It's the same every...............day,
All the hours
And all the seconds................in
All the minutes that
Feel the same every...............day
Of the week.
I am running.....................out--
Out of patience,
Out of hope, and...................I
Am so bitter now.
At moments, I find I...............am
Laughing, mirthlessly
And at horrible things..............so
I think I am numb
Or crazy; maybe.....................sick
In more ways than
One. The simple fact..................of
Existence, with this
Diseased blood, is a hell.............all
My own; it infects a
Sickness in my mind—.................this
Anger, desperation and
Fear turn my soul into................shit.
I'd tell them, you know, if they wanted to know. I'd tell them all sorts of things.
Wednesday, August 11, 2010
Tuesday, August 10, 2010
Bright Enough to Burn Me
How many times can I say things before the words run out? I wish they would. I’m tired of thinking them; it hurts my head. Makes it sore, the chaffing thoughts that scrape the same spots raw over and over and over and no sign of it ever stopping.
Because of course, none of it is my fault. Of course nothing is because I lack discipline or self-control or perspective. Because I forget so many things.
I saw some Blame lying around somewhere. There it is; I keep tripping over it. It’s always under my feet but there’s no way it belongs to me…
I need to get away for a long time; away from the glaring sun streaming through passenger-side windows and this valley that once felt safe but now it just hems me in; the overdue library books and clothes that don’t fit anymore and plastic over the windows and promises cracked down the middle and just all these things that feel so much like trash.
But I’m finding that location, location, location doesn’t change anything, anything, anything. The sky is still blue thirty miles from here. The sky is still blue, the earth is still round, the sun still sets in the west and I’m still tired.
I still feel dirty, too; just unclean everywhere and I’ve been more phobic of infection, exfoliating any cuts or scrapes. I shower every day and scrub I scrub I scrub till I bleed but it doesn’t help. It’s my blood that is dirty. I know I am contaminated from the inside and it makes me feel so strange, like I want to claw at whatever it is that’s under my skin, ruining me. Rip it out, throw it on the ground and run away. Just leave it there, genetically mutated litter.
It’s systematic, the wrinkles in my sheets, the way things pile—plates and laundry, and people; appointments. Lists of things: to do, to say, to pray, to hate. It’s inevitable, the way it all becomes about nothing else. Maintenance, sleep, sustenance, pursuit of fleeting distractions. It’s necessary, to think only of practicalities. What is “want”? There is only “can” or “cannot”. There is no room for plans or for specifications; for promises. There is no relativity. There is only this, that, and the difference.
Just give me a bit to close my eyes; a few minutes to rest on the floor in the dark, there between the bed and the wall where it feels safe and contained. Like I won’t drain out of myself, or if I do I’ll be able to draw myself back up again. Not that there aren’t times when it feels nice to let myself leak out forever; liquefy and spread, pretend I could evaporate and just cease to be--at least for a little while. But I have to go back downstairs soon, so I must be able to gather myself up again quickly. I am able, and I do, and hard decisions are made but I know it can't be any other way.
I suppose that means some of my future is open again--clear--so I can gaze up at my high-rise dreams and preserve the perfect image I’ve created in my mind; what the view might be if I ever really ascended to such great heights.
I’ve been having real dreams lately too, such vivid experiences of such mundane events that when I wake I have to check my memory of the day before; I don’t know if it might’ve actually happened. There’s so much light in them—in the dreams, that is. The people and places are all different but the light is the same every time:
Florescent lights in the office building where you work, all white and bouncing off of the plastic table where we make small talk during your lunch break. You fiddle with your blackberry and talk about important things, grown-up things that make me feel thirteen again. I glance at the snack machine off to the right; I want Doritos but I don’t want you to watch me eat them.
A Target parking lot on a hot day. The air is strange between us, and so thick we can’t stand the car anymore so we walk. I can feel the burning asphalt, and stray pieces of gravel stabbing through my thin-soled shoes. You run on ahead of me, calling something over your shoulder but the city-sounds are too loud; I can’t hear you. The sun is bright bright bright like glass in my eyes and my head hurts from it still.
My room, I’m on my computer and I’m looking for something, the answer to a question that feels urgent. The screen is mostly white, and the light gets more and more and more intense until I can’t read the text. I squint, try harder, because I need this information. It is for someone else, not for me, but I need it now and I can’t I just can’t look at the light anymore so I close my eyes and it’s too late and I fail.
Now my eyes have been hurting, when I’m awake. I think maybe I'm rubbing them in my sleep, trying to rub out the light. I can’t though, not when it’s stuck there behind my eyelids where I can’t reach to block it. So I try to keep them closed; try not to see brightness. It's a little sad; I do so love sparkly things. It hurts to look at them now.
Because of course, none of it is my fault. Of course nothing is because I lack discipline or self-control or perspective. Because I forget so many things.
I saw some Blame lying around somewhere. There it is; I keep tripping over it. It’s always under my feet but there’s no way it belongs to me…
I need to get away for a long time; away from the glaring sun streaming through passenger-side windows and this valley that once felt safe but now it just hems me in; the overdue library books and clothes that don’t fit anymore and plastic over the windows and promises cracked down the middle and just all these things that feel so much like trash.
But I’m finding that location, location, location doesn’t change anything, anything, anything. The sky is still blue thirty miles from here. The sky is still blue, the earth is still round, the sun still sets in the west and I’m still tired.
I still feel dirty, too; just unclean everywhere and I’ve been more phobic of infection, exfoliating any cuts or scrapes. I shower every day and scrub I scrub I scrub till I bleed but it doesn’t help. It’s my blood that is dirty. I know I am contaminated from the inside and it makes me feel so strange, like I want to claw at whatever it is that’s under my skin, ruining me. Rip it out, throw it on the ground and run away. Just leave it there, genetically mutated litter.
It’s systematic, the wrinkles in my sheets, the way things pile—plates and laundry, and people; appointments. Lists of things: to do, to say, to pray, to hate. It’s inevitable, the way it all becomes about nothing else. Maintenance, sleep, sustenance, pursuit of fleeting distractions. It’s necessary, to think only of practicalities. What is “want”? There is only “can” or “cannot”. There is no room for plans or for specifications; for promises. There is no relativity. There is only this, that, and the difference.
Just give me a bit to close my eyes; a few minutes to rest on the floor in the dark, there between the bed and the wall where it feels safe and contained. Like I won’t drain out of myself, or if I do I’ll be able to draw myself back up again. Not that there aren’t times when it feels nice to let myself leak out forever; liquefy and spread, pretend I could evaporate and just cease to be--at least for a little while. But I have to go back downstairs soon, so I must be able to gather myself up again quickly. I am able, and I do, and hard decisions are made but I know it can't be any other way.
I suppose that means some of my future is open again--clear--so I can gaze up at my high-rise dreams and preserve the perfect image I’ve created in my mind; what the view might be if I ever really ascended to such great heights.
I’ve been having real dreams lately too, such vivid experiences of such mundane events that when I wake I have to check my memory of the day before; I don’t know if it might’ve actually happened. There’s so much light in them—in the dreams, that is. The people and places are all different but the light is the same every time:
Florescent lights in the office building where you work, all white and bouncing off of the plastic table where we make small talk during your lunch break. You fiddle with your blackberry and talk about important things, grown-up things that make me feel thirteen again. I glance at the snack machine off to the right; I want Doritos but I don’t want you to watch me eat them.
