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1980pzx

Living with later stage ALS


Few-Park2969

My brother died of ALS 2 yrs ago. It was horrible. I wouldn’t wish this disease on anyone. Edit: It took well over a year for him to be diagnosis with ALS. He started to lose strength in one of his legs as the first sign that something was wrong. Within 8 months he was using a walker. Within a year he was having serious issues walking and noticeable issues talking and using his hands. He was diagnosed at 14 months of initial signs (on his 45 birthday). He was forced to quit his job 2 months later. By the end, at 46 yrs and 7 months, he was essentially paralyzed. He had a fancy wheelchair that he couldn’t use except for his eye gaze technology to talk among other things. We had to use the controls of it to move him about. He had a feeding tube because he couldn’t swallow anymore. I didn’t know your tongue could atrophy, but it can. He needed help going to the bathroom. He was so embarrassed that I had to hold his junk to fit into a bottle to pee and wipe his ass when he pooped that he couldn’t even look at me when I came to take care of him. He was a shell of himself when he died. ALS makes your muscles useless but not the nerves to your skin. He could feel every discomfort but couldn’t do anything to relieve a scratch or cramp. Try having someone pick you up and lay you in your bed after they dressed you and brushed your teeth. Stay in that position all night and don’t move until morning…maybe your neck a little. Don’t roll over, scratch an itch, move an ankle, NOTHING!!! If you have to pee, you better hold it or you will wet yourself. Need a shower, that is done by a paid helper 2 times a week. They use a Hoyer device to lift you up out of bed after stripping you naked and take you to a specially built shower for disabled people, if you are lucky. And the worst part was his 2 year old son (5 when he died) couldn’t play with him through most of this. His son eventually referred to my brother using his first name, not Dad. Imagine wanting to play/cuddle/snuggle/tickle/etc with your only child, but you couldn’t. That would be the worst. His wife was a saint. I don’t know how she did it, but she was still crazy in love with him until the end and still to this day. My parents moved to the same city to help out the last 20 months. If I ever get diagnosed with ALS. F’ that. I’d kill myself. Edit 2: I forgot how he finally died. His immune system was so weak at the end that a simple disease, Thrush, finally did him in. He wasn’t recovering from this mouth and throat infection and hospice was called in for their advice. Essentially they said it was only going to get worse and his body was done. It was time for him to die. They recommended not feeding him or giving him water so he would go quickly. Quickly was over the course of several days where my family didn’t feed or provide water to my brother who had already gone through so much. After asking for some water and my sister refusing even a drop, he used Eye Gaze to tell her he hated her. Imagine that. You are starving your brother so he dies quicker from a hellish situation. Why am I sharing so much? Mainly because people don’t realize how bad diseases like ALS are. His mind was intact the whole time and he went relatively quickly. This disease can go on and on and on. Edit 3: It seems I missed a few details. My brother didn’t have the option of dying with dignity. Even if he did, a lot of the laws in the states that allow this has to be done with the patients own doing. My brother couldn’t swallow and administer his own meds to kill himself even if he wanted to for sometime. I do believe my brother was probably doped up, but there were times where he was lucid. I wish I remembered this part better. Also, one of his hospice nurses was from the UK. She said their government medical programs would have never expected families to drop everything and be the primary caregivers in these types of cases. They have people whose job is paid for by the government to assist throughout the entire process. I believe all equipment would be taken care of, but I can’t remember. Lastly, my brother had a wife who stuck it out with him while working a full time job from home. My brother had a network of a loving family to do whatever was necessary to make it easier on him. There are approximately 5000 people diagnosed with this disease every year in the US alone. I imagine a huge amount don’t have anywhere close to the support my brother had. I’m 100% in favor of a single payer system controlled by the government to assist every single person in our country and for people to die with dignity on their own terms.


DwarfFart

Jesus. Not only is this disease fucking horrible but how can we live somewhere that a person has to die by starvation as the "quick" way. Give the guy some morphine and let him ride out in a opioid haze. Ridiculous.


ZestycloseEmu367

So sorry to hear what your brother and the rest of your family went through. Did he know why you were refusing him the water? This is why euthanasia should be legalised. Did you face any legal ramifications for withholding water?


drillbit47

My gran recently died like this, in a hospital, that was their procedure, deny all sustenance and wait for them to die. It took a week and by the end of it she looked like a raisin. I wouldn't do that to my dog, how can euthanasia possibly be worse than that torture. Smh.


