Scary unmentionables that I'm goign to mention
It's scary when systems that you depended on change in unfavorable ways, or fall away all together.
It's scary when you reach the limits of all medical systems and know that if crisis happens, you can predict which ineffective interventions will automatically come into play. It's scary to know that if you want a potential cure, that the research is 100% on you to find it, with the knowledge that it may not even be out there. It's scary to have the belief in modern medical systems (conventional, alternative, all of it) as being cutting edge and effective be torn down, and replaced with the experience that your illness makes you no different than someone suffering intractably 200 years ago. No cure means no cure and it can strike anyone in a timeless way. Life is fragile and precious. We're not immortal. We're not invulerable. And when things go wrong, sometimes even the most hopeful modalities are beyond helping.
It's scary when your body betrays you and stops making sense, and there's nothing you can do to rectify the situation. You pour all your privileged intellect, intuition and confidence into thousands of hours of research, experiments, consulting experts and fellow experiencers online, and still you are lying here in bed unable to get up and do what needs to be done.
It's scary when people leave you for various reasons. They stick with you for as long as they can, but then you naturally change apart. People have to change together or it doesn't work, and when you're disabled you start to change at a different rate than everyone else. In some ways, you make zero progress for a long time. It's scary to really see in real-time that people always choose themselves, eventually. They have to.
It's scary to come to terms with the fact that a lot of the people in your life were friends with you, for themselves. When you can no longer provide them with that they were taking from the friendship, they fall away. It's a very helpless feeling because you can't control your circumstances or improve situations in order to nourish the friendships back to life. You wonder if maybe it's "good riddance" because they were probably using you anyway, which tarnishes your memory of the entire friendship. It feels dishonourable, and it's all happening because you're sick.
It's scary to hit the wall of adulthood where ultimately you have to make it or break it on your own; it's difficult to see, in technicolour, that your biggest supports and most devoted love ones won't be able to do it forever. Everything comes to an end, and what happens to you when that end comes? Who will take care of you? How will you take care of yourself? The scarcity principle is really scary when your ability to act is limited. It makes the world seem less friendly, more competitive, more harsh. It's not a reality you want to take on but you are slammed with it regularly. It's hard to believe in something different than what's constantly happening right in front of you. You struggle with every ounce of your being to not give into total despair, and to not frame the world as an evil, materially driven place that doesn't care about whether you live or die. It's scary to come face to face with your society's true capacity for charity; sometimes it really inspires you, and other times it jades you about all the supposed virtue that people have within them. A lot of people really don't treat others the way they want to be treated. A lot of the goodness that is espoused by prominent people is surface level only. You begin to notice the difference between words and actions, because actions can mean the difference between sustenance or deprivation. You don't take note in order to keep score, but because it has become a simple reality. When something doesn't deliver as promised, your hardship increases. You realize that the able-bodied privilege you had before permitted you to ignore a lot of the false promises people have made to you because you were able to absorb the damage or pick up the slack. The benefit is that it shows you who is real and who isn't. The downside is that it shows you who is real and who isn't.
It's scary to entertain the thought that this is it. This is as good as it gets. All the hopes and dreams you had when you were younger have plateaued. Not everyone gets what they want, you tell yourself. You lull yourself into a reticent acceptance of circumstances, one that has somewhat of a calming effect but is also potentially dangerous in its stagnating effects. Do you keep hoping or is hope a frivolity, you wonder?
It's scary to witness your own degeneration, despite your efforts. In the beginning, there is always a level of denial because you have youth and strength remaining in reserves. Then your hair starts falling out, or you start losing a lot of weight (or gaining it), or you don't look as good anymore. And it happens rapidly. You are forced to accept a sort of giving up on all the things that mark you as a healthy participant in the world. You don't want to be seen, yet you feel lonely. It was hard enough to stand in your power and feel worthy as a human being before the health drama started, and now it's even more challenging.
It's scary to start comparing yourself to everyone in your peer group, and what everyone "your age is doing", especially because you mostly no longer run with them. It's true that we can never know a person's true story and inner world just by looking at them. It's true that everyone has hardships. But you know, deep down, that it goes beyond those platitudes. They are able bodied, they can openly pursue freedom and happiness even if it brings challenges to them. Their bodies have not betrayed them or held them back. They are not imprisoned by health circumstances. You realize that, if you have your health, you have everything. Being able bodied means that a person is just that much more able to find open doors in life. It's not like all doors are closed to the disabled, but the limitations become stark realities.
