Let downs happen
I should be used to this feeling
Yet it tests me again and again
Wondering what I've done wrong
Time after time, it's gotta be my fault
Because the conclusion is always the same
I've gotta be the one to blame
Cause I've chased these tumble weeds
And forgotten where I was
Broken pieces fall apart as I run
After things that shimmer and shine
I want to be a part of it
To move like a shadow across the ground
It's like screaming without sound
What I'd give to not have false hope
Because when disappointment sets in
and disapproval shows its face
I sit here wanting to know
How many days it'll be this time
Fighting addictions, trying to hold back
Each time the harder they attack
The anger rises within me
And I need to let it out somehow
So inward it goes
Letting myself be the one I hate
Cause see you always get the pedestals
Because I don't want you to sink
And I'll, I'll stay awake and spill my ink
Sleep soundly tonight
as I try to count all those sheep
Fixated and how I can fix me up
Make you proud one day
Maybe promises will mean more
But really it's probably just a waste of time
Because you'd never look at my rhymes.
Monday, October 28, 2013
Saturday, October 19, 2013
Collage! I go there!
Being a professional sick kid isn't that great of a career. I wasn't that ill as
a small child and I think that's what bothers my family about it all most. I was
a bit too tall and skinny but otherwise a pretty average kid.
Then age eleven got diagnosed with my first health issue (MVP). And it seemed as
almost every year increased another issue came to join. So I went from being
fairly healthy to needing meds all the time and tiring out way too early. Which
leads me to where I am now. Currently in the process of getting a full diagnoses on
why my brain has seizures. I laugh it off with people and take the jokes as they
come.
Lately though, it has been a struggle. Still adjusting to how drastically
one's life changes. I mean how do you go from being a fairly healthy twenty two
year old to not being able to do many things and needing constant drugs to keep your
brain on the right path? If someone would have told me a year ago that I
wouldn't be able to drive again much less watch an episode of television with a
friend I wouldn't believe them. But alas, here I am struggling to write words
with proper spelling and dropping on the floor almost weekly.
The worst part for me is the uncertainty of the medication. Some days I feel almost normal (well as
normal as can be for now), being able to dress and go to work or school and
not being exhausted all the time. Some days there isn't much pain to it at all.
Then there are bad days, days that my body is too tolerant to medication or
there wasn't enough sleep or proper hydration, and I need to be monitored
because any moment I could have another seizure and injure myself. Tonight I lay
up past bed time because I can't wrap my brain (or the parts that work right at
least) around the idea of being like this forever. I know from reading and
talking to others it takes a long time to find the proper medication. I also
know that there will be parts of my memory that won't ever be the same.
With this although is the fact that when you have seizures that aren't managed
you can't freaking go anywhere. I dare you to spend just one day looking at all
the things that flash or blink in your world around you. (My biggest trigger is
blinking lights so they must be avoided as much as possible). Or spend a night
walking down the street wearing dark sunglasses (I spend my life in sun glasses
because of how sensitive my eyes have gotten).
I only say these things because I was so unaware of how hard it is to have this
disability and how little society cares about making my surroundings safe for
me. I still try to function in day to day activities. I take the bus to
college and get rides to and from work. Even still I have to have some sort of
checking in on to make sure nothing happens. Can't shower or cook without
someone awake and around. I went from being told to finish growing up and work
on independence to being told temporarily (but possibly forever) I have to be
dependent on others.
I don't want this to be just a whinny post as I work on transitioning to what is going on, I want to admit my ignorance to how much we don't think about other disabilities. How little bit of my effort goes to helping others. I mean I became more vocal about doors at Buffalo State college after being on crutches for a while. Their handicapped doors don't always work and they would shut off some of the elevators in buildings that didn't use them as much. But, it wasn't just my voice that was heard then, there are many students that have some physical disability (even if temporary).
What I learned this year going into college with seizures is that many staff advise you to take medical leave or drop out of school. Which to me seems ridiculous. I mean, like my whole world already got shaken upside down, I want some stability and to be able to do things in pace with people my age. I knew it would be a challenge (Oh is it ever!), but I'd like to try to keep trying and pressing on towards a degree. When it comes down to it though, the thing that bothered me most was the fact that I get asked all the time why I haven't just taken a leave of absence and get almost pressured to take time off.
What I hear from that is "you can't keep up and do the tasks to meet a diploma, you're not fit for college". I have asked what should I be doing with my time? Because, frankly in the professional world, you need a degree to get a career. Should I be stuck working job to job and trying to find a place that will be nice about my "special needs".
Honestly I love my professors this semester; they all know I haven't found the right medication and still have seizures. They have all met with me one on one and still see my desire to maintain decent grades in my classes. One professor "adapted" the syllabus to "fit my needs", this leads to me having to write a seven page paper instead of a one page paper and a short power point presentation. I am ever nervous about having to complete the task but am so grateful that the professor took it all at face value and wanted to challenge me deeper than the rest of the students. Now thankfully I've had this professor in the past and they understand that I am able to complete a task like that even with my "disability".
