Post Soundtrack: Afterglow by Phaeleh
I am not enough. Whatever I attempt to do, it is always impacted by limitations and interference that leads back to my Lupus. It is a never-ending process which I have so little control over. I can even tell where a choice is my own fault or the fault of my Lupus. Did I choose not to Swiffer because I was feeling lazy, or because it would cause more pain, or would use energy I didn't have to spare? There is no clear cut answer, and no one to place blame on but myself.
I make those sorts of decisions on a continual basis, attempting to balance what I feel are my responsibilities with the very real necessity of taking care of myself. I am forced to constantly evaluate and re-evaluate my own motives, putting my decision-making under a private micriscope. No matter how small a choice, it gets examined closely and repeatedly. This process runs in the background of my mind, constantly and without end.
To know this is something there is no foreseeable end to is a crushing weight. I will always be behind, attempting to catch up with all that I feel I might have done, all I could or should have done. So I will never be enough. How can I, when all this doubt and guilt is hanging over me? I can't do this alone, but to seek help only highlights how broken and lesser I feel I have become, which makes my expectations of myself all the more insurmountable. I feel trapped in a cycle where my best hope is just to endure. That is a despairing and painful way to live.
Tuesday, July 5, 2016
Wednesday, April 20, 2016
The Beast
Post Soundtrack: What If by Coldplay
Fear is an extremely powerful force, even when you don't know it is at the heart of a problem.
For a while now, perhaps even longer than I'm aware, I've been struggling against something internal. It's been nagging at me, dogging my heels, echoing in my dreams, and spilling out the cracks and into the world in a rather negative manner. I've been doing my best to fight it, to keep control.
One aspect of that fight is that I don't want to hurt those I love just because I'm hurting inside. Despite my best efforts, it still has been creeping out and biting at my beloved ones. I despise and resent this, but am only partially successful at clamping down on the feelings to keep them inside. My husband says it's only leaked out in minor ways, but it doesn't feel like that to me. It sometimes feels like a raging beast, clawing me raw inside, trying to find its way out. I've stuffed it as deep and as far inside me as I can, but still its roar reaches my ears.
The other aspect of this is closely related to the first. That ferality is frightening and represents many things that are beyond my control. It is my helplessness, my sense of being useless, my frustration and resentment, and it is all very scary. To let it loose is to lose control, to erupt into chaos, to meltdown, and it isn't something I welcome or desire. That loss of control is the opposite of what I desperately want, and so I've fought to keep it caged.
Needless to say, that hasn't been terribly effective.
I wasn't even sure what was wrong. All I knew was that something down deep in the darkness of my soul was desperately trying to get out, trying to tell me something I didn't want to hear. And I knew I didn't really want to give it a chance to voice itself.
It's ironic, really, that when I'm faced with major upheaval, I shut down emotionally. I've always been quite in touch with my emotions, and those of others. It's part of who I am. But when something goes very wrong, it means that my emotions become a force of nature, so I shut them off to save myself, but more importantly, to save those near and dear to me. I fear for what havoc will be caused if I let it all out. Of course, closing my feelings in is never the proper or helpful long-term solution, but the defense mechanism does serve a purpose, for a time.
The usefulness of that mechanism does eventually fail, though. Today, I came to the end of that rope, and had the meltdown that apparently I very much needed, and came fcae to face with the beast inside. As I was held in the firm security of my beloved's arms, I circled with the beast, eyeing it as it snarled and paced and groaned. The more I talked about what I felt, the clearer the beast became, until I could finally give it a name.
Fear.
Not just a specific fear, or a basic, straight-forward fear. No, this beast was much more complex and inexplicable than that. It was fear of living, of the torture of the unknowns of each day, each hour, each moment. It was the agony of never knowing, always anxious for what could be. It was the painful ache of knowing that nothing is a given, whether you mean for the good or for the bad. You might suppose fear of dying was involved, but much much less than you'd suppose. No, much more was the fear of how long I would have to endure these uncertainties. Just imagine... the rest of my life, forty or fifty years if I'm "lucky", with every day wondering when my disease will strike, and in what way, and to what degree. Wondering if this will be what kills me. Wondering when that might happen. Wondering what it will take from me. Wondering how long anything will last, whether it is painful or relieved. Every. Day. For fifty years. Living in fear.