It's REALLY scary on your worst days, when there is no one to call on. When you are so weak or bed ridden yet there is no food in the house, so you have to somehow muster strength from the deepest recesses of your being to get that much needed food. Or you really need to get to that critical doctor's appointment, but you aren't even sure if you are well enough to leave the house. Or you're in mental crisis about everything that's weighing you down, and you have only yourself to guide you out of that black box. It's scary to have to trade in a life of independence for a more dependent one, especially when that help may or may not be there on any given day. It's scary to know that help often relates to if you're rich or poor, are introverted or extroverted, and how well you were able to foster community prior to unwellness. Without community, dependence is imprisonment. It's also scary to know that whether or not services are available to you depends on the ruling philosophy of the day, like if someone gets put in charge who thinks helping the disabled is worth it vs. seeing the disabled and poor as a drain on the system of "productive people". It is scary to see these philosophies combat openly, with equal entitlement, even if there is ignorance and privilege in the mix.
It is REALLY scary to come face to face with something that a lot of people don't know, which is that in many cases, the difference between inner peace and terror, wellness and crisis, access or denial, opportunity or desolation, is: money. People who act like money isn't a major thing, have usually never been in this situation. You begin to see the world as a place that is divided into haves and have nots, and that nothing out there really takes stock of your virtue, your good qualities, your willingness to be of service and do really good in the world -- if only you had some supports.
It's REALLY scary when your friends and people turn on you by blaming you for your circumstances, calling you a victim, calling you evil or ridden with "bad karma", and any number of harmful anecdotes they employ in order to feel better about the horrors they've witnessed in your life. It is scary to become a pariah simply because you can't be the perfect sick person that everyone sees on TV -- the person who is going through hell but somehow manages to keep a smile, be interactive, and never really has meltdowns or shadowy feelings come up. Even though it can't logically be true, you somehow feel like it's your fault for being sick, that you must of done something wrong somewhere along the line to deserve it. That maybe... deep down... you are a bad person and you had this coming.
It's scary when there is seemingly so much misfortune that your life becomes about trauma avoidance. Every action, every choice, every offering is questioned with intense scutiny because you don't feel safe enough to trust yourself to minimize harm. That good things are really two-faced evils waiting to drop the other shoe. That maybe your friends were right, that you are evil, and that you expect to be slammed by bad things because of it.
It's scary when you reach the limits of all medical systems and know that if crisis happens, you can predict which ineffective interventions will automatically come into play. It's scary to know that if you want a potential cure, that the research is 100% on you to find it, with the knowledge that it may not even be out there. It's scary to have the belief in modern medical systems (conventional, alternative, all of it) as being cutting edge and effective be torn down, and replaced with the experience that your illness makes you no different than someone suffering intractably 200 years ago. No cure means no cure and it can strike anyone in a timeless way. Life is fragile and precious. We're not immortal. We're not invulerable. And when things go wrong, sometimes even the most hopeful modalities are beyond helping.
It's scary when your body betrays you and stops making sense, and there's nothing you can do to rectify the situation. You pour all your privileged intellect, intuition and confidence into thousands of hours of research, experiments, consulting experts and fellow experiencers online, and still you are lying here in bed unable to get up and do what needs to be done.
It's scary when people leave you for various reasons. They stick with you for as long as they can, but then you naturally change apart. People have to change together or it doesn't work, and when you're disabled you start to change at a different rate than everyone else. In some ways, you make zero progress for a long time. It's scary to really see in real-time that people always choose themselves, eventually. They have to.
It's scary to come to terms with the fact that a lot of the people in your life were friends with you, for themselves. When you can no longer provide them with that they were taking from the friendship, they fall away. It's a very helpless feeling because you can't control your circumstances or improve situations in order to nourish the friendships back to life. You wonder if maybe it's "good riddance" because they were probably using you anyway, which tarnishes your memory of the entire friendship. It feels dishonourable, and it's all happening because you're sick.
