I am over it. Now go away.
More teeth grinding. Oh, of course I should have ignored it. But I unfortunately have this pesky desire to explain how the brain and body connection works when people don't understand disabilities. The very sad part is that people will treat physical illness like mental illness.
You know, "Maybe if you just ate better and had a better attitude, you wouldn't need that insulin! You can cure diabetes yourself!" "You had a heart attack? Probably because you were stressed. Calm down. I bet it wasn't even real." "Hey, I heard that the best way to overcome cancer is to pretend it doesn't exist inside you! You should do that. And stop whining."
And of course, the ultimate disability insults, the phrases that make me see red, that enrage me to the point of Hulk Smash mentality:
"The only disability is a bad attitude!"
"The only limitations are the ones you set yourself!"
"You're not handicapped, you're handicapable!"
"If you truly believe there is nothing wrong with you, you will become enlightened. Disabilities just mean you're holding yourself back from life!"
"You're not disabled - you're differently abled. You can do anything and everything you want!"
And, you know, I get it. I do understand that there can be intense, extreme emotional and psychological connections to having multiple disabilities, whether invisible or visible or both. Some people do tend to let themselves get bogged down by the pain and weakness, the daily crushing symptoms that require new, different ways of moving through life. But you know what? Telling a disabled person that their illnesses really don't matter in the long run is stupid, insulting, horrific, and ugly. And yet that is what people do. I am quoting from actual emails and messages I have received, since I am a disability advocate. I've been targeted by people with childish mentalities who think it is funny and joking to mock me, call me names, and make fun of my multiple illnesses. I've watched it happen to friends, to the point where they needed to cut away from old friends whom they thought they trusted.
It hurts to be told that what is happening inside you is not real or can be easily fixed or is your imagination or is merely emotional stress. That really, really hurts. Even if you suggested that they step inside your head or body, it wouldn't matter to them; they wouldn't be in your mind, so why should they care? Even if they did become disabled, they probably wouldn't apologize to you.
I've deleted and destroyed most of the cruelest missives sent to me, because they don't need to be shared with my loved ones. But I remember them. And you know what I do? I look beyond them. I refuse to be affected. I rise above them and know I actually am more enlightened than them.
There are disabled people who do believe that they should be called different terms, that their disabilities do not affect them nor are part of them. That's wonderful for them. For me, though, when I wake up every morning in agony and go to sleep every night in agony, I know I am disabled. I know my disabilities are part of me. That's how I see it for myself. However, I still life a wonderful life, and that matters so much.
Living the best life I can is what truly matters. The fact that I have disabilities is just one of the facts of my life.
Edited to add:
Look, let other disabled people (oh, hang on, the PC term right now is "person with disabilities" because People Come First, I don't know) say that their disabilities don't make up who they are, don't define them, are not part of them. But for someone like me, who was born that way, who lived an entire life that way... I can't just wave my and and say, "Oh, pff, my disabilities are just things I life with; they're not part of me." Because, in a really technical sense, they are. Kind of like Borg nanotechnology, you know? Sure, I can heal and ease the symptoms, I can slow the progression, I can even remove, heal, and even partially cure a few of the syndromes. Like Seven Of Nine from Star Trek: Voyager. But like Seven, part of that stuff is still in me and I cannot ever get rid of it. If that makes me attached to my disabilities and handicaps, then fine. If that makes it seem as though I treat my illnesses as part of who I am, then I am guilty. I was born damaged enough to develop a dozen separate neurological and neuro-other disorders. I may be able to use various medicines, remedies, and treatments to deal with my conditions... but that doesn't mean that I can cure myself. That doesn't mean that everything will just go away or become separate from me.
End statement.
You know, "Maybe if you just ate better and had a better attitude, you wouldn't need that insulin! You can cure diabetes yourself!" "You had a heart attack? Probably because you were stressed. Calm down. I bet it wasn't even real." "Hey, I heard that the best way to overcome cancer is to pretend it doesn't exist inside you! You should do that. And stop whining."
And of course, the ultimate disability insults, the phrases that make me see red, that enrage me to the point of Hulk Smash mentality:
"The only disability is a bad attitude!"
"The only limitations are the ones you set yourself!"
"You're not handicapped, you're handicapable!"
"If you truly believe there is nothing wrong with you, you will become enlightened. Disabilities just mean you're holding yourself back from life!"
"You're not disabled - you're differently abled. You can do anything and everything you want!"
And, you know, I get it. I do understand that there can be intense, extreme emotional and psychological connections to having multiple disabilities, whether invisible or visible or both. Some people do tend to let themselves get bogged down by the pain and weakness, the daily crushing symptoms that require new, different ways of moving through life. But you know what? Telling a disabled person that their illnesses really don't matter in the long run is stupid, insulting, horrific, and ugly. And yet that is what people do. I am quoting from actual emails and messages I have received, since I am a disability advocate. I've been targeted by people with childish mentalities who think it is funny and joking to mock me, call me names, and make fun of my multiple illnesses. I've watched it happen to friends, to the point where they needed to cut away from old friends whom they thought they trusted.
It hurts to be told that what is happening inside you is not real or can be easily fixed or is your imagination or is merely emotional stress. That really, really hurts. Even if you suggested that they step inside your head or body, it wouldn't matter to them; they wouldn't be in your mind, so why should they care? Even if they did become disabled, they probably wouldn't apologize to you.
I've deleted and destroyed most of the cruelest missives sent to me, because they don't need to be shared with my loved ones. But I remember them. And you know what I do? I look beyond them. I refuse to be affected. I rise above them and know I actually am more enlightened than them.
There are disabled people who do believe that they should be called different terms, that their disabilities do not affect them nor are part of them. That's wonderful for them. For me, though, when I wake up every morning in agony and go to sleep every night in agony, I know I am disabled. I know my disabilities are part of me. That's how I see it for myself. However, I still life a wonderful life, and that matters so much.
Living the best life I can is what truly matters. The fact that I have disabilities is just one of the facts of my life.
Edited to add:
Look, let other disabled people (oh, hang on, the PC term right now is "person with disabilities" because People Come First, I don't know) say that their disabilities don't make up who they are, don't define them, are not part of them. But for someone like me, who was born that way, who lived an entire life that way... I can't just wave my and and say, "Oh, pff, my disabilities are just things I life with; they're not part of me." Because, in a really technical sense, they are. Kind of like Borg nanotechnology, you know? Sure, I can heal and ease the symptoms, I can slow the progression, I can even remove, heal, and even partially cure a few of the syndromes. Like Seven Of Nine from Star Trek: Voyager. But like Seven, part of that stuff is still in me and I cannot ever get rid of it. If that makes me attached to my disabilities and handicaps, then fine. If that makes it seem as though I treat my illnesses as part of who I am, then I am guilty. I was born damaged enough to develop a dozen separate neurological and neuro-other disorders. I may be able to use various medicines, remedies, and treatments to deal with my conditions... but that doesn't mean that I can cure myself. That doesn't mean that everything will just go away or become separate from me.
End statement.