If you were born with a disease that made you blind, complete loss of hearing by 20, have seizures, require a feeding tube, colostomy bag, wheelchair and have sleep apnea. Would you want to live?
Part 2: if you were the parent, would you feel it would be ethical to keep them alive?
Nope. Even if a cure was on a cure was on the horizon. Its tough when its someone else though. My father had alzheimers. Initially it was like well he like to walk around and eat and sing. There is some quality of life. Eventually though he could not swallow whole food and was in a wheelchair when not in bed and his hands had curled up. It was clear that if it were I in that condition I would like a nice does of barbituates.
Get your living will done, my dude. If you don't make your wishes known, you'll traumatize some EMS who has to perform a very crunchy CPR on you. My dad, a former EMS, has a "no aerobics" DNR set up so he won't be someone else's trauma.
Thats all well and good but there is no death with dignity here and I have seen the horribleness of hospice.
“no aerobics” DNR
Does this mean DNR only if requiring artificial respiration? I couldn't find "no aerobics" online.
Alzheimer surely is one of the meanest things nature could throw at us. There's that spot somewhere in the degradation where you probably stop understanding your situation. I would like to go just before that and not going bad to mental childhood
Im not to worried about the child thing other than my life is basically pointless at that point and I honestly don't see much of a point of the cost of my being alive at that point. The bigger thing to me is actually the physical. Not being able to feed yourself or eat solid food, not being able to get around by myself. The whole fingers and toes curling up which moves to arms and legs. The thing with the mental state is if you had full cognition and adequate support. Like hawking. Then you still have quality of life in terms of mental stimulation. If your mind is gone but your still good physically then there is a sorta quality of life. You can have some childlike happiness. But man once both go beyond a certain point (and the mental really goes first) its just omg bring the sweet relief.
I barely want to live as is
As someone with half that list of health issues. I struggle everyday. Most people even family do not care they can leave, go eat, live life. I cannot. Nobody cares until it's them. They will never understand, have the compassion, empathy, respect to even try to help you, not even to clean up after themselves for things that make you sick, (gluten issues and they leaves pizza crumbs and greasy pans all over counters and stove). Plenty of sorries to help their emotions feel better though. Nothing for you though. Not money to help with medical things. Not care to keep themselves in order. People do the bare minimum and the world is fine with it.
I don't want to live like that, not as a parent, myself, or my family members. Shits hard. I don't want to die or be dead so I'm not looking to OFF myself but fuck its hard to get through each day. It takes a solid, hard headed, self disciplined, never give up attitude to live like this. Yet you still fail to thrive and have any chance of health.
I am sorry you don't have the support you deserve, even from family. That must make a difficult life even more so.
My wife has cerebral palsy and in the last 5 years has developed chronic back pain that has taken away what little mobility and dignity she had.
It has been upsetting to watch her decline. Doctors seemingly unable to alleviate her symptoms, but we keep trying.
I am head over heals in love with her. The disability doesn't change that. I am there for her every need, day or night. We appreciate each other and spend all our time together. I wish you could find someone to do the same for you.
A deep bow in admiration combined with a sad hug. Thank you for staying and not be the "typical dude" who just vanishes the moment it becomes less easy. I'm sure she's also full of love for you. I wish you all the strength to remain the strong one to make her life suck as little as possible.
Also seconding your point. This dude's family is just toxic shit.
Part 1: No, that's worse than death.
Part 2: Not my choice. It would be up to my kid. If they're in a state where they cannot make a choice, then I would put them out of their misery, because the alternative would be worse for them.
I have none of that and don't want to live.
I want you to live. ❤️
I don't mean to argue or be rude or ungrateful to your intentions, but is it not greedy and selfish to expect someone to stay alive for your pleasure? Obviously we're Internet strangers, we probably won't talk again outside of this thread, but even when family or acquaintances (not sure I have any real friends anymore) tell me that, it feels like they only say that because it's what society expects them to say. They aren't there for me when I'm in need or feel helpless, they can't change the fact that every waking moment I feel miserable and worthless, so to me it just seems like they're being selfish to say I need to stick around for them. If I was important enough to need to be alive, why don't any of them ever reach out to me or check in on me or ask to hang out or anything? They only come out of the woodwork when I'm ready to end it all to chime in with paper thin commentary like this.
😕
If there is a chance for a cure maybe, but also even if it if there is am I just dooming my parents and myself into homelessness for my cure ? If the answer is yes I’ll skip this chapter in cosmic existence not too keen on the current model we are all apart of so maybe my bias has already positioned any position I might have taken with DoomerTM view. As a parent, I would want to do anything to keep my child alive and give them a chance of life that I never had or at least the chance of getting being happy, but I wouldn’t want them to suffer with no port of safety from the storm that is life along with any pain that wouldn’t be alleviated or healed/cured… I couldn’t do that to just have a genetic version of myself….. man the longer I think about maybe I shouldn’t have replied maybe I wasn’t the target audience ¯(ツ)/¯
No..
On the Sub question about the parents I don’t have an easy answer. That would be a conversation I would have with My child.
I can't think of a clearer or more concise answer.
Yes, I think I would want to live.
I don’t think we can truly empathize with how strong our will to live is.
Also, I think questions like these tend to cause us to dehumanize folks with disabilities. (Edit: correction, I don’t think it’s the question that dehumanizes folks with disabilities, I think it is the thoughtless answer given by folks that tends to dehumanize)
Folks with disabilities absolutely can contribute to society. The most obvious example is Stephen Hawking. He could only move his eyeballs or something ridiculous like that, although I believe he did start off fully functional and slowly lost control of his muscles over time.
There’s the issue of ‘being a burden’ in family or caretakers, which is more an issue of health care in our society (USA here). It is not the fault of the disabled person that they need health care.
We are all a drain on society. No one lives in a vacuum.
No one is self sustaining, no one lives without the help from society without which we would all most likely die in a few weeks if not sooner.
Folks with disabilities are humans. It’s society’s job to take care of all humans. Period.
“If I died and went to heaven, I would sell my soul to the devil just for the chance to come back and stub my toe….” —— paraphrase from a line in a poem by Tim Seibles.
Not even if you paid me
If I knew about it and it's not like an overnight change I think I will try to thrive. Most of that are manageable with some support. Imagine the brownie points I can have.
Also! I'll learn how to wheelie.
If I'm the parent I'll try to give them the best life. If it's still unbearable for them then I'll support them whatever they decide. Canada has MAID(medical assisted in dying).
Blind wheelies would certainly be impressive
It's so damn difficult to questimate what that'd be, but I'd like to wish I would have the will power to live the fullest life I could
No. My main reason for wanting to live as is is so I can improve the world for others, and in that situation I'd just be a drain on society, and also suffering.
If I was a parent I would not make decisions for my child, assuming they are capable of making decisions, it's not my choice whether they should live or die. By the same token, I wouldn't bring then into the world in the first place, however, as they cannot provide consent to live.
My main reason for wanting to live as is is so I can improve the world for others
What a damn noble, yet horribly rare, ethics to live by is that? Kudos...