I can’t find the documentary name, but this article reminds me of it. Basically, a man had chronic pain and spent a decade or more trying to solve it. It got to a point where he realized that even though he had treatments, he was still in a lot of pain and felt like he was just eking out his life just to be miserable every day. At one point, he mentions his grandmother dying of cancer. She’s taking a regimen of pills to stay alive but she’s miserable. She doesn’t have a quality of life, so he eventually asks her why she keeps taking her pills then because they’re basically artificially keeping her alive.
By the end of the film, he says goodbye to his loved ones and has an assisted suicide to escape the pain he was in. It was a really touching documentary. As a society, we have a big focus on “fighting” cancer or other big illnesses. I guess there is a quiet, difficult dignity in deciding to face your mortality too, but it’s rarely talked about.
There is an almost entirely invisible world of people who are alive but suffering to the degree that a normal life just isn't possible. It's completely hidden unless you or a loved one crosses over the line into that world. If you do find yourself on the other side of that line, it's an extremely dark place to be, but even more so because of the loneliness. Almost no one back in the "normal world" is willing or able talk about the reality of a situation where the scales have tipped and life honestly might no longer worth living.
Watching my previously sharp as a tack and vigorous grandfather’s slow and inexorable decline due to Alzheimer’s convinced me that there are fates worse than death. We lost him 2 or 3 years before the date on his death certificate.
My grandfather passed away a few months ago in January, and he also suffered from Alzheimer’s. I remember one day someone mentioned they needed a tool for some house repairs. He overheard this and tried to bring them the tool from his shed. He kept bringing the wrong thing, and he could tell it was wrong and was growing increasingly frustrated because he couldn’t quite figure out how to bring the right thing. It sticks out in my mind because he seemed aware something was wrong, but was completely helpless.
I totally feel it when you say you lost him years before his death date. It’s terrible. My loss still feels so fresh. Thanks for mentioning your grandfather; it is a comfort to know someone else knows what it’s like.
I had a similar experience with my grandfather who suffered from early dementia. He was fully conscious of his condition degrading and that's the part I am most scared of for myself.
It was basically the end of flowers for Algernon on a longer time scale.
Yes, my father passed from Alzheimers, too. He also "died" about three years before his body did. I've been gradually adopting more and more of the regimen outlined in the book "The End of Alzheimers".
My grandmother had a fairly catastrophic stroke (she actually died shortly after due to malpractice, this was awful in the sense that it should never happen but was honestly a blessing in the sense that the result of this stroke was either a nihilist alcoholic trapped in a body that doesn't work or something even worse), witnessing that solidified my conviction that people suffering diseases that cause loss of mental function (like Alzheimer's) should have the right to legally commit suicide in a dignified manner (and the facilities to do within a legally and ethically responsible framework).
I don't know what the US law is, but in the UK at least even flying to Dignitas (for example) with someone is legally not kosher. I didn't pry but I think this situation lead to a suicide in my family also (attributing a single cause to a suicide is usually not a good idea so I won't ponder, other than that it wasn't clean or dignified.)
I think it's possible for a medical+legal panel to resolve issues like that, but the thing that would probably cause me to chicken (should it happen to me down the line) out would be actually doing it sufficiently long after the initial screening (I don't have a statistic but it isn't uncommon for the result to come long before the really nasty symptoms) but before said symptoms set in. In future we can hopefully spot things like this much earlier (I don't know what came of it but I heard a brain scanning hat similar in mapping capability to an MRI - passive only apparently - being discussed in a physics department, apparently past prototype stage)
I think the same argument can be made for terminal illnesses also but I think the issue there is extreme pain rather than loss of mental faculties which is potentially not the same thing in the eyes of a court.
It was almost 15 years for my grandma, thankfully her body gave out late last year. Awkward for us, she was devoutly religious and she'd have never agreed to an earlier end on account of her faith, even if she knew what she was in for.
Same. The worst was grieving his loss while he was still alive because there were other family members that wouldn’t come to grips with the fact that the man we knew was gone. Some of the family grieved over the loss a year before the actual death. It caused strife when his body gave up and it was viewed as a relief for those who already grieved his loss...
My grandfather is suffering from what I guess is intermediate onset of Alzheimer's. A couple of months ago he used to ask for my wife by name during every video call. During our last call he forgot that I'd gotten married at all.
It's terrifying watch him lose his memories week by week.