A Target parking lot on a hot day. The air is strange between us, and so thick we can’t stand the car anymore so we walk. I can feel the burning asphalt, and stray pieces of gravel stabbing through my thin-soled shoes. You run on ahead of me, calling something over your shoulder but the city-sounds are too loud; I can’t hear you. The sun is bright bright bright like glass in my eyes and my head hurts from it still.
My room, I’m on my computer and I’m looking for something, the answer to a question that feels urgent. The screen is mostly white, and the light gets more and more and more intense until I can’t read the text. I squint, try harder, because I need this information. It is for someone else, not for me, but I need it now and I can’t I just can’t look at the light anymore so I close my eyes and it’s too late and I fail.
Now my eyes have been hurting, when I’m awake. I think maybe I'm rubbing them in my sleep, trying to rub out the light. I can’t though, not when it’s stuck there behind my eyelids where I can’t reach to block it. So I try to keep them closed; try not to see brightness. It's a little sad; I do so love sparkly things. It hurts to look at them now.
Monday, August 9, 2010
Oh My God, It's All Around
It’s getting late, and tonight I don’t have many happy things with which to occupy my mind while I wait for sleep. I take an ambien, knowing I will still have to endure a few more hours of wakeful thoughts before it finally makes me tired enough for my mind to shut up. Oh, I don’t want to wait those dark, quiet, lonely hours after everyone else has gone to sleep...
I’ve always been slightly wary of sleeping pills, like taking them is flirting with suicide. But I know it isn’t. I also know that one pill hasn’t been working lately, and tonight I really, really want to fall asleep quickly. Hesitantly, I slip another pill from the bottle. I break it in half, pretend the halves are even. But I know I swallowed the bigger one.
I’ve been waking up with these weird bruises the last few days. Some of them are small—maybe the size of quarters—but some of them are a bigger—about half the size of my palm. They are deep blotches of sullen blue and green, accented by angry red scrapes in the middle. In the morning I see them and I can’t remember getting them, which throws me off a little. Surely I’d remember how I got those three large ones; they look like they’d have hurt. But I don’t remember.
I know sometimes I do or say strange things under the influence of ambien if I don’t go right to sleep. Often times, a vague feeling of remembrance catches up with me and, though it feels more like a fleeting dream than a memory, I can at least be fairly certain that whatever I did was not too crazy.
But I am also certain that I have done and said things on ambien that I have absolutely no memory of, even when seeing the evidence of the event the next day. Usually, I journal between taking the pill and falling asleep, and I’ve grown accustomed to reaching for my journal first thing in the morning to see what odd things I wrote the night before. Some are amusing, like “and—wow, for just a second there I totally thought I was a goat”.
But some are eerie, like one of the first entries I found. It was before I knew ambien’s effects, so it frightened me a little. “God, help me not be afraid of the dark; the doors are locked the doors are locked”. I write strange things, sometimes I go on and on, and I don't remember writing them at all. Dig in my brain, searching for that vague feeling of familiarity, but it just isn't there.
So the bruises could be explained by nightly escapades I am taking, but promptly forget. But if that were the case, wouldn’t I at least have a vague memory of one of the nights? I don’t know; maybe not. Maybe I am sleepwalking.
I’ve never been a sleepwalker. When I was a child, I would wander wide-awake around the house while everyone else was asleep. I liked to sneak into my brother’s room and take his Game Boy. I'd get chocolates out of my mother’s hiding place, the sewing box in her closet, then slip down to the basement to sit with our Doberman puppies, Rocky and Sarah. I’d sit between their kennels, playing Super Mario World2 and singing to them, letting them lick the insides of the chocolate wrappers.
But when a spider scurried into a corner, or Rocky barked at some distant sound, I’d gather up my chocolate and Game Boy and run upstairs.
And I did have to run. I had to race the darkness, and the ghouls that inhabited each shadow. I would steel myself, hand poised above the light switch, and count down: Five, four, three, two, two and a half...run. Flip the switch off and sprint up the stairs—fourteen of them—throwing wild glances over my shoulder though I knew that monsters are invisible until they grab you. Sometimes I would trip on the thick carpet, and my heart would hammer in my ears and shh shh don’t scream or you’ll wake Mom and she’ll hide the chocolates somewhere else.
Once, I stepped on a rouge carpet staple. It was crooked and caught in my skin, tearing a long, rough cut. It was superficial, but enough of a wound that I tracked blood all the way back to my room so I had to explain my puppy-visit to my parents the next morning.
I left out the part about the chocolates.
This is still my time, the night; the hours of insomniacs and of people on the other side of the world. They’re mine and theirs and I want to embrace them, the hours, and I would but for what lurks beyond my threshold.
Because I am still a little girl, racing the monsters. I am still the child so afraid of the dark I will let blood dry on white carpet, so desperate am I to flee to the ghost-repellent safety of bedclothes.
Because I have these thoughts that surface sometimes, these images in my head from childhood nightmares or from terrifying lessons learned from a brush with the supernatural. I don’t mind them, when the sun’s out. In fact, sometimes I feel I need to process them—bring them out into the light where I can see and maybe strip away some of their mystery. But they’re like gremlins, these thoughts are; I can’t feed them after midnight. If I do, they’ll grow and mutate, and then in the early a.m. hours they come for me.
(12am) Skeletal, undead forms take shape in my mind; flesh ripped back to expose tendons and bone and they skitter about, decay allowing them to contort into positions so unnatural; up the stairs, in my doorway, on the ceiling.
(1am) A man, all black: black shirt, black pants, black boots, black mask—a substantial shadow. He holds a knife with a serrated blade in one hand, a roll of duct tape around his wrist. A book of matches is in his pocket, and a bottle of super-glue, the kind that dries almost instantly. He fingers the bottle, unseen while he watches me through the window. I want curtains.
(2am) My imagination plays cruel tricks on me. If I believe they’re there, they might as well be; I don’t know if I’m awake or dreaming. So I laugh ha ha ha because what else is left to do, when you are powerless to stop your worst fear approaching? Approaching quickly. Cold, paranormal. Of all, these 2am demons frighten me the most so I won’t speak of them. I can’t think about them, not anymore or The Terror will wedge itself deep in my brain and it won’t come out and dear God help me not be afraid of the dark the doors are locked the doors are locked...
It isn’t fair, how the fall of man perverts the night. Makes this beautiful, mysterious darkness into a cover for sin and evil; a breeding ground for legitimate reasons to be afraid. There is something so thaumaturgic and beautiful about the night; the way the air feels and the darkness, and if it wasn’t for the danger it brings it would be heaven to me.
And even so, sometimes it is. Because these dog-days of the summer are long; all-too lazy, hazy and blurred. The weeks have all blended in my mind, becoming one long smear of sluggish sunshine and sleepy eyes. Of tired, a little groggy play and hard decisions and loss, and tired again. It feels yellow to me, the smear. Dull yellow and some gray.
It is punctuated, though, with a thin black ribbon that is the summer nights. The ones when I have a little energy left over from the day, enough to be outside and absorb and think. They’re different this year somehow, maybe because my perspective has wandered so far from what it’s ever been before. Some good, maybe all bad? I can’t even tell—that’s how far off it is.
