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.
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