The sound of snow

Bizarre dreams last night. When I woke up for the second time after Adam left for work, I noticed that Rose was snuggled against my torso and Luna was curled up against the backs of my knees. Yay, cats.
I learned what snow sounds like. Adam and I were both having trouble falling asleep. Suddenly, he asked if it was snowing. We peered out the window. I saw nothing, but Adam said that the snow was likely evaporating in the sky. He said that it sounded like shimmery static. Then I realized that the noise I had been hearing for some time was that sound. Sheer, crystalline, shimmery static. Like gentle cicadas made of glass and ice.
This morning, there was a dusting of designer snow everywhere. The snow had reached the ground eventually. I went for a walk, then a bus ride. I needed to exercise.
I feel stiff all over, and both my hips are aching. Sciatica is acting up a little bit in both legs. Time for more stretching.
Everyone I know has been encouraging and supportive about my decision to file for SSDI. Most people wondered what took me so long. I can only hope that I get approved without too much hassle. I've heard both negative stories and success stories, and I almost want to stop hearing the negative stories. I panic too easily.
Last night's dinner involved making crepes with leftover pancake batter. Crepes with Nutella and pomegranate jam, crepes with butter and ginger jam, crepes with cream cheese and strawberry jam. They were very good. But I miss the Very Berry pfannkuchen at Bread & Chocolate. Now that's a crepe meal.

The sound of snow

Bizarre dreams last night. When I woke up for the second time after Adam left for work, I noticed that Rose was snuggled against my torso and Luna was curled up against the backs of my knees. Yay, cats.
I learned what snow sounds like. Adam and I were both having trouble falling asleep. Suddenly, he asked if it was snowing. We peered out the window. I saw nothing, but Adam said that the snow was likely evaporating in the sky. He said that it sounded like shimmery static. Then I realized that the noise I had been hearing for some time was that sound. Sheer, crystalline, shimmery static. Like gentle cicadas made of glass and ice.
This morning, there was a dusting of designer snow everywhere. The snow had reached the ground eventually. I went for a walk, then a bus ride. I needed to exercise.
I feel stiff all over, and both my hips are aching. Sciatica is acting up a little bit in both legs. Time for more stretching.
Everyone I know has been encouraging and supportive about my decision to file for SSDI. Most people wondered what took me so long. I can only hope that I get approved without too much hassle. I've heard both negative stories and success stories, and I almost want to stop hearing the negative stories. I panic too easily.
Last night's dinner involved making crepes with leftover pancake batter. Crepes with Nutella and pomegranate jam, crepes with butter and ginger jam, crepes with cream cheese and strawberry jam. They were very good. But I miss the Very Berry pfannkuchen at Bread & Chocolate. Now that's a crepe meal.

The sound of snow

Bizarre dreams last night. When I woke up for the second time after Adam left for work, I noticed that Rose was snuggled against my torso and Luna was curled up against the backs of my knees. Yay, cats.
I learned what snow sounds like. Adam and I were both having trouble falling asleep. Suddenly, he asked if it was snowing. We peered out the window. I saw nothing, but Adam said that the snow was likely evaporating in the sky. He said that it sounded like shimmery static. Then I realized that the noise I had been hearing for some time was that sound. Sheer, crystalline, shimmery static. Like gentle cicadas made of glass and ice.
This morning, there was a dusting of designer snow everywhere. The snow had reached the ground eventually. I went for a walk, then a bus ride. I needed to exercise.
I feel stiff all over, and both my hips are aching. Sciatica is acting up a little bit in both legs. Time for more stretching.
Everyone I know has been encouraging and supportive about my decision to file for SSDI. Most people wondered what took me so long. I can only hope that I get approved without too much hassle. I've heard both negative stories and success stories, and I almost want to stop hearing the negative stories. I panic too easily.
Last night's dinner involved making crepes with leftover pancake batter. Crepes with Nutella and pomegranate jam, crepes with butter and ginger jam, crepes with cream cheese and strawberry jam. They were very good. But I miss the Very Berry pfannkuchen at Bread & Chocolate. Now that's a crepe meal.

