I’m tired of being tired
I’m tired of having to fight all the time
I’m tired of having to struggle
I’m tired of not being in control
I’m tired of trying to be in control
I’m tired of being patronized
I’m tired of having to cover my bases
I’m conflicted and I’m tired of that
I’m pissed off
I want to not care but I have to care
Having to care is tiring
But who would care for me?
I wish I wasn’t so damn smart
I feel like I’m starting to “get it”
But then I have to do something about “it”
Doing something makes me tired
I can’t not do something
So then what do I do?
I want to and don’t want to be an adult
I hate my mom for making me so aggressive
It takes too much effort to be happy
That of course makes me tired
I need a househusband
I’m tired of being behind
Catching up makes me tired
Life is so much harder being tired all the time
I’m tired of being driven
I’m tired of these god damn meds
Life is so much easier when you don’t focus on how you function
Life is so much easier when you’re on an even playing field
Having to measure up to others is exhausting
How can I possibly be better then everyone else when I’m inherently inferior to begin with?
Being tired just plain sucks because it invades my life
I HATE being tired
But if I’ve always been tired why does it bother me so much?
Because being tired holds me back
And being tired potentially causes physical pain
And being utterly exhausted is the only thing that is guaranteed to make me cry
But I don’t cry
But when I’m this tired I can’t laugh
I can’t do anything but cry
Who wants to cry all the time?
For that matter who wants to be tired all the time?
I don’t want to be tired all the time
But if I wasn’t tired that would be giving up
I can’t give up
Because what would happen then?
What would that say about me?
Giving in is absolutely not an option
Isn’t it funny how not giving in but being realistic seem so diametrically opposed?
Man I wish I had all the answers
Having answers saves energy
To be captain obvious, saving energy means I’m not as tired
Not being tired is good
It is the Holy Grail
Not being tired is like a mirage in the middle of a desert island
But it isn’t going to happen
And again, that just totally sucks
It makes me want to cry—
Being stuck between a rock and a hard place with no way out other then flat out giving up
Which I can’t do
It's Beginning to Look A Lot Like Fun*Run Time
Tuesday, February 26, 2008
I’m tired of being tired
Wednesday, February 20, 2008
What do you guys think?
---------------------------------------------------This is nothing against you personally, I think you are a good professor, but the articles you have chosen for us to read for class really make my blood boil. This latest article, for tomorrow's class, literally made me sick before I even read it. All I had to do is read the caption. "When motor neurone disease became too much to bear, GP Elizabeth Curry downed some pills with a pint of gin and tonic. Why can't others be allowed to choose when to go, asks her daughter, Hazel Curry." Articles like this take us down very a slippery slope. If society views it not only alright, but as I believe in the case of this article rather noble for people "suffering" from diseases or disabilities to commit suicide then it isn't very far fetched to deem it ok for parents to be allowed to murder their disabled children in order to end the "suffering" which they may or not be experiancing. This is beginning to happen more and more frequently and I am affraid that as it increases in frequency it will become more and more accepted by society. One of the most famous cases is the murder of Katie McCarron, who had been diagnosed with autism. She wouldn't take her nap and her mother (a doctor) placed a plastic bag over her head and smothered her in order to end both of their suffering. Who's to say Katie was ever suffering? We'll never know now--she's dead.
As I get older I am very likely to become less and less mobile. Their may become a point where I will need quite a bit of assistance to accomplish activities of daily living. Am I then a burden on society and those around me? Would I not deserve to live? Of course I do. The thought of killing me off just sounds ridiculous doesn't it? But you see, where do we as a society draw the line...
I don't know, I hope you don't view me as over reacting. I'm just sick and tired at the lack of value that is placed on the lives of people with disabilities. Maybe if we weren't as marginalized by society Elizabeth Curry wouldn't have seen the need to kill herself. So she couldn't see patients anymore? Does that mean that she is completely useless? There were still things that she could do from home I am sure.
This quote really makes me sick: "It's sad that other dignified human beings such as Diane Pretty, who don't have the same resources, can't end their lives at the same point. Leaving it longer means a year of dribbling in a chair, paralysed, while your mind ticks away normally." I drool on very rare occasions. What does that say about me?
The other day my professor sent the class a link to an article on the Gaurdian site that was published back in 2001. It needs to be read in the next 13hrs. I just pulled it up and I don't know if I can read it. Just the caption makes me sick. What is with her and perpetuating stereotypes? 2 weeks ago I had to do an article presentation and it ended up being me trying to debunk cancer stereotypes. What else am I going to have to fight about in this class?
A dignified death
When motor neurone disease became too much to bear, GP Elizabeth Curry downed some pills with a pint of gin and tonic. Why can't others be allowed to choose when to go, asks her daughter, Hazel Curry
Friday, February 15, 2008
Yesterday I went for a botox appt-- the BEST v-day present ever. Anyway, I said to my Dr, "I need to talk wheelchairs. I have a 20hr/week hospital placement for the summer and I can't do that on my feet."
I got a very quick "No you can't. Powerchair, scooter..."
"Why do you want that?"
"Because it's easier to keep there... [nod] But the thing is that it's a sling back and I can't do that [that was a big mistake on my mom's part when we got it]. I need a hard back. And, um, I need it by June if that's even possible." She agrees, so I am getting a hard back. Goes to get the botox and comes back in.
"I can't get a power assist chair in 4 months can I? This girl at school has one and it seems pretty cool. Why not have 3 chairs..."