Even though I can't handle the stimulation of lights during class doesn't mean I can't handle the rest of the criteria; my professors notice this, the disability's staff notice this, the dean of students notice this; and yet I still get told by other staff to leave if I can't handle the atmosphere of college. I want to stay in college and continue to try to get a degree, even if this seizure disorder never gets fixed, even if it takes me twice as long to complete, because I still have the ambition to prove to myself (and others) that I can do it, that no disability will stop anyone from a sense of normality.
a small child and I think that's what bothers my family about it all most. I was
a bit too tall and skinny but otherwise a pretty average kid.
Then age eleven got diagnosed with my first health issue (MVP). And it seemed as
almost every year increased another issue came to join. So I went from being
fairly healthy to needing meds all the time and tiring out way too early. Which
leads me to where I am now. Currently in the process of getting a full diagnoses on
why my brain has seizures. I laugh it off with people and take the jokes as they
come.
Lately though, it has been a struggle. Still adjusting to how drastically
one's life changes. I mean how do you go from being a fairly healthy twenty two
year old to not being able to do many things and needing constant drugs to keep your
brain on the right path? If someone would have told me a year ago that I
wouldn't be able to drive again much less watch an episode of television with a
friend I wouldn't believe them. But alas, here I am struggling to write words
with proper spelling and dropping on the floor almost weekly.
The worst part for me is the uncertainty of the medication. Some days I feel almost normal (well as
normal as can be for now), being able to dress and go to work or school and
not being exhausted all the time. Some days there isn't much pain to it at all.
Then there are bad days, days that my body is too tolerant to medication or
there wasn't enough sleep or proper hydration, and I need to be monitored
because any moment I could have another seizure and injure myself. Tonight I lay
up past bed time because I can't wrap my brain (or the parts that work right at
least) around the idea of being like this forever. I know from reading and
talking to others it takes a long time to find the proper medication. I also
know that there will be parts of my memory that won't ever be the same.
With this although is the fact that when you have seizures that aren't managed
you can't freaking go anywhere. I dare you to spend just one day looking at all
the things that flash or blink in your world around you. (My biggest trigger is
blinking lights so they must be avoided as much as possible). Or spend a night
walking down the street wearing dark sunglasses (I spend my life in sun glasses
because of how sensitive my eyes have gotten).
I only say these things because I was so unaware of how hard it is to have this
disability and how little society cares about making my surroundings safe for
me. I still try to function in day to day activities. I take the bus to
college and get rides to and from work. Even still I have to have some sort of
checking in on to make sure nothing happens. Can't shower or cook without
someone awake and around. I went from being told to finish growing up and work
on independence to being told temporarily (but possibly forever) I have to be
dependent on others.
I don't want this to be just a whinny post as I work on transitioning to what is going on, I want to admit my ignorance to how much we don't think about other disabilities. How little bit of my effort goes to helping others. I mean I became more vocal about doors at Buffalo State college after being on crutches for a while. Their handicapped doors don't always work and they would shut off some of the elevators in buildings that didn't use them as much. But, it wasn't just my voice that was heard then, there are many students that have some physical disability (even if temporary).
What I learned this year going into college with seizures is that many staff advise you to take medical leave or drop out of school. Which to me seems ridiculous. I mean, like my whole world already got shaken upside down, I want some stability and to be able to do things in pace with people my age. I knew it would be a challenge (Oh is it ever!), but I'd like to try to keep trying and pressing on towards a degree. When it comes down to it though, the thing that bothered me most was the fact that I get asked all the time why I haven't just taken a leave of absence and get almost pressured to take time off.
What I hear from that is "you can't keep up and do the tasks to meet a diploma, you're not fit for college". I have asked what should I be doing with my time? Because, frankly in the professional world, you need a degree to get a career. Should I be stuck working job to job and trying to find a place that will be nice about my "special needs".
Honestly I love my professors this semester; they all know I haven't found the right medication and still have seizures. They have all met with me one on one and still see my desire to maintain decent grades in my classes. One professor "adapted" the syllabus to "fit my needs", this leads to me having to write a seven page paper instead of a one page paper and a short power point presentation. I am ever nervous about having to complete the task but am so grateful that the professor took it all at face value and wanted to challenge me deeper than the rest of the students. Now thankfully I've had this professor in the past and they understand that I am able to complete a task like that even with my "disability".
Even though I can't handle the stimulation of lights during class doesn't mean I can't handle the rest of the criteria; my professors notice this, the disability's staff notice this, the dean of students notice this; and yet I still get told by other staff to leave if I can't handle the atmosphere of college. I want to stay in college and continue to try to get a degree, even if this seizure disorder never gets fixed, even if it takes me twice as long to complete, because I still have the ambition to prove to myself (and others) that I can do it, that no disability will stop anyone from a sense of normality.
