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Scheherazade in Blue Jeans
freelance alchemist
Today I finished Atul Gawande's latest book, Being Mortal. I love… 
11th-Nov-2014 03:19 pm
Book Love - by RoseFox
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.
11th-Nov-2014 08:30 pm (UTC)
Love to you. And I am, as always, inspired by your willingness to put this out there, as a map for the rest of us, "markers and guides and comfort and warning."
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11th-Nov-2014 08:50 pm (UTC)
Funny how it always comes down to stories with you, eh?
11th-Nov-2014 08:51 pm (UTC)
Indeed. <3
11th-Nov-2014 09:04 pm (UTC)
I read "Better" but I haven't read "Being Mortal"; I'll have to give that a look, thanks! Dr. Gawande recently spoke in Seattle... I wanted to go, but unfortuntately work ate me. Like yourself, though, I appreciate the compassion and grace that he brings to these discussions.

The weird thing for me about chronic illness is... everyone has a finite amount of time left, but most of us don't think about it that way. (I had to stare it down when I was 15 and I've been living with it ever since. I eventually ended up dealing with it by getting a tea ceremony scroll about death tattooed on my back, and going on with my life.) Denial is powerful and popular.

Best of luck/cheering/pompoms to your living with grace. [hugs]
11th-Nov-2014 11:34 pm (UTC)
Yeah. I had to confront it with the epilepsy diagnosis, so I'm accustomed to "this is probably what will kill me, but also, I could get hit by a bus tomorrow?"

I actually went straight to bargaining on the way home from the doctor, do not pass go, do not collect $200. Denial was never an option. :/ But walking home I was like "Okay, when I go, can it be a seizure instead of an aortic dissection? So it doesn't hurt? So I won't know what's happening?"

But. Y'know. Bus. Tomorrow. Could happen.
11th-Nov-2014 11:39 pm (UTC)
Haha, yeah, "Bus. Tomorrow. Could happen." is there for me too. I think I swung the other way... as I get older, one of the strange things for me is the idea that what if against all odds I *do* live to be 90 or something? I spent so long thinking that I would never make it to retirement, and now that I'm closer, oh, huh, I need to change my thinking just in case. So I was kinda planning around the bus, and feel like that was reasonable given what I knew at the time, but as I have had a series of non-bus days/years since, now feel like I should also give more consideration to the possibility that I might get old. So it loops around... the young often don't plan for aging because they feel immortal, I didn't plan as well as I might have because I felt extremely mortal. Now with an uncertain lease, huh, maybe I should do that. So I feel you.
11th-Nov-2014 11:58 pm (UTC)
as I get older, one of the strange things for me is the idea that what if against all odds I *do* live to be 90 or something? I spent so long thinking that I would never make it to retirement, and now that I'm closer, oh, huh, I need to change my thinking just in case. . . . I didn't plan as well as I might have because I felt extremely mortal.

Yes, this. I was dying and dying and dying, and then all of a sudden I stopped dying, and I threw all my energy into living what others have termed a "juicy" life. I feel like I went supernova in response to spending so much time being sick, and now all of a sudden I'm nearly 41 and my parents are aging and I need to talk with them and plan my wills and retirement and all of that.

But I'm still not afraid of dying.
12th-Nov-2014 12:02 am (UTC)
I was dying and dying and dying, and then all of a sudden I stopped dying, and I threw all my energy into living what others have termed a "juicy" life.

*nods* This, after I got off the hell meds and got the celiac pinned down and everything, and now... oh.
12th-Nov-2014 12:32 am (UTC)
*nod* I think that deep breath, that being well segment really fucks with one's head.

Without that break, it's just more dying, and shit, we got that handled.
12th-Nov-2014 02:49 am (UTC)
I have a girlfriend who is a SCAD survivor - she was getting the dye test when it disected, so the right tubes were already where they needed to be to put stents in.
12th-Nov-2014 03:03 am (UTC)
Best place/time to have one, if you're going to! Glad she's okay...

I am in the awful and unusual situation of Knowing Too Much in a way that is Not Helping. :/ My dad worked with cardiovascular surgeons; I grew up handling the same grafts they might put in me. (They're oddly... silky.) And he told me about all the things that could go wrong in the cardiovascular system, with a special place of honor/horror for aortic dissection... Which, when I was a kid, was not considered a survivable thing. Stents are new, comparatively!

