I’m broken.
Don’t look too closely, you won’t be able to see it.
I can pass people in the street easily and they would think of me no differently than anyone else they have passed that day.
I’ve heard countless times how I look fine, how there doesn’t seem to be an issue.
My problems have been passed over because I don’t look like I’d have problems getting around by myself, eating, drinking or dressing.
I’ve had a medical professional tell me I was a typical young adult when I expressed that I would struggle to get out of bed, I was dismissed as being ‘lazy’ despite my underlying condition.
It’s in the human nature to judge on first appearance, I firmly believe anyone who claims they don’t is a liar. Everyone has at one point and denying it won’t make it any less true, you can feel ashamed for doing it and it doesn’t have to be a regular occurrence, but it happens to us all.
People have given me disapproving looks, or ones of dismissal, when I say in basic conversations that I can understand or at least sympathise with them a little. I’ve lost count of the amount of times people try to joke it off because of my age.
“But you’re so young,” is a common comment.
Usually I try to laugh it off and joke around about how I don’t feel it sometimes, but I always regret not correcting them. I sometimes wonder if they think I’m being pandering or condescending, perhaps I’ve even insulted some.
If I did explain would it even matter? Would they continue to believe I can’t understand because I don’t look like someone who could sympathise with the situation?
Perhaps I’m just making excuses.
Being broken isn’t always a physical break, you won’t always see my cracks but I can assure you they’re there. I’ve just mastered a way to hide my struggles; I keep to myself and don’t make it a point to constantly push my problem in people’s faces.
If it’s ever felt to anyone that I have then I apologise, it was never my intention.
I tire of having to reserve myself so much at times.
I wish I could keep up with other people.
I’ve come to learn to deal with the fact that I won’t.
But I live a good life and get the support I need when I need it.
I can smile and be perfectly fine whilst worrying that my cracks will get larger and no one will understand because I look fine.
I don’t want pity.
I just want people to understand that I’m broken.
And there’s nothing wrong with that
Showing posts with label myastheniagravis. Show all posts
Showing posts with label myastheniagravis. Show all posts
Saturday, 19 March 2016
Thursday, 17 March 2016
The Ragdoll by Hell.R.
I’m sat in pure darkness; the only source of light is coming
from the space underneath the thick wooden door across from me, the smallest
slither that barely shone onto the wooden floor.
My back is slumped against the wall as my hands lie
lifelessly by my sides, I want to move them but I can’t, I am no longer in
control of my own body.
My head is slumped against my right shoulder, I don’t have
the strength to hold it up by sheer will power, I tried for so long but gave up
a while ago.
My legs are sprawled out in front of me, the limbs covered
by long striped socks that do nothing to keep my feet from getting cold.
My dark eyes remain fixed on the door, only half open,
waiting for any sign of movement from the other side.
Time means nothing here, I can’t even estimate how long I’ve
been in here, days and weeks mean nothing anymore, it has all just become one
big blur. The only way to tell the passing of night to day is when the light
under the door disappears; it took a while to even figure that out.
I hadn’t seen any of my friends for so long, when had I
become so useless to them?
When I couldn’t move to my own accord?
When I lost all free will and could only sit in a room?
Lifeless like a ragdoll.
No one wants to be around someone who can’t keep up with
them, who offers no fun and who can only listen and respond when their throat
was strong enough to allow this person to speak for a few sentences, before
withering away into nothing but a rasp and that all still depended on if their
mouth would move to form actual words.
If my voice worked I would be calling out for help, it gets
so lonely in here. The only source of entertainment is my imagination but even
that runs thin after a while, eventually you simply revert back to your
memories of how everything used to be.
The further into the memories you get the more you begin to
imagine all the ‘what ifs’, how life could have been had you never become like
this. The restrictions of your new life as a ragdoll hit you full force and you
begin to miss things you never realised you cared about before, the things you
took for granted for years.
I can hear voices on the other side of the door now,
gradually getting louder.
Images flashed into my mind of the last visit I had, a group
of people in white and blue scrubs had come in and prominently opened my chest
up. Something had been removed as a man reassured me that everything would be
alright, the whole world was so blurry that I barely remember what happened but
I know these people in white visited me often.
A loud click resounds around the room, there’s nothing to
cushion the sound as I’m the only thing in this room. There are no decorations,
ornaments or any form of personality in the room, just white walls and a dark
wood floor.
Light soon floods inside, it’s blinding at first until
blurry shadowed figures take up space in the doorway. At first the sudden
brightness is blinding and causes my eyes to ache, it’s only a matter of
seconds before they adjust to the light and see all too familiar faces decorate
the blankness of the shadows.
