51 hours left to live
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It's not because of death with dignity -- I'm a big fan. It's not because of not wanting to face my own mortality -- I know death awaits us all, and for me or some others it may come very soon indeed. Who knows when we will die?
But something about it just didn't ring true as something I would want to make happen over and over again. I think perhaps it is the forum and mechanics involved here. Would I want a site where people posted about their deaths and then others voted that post up or down? Then each comment was accordingly ranked? I don't think so.
Your life isn't the same as a news article or a blog entry, and it shouldn't be treated as such. Perhaps there is a site for broadcasting your last words to the world at large, and it sounds like something I would want to visit and participate in, but reddit ain't it.
I think there's an uncomfortable novelty in having access to such personal period in this person's life. Sometimes, technology can create distance and remove immediacy and impact - but I don't think that's true in this case. There's an obvious undeniable gravity at work - it's important.
This kind of story usually only touches us if we're unlucky enough to have friends or family who are experiencing the same.
But I find it so difficult to comprehend. Life is fleeting. I know every stage is finite - but it's easy to forget that everything really is temporary.
This brings that home for me.
I have thought that when faced with my last days, I would like to write a blog article (or, knowing me, a freaking series) kind of wrapping things up. I consider HN sort of my home audience, so I would post these articles over here.
But this has got me rethinking that idea. The problem is that then people's lives and final words start competing against each other. What if nobody upvoted my life? Would pg's final words be more important than say, tptacek's? It's just too weird.
So yes, every now and then it is humbling and good to be reminded of the extremely temporary nature of our existence. As an existentialist, I try to do so on a daily basis.
But in a community of 100K, sadly, somebody is going to be dying on a fairly regular basis. I cannot imagine that having their words competing with the latest iPad for the community's attention. It is not something I want to participate in.
But I might be wrong. Like I said, it got me thinking. I am still unsure how I feel about it. My heart goes out to the author of the post over on reddit.
This is still relatively new to human society. Twitter provides a way to shout out sentences to the world in general - and to listen out for voices that we care about. Forums allow us to converse with multiple people and actually form relationships - relationships which might eventually cross over into meatspace.
The ability to converse in this way - in a 'third space', provides a lot of opportunities to encounter things that we're not used to encountering. This is an example of that.
What will happen in the future? Well - if there's a sharp increase in communication with people who are choosing to end their lives due to suffering, my guess is we'll all learn more about what those people are feeling and thinking. We'll all be a lot more educated and a lot more understanding as a result. It will be a positive thing.
I suppose that there's a chance that we'll become desensitized - but I think, when the stakes are this high and the subject is so earth-shatteringly significant to every one of us, it probably won't ever become so.
I really think that our society is worse off by treating death as a taboo. I don't particularly enjoy thinking about it, or talking about it - but I think it's worthwhile.
It's not a matter of ignoring or running away from death, it's a matter of treating every piece of conversation that comes from my keyboard as all being the same.
There's been no time in human history where we had such a "flat" model of interactivity. Even in small hunter-gatherer societies it's common for information to be withheld from some, shared with only a select few, etc. Man is a social animal, and these types of channel-selection and social posturing are a critical part of his healthy existence.
We programmers have created the internet, and to us all of that social posturing stuff is just nonsense. Everything is just a bit on a disk somewhere.
While that's true in a physical sense, it's tragically false in practice. The way we discuss philosophy, death, religion, politics, science, history, and the rest of it varies according to the crowd and the mood. It's not all just bits.
But your point is spot on: we're still trying to figure out how to have conversations online.
I think we are making a LOT of mistakes that are going to come back and bite us one day, one of which is thinking that democratic metaphors are applicable in all situations, but that day may be many decades off, after I'm dead myself, so aside from complaining about it I'm really not worried about it too much :)
I hope your final days or hours are good enough that some of the concerns you have expressed will still be relevant for you. But I really don't see how any of them apply in this particular instance.
It's not whether the person in question experiences one thing or another from their posting. The question is whether or not the tools that the community uses to rank tech gossip should be the same tools as it uses to process final words.
I find that a form of monetization of human life, and I'm not in favor of heading down that road. It leads to bad places. Not for the posters, but for the rest of the community.
I think your mistake, if you made one, was assuming that my concern was for the feelings of those posting. It is not. It is for the continuing devaluing of human life by technology. The commnenter said that this article reached out and touched him, and I think that's great. If we had 50 on here a week, it would not. And I think that is unacceptable.