This is the fear that runs bone-deep in me, that permeates everything, whether I will it to or not. Whether I'm aware of it or not. No wonder I'd been struggling so hard of late.
The fear is back in its cage now, for the time being. It will never go away, though it might fade to a shadow for a time. Even then, it will still whisper in the shadows of my heart, a subtle counterpoint to all the ups and downs of my daily life. Acknowledging it and allowing it out takes away some of the power it holds over me, though. It blunts those claws, and muffles those roars. Some of the restlessness and pressure eases by knowing my foe's name. But it never will leave me, I don't think. There will always be a taste of it, even in my calmest and most confident moments. As my husband pointed out, it is not a matter of being weak or cowardly. It is a part of human nature, to be afraid of trials you know are coming, but cannot predict.
So I will go on being human. I will hupomeno, endure. I will find strength I did not know I had, or borrow my husband's when I cannot find my own. I will learn to live with the fear, to let it loose when it threatens to take control, and to circumvent it in order to keep living and moving forward. Fear is powerful, but it will not rule me.
Fear is an extremely powerful force, even when you don't know it is at the heart of a problem.
For a while now, perhaps even longer than I'm aware, I've been struggling against something internal. It's been nagging at me, dogging my heels, echoing in my dreams, and spilling out the cracks and into the world in a rather negative manner. I've been doing my best to fight it, to keep control.
One aspect of that fight is that I don't want to hurt those I love just because I'm hurting inside. Despite my best efforts, it still has been creeping out and biting at my beloved ones. I despise and resent this, but am only partially successful at clamping down on the feelings to keep them inside. My husband says it's only leaked out in minor ways, but it doesn't feel like that to me. It sometimes feels like a raging beast, clawing me raw inside, trying to find its way out. I've stuffed it as deep and as far inside me as I can, but still its roar reaches my ears.
The other aspect of this is closely related to the first. That ferality is frightening and represents many things that are beyond my control. It is my helplessness, my sense of being useless, my frustration and resentment, and it is all very scary. To let it loose is to lose control, to erupt into chaos, to meltdown, and it isn't something I welcome or desire. That loss of control is the opposite of what I desperately want, and so I've fought to keep it caged.
Needless to say, that hasn't been terribly effective.
I wasn't even sure what was wrong. All I knew was that something down deep in the darkness of my soul was desperately trying to get out, trying to tell me something I didn't want to hear. And I knew I didn't really want to give it a chance to voice itself.
It's ironic, really, that when I'm faced with major upheaval, I shut down emotionally. I've always been quite in touch with my emotions, and those of others. It's part of who I am. But when something goes very wrong, it means that my emotions become a force of nature, so I shut them off to save myself, but more importantly, to save those near and dear to me. I fear for what havoc will be caused if I let it all out. Of course, closing my feelings in is never the proper or helpful long-term solution, but the defense mechanism does serve a purpose, for a time.
The usefulness of that mechanism does eventually fail, though. Today, I came to the end of that rope, and had the meltdown that apparently I very much needed, and came fcae to face with the beast inside. As I was held in the firm security of my beloved's arms, I circled with the beast, eyeing it as it snarled and paced and groaned. The more I talked about what I felt, the clearer the beast became, until I could finally give it a name.
Fear.
Not just a specific fear, or a basic, straight-forward fear. No, this beast was much more complex and inexplicable than that. It was fear of living, of the torture of the unknowns of each day, each hour, each moment. It was the agony of never knowing, always anxious for what could be. It was the painful ache of knowing that nothing is a given, whether you mean for the good or for the bad. You might suppose fear of dying was involved, but much much less than you'd suppose. No, much more was the fear of how long I would have to endure these uncertainties. Just imagine... the rest of my life, forty or fifty years if I'm "lucky", with every day wondering when my disease will strike, and in what way, and to what degree. Wondering if this will be what kills me. Wondering when that might happen. Wondering what it will take from me. Wondering how long anything will last, whether it is painful or relieved. Every. Day. For fifty years. Living in fear.
This is the fear that runs bone-deep in me, that permeates everything, whether I will it to or not. Whether I'm aware of it or not. No wonder I'd been struggling so hard of late.