Either way, I spend too much time in my head so one night I grab Edgar (my iPod) and an old blanket to sit out by the pond for awhile. My senses seem sharper as I walk under this cool dusky veil. I vaguely dislike the way the grass prickles my socks, but more distinctly I feel the consistency of the air: moist, and so thick I almost believe I could see it if the sun was out.
I find a place on the bank and spread my blanket, just close enough to the water’s edge that my feet won’t get wet if I stretch them out.
The moon is full. Small and far-off, but bright and white like a florescent bulb. It leaves its print on the backs of my eyelids. The clouds around it still hold sunset hues, red and orange like war billows blazing in scarlet battalions, parsley, sage, rosemary and thyme. They stand out against the blue-black sky, making me think of painting with warm and cool colors; reminding me that anything any person ever knew about art, they learned first from these, God’s original pieces—the sky and all its jewels and gowns, all of nature, rustic things; things formed without the touch of man.
The warm colors fade quickly though, and the clouds blow past, leaving the moon and stars to their vivid lonesome. I watch their reflections on the water. The light trips constantly on the ripples and it looks like a slice of the sky has just fallen at my feet.
Trickles, drip-drop and water noises are made by creatures just below the surface of the pond, coming up to devour unsuspecting insects. The smooth head of a large catfish rises from the water, glistening in the moonlight for a moment before submerging once more. Fog crawls across, curls up from the water in elegant flourishes and the air it lends is so mysterious that I shudder slightly. It is surreal.
The fireflies are dream-like, too; so many…I have never seen so many fireflies. They are everywhere and all around me, sparkling in the darkness against the tree line like diamonds on black lace. It seems to me as if they all should have names, these little pixies; these living points of light, hovering above the tall grass’s misty tips that sway gently in the barely-breeze.
The water glittering below, the fireflies all around, the stars above; they blend together to surround me to form some terrestrial galaxy and the fog is swirling and oh, I feel like I’m in some awesome esoteric fairytale. Some strange fantasy land and I can’t believe it; I feel like I am seated in the eye of a miracle and it is so, so hard to believe that this is no phenomenon. This is every summer night; routine marvel. The most utterly orphic thing I have ever seen, and yet it is so common.
Words won’t come to me yet. I am in shock from the wonder. Everything is darkness and sparkling lights and silvery mist, and this feeling that I am in the very sky itself is so vivid I am dizzy for a moment, seizing fistfuls of grass to steady myself.
But as soon as I am reoriented, there are praises sparking on my every nerve ending, leaping from every wrinkle in my brain and all I can think is “Oh my God...oh my God...”. This magnificence, this beauty is so intense I think I might cry—my heart swells with it and is bursting because it is just too much. Too much numinous splendor. I can’t comprehend it; my eyes and mind are too small for something this ethereal, this mystically radiant.
And even so, God wastes it on me. It is just Him and I here; this is all—all—for me alone. No one else in the world is seeing exactly what I am seeing now. There may be many people admiring many different wonders, but this one, this exact picture I am in, was painted just for me. Little me, who can’t understand it at all.
And of course, my constantly-over-analyzing mind translates this into a metaphor. For His glory, grace and love. So arcane, so intimate, and yet so huge and illustrious; far too deep and far too wide for my comprehension and yet it is expressly for me.
And I want to cry again, this time with a longing to really know it. With a longing to understand and to truly experience Him.
Then this thought floats into my head, as if He whispered to me: “But you already are. In these sights and sounds, and in the air...you are in Me now, you are breathing Me. I am in your nostrils and in your lungs and in your soul; I am in the stars and the fireflies and in your dog at the foot of your bed. Every time you experience the good and beautiful things in My creations, you experience Me.”
I was a girl once, before I realized I’d been a machine all along. Before I knew how I worked, how everything that makes me can be reduced to chemicals in my brain and manipulated by instinct. Nature/nurture, compatible codes, triggers, colors and words.
But sometimes, for a moment, it’s different. On nights like this when I glimpse the dimension of the sky, or when I use a swing set, or feel the wind outside an airport in a strange place I remember what I am supposed to be: just this creation; this something-child swelling with wonder explicable only by the life-breath of God that’s in everything and it’s enough—more than enough—to live. To fly with forever.
And I am so thankful that, for all I’ve lost, I still have this.
I’ve always been slightly wary of sleeping pills, like taking them is flirting with suicide. But I know it isn’t. I also know that one pill hasn’t been working lately, and tonight I really, really want to fall asleep quickly. Hesitantly, I slip another pill from the bottle. I break it in half, pretend the halves are even. But I know I swallowed the bigger one.
I’ve been waking up with these weird bruises the last few days. Some of them are small—maybe the size of quarters—but some of them are a bigger—about half the size of my palm. They are deep blotches of sullen blue and green, accented by angry red scrapes in the middle. In the morning I see them and I can’t remember getting them, which throws me off a little. Surely I’d remember how I got those three large ones; they look like they’d have hurt. But I don’t remember.
I know sometimes I do or say strange things under the influence of ambien if I don’t go right to sleep. Often times, a vague feeling of remembrance catches up with me and, though it feels more like a fleeting dream than a memory, I can at least be fairly certain that whatever I did was not too crazy.
But I am also certain that I have done and said things on ambien that I have absolutely no memory of, even when seeing the evidence of the event the next day. Usually, I journal between taking the pill and falling asleep, and I’ve grown accustomed to reaching for my journal first thing in the morning to see what odd things I wrote the night before. Some are amusing, like “and—wow, for just a second there I totally thought I was a goat”.
But some are eerie, like one of the first entries I found. It was before I knew ambien’s effects, so it frightened me a little. “God, help me not be afraid of the dark; the doors are locked the doors are locked”. I write strange things, sometimes I go on and on, and I don't remember writing them at all. Dig in my brain, searching for that vague feeling of familiarity, but it just isn't there.
So the bruises could be explained by nightly escapades I am taking, but promptly forget. But if that were the case, wouldn’t I at least have a vague memory of one of the nights? I don’t know; maybe not. Maybe I am sleepwalking.
I’ve never been a sleepwalker. When I was a child, I would wander wide-awake around the house while everyone else was asleep. I liked to sneak into my brother’s room and take his Game Boy. I'd get chocolates out of my mother’s hiding place, the sewing box in her closet, then slip down to the basement to sit with our Doberman puppies, Rocky and Sarah. I’d sit between their kennels, playing Super Mario World2 and singing to them, letting them lick the insides of the chocolate wrappers.
But when a spider scurried into a corner, or Rocky barked at some distant sound, I’d gather up my chocolate and Game Boy and run upstairs.
And I did have to run. I had to race the darkness, and the ghouls that inhabited each shadow. I would steel myself, hand poised above the light switch, and count down: Five, four, three, two, two and a half...run. Flip the switch off and sprint up the stairs—fourteen of them—throwing wild glances over my shoulder though I knew that monsters are invisible until they grab you. Sometimes I would trip on the thick carpet, and my heart would hammer in my ears and shh shh don’t scream or you’ll wake Mom and she’ll hide the chocolates somewhere else.
Once, I stepped on a rouge carpet staple. It was crooked and caught in my skin, tearing a long, rough cut. It was superficial, but enough of a wound that I tracked blood all the way back to my room so I had to explain my puppy-visit to my parents the next morning.
