KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,692
Then what is the point of trudging on?
Health, love, contentment, passion, aspiration, learning skills, refining a craft, creativity, companionship, and curiosity are all core tenants of what makes life worth living, I believe.
There are people who exist with no love, yet their health remains intact. Likewise, a man can experience great love, whilst being in horrible health. If you have some of these motivations for living, it becomes easier to cope with the absence of the other keystones.
When you've lost all of these, it's hard to see a justification for continuing on with life. Often times, I am told my suffering isn't valid because I'm young, and there's a slim chance things may improve in a decade or so, when I've reached my 30s.
I've had to sit here and watch so many prospects be pissed away due to my illnesses and my lack of proper childrearing and familial support. While other people my age are out making memories, settling with partners or engaging in fun hookups, traveling, playing sport, chasing a dream career, I spent most of my time running on empty as a consequence of incurable diseases.
It really is no way to live. If I had a family that loved and cared for me, perhaps I could carry on, but proper support is seen as a frivolous accessory unless you've deterioriated towards the point of being trapped in a bed full of piss or reaching destitution levels of starvation, a scenario in which an institution will be held culpable for abandonment.
Like most people, I had dreams, but they were crushed as soon as I became sick and realized the world has 0 pity for people with invisible or misunderstood conditions. Today, in fact, some regular bloke was mouthing off on BBC Ulster radio about how CFS is a yuppie flu, basically treating it like a nothingburger made up delusion invented by "le heckin lazy milleneals who don't wanna work xx"
Every day of my life, I have to watch the authorities (who dictate the rules and influence public opinion) spit in the face of real world data and pretend illnesses like mine don't exist. I have to keep fumbling on with education despite massive gaps in my attendance and clear failures on my end to keep up with a schedule. I have to accept the reality that eventually I won't be invited to any social events because my health has lead to me having to say no one too many times. I have to wear the mask of a functioning member of society who isn't visibly ill, to not lose my livelihood.
When you are sick, infirm, and emfeebled in any way, life is not kind to you. While it would be nice if there was tangible support for those in my position, that's wistful thinking. I don't see anyone campaigning for systemic reform outside of this outlet, all anyone does is say we need better access to mental health services and people won't be suicidal anymore, regardless of whether or not your issue stems from a mental illness or not.
Every year, benefits are cut for those who rely on them, therapy is purported as a viable alternative to socialisation, and "mental health" charities rake in immense donations and profits which go towards newsletter bulletins, useless apps, and mindfulness social media posts. Newsflash, no amount of "cheer up" rhetoric is going to make my life worth living.
Until you have spend your late teens and your early 20s having to watch everything you love slip away, unable to be an active participant in the world, you can't understand it. Yet, every resource out there on the clearnet proclaims with utmost certainty that you must have something that makes life worth living, otherwide you're mentally ill.
Having no family, hardly any friends, no societal incumbent dedicated towards me not starving or ending up homeless as a consequence of my impairments, no talents, no future, a body that's been busted all to smithereens by the wear and tear of scuffed genetics, years of abuse, neglect, and the good old nit and grit hard work ethic that optimists love to praise so much - yes, there is so much to live for in these conditions!
Learning new things, having a goal to achieve, or finding people to enjoy things with- as simplistic as these desires are- were my reasons for existing. I have always been very passionate about science, and even when I had to drop out of university the first time, I didn't give up pursuing that path. Little did I realize that reality is far from the sophistication of high earnings, sleek, high tech facilities, and a culture of genuine curiosity that the media portrays this sector as.
Not to mention, many of the things I study are chilling and heartbreaking. The knowledge feels like a forbidden fruit, much like consciousness and self awareness is, at it's very core, something that should be off limits to the confines of the human mind. What I have learned, in my studies of the brain, is that there is a vast array of health conditions, malignancies, and disorders that are simply incurable as they have resulted from permanent damage and misfiring of the nervous system's immune cell functioning. At most, perhaps we will see preventative measures, but if you have a neuronal affliction in this day and age, you might as well be a medieval peasant suffering from a bacterial infection in an era where the advent of antibiotics couldn't even be conceived.
