KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,803
The cruelty of forcing someone with an incurable illness to survive is sickening. It defies all reason and rhyme. At least, I understand those who admit their reasoning is selfish, their rationale being that they do not want to lose a close confidant to suicide.
I do not think that most people grasp the fact that I will always be forced to live half a life. There will be no dream career, no aspirations, no house full of children smiling and running about (disabled individuals are barred from adoption), no fairy tale wedding, no stability, no wanderlust and travels across the world, no adventures, and no fulfillment.
Many of the experiences that people will reflect upon when they make a judgement about how life is worthwhile for them are things that have already passed me by. As a teenager, I was never invited to a party, nor a sleepover, unless it was a co-worker who wanted something from me. I never got to experience the excitement of having a school girl crush, because when I fancied an older boy, he molested me. I never got to go on a date, until I was being groomed by older men.
I never got play sports, participate in activities, or form bonds with others at school. I had no date to my prom and had to hide in the toilet, because the strobe lights and noise were causing me sensory overload. I never experienced praise for my achievements, as there was no one to care, and my teachers thought I was lazy for missing so many school days due to illness.
I will never know the love of a mother and father. When I walk down the streets and see loving couples pushing along prams, it breaks me inside just a little bit more, knowing that my mum and dad couldn't even be arsed to give the most basic of care to their child.
If my father hadn't dabbled in drugs and alcohol, he wouldn't have died early in my childhood. If my mother hadn't participated in experimental treatments during pregnancy, as well as ECT, maybe she would have felt a modicum of love towards me, instead of dumping me onto my grandparents.
Of course, the bloomer optimists will tell you that you can overcome anything and make the most out of adult life, no matter how harrowing your childhood was. I used to think the same way until I was crippled by disease. All of the distractions and "self-improvements" are a moot point if you physically can't engage in them.
I have tried to live. I have tried to make investments that would enrich my life time and time again, only to be met with no results and extraordinary amounts of hardship. Life simply refuses to be magnanimous towards me in a tangible way.
Like many of you, I have tried to hold out because there are people whom I love and cherish. Writing my notes has been one of the most difficult parts of this process, because there is so much I want to say to them, yet very little I can actually articulate. I truly want people to understand what I am going through, as I hope that will lessen the impact of my death.
However, it seems like no one wants to let me go. They can't accept it. Even the people who understand my suffering the most still have blinders on and beg me not to go, insisting that there is a modicum of hope left.
The reality is that I very rarely have good days, much less bearable ones. I have to take codeine to be able to go outside for long periods of time. This is difficult because I have to ration the pills currently in my possession, not only to avoid addiction, but because I cannot get them prescribed. Gotta love NICE guidelines.
Everything causes me pain. Once you've been in pain a long time, getting new aches and annoyances feels like the revenge of some eldritch god. I hate it so much. My partner's grandmother told me once that all you can do is cope and live with it, you have no other choice. Well, I don't want to cope with it anymore. Why am I not allowed that option?
I've done most of the things that I wanted to. Well, at least the things I happen to be able to do within my severely limited capacity. I got to see my best friend in the whole wide world in real life, after years of yearning for that meeting. That encounter was a double edged sword though. I realised I truly love this man, but there is absolutely no way we can be together due to my circumstances.
Forming those memories was both a blessing and a curse. No one knows how much it gnaws and tears at me that I had to do this in secret. Yet it was something that was very important to me, an experience that I believed to be essential in my codex of memories, if I am going to pass on soon. I will never forget how nice it felt to actually be loved unconditionally for the first time in my life.
It breaks my heart that we can't see each other again. My best friend said to me, if there ever comes a day when I can no longer walk, he would carry me. He said he believes in me no matter what. While these sentiments are sweet and endearing, no doubt meant to instill in me assurance and hope, I simply cannot hold out any longer. There is no way for me to magically escape and claw my way out of the hell I've found myself in.
My mind and body will never be healed. I seriously doubt there will be any cures or treatments for CFS within the next few years, decades, or even my entire lifespan. Even if there was a panacea or miracle cure, by that point it would be too late. I can never forget the hell I have endured the past few years.
I have watched my cognitive abilities wane. I have watched my once sharp mind melt into a plume of smoke, an endless maze of fog that resembles the mise en scene of silent hill more than a functioning human brain. I have watched my legs grow weak, always searing with burning aches and pains. I have watched my digestive system fail itself every single day. I am only in my very early twenties, so the worst is yet to come.
With all this in mind, I can't understand why they won't let me go. Can't they see how horrible this disease is and the havoc it's wrecking on my psyche and body? Can't they feel the raw, visceral suffering I am experiencing everyday from the amalgamation of chronic illnesses?