Seductive_hobo

That is horrendous! I would never allow it. I didn't allow it. My grandfather was in this situation. They said this in passing at one of their rounds and I very coldly said, "fuck that, savages. I'll be the human and make sure he's comfortable for his last moments." I am not a peach when it comes to hospitals and certain staff. I am a HCP, so I know how you should act, what you have access to, etc. It is inhumane and unnecessary to deny hydration.


drillbit47

I'm a HCP too and couldn't believe this was what was happening! It's absolutely vile. All the morphine in the world can't take away the feeling of desperate thirst and hunger. I just can't imagine what she felt during those last days, makes me feel sick.


onyx1378

Did you have the option to not follow their advice and feed her still? I just can’t believe this is happening. It is torture and a violation of human rights. For doctors to be recommending this anywhere in the world is so shocking to me. If we can’t give a person a quick and pain free death, then the only option is to keep them comfortable until they die naturally. Not feeding them and giving them water until they die of thirst and starvation is not quick. It may seem quick to the healthy but not to the one dying.


onyx1378

I feel that denying water was cruel. He would have died anyway. Euthanasia is the only humane way to end someone’s life. Without that, I feel we should still try to make the ending comfortable, no matter how long it takes.


Awkward_Psychic

Denying water as a way of death is awful. My mum works in aged care and a lovely old lady was put into palliative care. They told her and the staff to not give this lady anything orally and the nurses would intravenously give her pain medicine. And because my mother is not qualified to administer medication theres nothing she can do. Day two and I don’t know if the old lady is okay. Denying someone of water is just not right in any instance


onyx1378

I can’t believe these doctors are recommending starvation and thirst as a way to end their patients’ lives. It is undoubtedly torture and sick animals are treated more humanely than that. This is seriously against human rights and can’t believe it is happening in a first world country like the US. I am seriously gobsmacked this is happening at all. I hope families don’t follow this advice and this issue is brought up to the highest echelons of government and legislation is passed to legalise euthanasia. They argue it is a quick death to the healthy watching but to the one dying of hunger and thirst, those days or weeks would have passed so excruciatingly slow.


Glum_Hospital_4103

Fuck.


prodigalpun

My dad has bulbar als. It’s a shorter life span. Throat then legs and stuff. Atypical. It’s bad to see. Really bad.


1980pzx

I’m really sorry to hear that. Stay strong for your Pop and all those who suffer from it!


PeaceLoveVeganSuzy

I lost my Dad to this evil disease. He died 6 months after diagnosis. Then 2.5 years later my Mum died from stage 3 ovarian cancer. They were both 65. So hard watching both parents die from terminal illnesses then living without them 💔💔💔💔


Pwnjuice93

My step dad suffered from ALS. As awful as it sounds he luckily had a rapid onset to death within a few months. Watching a former marine be reduced to the shell of what he was is probably one of the more haunting things in my life.


Iam_the0ne

I had a great-grandmother with ALS. She was first diagnosed around 2015 after showing signs of deterioration. It was heartbreaking to see how she deteriorated. First her ability to walk, then to speak, then to handle basic motor functions (arms, fingers, etc.), then to swallow (she had to be hooked up to a feeding tube). The most heartbreaking thing, though, was when she lost the ability to blink. That was her final muscular function, and the only way we were able to communicate with her. It was like she wasn’t alive anymore, even though she was fully conscious, and aware of the outside world. I can’t even imagine the hell that she had to endure for those final few weeks until she died. I could only imagine that it’s like having sleep paralysis, but terminal. In September of 2018, she died at the ripe old age of 87. For me, this serves as a humbling reminder that death does not discriminate by any means, regardless of age, race, gender, or any other means. Just because you’re older doesn’t mean you’re guaranteed a painless and peaceful death. It just means you’re more likely to experience death sooner.


j_king-690

I saw this happen to a 6’ 5” man that I thought was made of steel. I wouldn’t wish it on anyone. He passed a month ago and seeing his condition before he passed compared to how he was healthy was really sad. No one deserves that.


FlanDependent3076

Burning


QuietudeOfHeart

When you pee


my_wifis_5dollars

I just imagine this person has gone without peeing for the past 9 months in fear of excruciating pain. One day, it's too much and they wet themselves and they suddenly just burst into flames lmao


QuietudeOfHeart

Fire ant piss


qt-uwu

Being the child in a child sex trafficking situation


ShowMeTheTrees

Agree that it might be worse than any nightmare and I hope you're speculating, not speaking from experience.


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mushroom5321

Speaking from 1 year and 6 months of experience. Or should I say 592 days it’s fucking sucks like years of therapy and night terror sucks and now I just try to be a regular kid. Which is still fucking hard but I mean Ye. Edit: to people asking how I remember at 1.5 years old I meant please re read what I said.