I left out the part about the chocolates.
This is still my time, the night; the hours of insomniacs and of people on the other side of the world. They’re mine and theirs and I want to embrace them, the hours, and I would but for what lurks beyond my threshold.
Because I am still a little girl, racing the monsters. I am still the child so afraid of the dark I will let blood dry on white carpet, so desperate am I to flee to the ghost-repellent safety of bedclothes.
Because I have these thoughts that surface sometimes, these images in my head from childhood nightmares or from terrifying lessons learned from a brush with the supernatural. I don’t mind them, when the sun’s out. In fact, sometimes I feel I need to process them—bring them out into the light where I can see and maybe strip away some of their mystery. But they’re like gremlins, these thoughts are; I can’t feed them after midnight. If I do, they’ll grow and mutate, and then in the early a.m. hours they come for me.
(12am) Skeletal, undead forms take shape in my mind; flesh ripped back to expose tendons and bone and they skitter about, decay allowing them to contort into positions so unnatural; up the stairs, in my doorway, on the ceiling.
(1am) A man, all black: black shirt, black pants, black boots, black mask—a substantial shadow. He holds a knife with a serrated blade in one hand, a roll of duct tape around his wrist. A book of matches is in his pocket, and a bottle of super-glue, the kind that dries almost instantly. He fingers the bottle, unseen while he watches me through the window. I want curtains.
(2am) My imagination plays cruel tricks on me. If I believe they’re there, they might as well be; I don’t know if I’m awake or dreaming. So I laugh ha ha ha because what else is left to do, when you are powerless to stop your worst fear approaching? Approaching quickly. Cold, paranormal. Of all, these 2am demons frighten me the most so I won’t speak of them. I can’t think about them, not anymore or The Terror will wedge itself deep in my brain and it won’t come out and dear God help me not be afraid of the dark the doors are locked the doors are locked...
It isn’t fair, how the fall of man perverts the night. Makes this beautiful, mysterious darkness into a cover for sin and evil; a breeding ground for legitimate reasons to be afraid. There is something so thaumaturgic and beautiful about the night; the way the air feels and the darkness, and if it wasn’t for the danger it brings it would be heaven to me.
And even so, sometimes it is. Because these dog-days of the summer are long; all-too lazy, hazy and blurred. The weeks have all blended in my mind, becoming one long smear of sluggish sunshine and sleepy eyes. Of tired, a little groggy play and hard decisions and loss, and tired again. It feels yellow to me, the smear. Dull yellow and some gray.
It is punctuated, though, with a thin black ribbon that is the summer nights. The ones when I have a little energy left over from the day, enough to be outside and absorb and think. They’re different this year somehow, maybe because my perspective has wandered so far from what it’s ever been before. Some good, maybe all bad? I can’t even tell—that’s how far off it is.
Either way, I spend too much time in my head so one night I grab Edgar (my iPod) and an old blanket to sit out by the pond for awhile. My senses seem sharper as I walk under this cool dusky veil. I vaguely dislike the way the grass prickles my socks, but more distinctly I feel the consistency of the air: moist, and so thick I almost believe I could see it if the sun was out.
I find a place on the bank and spread my blanket, just close enough to the water’s edge that my feet won’t get wet if I stretch them out.
The moon is full. Small and far-off, but bright and white like a florescent bulb. It leaves its print on the backs of my eyelids. The clouds around it still hold sunset hues, red and orange like war billows blazing in scarlet battalions, parsley, sage, rosemary and thyme. They stand out against the blue-black sky, making me think of painting with warm and cool colors; reminding me that anything any person ever knew about art, they learned first from these, God’s original pieces—the sky and all its jewels and gowns, all of nature, rustic things; things formed without the touch of man.
The warm colors fade quickly though, and the clouds blow past, leaving the moon and stars to their vivid lonesome. I watch their reflections on the water. The light trips constantly on the ripples and it looks like a slice of the sky has just fallen at my feet.
Trickles, drip-drop and water noises are made by creatures just below the surface of the pond, coming up to devour unsuspecting insects. The smooth head of a large catfish rises from the water, glistening in the moonlight for a moment before submerging once more. Fog crawls across, curls up from the water in elegant flourishes and the air it lends is so mysterious that I shudder slightly. It is surreal.
The fireflies are dream-like, too; so many…I have never seen so many fireflies. They are everywhere and all around me, sparkling in the darkness against the tree line like diamonds on black lace. It seems to me as if they all should have names, these little pixies; these living points of light, hovering above the tall grass’s misty tips that sway gently in the barely-breeze.
The water glittering below, the fireflies all around, the stars above; they blend together to surround me to form some terrestrial galaxy and the fog is swirling and oh, I feel like I’m in some awesome esoteric fairytale. Some strange fantasy land and I can’t believe it; I feel like I am seated in the eye of a miracle and it is so, so hard to believe that this is no phenomenon. This is every summer night; routine marvel. The most utterly orphic thing I have ever seen, and yet it is so common.
Words won’t come to me yet. I am in shock from the wonder. Everything is darkness and sparkling lights and silvery mist, and this feeling that I am in the very sky itself is so vivid I am dizzy for a moment, seizing fistfuls of grass to steady myself.
But as soon as I am reoriented, there are praises sparking on my every nerve ending, leaping from every wrinkle in my brain and all I can think is “Oh my God...oh my God...”. This magnificence, this beauty is so intense I think I might cry—my heart swells with it and is bursting because it is just too much. Too much numinous splendor. I can’t comprehend it; my eyes and mind are too small for something this ethereal, this mystically radiant.
And even so, God wastes it on me. It is just Him and I here; this is all—all—for me alone. No one else in the world is seeing exactly what I am seeing now. There may be many people admiring many different wonders, but this one, this exact picture I am in, was painted just for me. Little me, who can’t understand it at all.
And of course, my constantly-over-analyzing mind translates this into a metaphor. For His glory, grace and love. So arcane, so intimate, and yet so huge and illustrious; far too deep and far too wide for my comprehension and yet it is expressly for me.
And I want to cry again, this time with a longing to really know it. With a longing to understand and to truly experience Him.
Then this thought floats into my head, as if He whispered to me: “But you already are. In these sights and sounds, and in the air...you are in Me now, you are breathing Me. I am in your nostrils and in your lungs and in your soul; I am in the stars and the fireflies and in your dog at the foot of your bed. Every time you experience the good and beautiful things in My creations, you experience Me.”
I was a girl once, before I realized I’d been a machine all along. Before I knew how I worked, how everything that makes me can be reduced to chemicals in my brain and manipulated by instinct. Nature/nurture, compatible codes, triggers, colors and words.
But sometimes, for a moment, it’s different. On nights like this when I glimpse the dimension of the sky, or when I use a swing set, or feel the wind outside an airport in a strange place I remember what I am supposed to be: just this creation; this something-child swelling with wonder explicable only by the life-breath of God that’s in everything and it’s enough—more than enough—to live. To fly with forever.
And I am so thankful that, for all I’ve lost, I still have this.
Sunday, August 8, 2010
A Narrative as Pointless as the Day it Depicts.