I know its going to hurt other people when I am gone. However, does no one contemplate the hurt I am going through? It breaks my heart that I have ended up crippled and reliant on others. I ended up falling in love with my boyfriend and my best friend at the same time, and the amount of guilt that is causing me is insane.
I wish I had the freedom to make my own decisions, but I don't. When you can't work and you can't get government benefits, what choice do you have? Starve and be homeless, or let others make decisions for you. Pick your poison.
I love my boyfriend. I used to think I would spend the rest of my life with him. But he hates the way I am, and I hate the way I am too. You can tell he is resentful of having to deal with a sick partner, a partner who will never fulfill his nor his family and greater society's expectations.
He hates that I'm suicidal. He says I can't understand how exhausting it is to put up with a person like me. He thinks suicide is always a product of some brand of mental illness, and that there's something seriously wrong with you to contemplate it. I think he deserves better. We aren't meant to be together and are only causing each other more stress and pain out of obligation.
My best friend does not hate me for being maimed by life, for being sick and disabled. Nor does he think I am irrational and insane for wanting to ctb. He understands, but doesn't let me go. We can't be together because of fucking beurocracy and money. Otherwise we would have ran away together a long time ago. I love him to death, and he begs me so hard to stick around because our feelings are mutual, but there's no way I can hold out much longer.
I cry and cry because I want to be somewhere safe, stable, and secure. A place where I never have to worry about being a burden. Sadly, I have to kill myself instead, because fate has other plans in store for me. I've applied to over 50 jobs and internships, no where will hire me. When I do get my degree, it will be impossible for me to find employment as I cannot work full time. Nearly every position wants full time employees, not part time disabled temp workers who can't hit max productivity.
I've tried to switch universities and have so far been unsuccessful. I seriously do not think I will be able to pass my degree despite getting high marks this year, because I cannot handle in person practicals and exams due to CFS melting my brain.
There really is no way out of this situation. So many people have acknowledged that I am trapped in an unwinnable situation, but then tell me to hang in there and don't lose hope. Really? Would you honestly believe that yourself, if you were standing in my shoes?
I am lucky to have a sparse amount of lovely friends in my circle. No matter how hard I try though, I am never going to fully mesh with normal people like them.
It's like they are in a completely different universe than I am, a galaxy where internship applications, hook-ups, grades, nights out, family events, and parties surround their orbit rather than thoughts about how you're going to survive in the future with no income and a busted up body.
They aren't ever going to understand my urge for ctb and the full extent of my suffering, but that's okay. Empathy comes from experience, and no one should have to experience this.
I just wish they'd give me their blessings to go. Please, let me rest. I beg of you.
I do not think that most people grasp the fact that I will always be forced to live half a life. There will be no dream career, no aspirations, no house full of children smiling and running about (disabled individuals are barred from adoption), no fairy tale wedding, no stability, no wanderlust and travels across the world, no adventures, and no fulfillment.
Many of the experiences that people will reflect upon when they make a judgement about how life is worthwhile for them are things that have already passed me by. As a teenager, I was never invited to a party, nor a sleepover, unless it was a co-worker who wanted something from me. I never got to experience the excitement of having a school girl crush, because when I fancied an older boy, he molested me. I never got to go on a date, until I was being groomed by older men.
I never got play sports, participate in activities, or form bonds with others at school. I had no date to my prom and had to hide in the toilet, because the strobe lights and noise were causing me sensory overload. I never experienced praise for my achievements, as there was no one to care, and my teachers thought I was lazy for missing so many school days due to illness.
I will never know the love of a mother and father. When I walk down the streets and see loving couples pushing along prams, it breaks me inside just a little bit more, knowing that my mum and dad couldn't even be arsed to give the most basic of care to their child.
If my father hadn't dabbled in drugs and alcohol, he wouldn't have died early in my childhood. If my mother hadn't participated in experimental treatments during pregnancy, as well as ECT, maybe she would have felt a modicum of love towards me, instead of dumping me onto my grandparents.
Of course, the bloomer optimists will tell you that you can overcome anything and make the most out of adult life, no matter how harrowing your childhood was. I used to think the same way until I was crippled by disease. All of the distractions and "self-improvements" are a moot point if you physically can't engage in them.
I have tried to live. I have tried to make investments that would enrich my life time and time again, only to be met with no results and extraordinary amounts of hardship. Life simply refuses to be magnanimous towards me in a tangible way.
Like many of you, I have tried to hold out because there are people whom I love and cherish. Writing my notes has been one of the most difficult parts of this process, because there is so much I want to say to them, yet very little I can actually articulate. I truly want people to understand what I am going through, as I hope that will lessen the impact of my death.
However, it seems like no one wants to let me go. They can't accept it. Even the people who understand my suffering the most still have blinders on and beg me not to go, insisting that there is a modicum of hope left.
