Life on the inside as a ‘locked-in’ patient
theguardian.com
theguardian.com
Seeking a bit of comfort, I went to different friends who I knew had lost a parent to speak about the experience.
I hadn't expected it, but a couple of friends had truly traumatic losses. One of them was due to locked-in syndrome.
After a stroke, my friend's dad had this happen to him. It really changes what you feel about death. Initially, there's the fighting stage. You want to do everything for your loved one to survive. I wanted my dad to eat better and exercise. He wanted just for his dad to wake up.
He'd get ill often, and the doctors would give him antibiotics and whatever therapy was needed. It lasted for years, no wake up. Time passed, numerous visits came and went. Eventually the family decided it might be better to let the next illness end it, so they agreed with the medical staff on what to do, and made their final thoughts.
Incredibly, the next infection took years to come. In a twisted irony, the family spent years hoping for improvement, then years hoping for the end.
Weirdly this wasn't even the worst story of the ones I collected. It's just a reminder that things could have been much worse. We tend to not think about death too much, it's grim and challenges our ideas about who we are and what the good life is.
Keeping such person alive is a huge project. A team of experts is needed, not to treat the patient, but to help prevent his/her situation getting worse. I mean, you need several people just to move the patient.
Eventually, the support wears down and the family goes from the help mode to, well, let the next infection take its course.
It’s a dead end and I don’t wish that for my worst enemy.
Brain diseases are horrible. I would take cancer anytime!
So, he had a little less than a year to get his things in order -- and then passed swiftly from complete liver failure. I look back and feel very blessed -- he had a really beautiful passing, which i didn't even know was possible.
Death really is grim, I haven't had much exposure to it in my life up until losing two grandparents this year - holding my mother as she sobbed was heartbreaking.
I can't help but contrast the idyllic memories I have of my grandparents when I was young and the world was so bright and wonderful to the feelings of dread and sadness now. As if a layer of darkness has been laid over my perception of the world. It feels like hapiness and joy, things I used to find intrinsic to life, are now fleeting constructs that we build in spite of the inevitable. Maybe this is the difference between a youthful perception of the world and a mature one.
I'm sorry for your losses.
In the YouTube video linked to from the article, it's impressive to see how well he speaks: https://www.youtube.com/watch?v=5FBLtjVHZ00. You can leave him a comment, and I'm sure he'll respond. It looks like he responds to every comment on his videos, and more human connection in these strange times can't hurt :).
Otherwise it sounds like MPTP https://www.acsh.org/news/2017/01/12/frozen-addicts-garage-d... but that kills dopamine producing cells, so did he regrow these?
I imagine Ellen would have appreciated the same opportunity to decide how she would spend that part of her life. (Ellen is the now-estranged wife of the locked-in guy; she spent months helping to care for him.)
Ditto the taxpayers of Massachusetts, who had to foot the bill for millions of dollars of medical care for the locked-in guy. Those dollars could have funded, say, education or infrastructure.
Adults' choices affect more than just their own lives. That's why we have social norms, and laws.
> Other adults decided that they're going to take care of this guy
Taking care of people is a good thing. What you're suggesting, of other adults banding together and ruining someone's life (assuming for no good reason but their personal gain), is clearly a bad thing.
I mean there are no absolute good and bad but you're
The inaction of those who don't want to be caregivers is not the same as an action taken to forcibly evict someone.
Making an equivalence of the two would mean that anyone who is capable of helping someone else and does not is in the wrong. If that were the case we would all be wrong for not donating all of our money to the poor.
Philosophers better than you and I have grappled with this, I don't think they'd support your reductio ad absurdum.
Agreed, but the distinction might not be relevant.
> Making an equivalence of the two would mean that anyone who is capable of helping someone else and does not is in the wrong.
Depending on the jurisdiction, there are circumstances in which the law says exactly that. [0]
well, ok, I see your point but is this one of those cases? I'm pretty sure it's not; to rescue is a transient thing and of extreme circumstances, and nothing like caregiving which is a long-term process.
Edit: and therefore the distinction is relevant.
Also take note, Jacob got his start on oxycontin, which is legal, and currently the focus of a series of state-led lawsuits against Purdue pharma and the sackler family, major campaign donors to conservative drug policy causes.
I don't mean to come at you, but that argument of yours is one that I've heard and it's dangerous. https://www.mass.gov/service-details/quick-statistics
I take this to mean A. GP supports laws that limit am individual’s actions if they benefit the individual at the (non-consensual) expense of others. And B. GP implies drug use is one of those activities.
With which part do you disagree?
A. Do you believe that laws designed to protect the group from the individual will inevitably fail?
B. Do you believe drug use is not one of those activities? Sub-question, do you believe this depends on the drug?
I'm afraid I'm tired and having trouble understanding your post but am curious. Please correct me where I go wrong as I try to make sense of it.
> A. Do you believe that laws designed to protect the group from the individual will inevitably fail?