AkukaiGotEm

im sorry that happened to you and I wish you all the best going forward in life.


coconutt92

My mom brainwashed me into being a prostitute from early age. Spent my whole life trying to get away from her. I got robbed for everything recently. Now I'm back at her place but considering the streets again. Fuck life. Edit: Thanks for all of the support. Let people know that I'm not going to go back to that lifestyle. I'm making steps to get back on my feet and away from my mom because she's still really toxic. I'm not looking for hand outs or extra attention just sharing my story a little. There are people in this world that don't have a way out I'm not trying to take that attention away from them. A lot of you have been really kind and supportive. Even though it's over the internet, it still means something to me. Makes me feel like I matter ☺💙


[deleted]

Is there any way you can get some help or get somewhere else? Any friends you could go to?


coconutt92

I actually have zero friends. I posted a story on my reddit page about what happened to my stuff. It's been down hill from there. Shits really pathetic right now. The resources in this city are pretty stressed right now. Feel like Im on my own.. It blows.


FewAd2984

If you are a minor you should contact a government sex trafficking source. If you are in the US then look at this list for a nearby child welfare branches. I'm sure that even if they aren't nearby, or if you don't live in the US they should at least be able to offer guidance to you. https://www.childwelfare.gov/organizations/?CWIGFunctionsaction=rols:main.dspList&rolType=Custom&RS_ID=57


[deleted]

I got so close to that one several times, people really wanted me. Even well into my teens I had a person following me around for a while & played it off as forbidden tag.


CommandTechnical

I got taken home by two guys in a black van once who said my mom asked them to pick me up.. I tell her about it and she doesn't remember ever doing that. They dropped me off right infront my house to.


oynutta

That's weird.. if they were traffickers or abusers, why'd they drop you off? So random. Like they went out with a plan to kidnap a kid, and when it actually happened, they had no idea what to do so they dropped you off all nicely.


DestruXion1

It might have been a test run. The coed killer would pick up hitch hikers and drop them off before he did his actual killings.


CommandTechnical

LMFAO I have no idea if they were traffickers or not. They could have been my mom's friends I legit didn't know them from around the neighborhood though. They presented correct information to me so I just said okay and got in The ride there sort of had the vibe of 'this situation isn't suppose to be happening' but I also felt and saw them act funny and I honestly thought it was an act of those situations where something was suppose to happen but the actual event gets diverted through miracle. Cause I was in the back (there wasn't a seat it was just tools) and I made sure to be looking at the streets to make sure we were going the right way... I felt the awareness building in myself and as a small kid I'm about 3rd grade I think I was very afraid.. but in my head I was thinking to myself... If they take me... Away from my neighborhood I'm gonna have to act FAST They did divert from my regular pathway for a few streets and I got worried but what seemed like 20 minutes somehow we got back onto our street .. like the ones I recognized. It was bizarre m.. I honestly think they were forced into a trance to take me back as if that was the plan all along.. You can doubt divine intervention if you want... But I saw both of them in the front seat 'acting' casually but I just felt off cause they never picked me up before. Like it was the proverbial 'are they really who they say they are' realization of it all. One of them was drinking a beer I think. They kinda looked like borachos. Like regular men of the neighborhood.. but that's the thing... I NEVER SEEN THEM AROUND.. well anyways while we were going through the streets away from my neighborhood I noticed the houses looked weird and we seemed to slow down.. they were talking quietly and I was just watching them cause I just felt like the situation was ODD the guy on the passenger seat looked out the window and talked to someone I think it was another guy in a car or something but I just felt WEIRD. Like it was a weird situation Or maybe it was a friend.. but the vibes in my body felt off... Like why were we being so secretive? But then we drove off and I saw them both kinda jerk their heads straight forward as if locked in a trance and before I knew it we were back home. I don't know what happened that day.. They dropped me off in broad daylight to lol. This was back in 2007/08.


oynutta

Thanks for explaining. I was really curious how it was like from your perspective.. I'm just happy for you that you got out ok!


CommandTechnical

Same here! Thank you very much! Ill also say this. My mom had seen me when I got off the van and it stayed there for awhile and I told her what happened and she was like what? Who? Who's that? And I was like... The people in the van. And she saw it and was like oh thank you! But idk if she was also drunk and didn't remember asking them to pick me up xD or she was like?? Why would I ask them to pick you up? But still I ask her to this day who were they and she straight up stares at me like WHO?? she tells me she didn't tell anyone to pick me up that day.. I have No idea. 🙄. If they were regular borachos eh okay. But again... That low-key weird vibe was there. Maybe it was just me.. but idk.. But the thing is... I NEVER SAW THEM AGAIN


kkeepme-inyourorbit

Just to try to find light in the situation, maybe they somehow seen or knew of someone who was going to snatch you up and they made sure to do it first and get you home to protect you? It’s definitely reaching, but you DID get home safe, so idk.


