Further Embuggerance

[cosmolinguist]

This morning there were hugs in this house because Andrew just learned that Terry Pratchett has the papers for Dignitas, and only hasn't signed them because "I have a bloody book to finish."

Andrew didn't find out about this -- that Terry Pratchett dying is not an abstract notion now, but down to paperwork -- until this morning. He looked so stricken when he told me (not knowing I knew) that I had to give him a hug. He asked for another one after that.

I already knew because yesterday a Facebook friend linked to this article about last night's documentary.

The comments on my friend's post were mostly positive and supportive of Sir Terry's position on this -- "admire his courage" "hope his family can be with him" "right to choose the time, place and manner of one's death" -- but one person said, "I wish someone as high-profile as Terry could show people that there are other ways."

Which really bothered me, but as it was someone I didn' t know, in someone else's comment thread, I didn't want to start an argument. Still I've been thinking about it since yesterday, because it's still bothering me.

Is there anybody who doesn't know that the alternative to what Sir Terry is doing is to linger, to deteriorate slowly? To eventually be unaware that this has happened, to no longer be oneself, but to still demand a lot of mental and physical energy from the people around you, responsble for your care. And then die anyway. What are these "other" ways ths person thinks he should "show people"?

In that comment thread someone else did say that it's easier to countenance euthanasia when it's someone you don't know, but I had to disagree: it's because of the people I do know who've had dementia and physical illnesses that just went on and on that I first saw the point of choosing to opt out of that. It's draining and frustrating and heartbreaking to deal with this person who is so clearly no longer the person you knew and loved.

And that some people will find Sir Terry's decision wrong or just not something they want to think about is no reason for him to consign himself to the excruciating deterioration, to lose his personality, to frustrate and worry and maybe even scare his family and people around him, before dying anyway. Just because he's a public figure doesn't mean he has to only do things that are acceptable to the lowest common denomninator of the society he lives in.

His books and some of the people I've met because of them or bonded with over shared love of them have made one of the people-I-haven't-met who have had the greatest impact on my life. The way his documentary was being talked about on the radio today, and the way it started conversations about assisted suicide (which I really really hate as a term, but I'm not aware of any better ones), left my half-awake self with the fleeting notion that it was Terry Pratchett who'd died. Thankfully I soon remembered the Observer article I read yesterday and was relieved, but that brief moment of thinking I lived in a world without Terry Pratchett really shook me, and it is bound to do so still when I no longer have the comfort of realizing I was mistaken in thinking so.

It would be difficult for me to overstate the difference Terry Pratchett has made to my life, and all to the good; still I realize that sometimes being alive isn't the same thing as being you, so do not want anyone to stand in his way.

Comments

[softfruit.livejournal.com]

Actually, the condition my mum was in towards the end, and the condition my sister was in towards the end, say to me that it's not easier to support assisted dying when it's someone who is not close to you. Someone close to you, you know even better how much of themselves is gone.

[cosmolinguist]

Absolutely, and I tried to say exactly that to that person.

[braisedbywolves.livejournal.com]

It is worth pointing out that, as the article mentions, Pratchett's decision is not yet made - or rather that his decision is to progress to the point where the last decision is yet to be made.

It does however seems like there won't be another book from him, which is a great shame - I am a big fan of his books.

[innerbrat]

Yeah. I'm as ever disturbed by the morbid tone surrouding a man who has the forsight to prepare for stuff, and now has stuff prepared for that last point.

He "has a bloody book to finish" - Pterry is still churning out a book a year. He's always going to have a bloody book to finish

[cosmolinguist]

He's always going to have a bloody book to finish

This had occurred to me too :)

[uglybuffy.livejournal.com]

Poor Terry Pratchett. That is so sad. If anyone wants to see a high profile person showing that there is another way, why not peep through the window at Margaret Thatcher?

[cosmolinguist]

Very good point.

[rocketeddy.livejournal.com]

Have you seen the documentary? I think it's the most powerful thing I've ever seen.

[cosmolinguist]

I haven't seen it, no. I'm not sure I want to, being already sympathetic to his position and fearing my overexciteable empathy circuits would overload.