The fear is back in its cage now, for the time being. It will never go away, though it might fade to a shadow for a time. Even then, it will still whisper in the shadows of my heart, a subtle counterpoint to all the ups and downs of my daily life. Acknowledging it and allowing it out takes away some of the power it holds over me, though. It blunts those claws, and muffles those roars. Some of the restlessness and pressure eases by knowing my foe's name. But it never will leave me, I don't think. There will always be a taste of it, even in my calmest and most confident moments. As my husband pointed out, it is not a matter of being weak or cowardly. It is a part of human nature, to be afraid of trials you know are coming, but cannot predict.
So I will go on being human. I will hupomeno, endure. I will find strength I did not know I had, or borrow my husband's when I cannot find my own. I will learn to live with the fear, to let it loose when it threatens to take control, and to circumvent it in order to keep living and moving forward. Fear is powerful, but it will not rule me.
Tuesday, April 12, 2016
Tandem Diving
Post Soundtrack: Dive by Salvatore
Dealing with an illness is indescribably difficult. Something about facing sickness causes an odd, reserved space within a person that is deeply private and not easily shared. Although the stereotype of a chronically ill person is that they are needy, helpless, and even lazy, that stereotype is about as far from the truth as it can get. It seems that when facing sickness that is completely out of one's control, the result is to buckle down, shut up, and try to pull through as best one can without complaint or help. I wish I knew why that was, but I've seen so many attempt it, myself included.
There is this wordless inner drive to do my best on my own. I don't want to admit when I am hurting. I don't want to reveal that I feel bad, and don't want to try and explain what that means. There are no words sometimes for that "blech" feeling, it just is. There are times I don't want to ask for help, though I should, because asking for help means I can't do it, when I should be able to do it by myself... if I were healthy. Perhaps that's the key there... the aching longing to be healthy again. It is a never-ending desire to be normal again, to be able to act and feel and move and think like I did before my illness struck. That haunting desire entices me to pretend that I'm healthy again, to ignore the warnings my body is giving me, to act out the parody that it will inevitably become. It's a vicious cycle, since not listening to my body equals flares and setbacks that are dead weight to a grieving and depressed soul.
This song is how my heart feels when I turn to my husband for help. "I don't wanna drown tonight," is so apropos. I drown in my symptoms. I drown in my emotions. I drown in my struggles. I drown in my perceived failures. I try to face it by myself a lot of the time, but there comes a point when I just can't anymore. Each verse starts with that feeling of teetering on the edge of being incapable of dealing with it on my own anymore. "I've been doing it myself, but now I need some help." This sort of admission is terribly difficult. Admitting that I need help means I'm not enough, that I can't, that I'm defeated. That idea aches through me unspeakably. No one has shamed me, nor accused me, nor been disappointed in my failure to live as if I'm healthy, but I do it plenty to myself.
But I am thankful that I am not alone. I don't have to face any of this on my own. "Ain't nobody know me better than you know me," the song says, and that is so true of my husband. "But I know we can swim." He is always there for me, whether it is to carry something for me, to help me get up, or to hold me when it's just too much, offering his emotional strength as a bulwark. But I would never require he do all this for me, so the question asked in the song, "Tell me, would you dive with me?" represents my call for his help, my plea that he stay with me, even though I know he will already. It is both an appeal and an acknowledgment of him as my partner in my illness.
Without my husband, I would be lost at sea. Holding myself away from him for his sake would only hurt the both of us. He wants to be there for me, and I need him so desperately. So we have come to a point where we dance fluidly with and around my Lupus, together. We swim side by side as the storms on the sea of life buffet us. None of it can separate us, and careening along in tandem with my beloved, I will not drown.
Dealing with an illness is indescribably difficult. Something about facing sickness causes an odd, reserved space within a person that is deeply private and not easily shared. Although the stereotype of a chronically ill person is that they are needy, helpless, and even lazy, that stereotype is about as far from the truth as it can get. It seems that when facing sickness that is completely out of one's control, the result is to buckle down, shut up, and try to pull through as best one can without complaint or help. I wish I knew why that was, but I've seen so many attempt it, myself included.