Doesn't it depend on the law? Bad laws will probably fail and certainly should fail. Bad laws do exist, as @pksebben was illustrating. Should this law was revoked recently https://www.independent.co.uk/news/world/europe/iceland-revo... but should it not have been?
I suspect I'm getting you wrong, so please put me right.
One person paralysed by a contaminant (not heroin itself) = bad, but tens of thousands of deaths otherwise = ok.
I agree with laws and social restrictions if they are good ones that reflect the proportionate level of harm.
But you know this will go nowhere, unlikely you'll reply but this'll get downvoted because people aren't willing to face up to maybe being wrong.
Edit: none of this is about drugs or guns. It's about common sense and thinking for yourself. Drugs particularly are where aberrations in these show up.
Contrary to your flat statement I do not agree that taking heroin is bad, it only becomes bad when it affects other people negatively.
Why do you think I'm OK with the outrageous number of gun deaths we have? Besides this is about heroin.
> Why do you think I'm OK with the outrageous number of gun deaths we have?
I'm not but guns tend to be used to kill other people much more than drugs can be used to kill other people. So I'm more ok with people taking drugs. But not fully ok, the issue's too complex.
> Besides this is about heroin.
It's not. The damage done was most likely from a contaminant (see my note about MPTP) so not heroin. And if it was heroin it's still not about heroin because I said, exactly in the post you replied to, "Edit: none of this is about drugs or guns. It's about common sense and thinking for yourself." What I feel like I'm getting is kneejerk unthinking reactions from anti-drugs people. I may be wrong.
Unless 100% of people agree to the restrictions then you are imposing on others, not just yourself. Personally I think that we as a society impose on a lot of people for a lot of things and a lot of it is wrong.
I like the principal of imposing on others as little as possible, preferably not at all. Otherwise there's nothing to stop the more powerful majority from screwing over the less powerful minority at some point.
Some examples: Drug laws to imprison african-americans, zoning laws to keep the poor out, voting for taxes on others for charitable causes, blue laws, corporate monopolies, the environment and the tragedy of the commons, making it illegal for the homeless to sleep, algorithms and bureaucracy imposed on others, punishing non-conformity, etc.
I've always thought the principal of not imposing on others is a good idea. I thought it would make a great amendment to the constitution. With this principal to limit the tyranny of the majority, and the manipulated or fickle masses, we could still tackle all of societies problems, and filter out a lot of abuses along the way.
But lately I'm thinking that this just seems to be impractical. It seems that too many individuals, groups, corporations, and leaders want to impose on others. They are selfish and want the world to be as they say and they don't care so much about who has to pay or suffer for it.
I wish this got talked about more. I assume we all have in common that we don't want to be imposed upon by others.
That's silly. 100% of people will never agree to it eg. people who are in prison aren't agreeing to it.
In a society where an effort is made that the law will impose on others as little as possible there would inevitably be people who misbehave by imposing on others - physically hurting people or stealing from them for example. People who impose on others in this manner should still be punished, or maybe exiled.
But there are a lot of people in jail who have not hurt anyone else, for crimes like drug possession. In the comment you responded to I gave other examples where a majority imposes on others with dubious justification.
Look at how fickle U.S. politics is, with our federal-tribal-leaders now expressing the will of a new 51% majority that changes every couple of terms, increasingly treating the constitution as something to work around. It seems that there are way too many people/groups who would be happy to force everyone to their way of thinking, worldwide, and that leaves lots of room for abuse and corruption.
I suppose there's not much that can be done if most people think that's ok.
From the article:
> An unknown toxin, probably something in the substance that had been added to the heroin to make it go further, was wreaking havoc in Jake’s brain
I of course realize how much this must be fool-proof but I would love to know that if I am in a coma, or with dementia, or severely crippled, this would end my life without any external intervention. This leaves zero tough choice to the family (I can imagine some kind of one-time code to extend by a month or so but not more - I do not want to take the risk)
There is no such a thing I could find and I slowly started to wonder how that could be built (for myself).
Regardless, if I was in such a state, I would like the option to self-euthanize. Assuming I had the ability to hear, they could use brain-scanning to figure out my ultimate desire in that area, and ask me on a regular basis if I wished to continue living as a locked-in patient.
Not much of a drinker or toker, I did a bit of both in the company of a friend.
I then vomited all over the bar we were in, passed out, and was taken by ambulance to a hospital.
You may know that it is typical for EMTs to assess and keep patient's mind active by asking questions, such as what is your name, today's date, during this type of situation.
Well, high as a kite and simultaneously blackout drunk, I experienced this as a detached consciousness in an endless black void, being questioned about my existence by the voice from the void about who I am.
It was something that stuck with me...
Be nice.
Cultivate positive thinking and keep fear in its place.
A bit later I was able to open my eyes and my mum told me the nurses had been in panic because I was still hooked up to all the machines and the IV and they were afraid I'd pull it all out and/or hurt myself. They were the ones pushing me down when I tried to sit up.
I think I was like 10 or 12.