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Oct. 15th, 2007
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When I count them with all ten fingers...
Oct. 15th, 2007 06:28 pm"Whenever I have received a serious diagnosis, I was stunned, then anguished as I recounted my diagnosis to my family, explaining to them something I didn't fully understand and trying to reassure them while I was quaking at the prosect of what was to come. Each time I have stood in awe of how much energy it takes to get from the bad news to actually starting on the return path to health: figuring out whether my diagnosis was right and what course of treatment to take - slogging through the tests, searching the internet, getting to know all the new doctors and their receptionists, arranging for coverage by my insurance, comforting my parents -- all while feeling somewhere between extremely anxious and downright terrible."
"Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country; I don't know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home."
--Jessie Gruman, Aftershock
***
Dr. Gruman spoke about cancer and its devastations. But these quotes can apply to just about anything.
"Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country; I don't know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home."
--Jessie Gruman, Aftershock
***
Dr. Gruman spoke about cancer and its devastations. But these quotes can apply to just about anything.
I'm doing that thing with my left arm again.
Sigh.
When you have spastic cerebral palsy, the arm thing is almost guaranteed. Whichever arm is affected will draw up against the body, the wrist will bend, the fingers will curl, the hand will become tense and claw-like. The entire limb may seem limp and useless, but it is actually suffering little muscle spasms that cause it to tense up, to clench, to become painful. You really cannot control it, unless you really really concentrate.
Sometimes I am too tired to concentrate. Sometimes the fibromyalgia sweeps over me like a tsunami crushing an entire city, laying skyscrapers flat, and leaves me utterly drained and I don't care if I walk like a gimp or if people stare. I just want the pain to stop then. Sometimes, after the epilepsy has slammed me with a complex partial seizure and I am left numb and shaking like a shipwrecked sailor tossed onto a deserted island, I don't want to remember to shift my weight to my left foot, I don't want to remember to turn my left foot in so the severe supination won't threaten to throw me off balance and lead to a potential sprain or worse, I don't want to remember to put my left arm down and swing it normally. I don't want to concentrate on keeping my muscles relaxed from the tension of hemiplegic spastic cerebral palsy, because I'm spending all my energy concentrating on keeping my muscles free from the aching burn of fibromyalgia. I'm spending all my energy concentrating on keeping my brain calm from the crackling storms of misfired neurons.
The funny thing about seizures? I am unusually calm after many of them. This has recently been explained in conversation.
Sometimes my brain is so drained, sometimes it screams enough, enough... and I become as calm as still water.
It is something that many are familiar with, no matter the ailment.
You begin to relax, to calm down, to feel tranquil. You are back in the world, you are not injured, you are perfectly safe. It's all okay.
Then, slowly, gradually, eventually, maybe... your muscles begin to relax, to release themselves from the prison of their own agony. We're okay, they think. We have no more reason to spasm, to tense, to clench, to scream.
But of course, it doesn't always work like that. Sometimes it just doesn't end.
And so you lie in bed, drugged with muscle relaxants and pain relievers, curled up under a heating blanket, sipping warm tea, breathing slowly and gently in and out, meditating deeply and powerfully, imagining pure light and pure energy flowing from the top of your head to the bottom of your feet, sweeping away all pain and tension. You stop to touch the meridians, the channels, that are significant to your pain points and tension points. You imagine cool, clear, clean water, cleansing you, soothing you. A gentle, soft sun shines down on you, warming you, and then a sweet, soft moon takes its place, cooling you.
And then you find yourself asleep. And you dream. Sometimes you wake up suddenly, in pain, but manage to fall back asleep every time. When you wake up for real in the morning, you don't feel rested, you feel like you've barely slept, you feel like you've been run over. But it will be okay. You take your supplements and your medications, and you go about your day, and all the while you hold that image in your mind of that pure light and pure energy, that cool clear clean water, that gentle sun, that sweet moon.
Go to sleep. Repeat. Wake up. Repeat. Repeat, repeat.
And this is your life.
But it's okay.
It really, really is.