People like me, dont cut it in science. However, I have invested everything into getting a degree, as my body could not handle hard labor any longer. I didn't realize that PhD candidates are forced to live on poverty level stipends, and work themselves down to the bone, for no recognition, no reward, and no respite from the publish or perish culture. Yesterday, I was told by a gleeful staff member that the future is so exciting for all of the students in my cohort. Sure, she had to do unpaid lab labour for months upon months while working another job, but it was worth it in the end to become an academic.
A person like me, who struggles to get out of bed, who suffers daily from constipation and pain, whose brainfog places stopgaps on socialising, mingling, and engaging in constant activity.. simply cannot survive in this cutthroat environment. Did you know, I had to send over 50 email enquiries just to get ONE professor to sponsor me to even apply for a job? Not selected for the position mind you, simply for the privledge of moving onto the application stage.
I can't even keep up with a low intensity part time job. How will I ever work at the pace of your average person? Yet, the powers that be demand it. I'm not allowed to die, but I'm not allowed to slip up and fail to produce labour for a world that's squeezed me dry. Perhaps all of this could be worth it, if it were true what my tutor and others said about university being a magical time where one forms lasting friendships and has barrels of fun.
Every day I have to live with the knowledge that life is slipping away from me and I cant engage with things that give life meaning and purpose. I'm not going to parties, traveling multiple times a year, making friends, learning skills, and having a life worth living. Seeing photos of people my age out with their friends, sight seeing, having chill nights out, making conversations, hurts and burns me to the core in such a visceral way that I cannot articulate.
I seriously don't know how people can say to me in good faith that it will get better when it is a fsct intrinsic to biology that one's health only declined with age. With time, my autistic traits have also become more pronounced which has lead to further ostracisation because autistic adults might as well be cannon fodder in the eyes of "healthcare heroes" who stop giving a damn the day after a child turns 18.
Health, love, contentment, passion, aspiration, learning skills, refining a craft, creativity, companionship, and curiosity are all core tenants of what makes life worth living, I believe.
There are people who exist with no love, yet their health remains intact. Likewise, a man can experience great love, whilst being in horrible health. If you have some of these motivations for living, it becomes easier to cope with the absence of the other keystones.
When you've lost all of these, it's hard to see a justification for continuing on with life. Often times, I am told my suffering isn't valid because I'm young, and there's a slim chance things may improve in a decade or so, when I've reached my 30s.
I've had to sit here and watch so many prospects be pissed away due to my illnesses and my lack of proper childrearing and familial support. While other people my age are out making memories, settling with partners or engaging in fun hookups, traveling, playing sport, chasing a dream career, I spent most of my time running on empty as a consequence of incurable diseases.
It really is no way to live. If I had a family that loved and cared for me, perhaps I could carry on, but proper support is seen as a frivolous accessory unless you've deterioriated towards the point of being trapped in a bed full of piss or reaching destitution levels of starvation, a scenario in which an institution will be held culpable for abandonment.
Like most people, I had dreams, but they were crushed as soon as I became sick and realized the world has 0 pity for people with invisible or misunderstood conditions. Today, in fact, some regular bloke was mouthing off on BBC Ulster radio about how CFS is a yuppie flu, basically treating it like a nothingburger made up delusion invented by "le heckin lazy milleneals who don't wanna work xx"
Every day of my life, I have to watch the authorities (who dictate the rules and influence public opinion) spit in the face of real world data and pretend illnesses like mine don't exist. I have to keep fumbling on with education despite massive gaps in my attendance and clear failures on my end to keep up with a schedule. I have to accept the reality that eventually I won't be invited to any social events because my health has lead to me having to say no one too many times. I have to wear the mask of a functioning member of society who isn't visibly ill, to not lose my livelihood.
