"Fuck MS"
That is pretty much how I have been feeling lately.
I suppose I am naive. I am new this whole experience and things are not so bad so far. I can afford to cuss at my torturer. When it has me in its choke hold, I will be pleading for mercy I'm sure. Right now I am playing hard to get.
So I have this thing.
Half of the anxiety and fear is the not knowing. Now I have a name for this. Now I have had some experiences to understand what this feels like and how to adapt when I need to do so. I know, however, that there is so many more "surprises" in store.
For example, I was shocked by my losing my ability to talk normally that day I was immersed in the hot summer sun. It is one thing to read about symptoms in a book as some abstract statement next to a bullet point. It is quite another to have the words come true. I was frightened.
I despise being frightened. Anger and conscious denial seems a better path for now. Part of me raises my fists to the heavens and declares, "Bring it on!" Part of me wants to be broken so I can rise up again like some mutant superheroine from the comic books. "You really want to mess with me? Give me your best! It will only make me stronger."
The psychological process of acceptance can be a long road. Right now I prefer to stay here where I feel emotionally empowered, however faulty my feelings may be. There will come a time when I am on my knees and I will deal with that when it comes.
I own this solitary moment in time and nothing is gonna change my world.
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
Sunday, July 29, 2007
Sunday, July 22, 2007
The Sunday Meme
Okay people...let us depart from the world of MS for a minute and think of other things. I know I need to. Selective amnesia...yeah that's the ticket. Let us have a spot of fun. And so I introduce to you....my readers who number in the single digits....the Sunday Meme. It is very simple...I ask questions and you answer them.
1. Have you ever worn green socks?
2. Have you ever eaten an insect?
3. What was the last thing you did in the nude?
4. If you owned a billboard what would it say?
5. What is the oldest thing in your fridge right now?
That should do for now...
I will make this a regular thang...
1. Have you ever worn green socks?
2. Have you ever eaten an insect?
3. What was the last thing you did in the nude?
4. If you owned a billboard what would it say?
5. What is the oldest thing in your fridge right now?
That should do for now...
I will make this a regular thang...
Saturday, July 21, 2007
looking for links!
If you know anyone who is currently blogging about MS...let me know. I would like to add their link to my fodder here.
How many people in the world have MS anyway? What are the stats?
What made you decide to blog about Multiple Sclerosis?
How many people in the world have MS anyway? What are the stats?
What made you decide to blog about Multiple Sclerosis?
Thursday, July 19, 2007
thursday stream
life is so funny how it speeds up and then slows down to these raw glimpses of light and shadow. today i was watching how everything glows when it is immersed in light. the pavement, an old plastic bag, a shimmery leaf, the back of a chair....can all radiate with light. i guess we can too. maybe this is why i am so attracted to those fairy tale paintings full of cherubs and saintly figures. it is the light.
i find my memories in these sensory fragments. the heat of the pavement in the driveway reminds me of childhood and bare toes upon the hard surface. as children we felt things more. like the feel of dewy grass or touching spiderwebs. even colors were richer...and more pure. i remember the primary colors of playgrounds...almost garish to my adult eyes. but as a child these colors were beacons for fun and delight. a red cherry popsicle dripping from your sticky hands. the bluest blue eyes of your doll. the green of construction paper shamrocks. the yellows of suns hand painted from gloppy finger paints.
oh and smells! like new playdough. or cinnamon in snickerdoodle cookies. or the smell of new school books as you cracked the spine open for the first time. the way your dog smelled when you nuzzled up to him. the smell of a baseball glove and the wafts of dirt from the field. or how about the smell of rusty rain as it sprayed inside your grandmother"s screen door?
it is all there still....visions and smells and touches of hope. hope of fun and life and times where you just forget yourself.
the light reminds me....
i am still alive to enjoy this.