Thursday, June 6, 2013
Coordinating Connections
Maybe life isn't about an end point
But how you draw your map
Showing where you cross paths
And where there are trips and traps
Letting others know where is safe
And where to meet
Like suggesting new clothes
Or a good place to eat
Maybe our stories have to deal
With less of our inside
And more to do with
Who comes along side
Do we need to change
Our views and perspective
Opening up and allowing
Our minds to be receptive
And intake everything around
To use our senses and really feel
Allow our hearts to know
Joy and pain and how to deal
Let your guard down
Learn to experience and give
Help others how you can
Let yourself truely live
So I guess I want you to
Give people more than just a look
Because you never know who you'll impact
And be a character in their life book
So much comes from relationships
So give others a second chance
Because life can change so much
From a friendly glance
But how you draw your map
Showing where you cross paths
And where there are trips and traps
Letting others know where is safe
And where to meet
Like suggesting new clothes
Or a good place to eat
Maybe our stories have to deal
With less of our inside
And more to do with
Who comes along side
Do we need to change
Our views and perspective
Opening up and allowing
Our minds to be receptive
And intake everything around
To use our senses and really feel
Allow our hearts to know
Joy and pain and how to deal
Let your guard down
Learn to experience and give
Help others how you can
Let yourself truely live
So I guess I want you to
Give people more than just a look
Because you never know who you'll impact
And be a character in their life book
So much comes from relationships
So give others a second chance
Because life can change so much
From a friendly glance
Tuesday, March 12, 2013
these nights
Music blasting, playing games, it will be ok. My mind threatens to vetunre into the darkness. Trying to block out all the thoughts. These nights are the ones I long for morning, cause all I feel is mourning. Sometimes I don't know how I made it this far, why I'm still alive. When there's been so many lost lifes. So many friends that never got to see thirty, so much of me longs to write and tell their stories. To impact the world with their lifes, cause they impacted mine so much. I'll never forget the smiles, the jokes, the way each person brightened a room as they entered. How much it touched me that they knew me and supported me. And then here I sit so discourged from my past, my present, the future. These nights the pain stings much deeper, and I long desperately to help others that feel like this. Those who've been negleted, forgetten, abused. Those who doubt so much about them, struggling to love themselves. To know what love means. These nights when I want to run from where i lay and just yell on a street corner... CANT YOU SEE THE HURT IN THE WORLD, WE NEED TO FIX IT! These nights when I dream of being someone to impact the world but am so scared of making any choice. These nights when I battle the flashbacks, and the effects they left me with. Sometimes I think I'm crazy. But I guess crazy is ok. These nights are rough, but I'm never defeated, for some reason I am still alive, I still have a chance to change myself and make an impact for the greater. But on this night I sit here fighting to keep myself together...cause I know it will just be another one of these nights
Friday, February 1, 2013
untitled
Sitting here
wondering why
Am I standing still
cause life seems to pass by
Day after day
I play the same song
trying to get out of it
But still I trudge along
work, school, eat, sleep
hangout, help out, drive around
Is it all meaningless?
getting closer to the ground
Yet we try to build
and leave our great mark
Hoping we are more
Desiring to give society a spark,
start a great movement
Make a difference in a positive way
but life still passes by
Day after day
wondering why
Am I standing still
cause life seems to pass by
Day after day
I play the same song
trying to get out of it
But still I trudge along
work, school, eat, sleep
hangout, help out, drive around
Is it all meaningless?
getting closer to the ground
Yet we try to build
and leave our great mark
Hoping we are more
Desiring to give society a spark,
start a great movement
Make a difference in a positive way
but life still passes by
Day after day
Monday, January 21, 2013
Life left me puzzled
Sometimes I wish that life was a puzzle
So the answers would be so clear
It would just fit so perfectly
But it's like someone broke the edges
And colored on top of the picture
So nothing connects
I'm longing to connect
There's things in life that just make plain sense to me. Not always the most normal things but I'm learning to embrace the differences. Puzzles make me happy, they are sometimes super easy, others can be a bit challenging. But in the challenge I learn to look at different features that make each piece unique. I classify my puzzle pieces not colors but by shapes normally. Even though each shape is slightly different. For some reason it allows me to notice the differences in color easier.
I can't classify life into different shapes, and it's like I'm color blind. Everything seems the same and nothing ever fits together. I'm stuck, I'm puzzled by it all. Which seems like the worst pun in the english language, cause puzzles seem so right to me, yet it means there's confusion. Life definately confuses me.
I'm still guessing what this puzzle called life is supposed to look like. Some spots feel so ugly, some pieces so rigid. Trying to feel the completed picture, but is life something that will ever feel completed?
So the answers would be so clear
It would just fit so perfectly
But it's like someone broke the edges
And colored on top of the picture
So nothing connects
I'm longing to connect
There's things in life that just make plain sense to me. Not always the most normal things but I'm learning to embrace the differences. Puzzles make me happy, they are sometimes super easy, others can be a bit challenging. But in the challenge I learn to look at different features that make each piece unique. I classify my puzzle pieces not colors but by shapes normally. Even though each shape is slightly different. For some reason it allows me to notice the differences in color easier.
I can't classify life into different shapes, and it's like I'm color blind. Everything seems the same and nothing ever fits together. I'm stuck, I'm puzzled by it all. Which seems like the worst pun in the english language, cause puzzles seem so right to me, yet it means there's confusion. Life definately confuses me.
I'm still guessing what this puzzle called life is supposed to look like. Some spots feel so ugly, some pieces so rigid. Trying to feel the completed picture, but is life something that will ever feel completed?
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