[bloodbeauty.livejournal.com]

I'm going to miss him a lot when he is gone, he's one of my favourite authors, and one who has always been there with something new. i've grown up with him and knowing that this upcoming book may well be the last is very sad. but i completely respect and agree with his right to end his life with the dignity and poise he has lived it.

[quuf.livejournal.com]

this person who is so clearly no longer the person you knew and loved

I respectfully disagree, H. The loved one is still in there somewhere, even if buried under layers of incoherence. We owe it to them to believe this, hard as it is.


Bill
(Son to a 90 year-old and an 80 year-old)

[cosmolinguist]

I respect your position. Let me be clear: I would never support forcing this on anyone, for the good for their carers/loved ones or anything else. If a person wasn't willing to choose this when they were able to, there is absolutely no justification for it under any circumstances.

I do not mean that anyone gets to decide for other people that they have become too burdensome. It's just that having seen family members linger and fade would give me reason to consider choosing, for myself, not to go on as they did.

And there are plenty of people in their 80s and 90s who are happily themselves without having to peel away any layers at all :) That's fantastic, long may it continue. But even if that's not the case for any specific person, the default is to keep people alive, and that's precisely as it should be.

[quuf.livejournal.com]

Beautifully and cogently put - I expected no less. :)

[cosmolinguist]

Phew. Glad I was up to your challenge :)

[tartful-dodger.livejournal.com]

For days now I've been really striken by this post, and the idea that the difficulty that you might pose for loved ones should play a factor in whether or not its okay for someone to die.

I'm all in favour of people choosing at what point their life has reached a point where its essentially joyless, but at the end of the day if your loved ones find it that hard to be around you then they don't have to be. This is why we have social care, so that people are not reliant on their families to be fed, washed, clothed etc (even if it does fail to provide adequately in some cases).

This just really upset me, seeing people talked about as burdens because of their mental capacities.

[taimatsu]

I didn't read this post as suggesting that. I thought H's focus was very much on a person's own decision to determine when they would die, and about deciding how you wanted to be at the end of your life. And also not about suggesting that anyone other than the person themself should take any decision about the end of their life.

It's true that it is difficult and sad and exhausting to care for someone who is dying and not able to respond to you any more (I have done it) but acknowledging that is not the same as saying the person is a 'burden' in the sense that it's not worth caring for them, or they should have died earlier on. It's just saying that you love them, and it's hard.

[cosmolinguist]

No one's talked about people as a burden here, much less said they should die for it. Indeed the only time the word burden has appeared before your comment is when I said "I do not mean that anyone gets to decide for other people that they have become too burdensome," specifically rejecting the idea that this is okay as a factor in whether or not someone lives or dies.

Indeed that whole comment was directly addressing this kind of concern, and did so to the satisfaction of someone who implied a strong emotional involvement in the subject. Indeed I am rather emotionally attached to it myself, being adopted by parents who were told by a lot of people, a lot of people who now know and like me, that they should get rid of me because a blind baby was too hard. I am very glad my parents disagreed. From a young age I have shared their conviction, and I don't think anything I have said has belied it here.

I chose very carefully and conscientiously the words I used here, doing my best to express a complicated and emotive subject as well as I could; now scrutinizing my words and even other people's comments, I don't see anything that should lead you to believe that we are talking about people as burdens here.

We are not living in the world of Soylent Green; nobody thinks euthanasia will or should replace social care.

I don't think we should pretend that dealing with a person in a state of advanced mental deterioration is not difficult. But that's not the same as thinking they are a burden or wishing they had decided to die earlier. However, as I said, and all I said, is that such considerations might some day conceivably affect my decision, should I have the need and opportunity to make one, on whether I want to live that kind of life. And whether that is a factor in my hypothetical decision is not something I need anyone else to be okay with.

[emma-b79.livejournal.com]

Its actually an amazingly good and touching documentary (which I need to finish) and still have on my virgin+ box. Considering what is ahead of him and some of the things that came up in the documentary I am not surprized he has come to that decision. A decision I will point out he doesn't have to go through with.