier he was worried that without me (obsessive, exhaustingly curious) by his side in Chicago, he (calm, normal) would forget to ask all of the questions he wanted to ask of David.”
On David’s experience of Parkinson’s:
“I can’t see anymore. My eyes. They’re out of focus. I’m seeing double. You know, it took me three or four times to dial you, because I can’t control my hands anymore. I can’t control my fingers. I can’t write my name. I can’t control a pen. The only way I can communicate now is basically by dictation. And then I can’t correct the errors. … I’m dizzy all the time. If I don’t have a walker, I’ll fall. I can do 20 push-ups right now — this is fascinating — but when I’m down on the ground, I can’t get up by myself. I have to hold the walls, the table, the chairs. Parts of my body work. The parts that are muscular. But nothing that needs any help from the brain. … It’s only in the last three months it’s gotten unbearable. I went to see the doctor to be able to sleep and he had to help me from my walker to a chair. Parkinson’s is a destruction of the pathways that the nerve impulses travel. Yours are a clear highway. Mine are broken up. … Do you know what nervous-leg syndrome is? My whole body does that. I can’t find comfort. … Sometimes I go to sleep on the couch; sometimes it works and sometimes it doesn’t. Right now I have anxiety about falling asleep and if I don’t, I toss and turn.”
On dying and how David feels about it:
“I’m not the least bit scared. I’m scared if I don’t do it — that’s my fear. That’s why I am calling the people I know to say good-bye. I want them not to be scared for me. I’m not happy I’m doing it. It’s contrary to my belief about life, which is so precious, so unique, so wonderful. I don’t want to do this. I don’t want to leave this wonderful world ….”
“Chicago has some of the best hospitals in the world. But they have no way of stopping the disease of an 85-year-old man. It’s nature. The way we live and die; the way trees live and die; the way an animal lives and dies. It’s not a choice. Who the hell wants to die? I don’t. I’ve had so much fun in my life! The places I’ve gone to, the things I’ve done. I love it. But I can’t enjoy it. … It’s acknowledging that trees die, and people die. And the process is painful, but you have some choices about how it’s done. It’s inevitable that everything dies. It’s just when and how.”
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