It is a completely different world. You've heard the words - "cancer", "Alzheimer's", "stroke", and others - but you literally can't imagine the scale of suffering involved until you find out first hand.
I'm not sure people aren't willing to talk about to them. It may be that most people simply don't have the experience, and so are happy living their lives until this other world comes knocking.
I suspect it would make a huge difference to many things - not least health care funding - if there was more awareness of what these words mean.
This reminds me of the little book „Mortality“ by Christopher Hitchens where he describes his experience with this own terminal cancer.
I remember how he describes this different world and also how mistaken the popular notion of „fighting cancer“ seemed to him when in reality it is a passive suffering.
Yup, completely true. Sometimes you can make it back to the good side, but not always. Most people have no idea of this parallel world because they're busy enjoying their lives in a way countless others are unable to. Which is, ofcourse, in a certain way, what many of those less fortunate people would want for them. Just remember to have empathy.
Your comment reminded me of this depressing article[0]. IIRC Pushpinder Singh, a very smart MIT fellow, committed suicide because of perpetual back pain after moving furniture incorrectly. I remember it because it is hard for me to imagine someone with so much potential being haunted with pain after moving furniture with friends for an hour.
I am ashamed I cannot get my parents to hire moving people - it is such an easy trick to say you can move something and not be wary. Imagine a loved one being miserable for the rest of their lives for wanting to move a couch a bit; it is just so depressingly avoidable.
To put it in perspective - the back pain industry is at 100+ billion a year in the USA[1] but spending on video games for 2020 was only at 55 billion or so[2].
One thing that stood out in that story is how some people just thought he was depressed. I know someone who had sciatica and I think one of the hard parts is that it's not easy to see. On the outside you may look fine but you may be feeling the most excruciating pain of your life. This makes it hard for people to empathize with which further fuels the mental health decline. If you have back problems, I recommend the book "Back Mechanic". This book really helped the person I know.
I experienced sciatica for about a day and thought my life was over. I'd take a kidney stone in its place any time; with a kidney stone you at least think that by moving it might help (and no fear it will last forever).
Fortunately in my case I associated the sciatica to having too thick a wallet in my back pocket, and removing that fixed all. Strong recommendation to those reading here to avoid such carrying of a wallet.
Mortality is the number one problem every single human being and all of our fore-bearers, down to the very first single cell organism, have and have ever had in common. It's the end, te path to nothing. Perhaps you believe there is more. Whatever comes next, death is fucking scary.
I believe it's very natural to do everything in our power to prevent death or at the very least delay it, and to convince others - whose pain we don't feel - to do the same.
I can't even begin to imagine how miserable a person must feel when they are decided that they're leaving us early. It goes against millennia of both collective, and also ones own individual fear and uncertainty. With my liberal Dutch upbringing, have nothing but respect for that.
I never understood how the health system spends a lot of resources on keeping people alive when things go towards the end but almost mo effort is being spent on keeping people healthy when they are younger. We are constantly being bombarded with bad food, unhealthy work situations which cause a lot of problems like diabetes or depression but as a society we do nothing about these.
That's actually completely rational if we recall that America is run by pure ruthless greed. It lets young people spend their energy on creating wealth (for others), feeds them with cheapest junk food and when their energy level depletes too much, the healthcare system takes the little savings they have made and sends their bodies to a junkyard. That's how a greedy but smart farmer would manage cattle. One of the reasons this brutal system exists is it reminds the middle class what's going to happen to them should they relax too much.
I think that’s a little too simplistic as the same is true in places with nationalized health services - orders of magnitude more money is spend on advanced age related health than others.
I think it is because it is just simply easier to see that the 80 year old ‘needs’ healthcare and resources more so than the 30 year old. As a society we just haven’t yet grasped the complexity and subtleties of preventative healthcare, especially mental health.
It's talked about in this decent TED talk by BJ Miller - https://www.youtube.com/watch?v=apbSsILLh28 - a guy who lost 3x of his limbs in a youthful misadventure, and went on to be an end-of-life palliative care doctor; he's talking about quality of life rather than lengthening life at all costs.
By the end of the film, he says goodbye to his loved ones and has an assisted suicide to escape the pain he was in. It was a really touching documentary. As a society, we have a big focus on “fighting” cancer or other big illnesses. I guess there is a quiet, difficult dignity in deciding to face your mortality too, but it’s rarely talked about.