I think I've figured out a way to articulate what my big deal is with this fibro stuff.
So I'm walking down the street, minding my own business, when all of a sudden someone hands me a grand piano.
I never asked for a grand piano. I do not want a grand piano. But that doesn't matter, because now I have a grand piano to carry around.
The problem is that a grand piano is big and heavy, and there are all these awkward edges that I keep bumping into, and quite frankly I'm not even sure how to hold a grand piano in the first place! I mean, I don't even know how to play the piano.
The best part? It's a magical piano, visible only to a select few. To most people, I'm just staggering around for no good reason.
So I've got this grand piano, and it's big and heavy and I'm trying to figure out what to do with it, because carrying around a grand piano is very new to me. What I'm hoping for is that someone will see how big and heavy and awkward this piano is and come help me carry this thing. I see C standing off to the side and I think, "Oh, he'll help me carry this piano! He cares about me, so of course he'll help me carry it." But C doesn't come help me carry the piano, and I am disappointed and confused, although I can't really articulate why.
From C's point of view... I have a grand piano. There is nothing he can do about that, and although he would love to help me carry it, he can't do anything because his hands go right through it. All he can do is be there for me as I try to learn how to carry this piano around.
I realized that I have been hoping that someone would come help me carry this piano-- friends, family, anyone! I actually envied my friend with cancer a little bit, because people get behind someone with cancer and show such solidarity and support... and I want that, too! I want people to help me carry my piano!
But C showed me that no one can. I have to learn how to carry this big ol' thing on my own. People will be there for me, but that's pretty much it...
It is a big psychological hurdle for me to jump, this fibro... it's not like I didn't struggle with it before, but knowing what it is, as well as the vicious pace of symptom progression, has made it difficult to wrap my brain around.
Hearing Mom explain my "old lady disease" to my brother kinda wilted something inside of me... it sounded so sad! And I'm a little angry, because it's not fair that other diseases get recognition, you know? But something like this... It's like no one but me realizes that my future has been irrevocably altered! Or it's like people pity me, but no one is upset on my behalf, I guess. I just wanna yell out, "HEY! This is as serious as cancer to me!" If I were fighting cancer, I'd be upset that I might not get to live the life that I want, that it may all just go away... and I'm facing the same thing now! My life is at stake, but it's so subtle that no one picks up on it...
I'm fighting for my life, too. And if I don't fight... I may as well just lay down and die, frankly...
Maybe I just really want someone to help me carry this damn piano, but it's a wish that will never be fulfilled.
I'm just reeling from the shock, still... not sure where to grip this thing, or how to carry it without the sharp edges banging into me. And I'm not sure what exactly I'm wanting or needing from those around me, but... I do feel pretty alone. And it's sad.
Anyway, I plan to learn to play the piano. So there. :)
So I'm walking down the street, minding my own business, when all of a sudden someone hands me a grand piano.
I never asked for a grand piano. I do not want a grand piano. But that doesn't matter, because now I have a grand piano to carry around.
The problem is that a grand piano is big and heavy, and there are all these awkward edges that I keep bumping into, and quite frankly I'm not even sure how to hold a grand piano in the first place! I mean, I don't even know how to play the piano.
The best part? It's a magical piano, visible only to a select few. To most people, I'm just staggering around for no good reason.
So I've got this grand piano, and it's big and heavy and I'm trying to figure out what to do with it, because carrying around a grand piano is very new to me. What I'm hoping for is that someone will see how big and heavy and awkward this piano is and come help me carry this thing. I see C standing off to the side and I think, "Oh, he'll help me carry this piano! He cares about me, so of course he'll help me carry it." But C doesn't come help me carry the piano, and I am disappointed and confused, although I can't really articulate why.
From C's point of view... I have a grand piano. There is nothing he can do about that, and although he would love to help me carry it, he can't do anything because his hands go right through it. All he can do is be there for me as I try to learn how to carry this piano around.
I realized that I have been hoping that someone would come help me carry this piano-- friends, family, anyone! I actually envied my friend with cancer a little bit, because people get behind someone with cancer and show such solidarity and support... and I want that, too! I want people to help me carry my piano!
But C showed me that no one can. I have to learn how to carry this big ol' thing on my own. People will be there for me, but that's pretty much it...
It is a big psychological hurdle for me to jump, this fibro... it's not like I didn't struggle with it before, but knowing what it is, as well as the vicious pace of symptom progression, has made it difficult to wrap my brain around.
Hearing Mom explain my "old lady disease" to my brother kinda wilted something inside of me... it sounded so sad! And I'm a little angry, because it's not fair that other diseases get recognition, you know? But something like this... It's like no one but me realizes that my future has been irrevocably altered! Or it's like people pity me, but no one is upset on my behalf, I guess. I just wanna yell out, "HEY! This is as serious as cancer to me!" If I were fighting cancer, I'd be upset that I might not get to live the life that I want, that it may all just go away... and I'm facing the same thing now! My life is at stake, but it's so subtle that no one picks up on it...
I'm fighting for my life, too. And if I don't fight... I may as well just lay down and die, frankly...
Maybe I just really want someone to help me carry this damn piano, but it's a wish that will never be fulfilled.
I'm just reeling from the shock, still... not sure where to grip this thing, or how to carry it without the sharp edges banging into me. And I'm not sure what exactly I'm wanting or needing from those around me, but... I do feel pretty alone. And it's sad.
Anyway, I plan to learn to play the piano. So there. :)
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