The sound of snow

Bizarre dreams last night. When I woke up for the second time after Adam left for work, I noticed that Rose was snuggled against my torso and Luna was curled up against the backs of my knees. Yay, cats.
I learned what snow sounds like. Adam and I were both having trouble falling asleep. Suddenly, he asked if it was snowing. We peered out the window. I saw nothing, but Adam said that the snow was likely evaporating in the sky. He said that it sounded like shimmery static. Then I realized that the noise I had been hearing for some time was that sound. Sheer, crystalline, shimmery static. Like gentle cicadas made of glass and ice.
This morning, there was a dusting of designer snow everywhere. The snow had reached the ground eventually. I went for a walk, then a bus ride. I needed to exercise.
I feel stiff all over, and both my hips are aching. Sciatica is acting up a little bit in both legs. Time for more stretching.
Everyone I know has been encouraging and supportive about my decision to file for SSDI. Most people wondered what took me so long. I can only hope that I get approved without too much hassle. I've heard both negative stories and success stories, and I almost want to stop hearing the negative stories. I panic too easily.
Last night's dinner involved making crepes with leftover pancake batter. Crepes with Nutella and pomegranate jam, crepes with butter and ginger jam, crepes with cream cheese and strawberry jam. They were very good. But I miss the Very Berry pfannkuchen at Bread & Chocolate. Now that's a crepe meal.

My Own Kind Of Normal

Prompted by a very odd debate on a cerebral palsy forum. I have no idea why I'm writing this.

One of the words that makes me twitch is "handicapable." I feel angry when someone applies it to me. I can't properly describe why it angers me so much, but for me, the term "handicapable" feels deeply condescending, the way you'd blithely and sweetly pat a child on the head for doing something everyone already knows how to do. It's more complicated than that, but I can't find the proper words right now. Brain fog, maybe. Stuff hurts right now, no surprise.

If other people want to apply fluffy terms like "handicapable" to themselves, that's wonderful for them if it makes them happy. Many disabled people and their families need that specific kind of sunny attitude to get through everything. And really, I think that's fantastic.
That's not me.

I'm not going to sugarcoat my health. I'm handicapped. I'm disabled. I'm damaged. I'm broken. I will walk with a limp for the rest of my life. All the muscles on the left side of my body will be weak, spastic, tense, and stiff no matter how much freaking yoga I do. I have chronic widespread pain over every part of my body that affects every single system in my body. I have seizures that make me feel like Alice in Wonderland. I have three major primary chronic disorders (cerebral palsy, epilepsy, fibromyalgia) that will never be cured, and over half a dozen other medical conditions that cause a great deal of irritation on a daily basis. My neurology is surreal and very skewed. My brainbody connection is very damaged. I hold absolutely no illusions about anything, which is why I've decided to apply for disability insurance, because I'm not getting better and as I get older I will get worse.
I am extremely lucky that my conditions are mild to moderate. I am quite capable. I hurt all the time, and I am tired all the time, and parts of me will fail and collapse in different ways at unexpected times, but that just comes with the territory. I know how good I have it.
Which is also probably why the term "handicapable" aggravates and frustrates me. I'm handicapped. I'm capable. I do not need the two words smashed together like a frantic attempt at sweet social sensitivity. It feels slimy and unnecessary. The words "handicapped" and "disabled" are not bad words to be danced around or transformed into fuzzy word creatures to be coddled and cooed at. I am handicapped. I am disabled. I've been that way all my life. I've accepted it. It's not so bad, really.

I personally don't need political correctness or bright saccharine word confetti bursting around me to help me get through life.
What I want is for people to understand that I know exactly what's going on, and nobody has to sweeten things up for me. When I wake up in the morning and decide to do things, I do them. I hurt. I get fatigued. That pain and exhaustion will get worse or stay the same and I never know which. But I always do things. All the time. Every day. I don't lose sight of anything. I just do things because I have to do things, and I don't whine or complain, although I might mutter and swear and growl and snarl until I shove myself through the pain. I ask for help when I need help. But plastering a cheery grin on my face and shouting happy platitudes isn't really my style.
I can be cheerful, happy, bouncy, silly, adorable, weird, geeky, giggly, giddy, and joyful, while limping and being in pain and being fatigued and being disabled. It's not one thing or another. It's everything all the time.

I'm the only one who can live my life.
It's my life. I'm living it with every ounce of strength I have.
I am my own kind of normal.
Etcetera.

http://www.schuylersmonsterblog.com/2006/06/different-kind-of-normal-revisited.html

My Own Kind Of Normal

Prompted by a very odd debate on a cerebral palsy forum. I have no idea why I'm writing this.

One of the words that makes me twitch is "handicapable." I feel angry when someone applies it to me. I can't properly describe why it angers me so much, but for me, the term "handicapable" feels deeply condescending, the way you'd blithely and sweetly pat a child on the head for doing something everyone already knows how to do. It's more complicated than that, but I can't find the proper words right now. Brain fog, maybe. Stuff hurts right now, no surprise.