I am sitting in the waiting room of a new doctor; Dr. Jones. It is very blue here; blue paintings on blue walls, blue cushions on the chairs, cheap, blue-flecked carpet. Even the young man next to me is wearing a blue t-shirt. He is fat and his hair is oily. He looks at me too long; I want to change seats. I chew my lip distractedly, pausing when the metallic taste of blood washes over my tongue. For maybe ten minutes I try to make myself stop, but before I realize it I am biting again, about to make the other side bleed, too.
I don’t want to see another doctor, to explain and answer questions all over again. It is a tedious process to begin with, and I don’t have the patience for it today. I am preoccupied.
“Elsie?” The nurse mispronounces my name, like they all do. I barely notice; just stand and follow her. Following nurses is second nature to me now. Anyone wearing scrubs could questioningly call out any name beginning with “El”, and I would probably follow them right into a big white van before I realized what’s happening.
The doctor meets us in his office. My headache sprouts fifteen minutes into the appointment. I need to pee. The leather sofa is sticky, and I want to go home.
I tune in and out of the conversation about my many medications, happening mostly between my mother and Dr. Jones, but I am less absent-minded than the doctor himself.
“Have you read that book?” His question penetrates my anxious thoughts.
“Oh, um, what was the title again?” I pretend I had at least been paying some kind of attention.
“The Girl with the Dragon Tattoo. You’re interested in criminal psychology?” Apparently this had been discussed. I nod. “You might like that book, then. It’s all the rage now.”
“Oh, I haven’t heard of it.” I say. “I’ll look it up.”
“It’s Swedish.”
“Ah.”
Silence.
“But I don’t remember the author’s name.” Dr. Jones considers this with a deep frown.
“Oh. Well. I bet I can find it if I Google the title.” I assure him, because he seems concerned that this lack of information may devastate me.
“I’ll write it down.” My mother says, and does so.
More silence.
“Yes, you should look it up.” The doctor nods, as if deciding for sure that this would be a good and proper course of action.
“I will.” I lie.
Silence again, brief but long enough to make me feel awkward. Which, I suppose, isn’t that hard to do.
“Hmm, it seems like we were talking about something important before...” Dr. Jones says mildly, his eyes floating somewhere between the wall and the ceiling.
I pull my mouth into a half-smile, but I can feel my forehead frowning. Mom and I exchange a puzzled glance. Is he kidding? We had been discussing the adverse effects of the stimulant medication he was considering prescribing me. To me, this seems an important enough topic to remember, especially considering that he is a doctor and I am a chronically ill patient, and we are sitting in his office. He is holding a clipboard with a paper full of notes he had been taking throughout the appointment. Surely he is joking?
“Ah!” He gestures sharply with his hands, like a conductor. “Right! Which prescription. Well, really there are several options...” Oh, yes; I think to myself. This is a doctors’ appointment, not a Book of the Month club meeting.
I leave the office with a refill script, some samples, and a follow-up appointment. No revelations, no progress; just like it’s been for years. I feel blank; a heavy, sort of gray indifference that leaves my mind clear. Not ‘clear’ as in ‘clean’, or as if it has been de-cluttered. More like a wide space from which everything has been emptied out, leaving me only with a vague sense of awareness that anything was ever there at all; like the faint cutouts left behind by boxes on a dusty floor. I think one of them contained hope once, but I don't remember what it looked like.
I’ve been told I should write a memoir about living with lupus, but I’ve never really considered it. Leave the memoirs to the people whose stories have some resolution; who have overcome, who have learned peace and acceptance or experienced miracles.
Mine would just be several chapters like this, pointless narratives about equally pointless days. A mass of anticlimactic words strung together in story form; a cluster of random details that, ultimately, mean nothing.
Sometimes even I don't care anymore.
I don’t want to see another doctor, to explain and answer questions all over again. It is a tedious process to begin with, and I don’t have the patience for it today. I am preoccupied.
“Elsie?” The nurse mispronounces my name, like they all do. I barely notice; just stand and follow her. Following nurses is second nature to me now. Anyone wearing scrubs could questioningly call out any name beginning with “El”, and I would probably follow them right into a big white van before I realized what’s happening.
The doctor meets us in his office. My headache sprouts fifteen minutes into the appointment. I need to pee. The leather sofa is sticky, and I want to go home.
I tune in and out of the conversation about my many medications, happening mostly between my mother and Dr. Jones, but I am less absent-minded than the doctor himself.
“Have you read that book?” His question penetrates my anxious thoughts.
“Oh, um, what was the title again?” I pretend I had at least been paying some kind of attention.
“The Girl with the Dragon Tattoo. You’re interested in criminal psychology?” Apparently this had been discussed. I nod. “You might like that book, then. It’s all the rage now.”
“Oh, I haven’t heard of it.” I say. “I’ll look it up.”
“It’s Swedish.”
“Ah.”
Silence.
“But I don’t remember the author’s name.” Dr. Jones considers this with a deep frown.
“Oh. Well. I bet I can find it if I Google the title.” I assure him, because he seems concerned that this lack of information may devastate me.
“I’ll write it down.” My mother says, and does so.
More silence.
“Yes, you should look it up.” The doctor nods, as if deciding for sure that this would be a good and proper course of action.
“I will.” I lie.
Silence again, brief but long enough to make me feel awkward. Which, I suppose, isn’t that hard to do.
“Hmm, it seems like we were talking about something important before...” Dr. Jones says mildly, his eyes floating somewhere between the wall and the ceiling.
I pull my mouth into a half-smile, but I can feel my forehead frowning. Mom and I exchange a puzzled glance. Is he kidding? We had been discussing the adverse effects of the stimulant medication he was considering prescribing me. To me, this seems an important enough topic to remember, especially considering that he is a doctor and I am a chronically ill patient, and we are sitting in his office. He is holding a clipboard with a paper full of notes he had been taking throughout the appointment. Surely he is joking?
“Ah!” He gestures sharply with his hands, like a conductor. “Right! Which prescription. Well, really there are several options...” Oh, yes; I think to myself. This is a doctors’ appointment, not a Book of the Month club meeting.
I leave the office with a refill script, some samples, and a follow-up appointment. No revelations, no progress; just like it’s been for years. I feel blank; a heavy, sort of gray indifference that leaves my mind clear. Not ‘clear’ as in ‘clean’, or as if it has been de-cluttered. More like a wide space from which everything has been emptied out, leaving me only with a vague sense of awareness that anything was ever there at all; like the faint cutouts left behind by boxes on a dusty floor. I think one of them contained hope once, but I don't remember what it looked like.
I’ve been told I should write a memoir about living with lupus, but I’ve never really considered it. Leave the memoirs to the people whose stories have some resolution; who have overcome, who have learned peace and acceptance or experienced miracles.
Mine would just be several chapters like this, pointless narratives about equally pointless days. A mass of anticlimactic words strung together in story form; a cluster of random details that, ultimately, mean nothing.
Sometimes even I don't care anymore.
Wednesday, August 4, 2010
Fever Dream
Somehow I know it’s a dream. I know it is too good to be true—too satisfying; too perfect. I don’t know the context or the reasons; I lack even the influence of any real life experiences that might be similar. But it feels real anyway.
I am curled on a soft bed, a mattress on the ground and all white white white. I am white too, wearing a white sundress of soft cotton.
It’s warm where I am; so warm I’ve kicked away the sheets and they are crumpled around me, seeming to glow in the bright but gentle light of the room.