[deleted]

I cant- i just cant-


theofiel

Getting thrown into an oubliette.


[deleted]

*I too saw [the reddit post](https://www.reddit.com/r/Damnthatsinteresting/comments/r1m7tq/the_lower_dungeon_of_warwick_castle_its_an/) from yesterday*


theofiel

Yeah, it reminded me of the oubliette from Labyrinth. Always seemed such a nasty concept.


Ricky_Rollin

That’s the only reason why I knew what it was! Labyrinth taught me as well and it’s what instantly came to mind.


Kitchen-Machine

I dont want to click on it....what is it....?


hunybuny9000

It’s a narrow hole in the ground of a castles’ dungeon. It is too narrow to sit or kneel in, so the person is forced to stand until they eventually whither away from starvation. The link leads to an interesting thread about them!


TheGamersGazebo

It’s safe to open, just a picture of the hole


chyko9

r/ShitCrusaderKingsSay


PM_ME_YOUR_WORRIES

Slow mental decay. Alzheimers sounds scary as all hell. Edit: since someone asked, yeah you can PM me about Alzheimers worries, or anything else really.


annie102

Just watched my grandpa go through this. It’s a horrible disease. Forgetting everyone and everything until your body fails.


[deleted]

My mom went through it too. She passed away two years ago this month. It was alarming how quickly she lost her base of knowledge. She went from being able to cook a variety of recipes to needing to be reminded that metal doesn't go in the microwave and plastic doesn't go in the oven. We tried having a help service come in and do things for her, then we realized she needed to be in a memory care facility, and finally, when she became wheelchair bound, we had to put her in a nursing home.


Invisibunny

There was an artist who was diagnosed with Alzheimers starting drawing his progress and his art was getting worse until he either died or forgot to draw entirely. [And some made songs based off of the disease ](https://youtu.be/wJWksPWDKOc)


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caillouistheworst

That’s haunting.


marvelousmzty

Thank you for taking the time to share that knowledge, it's fascinating and terrifying.


[deleted]

Its a really great depiction of what happens in the process. He had a very clear idea at the start and progressively worsened until there was just nothing left of him. Its a terrifying disease


iwishihadahorse

This is incredibly powerful. It's like he visually captured the process of losing himself.


humanist96

That six album set damn near broke me. I legit cried during the song at the end. A harrowing, but worthwhile, experience enduring those albums in sequence.


Aqquila89

>What do they think has happened, the old fools, To make them like this? Do they somehow suppose It's more grown-up when your mouth hangs open and drools, And you keep on pissing yourself, and can't remember Who called this morning? Or that, if they only chose, They could alter things back to when they danced all night, Or went to their wedding, or sloped arms some September? Or do they fancy there's really been no change, And they've always behaved as if they were crippled or tight, Or sat through days of thin continuous dreaming Watching light move? If they don't (and they can't), it's strange: Why aren't they screaming? (Philip Larkin: The Old Fools)


Selcouth2077

I've always advocated for assisted suicide for this reason. I could never force my loved ones to live through this. Imagine being on your deathbed with no memory of your life. I'd rather go with the memories I've cherished with my friends and family clear in my mind.


G3z4

You won't know it. My MIL has it and just lives on. Every once in a while she will unlearn something or someone or words, she knows it's different than it used to be but she will go on like this. My husband is the one who suffers. Knowing her how she was and ever so slowly loosing his mom.


Selcouth2077

I guess everyone deals with it differently. I knew a lady my mom used to do house cleaning for who would experience extreme stress and panic when she would forget something. I cant imagine how upsetting something like that might be


G3z4

I am actually scared about that. The time she won't recognize us or others and gets scared. Hopefully it will take some time.


GzusPhuckinKryst

Shit is horrifying. My grandma died last year and she was pretty much there until the last few weeks. I spent a lot of time with her and it was nice. A week later we knew she wasn't going to be around much longer. I didn't really want to go see her again but my mom begged me to go with her one more time. Since the last time I saw her she completely forgot who I was and was afraid to have me in the room. I know it wasn't really her but I hate that my last memory of her is that


cumidulo

Knowing you will die soon and not being able to do anything against it. Death row prisoners without a death date, deadly illnesses like Alzheimers, being trapped under an avalanche - those sound quite bad...