If other people want to apply fluffy terms like "handicapable" to themselves, that's wonderful for them if it makes them happy. Many disabled people and their families need that specific kind of sunny attitude to get through everything. And really, I think that's fantastic.
That's not me.

I'm not going to sugarcoat my health. I'm handicapped. I'm disabled. I'm damaged. I'm broken. I will walk with a limp for the rest of my life. All the muscles on the left side of my body will be weak, spastic, tense, and stiff no matter how much freaking yoga I do. I have chronic widespread pain over every part of my body that affects every single system in my body. I have seizures that make me feel like Alice in Wonderland. I have three major primary chronic disorders (cerebral palsy, epilepsy, fibromyalgia) that will never be cured, and over half a dozen other medical conditions that cause a great deal of irritation on a daily basis. My neurology is surreal and very skewed. My brainbody connection is very damaged. I hold absolutely no illusions about anything, which is why I've decided to apply for disability insurance, because I'm not getting better and as I get older I will get worse.
I am extremely lucky that my conditions are mild to moderate. I am quite capable. I hurt all the time, and I am tired all the time, and parts of me will fail and collapse in different ways at unexpected times, but that just comes with the territory. I know how good I have it.
Which is also probably why the term "handicapable" aggravates and frustrates me. I'm handicapped. I'm capable. I do not need the two words smashed together like a frantic attempt at sweet social sensitivity. It feels slimy and unnecessary. The words "handicapped" and "disabled" are not bad words to be danced around or transformed into fuzzy word creatures to be coddled and cooed at. I am handicapped. I am disabled. I've been that way all my life. I've accepted it. It's not so bad, really.

I personally don't need political correctness or bright saccharine word confetti bursting around me to help me get through life.
What I want is for people to understand that I know exactly what's going on, and nobody has to sweeten things up for me. When I wake up in the morning and decide to do things, I do them. I hurt. I get fatigued. That pain and exhaustion will get worse or stay the same and I never know which. But I always do things. All the time. Every day. I don't lose sight of anything. I just do things because I have to do things, and I don't whine or complain, although I might mutter and swear and growl and snarl until I shove myself through the pain. I ask for help when I need help. But plastering a cheery grin on my face and shouting happy platitudes isn't really my style.
I can be cheerful, happy, bouncy, silly, adorable, weird, geeky, giggly, giddy, and joyful, while limping and being in pain and being fatigued and being disabled. It's not one thing or another. It's everything all the time.

I'm the only one who can live my life.
It's my life. I'm living it with every ounce of strength I have.
I am my own kind of normal.
Etcetera.

http://www.schuylersmonsterblog.com/2006/06/different-kind-of-normal-revisited.html

My Own Kind Of Normal

Prompted by a very odd debate on a cerebral palsy forum. I have no idea why I'm writing this.

One of the words that makes me twitch is "handicapable." I feel angry when someone applies it to me. I can't properly describe why it angers me so much, but for me, the term "handicapable" feels deeply condescending, the way you'd blithely and sweetly pat a child on the head for doing something everyone already knows how to do. It's more complicated than that, but I can't find the proper words right now. Brain fog, maybe. Stuff hurts right now, no surprise.

If other people want to apply fluffy terms like "handicapable" to themselves, that's wonderful for them if it makes them happy. Many disabled people and their families need that specific kind of sunny attitude to get through everything. And really, I think that's fantastic.
That's not me.

I'm not going to sugarcoat my health. I'm handicapped. I'm disabled. I'm damaged. I'm broken. I will walk with a limp for the rest of my life. All the muscles on the left side of my body will be weak, spastic, tense, and stiff no matter how much freaking yoga I do. I have chronic widespread pain over every part of my body that affects every single system in my body. I have seizures that make me feel like Alice in Wonderland. I have three major primary chronic disorders (cerebral palsy, epilepsy, fibromyalgia) that will never be cured, and over half a dozen other medical conditions that cause a great deal of irritation on a daily basis. My neurology is surreal and very skewed. My brainbody connection is very damaged. I hold absolutely no illusions about anything, which is why I've decided to apply for disability insurance, because I'm not getting better and as I get older I will get worse.
I am extremely lucky that my conditions are mild to moderate. I am quite capable. I hurt all the time, and I am tired all the time, and parts of me will fail and collapse in different ways at unexpected times, but that just comes with the territory. I know how good I have it.
Which is also probably why the term "handicapable" aggravates and frustrates me. I'm handicapped. I'm capable. I do not need the two words smashed together like a frantic attempt at sweet social sensitivity. It feels slimy and unnecessary. The words "handicapped" and "disabled" are not bad words to be danced around or transformed into fuzzy word creatures to be coddled and cooed at. I am handicapped. I am disabled. I've been that way all my life. I've accepted it. It's not so bad, really.