I am sure you are right about that. But what I have found personally is that a) I didn't learn how to live until I spent a lot of time at death's door and b) most people who speak with me are invigorated by exposure to ..whatever I got out of that experience. They get to get some perspective on their own lives and problems and sometimes decided that the concerns they are obsessing over are just stupid and not that important. I have terrible financial problems, which are a real issue. I would likely have them had I pursued conventional treatments as well only I wouldn't be getting well. But my creditors aren't going to come cut out my lungs or the lungs of my 23 year old son (who has the same diagnosis I have), which is basically what I would be facing otherwise (lung transplants are really common with my condition). So I just can't find it in me to be as upset about my financial situation as other people sometimes seem to think I should be.
Technology went a long way towards saving my life, both literally and figuratively. It gave me a social life when I as unable to leave my house. It gave me access to research when I was too sick to go to a library. It gave me a means to occupy my time when having nothing to do but go crazy from constant unrelieved pain was a fate worse than death.
I don't really see the issue with the post on Reddit. I would agree with you if someone posted here that they have a new startup idea and plan to make a site specifically to have exactly this kind of post as its sole purpose. I thought the community was very supportive and kind and humane in its treatment of the situation, suprisingly so given how much trash gets talked about Reddit on HN.
But then I am some feverish twit just hanging out here tonight because I can't sleep and can't focus to do anything more than shoot the breeze with strangers...etc...what the hell do I know?
Edit: And it's really not intended as argument. It's intended as conversation. Since I spent some time at death's door and spent a lot of time online during that time, I have this silly idea that my thoughts on this topic might be of interest to your soul-searching...or whatever.
The other part was that this was a choice. I understand the rationalization, and I cannot say I would not choose the same in the same situation. It just does not sit well with me. At the moment, I have too much fight in me.
The thing that I think you find unsettling roots from the fact you feel you need to prevent discussion of your mortality from being "normal". This man needs his mortality to be a "normal" thing. It is happening to him, and soon, so putting it into a context of "normal" life helps with that.
On life:
Nothing we have is worth hurting anyone else for. It's all fleeting, people. Stop seeing race, color, sex, religion, etc... They're all just people, and if you try to love them you won't lose anything.
On suicide (of an otherwise healthy person):
It's not living that's failed him, it's life. We can always change our life as long as were living.
On regret:
Yes, one. I bought my high school sweetheart an engagement ring and never gave it to her. Life happened, meaning I was dumb. I went in the military after a dumb fight and... yeah just one.
On fear:
What long term risk is there in saying hello? I can't find any. Worst case is you get some possessive asshole that thinks your hitting on his sister, and you get a black eye. Total pain and shame lasts maybe a month. Meeting the right girl though lasts forever. So you tell me, would you trade a month of shame for a life of happiness?
I feel a bit guilty for thinking like this while reading the thread. Maybe a raw vision of mortality makes us emotional, less cynical, and we're more receptive as a result. Maybe we look to last words as an encapsulation of a person's life philosophy, as if they became wiser in the knowledge of imminent death. Or maybe an overly detached analysis is just another reaction to a reminder that we're going to die.
It's ancient wisdom that dying people speak the truth.
"Living" people with "stuff to say" are more often than not full of bullshit.
I wish Lucidending well. My impetus has nothing to do with "rebutting" the idea of right to die. I got well in part because I stopped trying to live. At one time, my whole goal was to just hurt less. Suicide would have been gladly welcomed, so I understand why one would do that. I just think it's sad that this is what conventional medicine has to offer.
Of course, I completely suck at starting conversations and can't think of a Reddit handle to use.:-/ So this may never fly.
Edit: Yep, missed that part. I was wrong there.
Maybe you missed this part of my post:
...I got well in part because I stopped trying to live. At one time, my whole goal was to just hurt less. Suicide would have been gladly welcomed, so I understand why one would do that.
I have cystic fibrosis. I've gotten off of 8 or so prescription drugs. The drug side effects were crippling. I was miserable and unemployable. My sister has been battling cancer for 11 years or more. I belong to email lists for people with CF. I've heard lots of stories like this. What conventional medicine does is pretty gruesome. I am getting well. I only wish I could more effectively share that information. BTDT, got the t-shirt and it saddens me that so many people are doomed to the same fate as Lucidending.
Edit: I would be seriously interested in knowing why this is being downvoted. There is something wrong with finding a better way and wishing to share it and thinking it sucks that other people are suffering so horribly?