I'm happy. You know? I'm happy. I have... so much. I am thankful for so much. Great health insurance, awesome doctors, an amazing job with amazing coworkers. A wonderful life. My phenomenal husband, who is one of the greatest men I will ever know and my most powerful strength. My beautiful best friend and heart-sister, who shines brighter than angels against even her own darkness. My fantastic parents, who raised me to understand, respect, compromise with, and fight tooth and nail with my disabilities and disorders. All my friends, who never let me forget who and what I truly am.
I don't feel sorry for myself. There is no pity.
There is only life, light, love, and strength.
Anyway. New episode of "Heroes" tonight. *happy*
Sigh.
When you have spastic cerebral palsy, the arm thing is almost guaranteed. Whichever arm is affected will draw up against the body, the wrist will bend, the fingers will curl, the hand will become tense and claw-like. The entire limb may seem limp and useless, but it is actually suffering little muscle spasms that cause it to tense up, to clench, to become painful. You really cannot control it, unless you really really concentrate.
Sometimes I am too tired to concentrate. Sometimes the fibromyalgia sweeps over me like a tsunami crushing an entire city, laying skyscrapers flat, and leaves me utterly drained and I don't care if I walk like a gimp or if people stare. I just want the pain to stop then. Sometimes, after the epilepsy has slammed me with a complex partial seizure and I am left numb and shaking like a shipwrecked sailor tossed onto a deserted island, I don't want to remember to shift my weight to my left foot, I don't want to remember to turn my left foot in so the severe supination won't threaten to throw me off balance and lead to a potential sprain or worse, I don't want to remember to put my left arm down and swing it normally. I don't want to concentrate on keeping my muscles relaxed from the tension of hemiplegic spastic cerebral palsy, because I'm spending all my energy concentrating on keeping my muscles free from the aching burn of fibromyalgia. I'm spending all my energy concentrating on keeping my brain calm from the crackling storms of misfired neurons.
The funny thing about seizures? I am unusually calm after many of them. This has recently been explained in conversation.
Sometimes my brain is so drained, sometimes it screams enough, enough... and I become as calm as still water.
It is something that many are familiar with, no matter the ailment.
You begin to relax, to calm down, to feel tranquil. You are back in the world, you are not injured, you are perfectly safe. It's all okay.
Then, slowly, gradually, eventually, maybe... your muscles begin to relax, to release themselves from the prison of their own agony. We're okay, they think. We have no more reason to spasm, to tense, to clench, to scream.
But of course, it doesn't always work like that. Sometimes it just doesn't end.
And so you lie in bed, drugged with muscle relaxants and pain relievers, curled up under a heating blanket, sipping warm tea, breathing slowly and gently in and out, meditating deeply and powerfully, imagining pure light and pure energy flowing from the top of your head to the bottom of your feet, sweeping away all pain and tension. You stop to touch the meridians, the channels, that are significant to your pain points and tension points. You imagine cool, clear, clean water, cleansing you, soothing you. A gentle, soft sun shines down on you, warming you, and then a sweet, soft moon takes its place, cooling you.
And then you find yourself asleep. And you dream. Sometimes you wake up suddenly, in pain, but manage to fall back asleep every time. When you wake up for real in the morning, you don't feel rested, you feel like you've barely slept, you feel like you've been run over. But it will be okay. You take your supplements and your medications, and you go about your day, and all the while you hold that image in your mind of that pure light and pure energy, that cool clear clean water, that gentle sun, that sweet moon.
Go to sleep. Repeat. Wake up. Repeat. Repeat, repeat.
And this is your life.
But it's okay.
It really, really is.
I'm happy. You know? I'm happy. I have... so much. I am thankful for so much. Great health insurance, awesome doctors, an amazing job with amazing coworkers. A wonderful life. My phenomenal husband, who is one of the greatest men I will ever know and my most powerful strength. My beautiful best friend and heart-sister, who shines brighter than angels against even her own darkness. My fantastic parents, who raised me to understand, respect, compromise with, and fight tooth and nail with my disabilities and disorders. All my friends, who never let me forget who and what I truly am.
I don't feel sorry for myself. There is no pity.
There is only life, light, love, and strength.
Anyway. New episode of "Heroes" tonight. *happy*