I personally don't need political correctness or bright saccharine word confetti bursting around me to help me get through life.
What I want is for people to understand that I know exactly what's going on, and nobody has to sweeten things up for me. When I wake up in the morning and decide to do things, I do them. I hurt. I get fatigued. That pain and exhaustion will get worse or stay the same and I never know which. But I always do things. All the time. Every day. I don't lose sight of anything. I just do things because I have to do things, and I don't whine or complain, although I might mutter and swear and growl and snarl until I shove myself through the pain. I ask for help when I need help. But plastering a cheery grin on my face and shouting happy platitudes isn't really my style.
I can be cheerful, happy, bouncy, silly, adorable, weird, geeky, giggly, giddy, and joyful, while limping and being in pain and being fatigued and being disabled. It's not one thing or another. It's everything all the time.

I'm the only one who can live my life.
It's my life. I'm living it with every ounce of strength I have.
I am my own kind of normal.
Etcetera.

http://www.schuylersmonsterblog.com/2006/06/different-kind-of-normal-revisited.html

My Own Kind Of Normal

Prompted by a very odd debate on a cerebral palsy forum. I have no idea why I'm writing this.

One of the words that makes me twitch is "handicapable." I feel angry when someone applies it to me. I can't properly describe why it angers me so much, but for me, the term "handicapable" feels deeply condescending, the way you'd blithely and sweetly pat a child on the head for doing something everyone already knows how to do. It's more complicated than that, but I can't find the proper words right now. Brain fog, maybe. Stuff hurts right now, no surprise.

If other people want to apply fluffy terms like "handicapable" to themselves, that's wonderful for them if it makes them happy. Many disabled people and their families need that specific kind of sunny attitude to get through everything. And really, I think that's fantastic.
That's not me.

I'm not going to sugarcoat my health. I'm handicapped. I'm disabled. I'm damaged. I'm broken. I will walk with a limp for the rest of my life. All the muscles on the left side of my body will be weak, spastic, tense, and stiff no matter how much freaking yoga I do. I have chronic widespread pain over every part of my body that affects every single system in my body. I have seizures that make me feel like Alice in Wonderland. I have three major primary chronic disorders (cerebral palsy, epilepsy, fibromyalgia) that will never be cured, and over half a dozen other medical conditions that cause a great deal of irritation on a daily basis. My neurology is surreal and very skewed. My brainbody connection is very damaged. I hold absolutely no illusions about anything, which is why I've decided to apply for disability insurance, because I'm not getting better and as I get older I will get worse.
I am extremely lucky that my conditions are mild to moderate. I am quite capable. I hurt all the time, and I am tired all the time, and parts of me will fail and collapse in different ways at unexpected times, but that just comes with the territory. I know how good I have it.
Which is also probably why the term "handicapable" aggravates and frustrates me. I'm handicapped. I'm capable. I do not need the two words smashed together like a frantic attempt at sweet social sensitivity. It feels slimy and unnecessary. The words "handicapped" and "disabled" are not bad words to be danced around or transformed into fuzzy word creatures to be coddled and cooed at. I am handicapped. I am disabled. I've been that way all my life. I've accepted it. It's not so bad, really.

I personally don't need political correctness or bright saccharine word confetti bursting around me to help me get through life.
What I want is for people to understand that I know exactly what's going on, and nobody has to sweeten things up for me. When I wake up in the morning and decide to do things, I do them. I hurt. I get fatigued. That pain and exhaustion will get worse or stay the same and I never know which. But I always do things. All the time. Every day. I don't lose sight of anything. I just do things because I have to do things, and I don't whine or complain, although I might mutter and swear and growl and snarl until I shove myself through the pain. I ask for help when I need help. But plastering a cheery grin on my face and shouting happy platitudes isn't really my style.
I can be cheerful, happy, bouncy, silly, adorable, weird, geeky, giggly, giddy, and joyful, while limping and being in pain and being fatigued and being disabled. It's not one thing or another. It's everything all the time.

I'm the only one who can live my life.
It's my life. I'm living it with every ounce of strength I have.
I am my own kind of normal.
Etcetera.

http://www.schuylersmonsterblog.com/2006/06/different-kind-of-normal-revisited.html