Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong

Today I finished Atul Gawande's latest book, Being Mortal. I love Gawande's work - he has a stunning compassion about him, in the way he writes about medicine. I first heard about the new book via this excerpt, which is worth reading to begin with.

I'm a fast reader, but it took me a while to finish this book. Not because it was bad or difficult! Because it was just exactly right, and I kept setting it down and thinking about my own end-of-life decisions, running scenarios in my head, pondering choices I've had the luxury of not pondering quite so much in the past.

I know what I want to happen after I die. I know that I want my body donated for cadaver dissection - my organs will not be useful for donation, and that's a way I can still help. I read and loved Body of Work: Meditations on Mortality from the Human Anatomy Lab by Christine Montross years ago, and it resonated with me. So: that. My remains will be of service, will teach someone who can use that knowledge to help other people. Then I'll be cremated, and Adam will get my ashes, and he'll give some to anyone who wants some, so people can sprinkle them in their favorite places. In the meantime, my wake should be a party.

Studies have shown, unsurprisingly, that people reevaluate their priorities when they have a finite amount of time left. I went through this a little when I was diagnosed with epilepsy. I'm glad I did, because it's prepared me for now, to be able to handle current stuff with grace instead of panic. Mostly. More grace than I might otherwise have had.

Median life expectancy of 48, is the thing.

My doctor prefaced that with "this is a bad one," meaning my particular mutation. And ended by pointing to the report and saying "This is not your story. These numbers are not your story. You're writing your own story."

I am waiting on further testing. Full-body imaging, to see how much to worry, as I've said, and if I need or should have surgical intervention. And I have a list of things not to do, which unfortunately rules out some of the Year of Being Brave stuff I wanted to try; the sudden drops in aerial silks would be a problem, for instance.

So I adjust. And I sit with myself, and I think.

What is my best possible day? What is my best possible life?

I don't have a conclusion for this yet. But not talking about it was wearing on me. So.
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