I seem to glow too. My skin is soft and golden and my hair is long, tumbling strands of sparkle on my shoulders. I feel its soft brush behind me as well, tickling below my bare shoulder blades, just above the low back of my dress. It is a deep, rich brunette--my hair is--amber liquidity, gleaming like the hardwood floor.
I twist some of the silken strands around my finger as I assess my body, my golden form, lying relaxed and half uncurled amongst the swaths of pale fabric. I am comfortable with the shape of myself; for once there does not seem to be too much of me. I can see slight shadows indicating the angle of my hip bone, and the way its line leads into my thigh lets me see a bit of muscle tone there, as though I’ve been feeling well enough to take walks. My scars are gone, as if they’d never been. I feel completely beautiful, like I could let someone really see me—let myself be studied; analyzed—and not fold in on myself to hide some flaw.
It matters little how I feel about myself, though, because at this moment the door to the right of the mattress opens. Laughter from the next room bounces through the door, the gleeful voices of children and some relaxed, over-loud tones of adults who have for once let go of cares.
And then he enters, muting the laughter by closing the heavy door. He stops, looks at me. The admiring, hungry look he flashes leaves little doubt that I purely and totally captivate him as his eyes flicker to my face, then briefly away and back—unable to resist but still attempting respect.
In life, I’ve never seen him before. But in this dream-world I know him well; better than I can remember knowing anyone. His smile is tight and detailed, accenting sharp features beneath shadows cast by his rough-cut hair. It is woven through with yellow and brown hues, and the way the light slides down careless locks makes me think of two-toned silk—golden-amber; an eagle’s eye.
He wears white also. The fabric of his loose, draw-string pants is cotton like my dress, but of a denser weave.
Tendons are defined on the tops of his bare feet as he steps quickly around to my side of the mattress. He kneels down beside me and I don’t realize how wide I’ve been smiling until I have to rearrange my mouth to receive his kiss. It is enthusiastic, like he’s truly missed me in spite of only having been apart for the night and first half of the morning. His sun-warm skin carries scents of saltwater; of hot sand and curry. He’s been out exploring while I overslept.
Our laughter mingles as he tumbles into the ample folds of my sheets, dragging me with him while I play at protest.
Then his eyes catch mine, locking them fast. I don’t remember their color—brown, hazel maybe. No, green. Or blue? They could have been gray. Maybe they were something like the color of the slightly-tinted glass of a van’s back passenger window, like the one I used to stare out of as a child on the long drive to Tennessee: stable and constant, yet changing in hue and dimension depending on what lay beyond them.
They are bright; sharp and penetrating. For a moment we are frozen while the intensity of his gaze burns away my layer of humor and I try not to let him see the hint of reality that now colors my resistance to his hold; try to pretend that the pure, violent severity of his love hasn’t shaken me a bit.
In the morning when I woke from that dream, over a year ago, I couldn’t remember what it was actually like to be in it. I remembered the facts of the feelings; I know I felt this way or that. But I couldn’t remember what those feelings felt like. They didn’t stay with me, even in those few minutes of hazy blue between dream and reality. The second the dream was over, a new feeling came over me and has stayed with me ever since. It was vague and unnamed for a long time, just an uncharted valley, but recently I think I’ve been able to put words to it. It has mostly to do with the first part of the dream, the intense contentment in the simplicity of being.
It was the absence of that feeling, upon waking, that brought to the surface a truth that has now grown enough to be realized:
I’m tired of being real; tired of being human. I don’t like it. I want to be a book character, or a painting, or a sculpture-girl made of copper all shimmering and bronzed. I want to be something that is abstract and distant. Something that is so beautifully false it lacks any of my imperfect characteristics: the tangles in my hair, the dark circles under my eyes, the flaws in my skin, the imperfections in my form, stretch marks, scars.
I want to be something unchanging, frozen just how I was in the Before Times—the times before lupus. I was so much more vibrant—full of life and laugh—and I was prettier then.
But Before was so long ago, I suppose I really don’t remember what it was like. Trying to remember fails, just like striving for the soul-memory of that sunwashed dream, and so much has happened since then.
Every now and then, I try to remove myself from my context. I try to look at the way I am and the way I live, day to day by each moment, as if it weren’t already defined or as if I was watching someone else. As if I was thirteen again, with this blank-slate future and normal, ultimately inconsequential expectations of what life might throw at me. Like, ‘someday I might break a bone’, or ‘someday I’ll be independent and complain about taxes while drinking overpriced cocktails with all the other independent people’.
I’ve been trying to get that feeling back, especially lately with this wall in front of me. There are other things in front of me, too, but my eyes hurt too much to look at them. And I’m seeing double a little, so without really being able to read or make art or watch TV for very long, I’ve been spending a lot of my time getting to know this wall.
It’s smooth—cool and soothing for my sore eyes, but it is textured too; something for my gaze to catch on once in a while, allowing me to avoid the extra strain that comes from trying so hard to see something in nothing.
I try to find a comfortable position to settle them, comfortable enough to relax, but I can’t find it, not even when they are closed. I feel claustrophobic, and empty from the large percentage of activities my eyes forbid me to engage in at the moment.
I try, I do; all the time I’m trying and I’m trying now to try, to try not to panic as I wait for hours, longing to fall asleep.
Because I still hold out some hope for a good dream once in a while, even though for the past few months all I’ve had are nightmares.
I am curled on a soft bed, a mattress on the ground and all white white white. I am white too, wearing a white sundress of soft cotton.
It’s warm where I am; so warm I’ve kicked away the sheets and they are crumpled around me, seeming to glow in the bright but gentle light of the room.
I seem to glow too. My skin is soft and golden and my hair is long, tumbling strands of sparkle on my shoulders. I feel its soft brush behind me as well, tickling below my bare shoulder blades, just above the low back of my dress. It is a deep, rich brunette--my hair is--amber liquidity, gleaming like the hardwood floor.
I twist some of the silken strands around my finger as I assess my body, my golden form, lying relaxed and half uncurled amongst the swaths of pale fabric. I am comfortable with the shape of myself; for once there does not seem to be too much of me. I can see slight shadows indicating the angle of my hip bone, and the way its line leads into my thigh lets me see a bit of muscle tone there, as though I’ve been feeling well enough to take walks. My scars are gone, as if they’d never been. I feel completely beautiful, like I could let someone really see me—let myself be studied; analyzed—and not fold in on myself to hide some flaw.
It matters little how I feel about myself, though, because at this moment the door to the right of the mattress opens. Laughter from the next room bounces through the door, the gleeful voices of children and some relaxed, over-loud tones of adults who have for once let go of cares.
And then he enters, muting the laughter by closing the heavy door. He stops, looks at me. The admiring, hungry look he flashes leaves little doubt that I purely and totally captivate him as his eyes flicker to my face, then briefly away and back—unable to resist but still attempting respect.
In life, I’ve never seen him before. But in this dream-world I know him well; better than I can remember knowing anyone. His smile is tight and detailed, accenting sharp features beneath shadows cast by his rough-cut hair. It is woven through with yellow and brown hues, and the way the light slides down careless locks makes me think of two-toned silk—golden-amber; an eagle’s eye.
He wears white also. The fabric of his loose, draw-string pants is cotton like my dress, but of a denser weave.