The reality is that I very rarely have good days, much less bearable ones. I have to take codeine to be able to go outside for long periods of time. This is difficult because I have to ration the pills currently in my possession, not only to avoid addiction, but because I cannot get them prescribed. Gotta love NICE guidelines.
Everything causes me pain. Once you've been in pain a long time, getting new aches and annoyances feels like the revenge of some eldritch god. I hate it so much. My partner's grandmother told me once that all you can do is cope and live with it, you have no other choice. Well, I don't want to cope with it anymore. Why am I not allowed that option?
I've done most of the things that I wanted to. Well, at least the things I happen to be able to do within my severely limited capacity. I got to see my best friend in the whole wide world in real life, after years of yearning for that meeting. That encounter was a double edged sword though. I realised I truly love this man, but there is absolutely no way we can be together due to my circumstances.
Forming those memories was both a blessing and a curse. No one knows how much it gnaws and tears at me that I had to do this in secret. Yet it was something that was very important to me, an experience that I believed to be essential in my codex of memories, if I am going to pass on soon. I will never forget how nice it felt to actually be loved unconditionally for the first time in my life.
It breaks my heart that we can't see each other again. My best friend said to me, if there ever comes a day when I can no longer walk, he would carry me. He said he believes in me no matter what. While these sentiments are sweet and endearing, no doubt meant to instill in me assurance and hope, I simply cannot hold out any longer. There is no way for me to magically escape and claw my way out of the hell I've found myself in.
My mind and body will never be healed. I seriously doubt there will be any cures or treatments for CFS within the next few years, decades, or even my entire lifespan. Even if there was a panacea or miracle cure, by that point it would be too late. I can never forget the hell I have endured the past few years.
I have watched my cognitive abilities wane. I have watched my once sharp mind melt into a plume of smoke, an endless maze of fog that resembles the mise en scene of silent hill more than a functioning human brain. I have watched my legs grow weak, always searing with burning aches and pains. I have watched my digestive system fail itself every single day. I am only in my very early twenties, so the worst is yet to come.
With all this in mind, I can't understand why they won't let me go. Can't they see how horrible this disease is and the havoc it's wrecking on my psyche and body? Can't they feel the raw, visceral suffering I am experiencing everyday from the amalgamation of chronic illnesses?
I know its going to hurt other people when I am gone. However, does no one contemplate the hurt I am going through? It breaks my heart that I have ended up crippled and reliant on others. I ended up falling in love with my boyfriend and my best friend at the same time, and the amount of guilt that is causing me is insane.
I wish I had the freedom to make my own decisions, but I don't. When you can't work and you can't get government benefits, what choice do you have? Starve and be homeless, or let others make decisions for you. Pick your poison.
I love my boyfriend. I used to think I would spend the rest of my life with him. But he hates the way I am, and I hate the way I am too. You can tell he is resentful of having to deal with a sick partner, a partner who will never fulfill his nor his family and greater society's expectations.
He hates that I'm suicidal. He says I can't understand how exhausting it is to put up with a person like me. He thinks suicide is always a product of some brand of mental illness, and that there's something seriously wrong with you to contemplate it. I think he deserves better. We aren't meant to be together and are only causing each other more stress and pain out of obligation.
My best friend does not hate me for being maimed by life, for being sick and disabled. Nor does he think I am irrational and insane for wanting to ctb. He understands, but doesn't let me go. We can't be together because of fucking beurocracy and money. Otherwise we would have ran away together a long time ago. I love him to death, and he begs me so hard to stick around because our feelings are mutual, but there's no way I can hold out much longer.
I cry and cry because I want to be somewhere safe, stable, and secure. A place where I never have to worry about being a burden. Sadly, I have to kill myself instead, because fate has other plans in store for me. I've applied to over 50 jobs and internships, no where will hire me. When I do get my degree, it will be impossible for me to find employment as I cannot work full time. Nearly every position wants full time employees, not part time disabled temp workers who can't hit max productivity.
I've tried to switch universities and have so far been unsuccessful. I seriously do not think I will be able to pass my degree despite getting high marks this year, because I cannot handle in person practicals and exams due to CFS melting my brain.
There really is no way out of this situation. So many people have acknowledged that I am trapped in an unwinnable situation, but then tell me to hang in there and don't lose hope. Really? Would you honestly believe that yourself, if you were standing in my shoes?
I am lucky to have a sparse amount of lovely friends in my circle. No matter how hard I try though, I am never going to fully mesh with normal people like them.
It's like they are in a completely different universe than I am, a galaxy where internship applications, hook-ups, grades, nights out, family events, and parties surround their orbit rather than thoughts about how you're going to survive in the future with no income and a busted up body.
They aren't ever going to understand my urge for ctb and the full extent of my suffering, but that's okay. Empathy comes from experience, and no one should have to experience this.
I just wish they'd give me their blessings to go. Please, let me rest. I beg of you.