i find my memories in these sensory fragments. the heat of the pavement in the driveway reminds me of childhood and bare toes upon the hard surface. as children we felt things more. like the feel of dewy grass or touching spiderwebs. even colors were richer...and more pure. i remember the primary colors of playgrounds...almost garish to my adult eyes. but as a child these colors were beacons for fun and delight. a red cherry popsicle dripping from your sticky hands. the bluest blue eyes of your doll. the green of construction paper shamrocks. the yellows of suns hand painted from gloppy finger paints.
oh and smells! like new playdough. or cinnamon in snickerdoodle cookies. or the smell of new school books as you cracked the spine open for the first time. the way your dog smelled when you nuzzled up to him. the smell of a baseball glove and the wafts of dirt from the field. or how about the smell of rusty rain as it sprayed inside your grandmother"s screen door?
it is all there still....visions and smells and touches of hope. hope of fun and life and times where you just forget yourself.
the light reminds me....
i am still alive to enjoy this.
Tuesday, July 17, 2007
Scenes from a life...take one
emotions seem like stunt doubles. oookay...emotion needed here. bring in the adrenaline. should we go for fear or anger this time? how about tears. no let's try inappropriate laughter instead. what would work best for this scene?
imagine this...
you are out and about seemingly enjoying a lovely summer day. the heat seems tolerable but actually it is frying your brain with each minute you are out in it. one minute you are smiling, carefree, examining bugs under a magnifying glass with your child. and the next...you find that one of your legs won't work right. it is so stiff you have to hobble. after the leg, the arm goes next and especially your hand. you find it is weak and you can't quite grasp things well. you finally understand that you need to get out of the heat and fast. by then it is too late. you get into the furnace of a car that has been sitting in the sun all day. your vision is next to go. you reach for the car door and see double. even the air conditioning is too late. you are like the scarecrow from the wizard of oz where assorted body parts fall to the road side. you scramble to keep your stuffing intact but it is of no use.
it is incomprehensible that anything else would go. that is when your ability to talk suddenly leaves you. the words pile up in your mouth like an over burgeoning closet. your tongue is thick and stupid and lies there. you hesitate and stammer like a drunk on a bender. the words slur out of your mouth for all to hear and view your disability.
all because of a few hours of sunshine.
imagine this...
you are out and about seemingly enjoying a lovely summer day. the heat seems tolerable but actually it is frying your brain with each minute you are out in it. one minute you are smiling, carefree, examining bugs under a magnifying glass with your child. and the next...you find that one of your legs won't work right. it is so stiff you have to hobble. after the leg, the arm goes next and especially your hand. you find it is weak and you can't quite grasp things well. you finally understand that you need to get out of the heat and fast. by then it is too late. you get into the furnace of a car that has been sitting in the sun all day. your vision is next to go. you reach for the car door and see double. even the air conditioning is too late. you are like the scarecrow from the wizard of oz where assorted body parts fall to the road side. you scramble to keep your stuffing intact but it is of no use.
it is incomprehensible that anything else would go. that is when your ability to talk suddenly leaves you. the words pile up in your mouth like an over burgeoning closet. your tongue is thick and stupid and lies there. you hesitate and stammer like a drunk on a bender. the words slur out of your mouth for all to hear and view your disability.
all because of a few hours of sunshine.
Sunday, July 15, 2007
Stream of consiousness
i feel like writing today but not the pretty formal type of writing. i just want to flow.
i am depressed today. alert the media.
it helps to write.
trust. trust is so important when you feel sad. who to go to? who can you trust to disrobe emotionally? who will not look at you like a freak? who will not try to solve your problems and just listen? who will not judge? who will allow you to just be you...ugly insides and all? who is not going to point a finger towards pills or paid listeners. dammit. i want a friend.
it is bad enough to feel sad. it is worse to wander around with a note in a bottle...holding onto it because you fear nobody is going to read it anyway.
so sometimes talking to oneself is not such a bad idea.
maybe i am grieving? i don't really know. i can tell you that i am personally tired of grieving and tears. i have had entirely too much of this in my life. i would rather have a party with a big cake...lots of icing.