Tendons are defined on the tops of his bare feet as he steps quickly around to my side of the mattress. He kneels down beside me and I don’t realize how wide I’ve been smiling until I have to rearrange my mouth to receive his kiss. It is enthusiastic, like he’s truly missed me in spite of only having been apart for the night and first half of the morning. His sun-warm skin carries scents of saltwater; of hot sand and curry. He’s been out exploring while I overslept.
Our laughter mingles as he tumbles into the ample folds of my sheets, dragging me with him while I play at protest.
Then his eyes catch mine, locking them fast. I don’t remember their color—brown, hazel maybe. No, green. Or blue? They could have been gray. Maybe they were something like the color of the slightly-tinted glass of a van’s back passenger window, like the one I used to stare out of as a child on the long drive to Tennessee: stable and constant, yet changing in hue and dimension depending on what lay beyond them.
They are bright; sharp and penetrating. For a moment we are frozen while the intensity of his gaze burns away my layer of humor and I try not to let him see the hint of reality that now colors my resistance to his hold; try to pretend that the pure, violent severity of his love hasn’t shaken me a bit.
In the morning when I woke from that dream, over a year ago, I couldn’t remember what it was actually like to be in it. I remembered the facts of the feelings; I know I felt this way or that. But I couldn’t remember what those feelings felt like. They didn’t stay with me, even in those few minutes of hazy blue between dream and reality. The second the dream was over, a new feeling came over me and has stayed with me ever since. It was vague and unnamed for a long time, just an uncharted valley, but recently I think I’ve been able to put words to it. It has mostly to do with the first part of the dream, the intense contentment in the simplicity of being.
It was the absence of that feeling, upon waking, that brought to the surface a truth that has now grown enough to be realized:
I’m tired of being real; tired of being human. I don’t like it. I want to be a book character, or a painting, or a sculpture-girl made of copper all shimmering and bronzed. I want to be something that is abstract and distant. Something that is so beautifully false it lacks any of my imperfect characteristics: the tangles in my hair, the dark circles under my eyes, the flaws in my skin, the imperfections in my form, stretch marks, scars.
I want to be something unchanging, frozen just how I was in the Before Times—the times before lupus. I was so much more vibrant—full of life and laugh—and I was prettier then.
But Before was so long ago, I suppose I really don’t remember what it was like. Trying to remember fails, just like striving for the soul-memory of that sunwashed dream, and so much has happened since then.
Every now and then, I try to remove myself from my context. I try to look at the way I am and the way I live, day to day by each moment, as if it weren’t already defined or as if I was watching someone else. As if I was thirteen again, with this blank-slate future and normal, ultimately inconsequential expectations of what life might throw at me. Like, ‘someday I might break a bone’, or ‘someday I’ll be independent and complain about taxes while drinking overpriced cocktails with all the other independent people’.
I’ve been trying to get that feeling back, especially lately with this wall in front of me. There are other things in front of me, too, but my eyes hurt too much to look at them. And I’m seeing double a little, so without really being able to read or make art or watch TV for very long, I’ve been spending a lot of my time getting to know this wall.
It’s smooth—cool and soothing for my sore eyes, but it is textured too; something for my gaze to catch on once in a while, allowing me to avoid the extra strain that comes from trying so hard to see something in nothing.
I try to find a comfortable position to settle them, comfortable enough to relax, but I can’t find it, not even when they are closed. I feel claustrophobic, and empty from the large percentage of activities my eyes forbid me to engage in at the moment.
I try, I do; all the time I’m trying and I’m trying now to try, to try not to panic as I wait for hours, longing to fall asleep.
Because I still hold out some hope for a good dream once in a while, even though for the past few months all I’ve had are nightmares.
Wednesday, July 28, 2010
MARGOT: There’s a house in Texas. I’m going there.
EDGAR: You’ve always been here.
MARGOT: I can’t breathe here.
EDGAR: You’ve lasted this long.
MARGOT: Not really.
EDGAR: Then what’s the difference?
MARGOT: There isn’t one.
EDGAR: ...You make me happy.
MARGOT: You make me happy, too.
EDGAR: So?
MARGOT: ...Goodbye.
EDGAR: You’ve always been here.
MARGOT: I can’t breathe here.
EDGAR: You’ve lasted this long.
MARGOT: Not really.
EDGAR: Then what’s the difference?
MARGOT: There isn’t one.
EDGAR: ...You make me happy.
MARGOT: You make me happy, too.
EDGAR: So?
MARGOT: ...Goodbye.
Sunday, July 18, 2010
I'll admit...
Usually, I don’t post anything that isn’t cloaked in some creative-writing style. Especially with blogging. I don’t want to be one of THOSE bloggers; you know, the ones who do nothing but whine? Usually I’m too arrogant to admit I’m human. Like really, truly human; the kind of human that every human is that likes—no, that needs—someone to at least know some things. I’ve been feeling human for a long time. In the Before times, I think, I wasn’t fully. Human, that is. It was like my ‘humanity’ was halfway out of my body, still on it’s way down from being created by God. Like He held it above me for a few years, so that I could live passionately and carefree, and love living life so much that I was hardly aware of myself at all. I was just this blissful Presence, laughing with friends or singing or riding my horses or drawing. But I am so, so human now, and I can’t deny it so I’m just going to say some stuff.
Today I’ll admit I’m falling apart. Not all at once; not a sudden crumble. More like the periodic crumble of a feeble but still-standing house.
I'll admit that I am scared shitless a lot of the time. I'm scared of not knowing how or if I will be able to have an independent future; whether I'll be able to finish school and live on my own and keep a job (let alone a career I'm passionate about, like I've always wanted). I'm scared what uncomfortable medical tests/procedures/treatments might be ahead. I'm scared that I'll never be healthy enough to have a serious relationship. I'm scared every time I leave my house, because I know that at some point my energy will drop and I will be stuck out and about, feeling so sick I can barely walk short distances and even riding in the car is difficult. I'm scared of having to live my entire life this way.
I’ll admit that I feel really, really alone, because living/dealing with lupus is a fresh, painful battle every day, but it is old news to everyone else. They treated it like the big deal it was when I was first diagnosed, but now most people have moved on. Because of the ‘old news’ thing and because for about a whole year now my emotional struggle with it has been exceptional, not many people take this ‘crisis’ of mine seriously anymore. They kind of blow it off, like it's just the angsty melancholy of some emo kid. Most don't really want to talk about it; I think they're bored with it now. And I don't blame them. I understand; I really do. I don't expect (or want) anyone to be always worrying or feeling sorry for me; I don't want pity or for people to treat me differently. It's just that it's been a while since some of the people I'm close to really wanted to know how I'm holding up these days. And it just sucks that it has to be this way.
It’s strange, knowing that my prime is behind me; that it has been behind me for five years now. In this way I feel as though I am forty, instead of twenty. I hear middle-aged women talking, complaining about aches and pains and lethargy; the disintegration of vigor and beauty. They laugh at themselves and each other, but I want to cry or break something because this is worse than forty; this illness is more debilitating than advancing age and I am not even close to forty. I am twenty, and I shouldn’t be this way; not yet. I should have had another thirty years before life lost its fullness; before every good moment was drained to only half-full of the joy it would have had if I was not constantly hounded by some symptom or another or five. I don’t even have the luxury of giving up. It’s like my shadow on a sunny day, this struggle is. It’s stuck to my heels. I jump but I fall back to it again; I run I run I run but it’s still so close behind me till I just collapse and it consumes me so there is no relief in the submission.