To be clear, I suspect no HN readers will claim medicine has all the answers - far from it. I suspect the reaction is more to the false dichotomy between "traditional medicine" and "some other kind of medicine" (with the implied hints of conspiracy or willful incompetence), rather than "current medical knowledge" and "future medical knowledge".
I took a look at your site, and it's obvious you've been through a lot, and thought about it more than most people - so please take my comment only in the context it's meant: as an attempt at an explanation why your one specific post was downvoted (and not an endorsement of the downvote).
Have an upvote.
What are you talking about? Chances are you would've died a century ago because of the lack of effective treatments for CF. There are people who have dedicated their entire lives to researching the genetic mechanisms that lead to CF, not to mention the efforts being led to better understand those behind cancer.
I think you need to give conventional medicine some credit.
Anyway, probably not a good idea to do an AMAA if this is the reception my comments get here, where I am already a member and speak pretty openly about having gotten myself well.
Peace.
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It is not anything I have come up with some "position" on. I know I wanted to die ten years ago and saw that as the only hope of an end to my suffering. I know that I continue to routinely feel like "god must hate me" and feel like death is the only way out -- that getting well, paying my bills and all that is just too much for one person to do without real support. It feels really, really unfair. I could get rewarded and supported for not getting well -- I could get free medical care, go on disability as I get too sick to work, etc. But getting well? Up yours, bitch. You're crazy and made this entire thing up anyway. Forget any kind of financial support for the costs involved. There isn't even sympathy in most circles.
So my life is still hard. And has always been hard. Living without a diagnosis and being routinely accused of being a hypochondriac was also hard. And I did attempt suicide at age 17.
But what I believe is this: They now have such an ability to keep you technically "alive" that our definitions have to change and right to die legislation and discussions like this one are inevitably going to be part of the struggle to come up with some meaningful, humane means to decide it is okay for someone to just stop pursuing heroic efforts and, if nothing else, let nature take its course. My "position", if I have one at all in this debate, is to offer information on a more humane alternative that offers better quality of life rather than merely extending life but at the cost of so much suffering that many people would rather die instead. The only possible alternative that makes sense to me is to make it a priority to make medical care more humane so that staying alive doesn't so completely destroy your quality of life as to make one desperately wish for death.
A few years ago, a relative was in the hospital in a critical care unit. A very old, very ill person (like in their 80's) on the same ward coded over and over. They spent two weeks resuscitating this person and performing gruesome invasive procedures -- because the family wasn't ready to let go. This person was not ever going to get better and go home again. Everyone knew that. The family knew that. The staff knew that. They did not prolong her life. They only prolonged her death. And her suffering. We have no choice but to wrestle with such questions given where medical technology has brought us. Otherwise we are in danger of coming to a point where everyone gets put on an iron lung or some such and we just don't bury you.
Perhaps his or her situation is not as parallel to yours as you think. It's hard to say based on the little data there is, but perhaps all that is left for him or her is palliative care.
I wouldn't wish what I am going through on my worst enemy. But it beats the hell out of conventional treatments for my condition. It both involves less suffering and actually is getting me well. It is hands down a better experience and a better outcome.
What exactly is your form of treatment anyway? Just letting the body do its thing?
Because it was invented by some former homemaker with credentials like "I gave up my national merit scholarship and dropped out of college to go do the wife and mom thing for two decades. Now I'm a poverty stricken divorcee who has no clue how I am going to pay my electric bill this month before they cut my power off." Not exactly the kind of credentials that get you written up in JAMA.
What exactly is your form of treatment anyway?
There is a little info here about what I've done (though please note the site is woefully out of date as the last 10 months have been extremely intense):
Just letting the body do its thing?
Are you kidding? That leads to a gruesome death of the sort that motivates people to put up with the horrors of conventional medicine. Getting well has involved a great deal of research and work and other resources, mostly to redress 36 years of not getting appropriate treatment because I was diagnosed late in life.
The most succinct explanation I have come up with is on this page:
http://healthgazelle.com/rootsoftheproblem.shtml
Oh and have an upvote for asking good questions.
That's a fascinating look at peoples' reactions to this. A reminder of mortality split right down the middle.
I'm glad they have that choice, and the ability to share their story. In perspective there are many people in this world who die "unknown" - PBS airs the pictures weekly of teenage American soldiers who died in Iraq or Afghanistan - then there are those who were killed while trying to non-violently protest their unjust government (China, Iran, etc.) - then there are those who are too young to speak yet who are dying of starvation in certain parts of the world today.