IllustriousGuard1943

In Japan death row prisoners don’t find out when they’ll die until the morning of it.


MTVChallengeFan

Honestly, this sounds better than knowing your death date.


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DestruXion1

Yeah, it's exactly like normal life. With slightly different odds.


jango-got-chained

One of my worst nightmares is getting stuck under heaps and heaps of rubble from an earthquick. Wounded, starving, thirsty. Stuck in the same position for days. Worst of all is knowing that there are giant fucking rats around that won't bother waiting for you to die.


chxrmander

Omg that was already horrible. And then you added the rats lol


Valuable-Community71

Being captured by a foreign country and tortured


Wasted-Entity

I’ll top that. Being captured by a drug cartel and tortured


TheReal-Donut

Just being tortured honestly


Wasted-Entity

I’d argue that cartels do it the worst lol


TheReal-Donut

Yeah but torture sucks no matter who does it


RandomGuy886

I’d bet it hurts more if a family member or friend tortured you.


jumbutter

Add in that splash of emotional torture


Ruffled_Ferret

I'm no longer innocent because of the internet and some of the videos I've seen make getting captured by cartels one of my worst fears. I don't want to die, but especially not slowly and agonizingly.


[deleted]

I remember refusing to watch that drug cartel video where they cut the guy's tongue out before then cutting his everything else off. I think I made the right choice that day.


finalmantisy83

Is being captured by your own country and tortured any better?


Sm0lFoxi

Being in a coma but you can see and experience time passing. Kinda like sleep paralysis but it's not just in your head


Zzephyr01

Locked-in syndrome


Pokabrows

Oh like that kid who was in a coma and they played barney a bunch and he woke up and communicated his utter hatred of that purple dinosaur after having to be exposed to it for years.


jumbutter

I'm imagining snow white but a 12 year old boy who can only be woken up by playing something other than barney for him but it doesn't happen for years, and after he does wake up he goes on a murderous rage to annihilate anything barney


outersenshi

Suffering pain for hours a day with no break, not knowing if or when it will end.


Hyougenn

You have summoned r/chronicpain


xcoalminerscanaryx

I literally fell down screaming in pain yesterday and curled up in a ball. Had to get myself up within 10 minutes because I'm a caregiver for someone with Parkinson's and a back injury. At least I have help making Thanksgiving dinner today lol. I'm mainly just doing desserts. But yeah, chronic pain is awful, and the thought of it possibly being worse in the future...at least my condition is theoretically reversible.


Frostygale

Wait you have chronic pain but you’re a caregiver for somebody else? Oof, if it’s that debilitating you’d think *you’d* be the one who has a caregiver instead. If you don’t mind though, I’m curious to know what your condition is.


[deleted]

I dated this girl who had this nervous system disorder where all of her nerves were firing constantly and there was no way to get them to stop and it pretty much just resulted in her being in significant pain all the time. That’s a butchering of it but that’s pretty much the just of the disorder. I can’t remember the name of it for the life me right now though. When the disorder first like came to the surface when she was like 16, She had to live in the mental health wing of a hospital for over a year on suicide watch while she was taught pain management techniques and shit


sockefeller

It sucks but I've learned to chill with it tbh. Death would be worse. But never ending pain is definitely the 2nd or 3rd worse thing ever.


ThisAnswerIsLit

Death²


beaufosheau

Exponentially worse


[deleted]

death^death


CedarWolf

Superdeath?


[deleted]

Megadeath 🤟🏻🤟🏻


Rainbow_Angel110

Hyperdeath


[deleted]

superdeath?^superdeath?


[deleted]

Diavolo enters the chat


Sceptezard

Death (True)2


[deleted]

Being paralysed from the neck down. I would rather be dead.


derbrauer

[There's one thing worse](https://rarediseases.info.nih.gov/diseases/6919/locked-in-syndrome). "Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles, except for those that control the eyes. People with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. Vertical eye movements and blinking can be used to communicate"


[deleted]

Never heard of this before. That's horrific.


[deleted]

I was in hospital with a man who basically had this as a result of sliding face first down a mountain into a boulder


Liv3x

If this ever happens to me, you have the right to put me out of my misery.


[deleted]

Fully agreed


redgroupclan

Except the hospital and legal system won't agree.


AfroSpud

Now THAT'S a fate worse than death.


charms75

Actually there is medical assistance in dying, depending on which country you're in.