I feel the corners of my mouth try to twitch into a smile as
I stare at my family, my parents and my brothers, each giving me a reassuring
smile themselves. Tears visibly pricked at my mum’s eyes as they roamed over my
form, slumped against the floor.
In a few large strides my dad and eldest brother had come to
either side of me, eagerly pulling me up to stand. They lifted me by the arms
and held me there, so my feet lightly touched the floor but I didn’t have to
put any weight on my weak legs, for now standing by myself was impossible.
My mum walked over and briskly brushed off the collected
dust and dirt with her hand, looking up at me every now and then with a look of
relief.
“Don’t worry, everything will be okay,” she said softly,
soothingly.
And I knew it would be, with the love and help of my family
and friends, I knew that eventually I could become more than a worthless,
lifeless ragdoll and could become a real girl again.
Ragdoll Disease
Keeping in tune with the ragdoll theme that started with my review of a book called The Ragdoll yesterday, I feel like posting my own short story of the same name.
Before I do that I will give it a little background in the shortest way I can, it's a rather long story with all the details.
So the short version is that when I was twelve I caught a chest infection that developed into pneumonia and this eventually brought out a recessive neuromuscular condition I was diagnosed with called Myasthenia Gravis.
This is essentially a condition that affects the muscles and weakens them, it's rare that it effects women under the age of forty but anyone can have it and not realise until something brings it out. Some people have a lesser case where it'll just affect their face, others have it more severe where it can affect their whole body.
Unfortunately I had the latter.
Anyway many Prednisolone and Pyridostigmine doses (among many other medication trials, an operation and a shock test) later my MG went into remission, I was about fourteen or fifteen at the time and I'm doing much better with very few slip ups.
Now Myasthenia Gravis is also known as The Ragdoll disease due to how it affects the muscles, and I always had this penchant for drawing and writing, not meaning I was great at it or anything but I just enjoyed it.
Usually I focus more on horror, myths and legends from around the world (and...Supernatural fanfiction...) but I wanted to do something that was kind of fairytale like but still a general account of my experience, and thus I came up with an idea to write a short story and drew a small picture to go with it.
This eventually led to a longer version with no picture, and I will share both here.
The picture and original story will go on here and I'll make a new post with the new, updated story.
The original ragdoll picture created in 2011:
Young and innocent, she didn't have a care in the world, but innocence blinded her to the act fate was about to bestow on her.
With a cruel spell the young girl was turned into a ragdoll, although now eternally youthful she had lost all strength and relied on others.
Slowly people began to leave her, finding no use for something that could barely move.
As people left her behind there was nothing she could do but to stay in the dark room they had pushed her into, sitting alone she waits in the dark for someone else to come and play with her once more.
Before I do that I will give it a little background in the shortest way I can, it's a rather long story with all the details.
So the short version is that when I was twelve I caught a chest infection that developed into pneumonia and this eventually brought out a recessive neuromuscular condition I was diagnosed with called Myasthenia Gravis.
This is essentially a condition that affects the muscles and weakens them, it's rare that it effects women under the age of forty but anyone can have it and not realise until something brings it out. Some people have a lesser case where it'll just affect their face, others have it more severe where it can affect their whole body.
Unfortunately I had the latter.
Anyway many Prednisolone and Pyridostigmine doses (among many other medication trials, an operation and a shock test) later my MG went into remission, I was about fourteen or fifteen at the time and I'm doing much better with very few slip ups.
Now Myasthenia Gravis is also known as The Ragdoll disease due to how it affects the muscles, and I always had this penchant for drawing and writing, not meaning I was great at it or anything but I just enjoyed it.
Usually I focus more on horror, myths and legends from around the world (and...Supernatural fanfiction...) but I wanted to do something that was kind of fairytale like but still a general account of my experience, and thus I came up with an idea to write a short story and drew a small picture to go with it.
This eventually led to a longer version with no picture, and I will share both here.
The picture and original story will go on here and I'll make a new post with the new, updated story.
The original ragdoll picture created in 2011:
The original story (as I know my handwriting is not all that readable!) :
There once was a young girl who was loved by many.Young and innocent, she didn't have a care in the world, but innocence blinded her to the act fate was about to bestow on her.
With a cruel spell the young girl was turned into a ragdoll, although now eternally youthful she had lost all strength and relied on others.
Slowly people began to leave her, finding no use for something that could barely move.
As people left her behind there was nothing she could do but to stay in the dark room they had pushed her into, sitting alone she waits in the dark for someone else to come and play with her once more.
Subscribe to:
Posts (Atom)