There is this wordless inner drive to do my best on my own. I don't want to admit when I am hurting. I don't want to reveal that I feel bad, and don't want to try and explain what that means. There are no words sometimes for that "blech" feeling, it just is. There are times I don't want to ask for help, though I should, because asking for help means I can't do it, when I should be able to do it by myself... if I were healthy. Perhaps that's the key there... the aching longing to be healthy again. It is a never-ending desire to be normal again, to be able to act and feel and move and think like I did before my illness struck. That haunting desire entices me to pretend that I'm healthy again, to ignore the warnings my body is giving me, to act out the parody that it will inevitably become. It's a vicious cycle, since not listening to my body equals flares and setbacks that are dead weight to a grieving and depressed soul.
This song is how my heart feels when I turn to my husband for help. "I don't wanna drown tonight," is so apropos. I drown in my symptoms. I drown in my emotions. I drown in my struggles. I drown in my perceived failures. I try to face it by myself a lot of the time, but there comes a point when I just can't anymore. Each verse starts with that feeling of teetering on the edge of being incapable of dealing with it on my own anymore. "I've been doing it myself, but now I need some help." This sort of admission is terribly difficult. Admitting that I need help means I'm not enough, that I can't, that I'm defeated. That idea aches through me unspeakably. No one has shamed me, nor accused me, nor been disappointed in my failure to live as if I'm healthy, but I do it plenty to myself.
But I am thankful that I am not alone. I don't have to face any of this on my own. "Ain't nobody know me better than you know me," the song says, and that is so true of my husband. "But I know we can swim." He is always there for me, whether it is to carry something for me, to help me get up, or to hold me when it's just too much, offering his emotional strength as a bulwark. But I would never require he do all this for me, so the question asked in the song, "Tell me, would you dive with me?" represents my call for his help, my plea that he stay with me, even though I know he will already. It is both an appeal and an acknowledgment of him as my partner in my illness.
Without my husband, I would be lost at sea. Holding myself away from him for his sake would only hurt the both of us. He wants to be there for me, and I need him so desperately. So we have come to a point where we dance fluidly with and around my Lupus, together. We swim side by side as the storms on the sea of life buffet us. None of it can separate us, and careening along in tandem with my beloved, I will not drown.
Tuesday, April 5, 2016
The Tiger in the Cage
Post Soundtrack: I Give Up by Elijah Bossenbroek
You are the tiger in the cage.
The lion in the muzzle.
Your wild spirit is being drained
Where others cannot see it.
I watch as the jesses are tied on
And the hood pulled over terrified eyes.
I watch the lasso fall and pull tight
Around a throat pulsing with fear and confusion.
I watch as screams of defiance are choked off
By the cold, cruel hand of reality.
Don't let that spirit die,
Don't let it tie you down!
Learn to live free and wild
Though hobbled by agonies I well know.
Don't let it take the heart out of you.
Let the fury come.
Fight and claw for what is yours.
Call out for aid from those you love.
Sing and laugh and challenge the wind
Find your voice and cry aloud!
Show your rage, embrace your fear,
Find the light around you,
Savor glories passed over before.
Learn to live, learn to thrive,
Learn to soar and ride high,
Lean on others, search out the love
Grasp what matters in each day
And see the good that awaits you in the dark.
Could the truth maybe, possible be...
That two broken wings can make us whole?
You are the tiger in the cage.
The lion in the muzzle.
Your wild spirit is being drained
Where others cannot see it.
I watch as the jesses are tied on
And the hood pulled over terrified eyes.
I watch the lasso fall and pull tight
Around a throat pulsing with fear and confusion.
I watch as screams of defiance are choked off
By the cold, cruel hand of reality.
Don't let that spirit die,
Don't let it tie you down!
Learn to live free and wild
Though hobbled by agonies I well know.
Don't let it take the heart out of you.
Let the fury come.
Fight and claw for what is yours.
Call out for aid from those you love.
Sing and laugh and challenge the wind
Find your voice and cry aloud!
Show your rage, embrace your fear,
Find the light around you,
Savor glories passed over before.
Learn to live, learn to thrive,
Learn to soar and ride high,
Lean on others, search out the love
Grasp what matters in each day
And see the good that awaits you in the dark.
Could the truth maybe, possible be...
That two broken wings can make us whole?
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