It's scary to hit the wall of adulthood where ultimately you have to make it or break it on your own; it's difficult to see, in technicolour, that your biggest supports and most devoted love ones won't be able to do it forever. Everything comes to an end, and what happens to you when that end comes? Who will take care of you? How will you take care of yourself? The scarcity principle is really scary when your ability to act is limited. It makes the world seem less friendly, more competitive, more harsh. It's not a reality you want to take on but you are slammed with it regularly. It's hard to believe in something different than what's constantly happening right in front of you. You struggle with every ounce of your being to not give into total despair, and to not frame the world as an evil, materially driven place that doesn't care about whether you live or die. It's scary to come face to face with your society's true capacity for charity; sometimes it really inspires you, and other times it jades you about all the supposed virtue that people have within them. A lot of people really don't treat others the way they want to be treated. A lot of the goodness that is espoused by prominent people is surface level only. You begin to notice the difference between words and actions, because actions can mean the difference between sustenance or deprivation. You don't take note in order to keep score, but because it has become a simple reality. When something doesn't deliver as promised, your hardship increases. You realize that the able-bodied privilege you had before permitted you to ignore a lot of the false promises people have made to you because you were able to absorb the damage or pick up the slack. The benefit is that it shows you who is real and who isn't. The downside is that it shows you who is real and who isn't.
It's scary to entertain the thought that this is it. This is as good as it gets. All the hopes and dreams you had when you were younger have plateaued. Not everyone gets what they want, you tell yourself. You lull yourself into a reticent acceptance of circumstances, one that has somewhat of a calming effect but is also potentially dangerous in its stagnating effects. Do you keep hoping or is hope a frivolity, you wonder?
It's scary to witness your own degeneration, despite your efforts. In the beginning, there is always a level of denial because you have youth and strength remaining in reserves. Then your hair starts falling out, or you start losing a lot of weight (or gaining it), or you don't look as good anymore. And it happens rapidly. You are forced to accept a sort of giving up on all the things that mark you as a healthy participant in the world. You don't want to be seen, yet you feel lonely. It was hard enough to stand in your power and feel worthy as a human being before the health drama started, and now it's even more challenging.
It's scary to start comparing yourself to everyone in your peer group, and what everyone "your age is doing", especially because you mostly no longer run with them. It's true that we can never know a person's true story and inner world just by looking at them. It's true that everyone has hardships. But you know, deep down, that it goes beyond those platitudes. They are able bodied, they can openly pursue freedom and happiness even if it brings challenges to them. Their bodies have not betrayed them or held them back. They are not imprisoned by health circumstances. You realize that, if you have your health, you have everything. Being able bodied means that a person is just that much more able to find open doors in life. It's not like all doors are closed to the disabled, but the limitations become stark realities.
It's REALLY scary on your worst days, when there is no one to call on. When you are so weak or bed ridden yet there is no food in the house, so you have to somehow muster strength from the deepest recesses of your being to get that much needed food. Or you really need to get to that critical doctor's appointment, but you aren't even sure if you are well enough to leave the house. Or you're in mental crisis about everything that's weighing you down, and you have only yourself to guide you out of that black box. It's scary to have to trade in a life of independence for a more dependent one, especially when that help may or may not be there on any given day. It's scary to know that help often relates to if you're rich or poor, are introverted or extroverted, and how well you were able to foster community prior to unwellness. Without community, dependence is imprisonment. It's also scary to know that whether or not services are available to you depends on the ruling philosophy of the day, like if someone gets put in charge who thinks helping the disabled is worth it vs. seeing the disabled and poor as a drain on the system of "productive people". It is scary to see these philosophies combat openly, with equal entitlement, even if there is ignorance and privilege in the mix.
It is REALLY scary to come face to face with something that a lot of people don't know, which is that in many cases, the difference between inner peace and terror, wellness and crisis, access or denial, opportunity or desolation, is: money. People who act like money isn't a major thing, have usually never been in this situation. You begin to see the world as a place that is divided into haves and have nots, and that nothing out there really takes stock of your virtue, your good qualities, your willingness to be of service and do really good in the world -- if only you had some supports.
It's REALLY scary when your friends and people turn on you by blaming you for your circumstances, calling you a victim, calling you evil or ridden with "bad karma", and any number of harmful anecdotes they employ in order to feel better about the horrors they've witnessed in your life. It is scary to become a pariah simply because you can't be the perfect sick person that everyone sees on TV -- the person who is going through hell but somehow manages to keep a smile, be interactive, and never really has meltdowns or shadowy feelings come up. Even though it can't logically be true, you somehow feel like it's your fault for being sick, that you must of done something wrong somewhere along the line to deserve it. That maybe... deep down... you are a bad person and you had this coming.
It's scary when there is seemingly so much misfortune that your life becomes about trauma avoidance. Every action, every choice, every offering is questioned with intense scutiny because you don't feel safe enough to trust yourself to minimize harm. That good things are really two-faced evils waiting to drop the other shoe. That maybe your friends were right, that you are evil, and that you expect to be slammed by bad things because of it.