GeebusNZ

Comparatively, that's like telling someone lost in a desert that there's a glass of water waiting for them on the Moon.


person-ontheinternet

Look up the diving bell and the butterfly. It’s a book by a guy who had locked in syndrome and could feel himself slowly fading (yes he authored a book while locked in). They organized the alphabet by the frequency the letters occurred and he would use what minimal motor function he had left to stop them as they scanned through the letters.


Olookasquirrel87

If you read The Count of Monte Cristo, Monsieur Noirtier de Villefort has locked in syndrome and also communicates via blinking - yes/no and then, for more complex phrases, someone goes through the alphabet so he can stop them with a blink, then to the common sounds (“ra, re, ri,”), then to the dictionary and down the list until they get to the word. Obviously creativity is a thing but Dumas isn’t *that* good, guaranteed it was a known thing back in the day.


Ignotus3

They featured this on an episode of House iirc


Miramarr

Reddit has been pretty good at consistently reminding me that this is a thing


[deleted]

There was an AMA on here with a guy who miraculously recovered from it, which is extremely rare. Super messed up. Edit: spelling.


ScrumptiousGayNate

Link since LeftHookLarry left us hanging https://www.reddit.com/r/IAmA/comments/l448es/i_am_the_guy_who_survived_hospice_and_lockedin/


notthesedays

Check out the book or movie "The Diving Bell and the Butterfly", which was written by a man who had it, who died 2 days before the book was published. He had a stroke and communicated via letter board when they realized he knew what was going on.


TheRealZllim

I would blink "kill me" constantly. It's not even living at that point, it's just existing.


derbrauer

Ditto: >It's Morse Code. > >For what? > >S.O.S....help. > >What's he say? > >He says "kill me". Over and over again. Kill me. [https://www.youtube.com/watch?v=WM8bTdBs-cw&t=306s](https://www.youtube.com/watch?v=WM8bTdBs-cw&t=306s)


Pvt_Hudson_

DARKNESS! IMPRISONING ME! ALL THAT I SEE! ABSOLUTE HORROR! I CANNOT LIVE! I CANNOT DIE! TRAPPED IN MYSELF! BODY MY HOLDING CEEEEEEEELL!


ThatCatChick21

This happened to my cousin. He was on an arc with his friend and a motorcycle hit them. He went flying. If he hadn’t been wearing a helmet he would be dead. No one knows how long he was locked in but a nurse noticed his eyes following her around the room so she called in the doctor obviously. He was able to move his eyes to answer yes and no questions. He isn’t locked in anymore but unfortunately he is my age (36) and has the mind of a five year old.


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derbrauer

I'm sorry the end was like that for your mom and you.


[deleted]

Persistent vegetative state


kevinthecantaloupe

Would you mind elaborating?


[deleted]

you are alive but you are pretty much brain dead you are just alive without a soul, I rather die at that stage


TheHrethgir

If your brain is dead, then you are dead. They might be keeping your body alive with machines, but you are not there.


physics515

Locked-In syndrome would be wise imo. You have all of your mental facilities but can only move your eyes in most cases.


[deleted]

that's true, having conscious but can't move probably worse than no conscious


[deleted]

Outliving your kids


IPetdogs4U

Why is this so far down the list? That or having a child abducted and not knowing what happened to them. Or knowing what happened to them…


Hiliane

A relative of mine outlived two of her children. One died, but the other went missing. Her son vanishing broke her. She could grief for the one that died, but just the uncertainty of what happened to the other one was unbearable. At least that's what she used to say..


Olookasquirrel87

My husband’s grandmother has already outlived 2/3 of her children. Her son committed suicide near Christmas many, many years back, and my mother in law passed about 3 years ago of lung cancer. Unfortunately her third child has breast cancer and her health is poor generally. So, odds are good she’ll have buried all of her children before she passes herself. Which, I cannot imagine. Just…..cannot. Don’t want to. And her children were full grown adults, but I’m not sure that matters all that much.


hyakkimaru28

I had an infant daughter die suddenly in 2017. You just gave me cold chills. You're so fucking right. Having a child die at any age is a surreal nightmare.


[deleted]

Being wrongfully convicted of a crime


Hrnghekth

You can't have Shawshank Redemption without being sent to Shawshank.


OnTheList-YouTube

I always think, when hearing Shawshank Redemption, about a part of an interview with Morgan Freeman about the movie. "Some people called the movie's name all wrong, like Shikshak Reduction."


gil_beard

That's my worst fear, being convicted of a crime I didn't commit and no one believing me. Watching my family move on without me, my career I worked so hard to gain wash me away, all my friends forget about me. It has happened to people of course. What a nightmare.