Not trying to judge or weigh who is more worthy of a voice, I can only say it's good this one person got to be heard.
I guess they forgot to explain that while it's not bots that do it, there's a feature in reddit code itself makes it look to many people that such bots exist: http://www.reddit.com/r/WTF/comments/eaqnf/pardon_me_but_500...
I've linked that so many times in threads about tragic events or sensitive questions where people even a single downvote personally (ie. it can happen with very small scores but high activity)
For example, years ago when reddit was new I used to post actual articles and consistently make the front page with them. But one day all my submissions suddenly started getting downvoted, many almost immediately after posting as if someone or something was constantly monitoring the new submissions page, killing any chances of developing the critical mass they used to get or of making it to the front page.
The nature of my postings hadn't changed at all, but the nature of reddit's voting behavior had, and not gradually but unnaturally abruptly, hence the suspicion. Whether it was a human voting ring like was exposed at Digg a while back, or actual bots, or just some no-life basement dwellers with nothing better to do than game reddit all day, I have no idea. I eventually abandoned that account, and now only post comments and the occasional question thread to smaller subreddits.
Of course one person's anecdotal experience is hardly evidence, much less proof, but suspicious nonetheless. When the reddit guys visited you and denied there were any bots, did they explain how they knew this? User agent info, statistical behavioral analysis, etc? I'd be really curious how they go about testing that hypothesis against their massive amount of data.
The numbers are fudged by a very small amount in a certain direction, based on my observation. I observed this by refreshing one of my own submissions and watching it gain a vote or lose a vote, and I knew exactly how many people had voted on it because it was in a purpose-created subreddit. One of the admins that lurks Hacker News can probably set us straight on which is correct.
I love that whenever I make a comment here even loosely related to Reddit, someone takes it upon themselves to assume that I've never even been to the site and condescend based on what they think they know. My comment wasn't even remotely about Reddit, but thanks for the correction.
Displayed numbers: 9498 Up, 6876 Down.
Real numbers: 2666 Up, 140 Down.
You cannot judge proportion by looking at the numbers Reddit shows.
Most profound thoughts I think I've ever read on the interwebs. Hard for me not to get emotional reading through them.
I avoid Reddit these days, but this is gold. I'm indebted to this man/woman for their effect on my life. This person will leave strong echoes in the world after their passing.
http://www.reddit.com/r/IAmA/comments/fyqpi/26_hours_left_to...
the amount of love in the comments is overwhelming. (and it might be a naive and inappropriate thing to say but it's odd that it takes 'facing death' in order to gather that amount of love on the webs. or wherever.)
My worst fear is the process of dying itself. After watching a close family member die of cancer, that process frightens me. If I end up in a similar situation, I'll move to Oregon as well.
I used to hope that as I approached death that I'd be so fulfilled with life that I'd be ready to go. I still hope that, but I'm less convinced that it will be so. It almost seems like suffering before death is to make the transition easier.
To me it just all kind of sucks, so I consciously try not to think about it much. It's one thing I have little say over.
Women 1 in 3 getting, 1 in 5 dying.
http://www.cancer.org/Cancer/CancerBasics/lifetime-probabili...
Make every day count!
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1 http://www.cancer.org/Cancer/CancerBasics/lifetime-probabili...
Personally I find it odd that someone who "has just found Reddit" would take the trouble to do an IAMA instead of, I dunno, anything else in their last hours.
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And yet you still have the arrogant audacity to tell the world that what he feels is right is wrong.
Anyways, this is my perspective of the issue. And I do feels its ridiculous.
A) How are phone calls "more real" than internet conversations?
B) Did you read the Reddit discussion you are criticizing? His handle is "Lucidending". He opted to go off medication in his final hours so he could be lucid and spend quality time with family before he checks out, something he was unable to do while completely fucked up on chemo and other drugs. He is spending his last hours with family and on the internet, the internet being a substitute for a physical world tour which he is physically unable to do.
> A) How are phone calls "more real" than internet conversations?
Voices have their good points. They convey a lot of emotion and such. On the other hand, I found that has a big downside as well, especially when dealing with something like a serious health crisis: People can't keep negative emotions out of their voices, emotions which can be unwelcome to the person in crisis. If you are dying and wanting to "get a life", not dealing with the emotions in someone's voice can be a benefit of being online. To me, it's not "more real" or "less real". It's just a different means to communicate, one with different strengths and weaknesses. It's better suited for some things, less well suited for others, but to me it is no less "real".
Oh, and have an upvote.