When you are sick, infirm, and emfeebled in any way, life is not kind to you. While it would be nice if there was tangible support for those in my position, that's wistful thinking. I don't see anyone campaigning for systemic reform outside of this outlet, all anyone does is say we need better access to mental health services and people won't be suicidal anymore, regardless of whether or not your issue stems from a mental illness or not.
Every year, benefits are cut for those who rely on them, therapy is purported as a viable alternative to socialisation, and "mental health" charities rake in immense donations and profits which go towards newsletter bulletins, useless apps, and mindfulness social media posts. Newsflash, no amount of "cheer up" rhetoric is going to make my life worth living.
Until you have spend your late teens and your early 20s having to watch everything you love slip away, unable to be an active participant in the world, you can't understand it. Yet, every resource out there on the clearnet proclaims with utmost certainty that you must have something that makes life worth living, otherwide you're mentally ill.
Having no family, hardly any friends, no societal incumbent dedicated towards me not starving or ending up homeless as a consequence of my impairments, no talents, no future, a body that's been busted all to smithereens by the wear and tear of scuffed genetics, years of abuse, neglect, and the good old nit and grit hard work ethic that optimists love to praise so much - yes, there is so much to live for in these conditions!
Learning new things, having a goal to achieve, or finding people to enjoy things with- as simplistic as these desires are- were my reasons for existing. I have always been very passionate about science, and even when I had to drop out of university the first time, I didn't give up pursuing that path. Little did I realize that reality is far from the sophistication of high earnings, sleek, high tech facilities, and a culture of genuine curiosity that the media portrays this sector as.
Not to mention, many of the things I study are chilling and heartbreaking. The knowledge feels like a forbidden fruit, much like consciousness and self awareness is, at it's very core, something that should be off limits to the confines of the human mind. What I have learned, in my studies of the brain, is that there is a vast array of health conditions, malignancies, and disorders that are simply incurable as they have resulted from permanent damage and misfiring of the nervous system's immune cell functioning. At most, perhaps we will see preventative measures, but if you have a neuronal affliction in this day and age, you might as well be a medieval peasant suffering from a bacterial infection in an era where the advent of antibiotics couldn't even be conceived.
People like me, dont cut it in science. However, I have invested everything into getting a degree, as my body could not handle hard labor any longer. I didn't realize that PhD candidates are forced to live on poverty level stipends, and work themselves down to the bone, for no recognition, no reward, and no respite from the publish or perish culture. Yesterday, I was told by a gleeful staff member that the future is so exciting for all of the students in my cohort. Sure, she had to do unpaid lab labour for months upon months while working another job, but it was worth it in the end to become an academic.
A person like me, who struggles to get out of bed, who suffers daily from constipation and pain, whose brainfog places stopgaps on socialising, mingling, and engaging in constant activity.. simply cannot survive in this cutthroat environment. Did you know, I had to send over 50 email enquiries just to get ONE professor to sponsor me to even apply for a job? Not selected for the position mind you, simply for the privledge of moving onto the application stage.
I can't even keep up with a low intensity part time job. How will I ever work at the pace of your average person? Yet, the powers that be demand it. I'm not allowed to die, but I'm not allowed to slip up and fail to produce labour for a world that's squeezed me dry. Perhaps all of this could be worth it, if it were true what my tutor and others said about university being a magical time where one forms lasting friendships and has barrels of fun.
Every day I have to live with the knowledge that life is slipping away from me and I cant engage with things that give life meaning and purpose. I'm not going to parties, traveling multiple times a year, making friends, learning skills, and having a life worth living. Seeing photos of people my age out with their friends, sight seeing, having chill nights out, making conversations, hurts and burns me to the core in such a visceral way that I cannot articulate.
I seriously don't know how people can say to me in good faith that it will get better when it is a fsct intrinsic to biology that one's health only declined with age. With time, my autistic traits have also become more pronounced which has lead to further ostracisation because autistic adults might as well be cannon fodder in the eyes of "healthcare heroes" who stop giving a damn the day after a child turns 18.
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