So it is the boogeyman, and it is now #1 on the list of things likely to happen to me, medically.

So I've spent the past week researching and talking myself down and applying logic... Like, that median life expectancy is calculated on data that probably still assumes ADs will be fatal. But ER and surgical techniques advance every year. Every year this potentially gets more survivable.

(Has your girlfriend written about her AD at all? Anything I could read?)
11th-Nov-2014 09:21 pm (UTC)
It's fascinating how diagnoses like these can affect how you see things. I know from my experience, I did not handle things gracefully at first, but I am now more peaceful (working in hospice care didn't help much at first, but now I have a deeper understanding with my patients who have scary prognoses).

I'm lucky in that my disease may never affect me further, but unlucky in that it could come back as stealthily as it did at first, and cause havoc.

I guess none of us ever know how much time we have left. But when things come to sneak that time away and we are aware of them, we can make the days count more mindfully than if we all assumed we would die at 80.
11th-Nov-2014 09:45 pm (UTC)
Meep. The geek in me is really curious about such things, but obviously only inasmuch as you're willing to share. I am hoping for the best possible ending for your story.

As a somewhat borderline hypochondriac, I usually feel like more data is better. More data means more knowledge for evaluating the situation at hand, and forming a plan. Except when it becomes temporarily paralyzing, that is, in those first deer-in-headlights days. Still, onward and upward, for as long as you can. *hug*
11th-Nov-2014 11:36 pm (UTC)
Yep. The imaging will help my state of mind, I think, even if results are not good.
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11th-Nov-2014 11:47 pm (UTC)
For me, it was finding out I'd had a stroke at 33. And the first few years were the absolute worst - and I still get freaked out now and then here at 45. It doesn't help that they recently identified two markers for blood clotting via bloodwork.

So, much empathy from over here on unpleasant discoveries in one's genetics. It sucks.
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11th-Nov-2014 11:52 pm (UTC)
<3 Book very good. Mostly about geriatrics/gerontology, but lots of thoughtful and important questions about how to best handle end-of-life stuff.
12th-Nov-2014 01:30 am (UTC)
I went through this when I was diagnosed with diabetes. And then I went through it again, but way more strongly, when my mother died.

Thanks for posting.
12th-Nov-2014 02:22 am (UTC)
Read the whole thing. Keep being you.
12th-Nov-2014 03:06 am (UTC)
That's the plan. With various modifications. <3
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12th-Nov-2014 02:51 am (UTC)
Well, shit.

If you can't do silks, trapeze is an option. Many who teach one, teach the other, as the space considerations and set up are very similar.
12th-Nov-2014 03:05 am (UTC)
Nope; too much risk of a fall. I'm cautioned to avoid physical trauma as well as sudden state changes like sprinting, weight lifting, etc.

I'm considering partner acro. Going to get more info on that from tomorrow night's date.
12th-Nov-2014 02:52 am (UTC)
12th-Nov-2014 04:12 am (UTC)
I know exactly what you mean.
12th-Nov-2014 05:42 am (UTC)
Hugs if you want them, and best of luck.
12th-Nov-2014 10:02 am (UTC)
All this sounds super fucking scary and here's hoping for the most favorable possible accurate results from the imaging. (And may the ordeal be easy.)
12th-Nov-2014 10:25 am (UTC)
*hugs* <3
12th-Nov-2014 12:26 pm (UTC)

That's not good.
12th-Nov-2014 08:43 pm (UTC)
12th-Nov-2014 11:29 pm (UTC)
13th-Nov-2014 12:34 pm (UTC)
*listening and wishing you as much comfort and joy as you can obtain in the face of all this*
13th-Nov-2014 02:38 pm (UTC)
Hold on. I'm figuring out how to transport us all to the alternate reality where all of this bad shit doesn't happen.
13th-Nov-2014 07:27 pm (UTC)
O.O You don't ever do anything by halves, do you? *hugs* I just requested Being Mortal from the library, and I applaud you for being able to confront this with any amount of grace, however large or small compared to the panic. As always, in the (exceedingly unlikely) event that there's anything I can do for you, please let me know and I'll do what I can.
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