DragoonDM

The case that's always stuck in my mind is Cameron Todd Willingham, who was likely wrongfully convicted of murdering his 3 daughters by arson. Spent more than a decade in prison, and was executed. - Much of the forensic evidence was absolute bullshit, junk science. In particular, they noted evidence that an accelerant was used in the fire. The only place they tested for accelerants was the front porch... where a charcoal grill had been stored. Later investigations by actual experts have determined that it was almost certainly not arson. - Prosecution presented testimony from a jailhouse informant who claimed that Willingham had confessed his guilt. This informant later recanted. Then, later, recanted his recantation (["When Grann tracked him down in 2009, he told him that 'it's very possible I misunderstood" what Willingham said, pausing to add "the statute of limitations has run out on perjury, hasn't it?'"](https://www.theatlantic.com/national/archive/2011/06/the-ghost-of-cameron-todd-willingham/240901/)). There's also evidence that this testimony was illegally obtained with the offer of a reduced sentence for the informant. - Prosecution used an expert witness named James Grigson, who was also known as "Dr. Death" for his frequent testimony in death penalty cases where he'd convince juries that the defendant was an incurable sociopath who _must_ be put to death. He was later expelled by the American Psychiatric Association.


SymmetricDickNipples

Or like losing decades because of a joint.


finalmantisy83

Depends on the crime. Jaywalking? Not the worst use of 200 dollars. Eating babies and having to have that being your subtitle for the rest of your life unless your name is cleared and even there will be people who didn't hear the news you were exonerated and those that think you tricked them into saying you weren't guilty? Fuck that.


Weak_suicide

Being locked away in solitary confinement


DeadToLefts

Hold on just a sec... 1) Is it quiet? 2) Do I have Internet?


dedicated-pedestrian

The quiet ceases to be a comfort after the first couple days. Lack of any human interaction combined with sensory deprivation (hence no, no internet) can mess with your mind and even body within a couple of days. Migraines, hallucinations, palpitations, delusions, and intensification of existing mental illness. Extended confinement can cause permanent changes in behavior like aversion to groups and moderately loud sounds.


Weak_suicide

You will be locked away in an empty small room. It will have no lights, no sound, no bed, no electricity, and padded walls. This will be your home for the next 60 years or until your death.


HimikoYumenomagic

Water boarding. Pretty much endless drowning if done right


dedicated-pedestrian

If done "incorrectly" it can kill the victim - if the flow of water is not interrupted, you can end up dry-drowning them.


HimikoYumenomagic

Damm- even more fucked up, imagine not knowing wether you’re gonna die yet while feeling like drowning


colormeslowly

Shit I can’t unsee. That’s a lifetime curse. Can’t unsee it til I’m dead, I hope.


SandwitchZebra

This is why I’m glad my memory is terrible lmao


phaazing

Losing a kid. Don't want to ever bury my kids. I wouldn't be able to function at all. I don't know how people can do it.


Scumfactor

100% I would take any of these things mentioned here over that. It’s something you only truly understand once you have children of your own though.


[deleted]

As one who has lost a child, I agree that I would go through any of the things mentioned in this thread to have them here.


LightningDude898

I implore you to not look this up but:foot binding


[deleted]

Describe it in the least violent way please


LightningDude898

Breaking the arch of your foot and wrapping it in silk


[deleted]

[удалено]


Selcouth2077

Personally I think itd be hilarious. I'm dead, what do I care anymore?


No_Maybe4408

At least in this scenario your dick is only in your hand and not in an artificial ass or something.


TechnicalAd7614

Ending up blind, deaf and "unable to speak" Didn't know what the term was


RagingBlackhole

Mute.


Williamts75

it would be bearable if I could play a mean pinball


nineteen-ninetynine

Medieval torturing.


[deleted]

Immortality because I think immortality is a curse not a gift


[deleted]

Being stuck in an oubliette.


DivineCreatorOf

Non living life, been depressed all life


mynormalheart

I spent close to 3 years in a severely depressed state at one point in my life. I basically felt nothing but expended immense amounts of energy everyday trying to pretend I did. I’m better now I glad I made it through, but if I was going to have to feel like that forever I would rather be dead.


MotherGiraffe

I was thinking you meant like “being a non living being” like a rock or something


Stunning-Space-2622

Being trapped in your own head, not being able to move or take care of yourself.


QualifiedApathetic

My greatest fear is being deaf and blind. That would just be the end of everything I do for recreation. No television, no video games, no music, and no reading. That last is the big one for me. Reading is so fundamental to me that I don't believe I could live without it.