i told a friend that if i did not get the diagnosis of MS then i wanted to celebrate...and i added that if i DID get the diagnosis i also wanted to celebrate. why should MS rob me of the potential to celebrate. yeah...i want a damn cake. and presents too. it seems that if one is already happy...why is there a need for celebration...it is when we are sad that we are in more need of cheer.
today i am crying and i don't even know why. why must we always explain tears? they just...happen.
i am sad.
that's all.
maybe me writing this will help someone else. hey...you are allowed to be sad about this. it is okay. cry. write. scream. do what you have to do. once you have gotten it all out, you will have cleared the way for something new.
hope....
i am depressed today. alert the media.
it helps to write.
trust. trust is so important when you feel sad. who to go to? who can you trust to disrobe emotionally? who will not look at you like a freak? who will not try to solve your problems and just listen? who will not judge? who will allow you to just be you...ugly insides and all? who is not going to point a finger towards pills or paid listeners. dammit. i want a friend.
it is bad enough to feel sad. it is worse to wander around with a note in a bottle...holding onto it because you fear nobody is going to read it anyway.
so sometimes talking to oneself is not such a bad idea.
maybe i am grieving? i don't really know. i can tell you that i am personally tired of grieving and tears. i have had entirely too much of this in my life. i would rather have a party with a big cake...lots of icing.
i told a friend that if i did not get the diagnosis of MS then i wanted to celebrate...and i added that if i DID get the diagnosis i also wanted to celebrate. why should MS rob me of the potential to celebrate. yeah...i want a damn cake. and presents too. it seems that if one is already happy...why is there a need for celebration...it is when we are sad that we are in more need of cheer.
today i am crying and i don't even know why. why must we always explain tears? they just...happen.
i am sad.
that's all.
maybe me writing this will help someone else. hey...you are allowed to be sad about this. it is okay. cry. write. scream. do what you have to do. once you have gotten it all out, you will have cleared the way for something new.
hope....
Thursday, July 5, 2007
The Bully
Remember the mean kids at school who would put a tack on your chair or trip you and say..."Have a nice fall!"? Well, my Multiple Sclerosis is one of the meanest kids on the block.
I was out today in the sunshine (and heat) taking a walk with my son and our new doggy. Something strange happens when I am exposed to heat. Symptoms come out of the woodwork like roaches who wait until dark to appear. I was walking and even trotting along just fine when my right leg began to forget how to work. My mind was ordering it to do what it needs to do in order to walk, but it would not obey. Walking is something you take for granted. You don't often think about the mechanics of it. But today I found myself doing just that. I would take a big step and my lump of a leg would thump down in unusual places, like to the right of me instead of forward. My foot began to drag and the tip of my tennis shoe scraped the pavement of the path we were walking on.
I was becoming angry. How dare this MS bully ruin my time with my son!
My anger quickly turned to humility when I was just moments from home and I fell face down into an unlevel grassy patch.
It was then when my son who has special needs decided to show his displeasure at my lack of grace, pulled down the back of his pants and mooned me.
If MS were truly a person I can see their face now, red and sweaty, with laughter. Oh to just give it a kick in the groin!
I was out today in the sunshine (and heat) taking a walk with my son and our new doggy. Something strange happens when I am exposed to heat. Symptoms come out of the woodwork like roaches who wait until dark to appear. I was walking and even trotting along just fine when my right leg began to forget how to work. My mind was ordering it to do what it needs to do in order to walk, but it would not obey. Walking is something you take for granted. You don't often think about the mechanics of it. But today I found myself doing just that. I would take a big step and my lump of a leg would thump down in unusual places, like to the right of me instead of forward. My foot began to drag and the tip of my tennis shoe scraped the pavement of the path we were walking on.
I was becoming angry. How dare this MS bully ruin my time with my son!
My anger quickly turned to humility when I was just moments from home and I fell face down into an unlevel grassy patch.
It was then when my son who has special needs decided to show his displeasure at my lack of grace, pulled down the back of his pants and mooned me.
If MS were truly a person I can see their face now, red and sweaty, with laughter. Oh to just give it a kick in the groin!
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