It puts a cap on my future. There are so many of my dreams that, without a miracle, I won’t be healthy enough to fulfill. I had high aspirations in the Before Times. My future was a well of opportunities; I could pursue any occupation I chose. I could afford to dream big: mission work in Africa, photography and journalism for National Geographic, a criminal investigative analyst for the FBI.Now everything is decided by practicalities; what I will be physically able to accomplish. Taking a shower wears me out. And I am supposed to finish college, find a job, then work enough to support myself? I don’t know what to do; I have no idea how I am going to manage and that is so scary.
I feel it every second of every minute of every hour of every day, some days much worse than others, but even on ‘good’ days it is very much there. I am good at faking it; at seeming like I feel better than I do. I am constantly pushing myself; nothing comes easily. I can laugh at a joke but my head is throbbing; I can carry on a smiling conversation while gripping the edge of a table or the back of a chair to keep from collapsing. Most of the time, I can drink from a glass of water without spilling it because of my shaking hands.
When anyone not so used to pushing on in spite of such feelings of sickness would cancel everything and stay in bed all day...I still get up on those days, and do what I have to. Because that is how I feel most of the time, if I am not feeling so ill that I truly, physically cannot do so much as shower. So I have no choice but to function if at all possible, because if I allowed myself the luxury of staying in bed whenever I felt like crap and it seemed the day would be a struggle to get through, I would never get up. So if I can, I make myself do things and squeeze what enjoyment I can out of them. Because, as hard as it is, it's harder to feel like crap AND watch the last of the possibly-salvageable shards of my life pass by.
Lots of people think it’s unbelievable; they think I can only feel as ill as I look. They think, “If you were really feeling that bad, you couldn’t act like you’re feeling better than you are.” But they haven’t spent the last five years practicing for the role, knowing that they’d better learn to deal with it because this is their life; this is their future. This is forever. There’s no escape, there’s no doing something to change the circumstances, there’s no hope of just waiting it out and getting my life back. Cause this is it now.
Yes, I'll admit that I am angry. Not at people, not at God. Just at 'the way things are'.
I know that God has a plan and that somehow, someday, He will fulfill me and show me how this is for the best.
I know that there are millions of people who have it WAY worse than I do, and that God has blessed me in so many ways. I haven't completely lost perspective; I know I have a lot to be very thankful for about my life, and that everyone has sucky things in their lives.
But sometimes I just need to admit that I'm not yet at peace with this part of mine.
Today I’ll admit I’m falling apart. Not all at once; not a sudden crumble. More like the periodic crumble of a feeble but still-standing house.
I'll admit that I am scared shitless a lot of the time. I'm scared of not knowing how or if I will be able to have an independent future; whether I'll be able to finish school and live on my own and keep a job (let alone a career I'm passionate about, like I've always wanted). I'm scared what uncomfortable medical tests/procedures/treatments might be ahead. I'm scared that I'll never be healthy enough to have a serious relationship. I'm scared every time I leave my house, because I know that at some point my energy will drop and I will be stuck out and about, feeling so sick I can barely walk short distances and even riding in the car is difficult. I'm scared of having to live my entire life this way.
I’ll admit that I feel really, really alone, because living/dealing with lupus is a fresh, painful battle every day, but it is old news to everyone else. They treated it like the big deal it was when I was first diagnosed, but now most people have moved on. Because of the ‘old news’ thing and because for about a whole year now my emotional struggle with it has been exceptional, not many people take this ‘crisis’ of mine seriously anymore. They kind of blow it off, like it's just the angsty melancholy of some emo kid. Most don't really want to talk about it; I think they're bored with it now. And I don't blame them. I understand; I really do. I don't expect (or want) anyone to be always worrying or feeling sorry for me; I don't want pity or for people to treat me differently. It's just that it's been a while since some of the people I'm close to really wanted to know how I'm holding up these days. And it just sucks that it has to be this way.
It’s strange, knowing that my prime is behind me; that it has been behind me for five years now. In this way I feel as though I am forty, instead of twenty. I hear middle-aged women talking, complaining about aches and pains and lethargy; the disintegration of vigor and beauty. They laugh at themselves and each other, but I want to cry or break something because this is worse than forty; this illness is more debilitating than advancing age and I am not even close to forty. I am twenty, and I shouldn’t be this way; not yet. I should have had another thirty years before life lost its fullness; before every good moment was drained to only half-full of the joy it would have had if I was not constantly hounded by some symptom or another or five. I don’t even have the luxury of giving up. It’s like my shadow on a sunny day, this struggle is. It’s stuck to my heels. I jump but I fall back to it again; I run I run I run but it’s still so close behind me till I just collapse and it consumes me so there is no relief in the submission.
It puts a cap on my future. There are so many of my dreams that, without a miracle, I won’t be healthy enough to fulfill. I had high aspirations in the Before Times. My future was a well of opportunities; I could pursue any occupation I chose. I could afford to dream big: mission work in Africa, photography and journalism for National Geographic, a criminal investigative analyst for the FBI.Now everything is decided by practicalities; what I will be physically able to accomplish. Taking a shower wears me out. And I am supposed to finish college, find a job, then work enough to support myself? I don’t know what to do; I have no idea how I am going to manage and that is so scary.
I feel it every second of every minute of every hour of every day, some days much worse than others, but even on ‘good’ days it is very much there. I am good at faking it; at seeming like I feel better than I do. I am constantly pushing myself; nothing comes easily. I can laugh at a joke but my head is throbbing; I can carry on a smiling conversation while gripping the edge of a table or the back of a chair to keep from collapsing. Most of the time, I can drink from a glass of water without spilling it because of my shaking hands.
When anyone not so used to pushing on in spite of such feelings of sickness would cancel everything and stay in bed all day...I still get up on those days, and do what I have to. Because that is how I feel most of the time, if I am not feeling so ill that I truly, physically cannot do so much as shower. So I have no choice but to function if at all possible, because if I allowed myself the luxury of staying in bed whenever I felt like crap and it seemed the day would be a struggle to get through, I would never get up. So if I can, I make myself do things and squeeze what enjoyment I can out of them. Because, as hard as it is, it's harder to feel like crap AND watch the last of the possibly-salvageable shards of my life pass by.
Lots of people think it’s unbelievable; they think I can only feel as ill as I look. They think, “If you were really feeling that bad, you couldn’t act like you’re feeling better than you are.” But they haven’t spent the last five years practicing for the role, knowing that they’d better learn to deal with it because this is their life; this is their future. This is forever. There’s no escape, there’s no doing something to change the circumstances, there’s no hope of just waiting it out and getting my life back. Cause this is it now.
Yes, I'll admit that I am angry. Not at people, not at God. Just at 'the way things are'.
I know that God has a plan and that somehow, someday, He will fulfill me and show me how this is for the best.
I know that there are millions of people who have it WAY worse than I do, and that God has blessed me in so many ways. I haven't completely lost perspective; I know I have a lot to be very thankful for about my life, and that everyone has sucky things in their lives.
But sometimes I just need to admit that I'm not yet at peace with this part of mine.
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