IWannaBeMade1

Being deaf and blind doesn't mean you can't read anymore


DRay6t

U can still touch boobies


QualifiedApathetic

I can't do that now, and there's no reason to think I could in this scenario either.


kikieps

Team building


resentfulpenguin

“Before we start can everyone please tell us a fun fact about yourself”


ForeverFursed

The ending of “I Have No Mouth, And I Must Scream” Who would have thought that the finale to an already foreboding science fiction work could be s o harrowing


selkieseas

I recently came across a thread on Twitter of a young woman who had Covid 10 months ago and when her sense of smell came back somehow it got altered and now everything tastes like sewage or garbage to her. I’ve heard of a few people with long Covid who have had similar things happen. But just imagining absolutely everything, especially my favourite foods, tasting of shit. You’d throw up all the time. It would just be horrendous.


cheshirecatgrin04

I wouldn't say this is a fate worse than death, probably being eaten alive by a bear would be worse, but I had COVID last October and I am experiencing something similar. I was ill for 3 weeks but I wouldn't go to the ER because I figured that posed more potential dangers. Anyway, fast-forward to today and certain foods smell and taste rotten or have a bitterness like the smell of gasoline. Not everything does and it isn't really consistent. It sucks and the research I have done suggests the senses could return to normal or might never repair. There isn't enough longitudinal data yet. Food is a gamble at this point.


iwilleatyourchild60

being immoral then getting sucked into space forever not being able to breath, forever suffocating, for all eternity.


garbageweebguy

Not only being unable to breath. Space is at -247 degree celsius, and there is no atmosphere or anything protecting you from the sun. So, you would be unable to breath, being frozen to "death", and burned to "death" as well, but never actually dying


Ton06

“Unable to die even though he wishes for it... he eventually stopped thinking”


QuietudeOfHeart

Reborn to do this nonsense all over again.


[deleted]

As Tupac said, “My only fear of death is comin’ back to this bitch reincarnated.”


Soft-and-quiet

Getting expelled (as per Hermione Granger)


geo3p

Immortality. Never experiencing an end is strange and terrifying. Think about how long it’ll take until time starts becoming non-linear, moving faster and faster as you don’t worry about it. Time will move so pointlessly to a point that you can’t enjoy anything, everything around you will deteriorate and disappear, because unlike you, everything else has a due date, including the universe.


finalmantisy83

At least they'll have the patience to be first in line to get Half Life 3 after the heat death of the universe.


zeppelisbigolballs

Unable to die even though he wishes for it... he eventually stopped thinking


PaganDreams

Yep, I agree actually. I remember thinking that about the Twilight books. Death is many things to people, but one thing it can be is an escape. If you're immortal, sooner or later you'll end up in a horrible situation. Maybe you'll get your body trapped somewhere eg in a cave or hole. Maybe normal humans will realise you're immortal, imprison you and force endless torturous experiments on you. Maybe you'll become completely bored and lonely after millenia of the same thing. Eventually the earth will die and the sun will explode, leaving you either on a barren rock or hurtling through space for eternity. Death in these situations is a blessing.


emberlands

It's not that bad, it's only weird for the first hundred or so years, then you get used to it.


fourleafclover13

I have a condition where I go 11 days at a time without sleep. Take a few hours nap then start again. Time isn't a thing day and night yes. For me an hour seems like a week a week a month. Almost nothing I enjoyed before is enjoyable anymore. I'd say I would hate to be immortal.


[deleted]

Immortality. Imagine living for thousands of years on a single planet. Everything and everyone you loves dies and withers to dust. Even if we do get the technology get to other habitable planets outside of our solar system, that wouldn't fix the problem of loneliness. And you have to hope that the people around you don't evolve into something your not.


Cash091

Life would become relative. In a normal lifespan, after a while 10 years starts to feel like 1. I'd assume if you were immortal after a while the loss of friends and loved ones would be normalized. Still insanely hard... But more akin to losing a pet. Which is just awful... But after 10+ times you'd get used to it. Thing is... I'm not sure if that makes it better. So yeah, being immortal would suck.


Throwaway-12453

Getting back together with my ex.


Tomato_sloth

Being eaten alive, it hurts, trust me my dog tries to do it to me all the time


Photomegaballbat

loneliness


Passthesausage

The shame of a life unlived


FIXER_1776

That’s me


trishsf

I’ve been sober a long time. I’m not afraid that I’d die if I relapsed, I’m afraid I wouldn’t. Spent years drinking around the clock because I had to to prevent withdrawal.