Awesome to know that I don't need an entirely new chair. Much better idea then my Jazzy or just the hard back alone. I think it's the best idea. Easiest to throw in a locked closet somewhere, but won't kill my shoulders. I've primarialy been a vacation/surgery user as far as the manual goes, and my shoulders don't like it. They revolt.
So my 8.5 year old chair is getting an overhaul and I feel like I'm on pimp my ride. Must check my insurance. Just switched in July, so I don't know the reimbursement. I checked the quickie site and this is EXPENSIVE. I also checked hard backs and am very disappointed that they seem to only come in black. My chair is black. SO BORING. I got it when I was 14 and at the time I was affraid I would outgrow the color. I can't stand the black now. Especially now that I know that I am working with kids. Anything goes with kids. I feel like the more outragous the better. On a seperate note, I went into an art store back in Sept and went up to someone. "I want to paint my [also boring black 8.5 year old walk easies] crutches. What kind of paint sticks to metal?" I got some weird looks seeing as I wasn't even using them that day. They now have pink, purple & blue polka dots. I was really looking foward to a colorful back. So what should I paint on the quickie now? I need ideas.
"Pimping my chair" has me very upset. There is a lot on my plate right now and it pushed me over the edge. I broke down crying 3 times today. I've had 7 surgeries. I am very independently mobile. While I recognize that pimping is for my benefit and is for the sake of increasing my mobility, I don't want it. Inside I feel like I want to throw a 2 y.o. temper tantrum. I don't want it. I don't want it. I DON'T WANT IT!!!!! I'm probably repeating myself from previous entries, but why in the world did I put myself threw all that to need to pimp my chair? If I can't do a 20hr placement on my feet then I most certainly cannot handle a 40hr work week on my feet. I don't know, this is train of consciousness, but accepting that this is what I need is accepting help and I rarely do so. "I can do it; I'm alright; Really I'm fine." Except that now I am no longer fine on my own and anytime something like this crosses my path, like not driving, it is very traumatic for me. In the back of my head I have known that this is what was going to happen for years. I thought I'd come to terms with it. Well, I haven't. I think that's perfectly clear.
On another seperate (but related) note, I've been meaning to write about this for some time now. If you were in your chair and happened to pass a girl with a very visable mobility impairment on the sidewalk and she was "staring" at you how would you take it? You see everytime I come across someone in a chair I have to check it out. If it's a powerchair I'm curious what brand it is. If it's either type of chair I'm checking out the color combo and the accessories to see what I like for the next time I order. It's just a glance, but a longer then normal glance. I'm always affraid that the person is percieving it the wrong way, as I'm usually walking unaided.
Tuesday, February 12, 2008
Who is the idiot who decided to keep school open during an ice storm? Then again, why did I stay at school when I didn't absolutely have to? Maybe I'm the idiot? Hmmm... something to ponder... Anyhoo, so I went to my 12:30 class and then I went to the union to mail my mom & grandma their valentine's day cards real quick before I had to dash to disability support for a meeting. It was icing out, but not so bad. I could handle it myself no prob.
After the meeting I dashed to my 4:00 class. A little more ice, but still managable. He let us out at ten after 5:00 instead of keeping us until 6:40. It's family law class and um, he's totally cool with giving everyone free law advice, so I stayed after and discussed a potential legal action that I may or may not have to take against the university (I hope I don't, but I wanted to know where I stood in advance so that I can be kick a$$ if it comes to it). I'll blog about this at another time in more detail, but does it fall under the rehabilitation act or ADA? I'm confused. Turns out I wasn't wrong. It does fall under both, and he'll come to bat for me if/when it comes to it.
Anyway, I'm in a co-ed frat and this week is rush. I was REALLY looking forward to meeting up at 8:00 and going for some free pancakes. As well as brotherhood & campus cops, I also heart Children's Miracle Network. Man were my taste buds set on $5 pancakes ($5 donation that is). So like I've been doing a lot lately I then 'pretended to study.' I returned some phone calls, I checked some blogs out on Disaboom, checked out facebook, and of course checked my email. IHOP was canceled due to ice. At least SOMEBODY has a brain. BUT, we were meeting in the union and picking up pizza. I could be down for some free pizza I decided. I'm already here, might as well stay right? So when I was done with everything I played hearts and waited. This is where the 'I'm the idiot' part comes in, not thinking the ice would be much worse after 4hrs.
So I put one toe outside and went oh god. Uh, what do I do? Do I sleep on a wooden bench in the hallway? It'd be nice to not be late for school tomorrow for once. But what if school is closed? Then I'm held captive in an empty building. Bad idea. Next idea, call my president and ask her to send someone over to rescue me. A few minutes later, it occurs to me (geez I am such an idiot) call the campus cops and have them rescue me. But two girls were already on their way over so I just waited for them.
Jenn, if you're reading this on facebook, I REALLY HEART YOU. Hope you feel better sweety. See I was doing good for a bit and then I fell and Jenn came down with me. She got hurt and I'm completely fine. Next I thought CRAP!!! How do I get up? Even with two girls, there is ice under me. True to me, the first thing I decided to do instinctively was to laugh. "That was really funny guys." Apparently there were two campus cops who had been watching us, but who up to then had thought we were ok, who came over and hoisted me up and gave us a ride to the union.
We got into the car and I was like "Man I wished I'd had a camera." Then after the police guy called in an incident code I perked up. "Am I going to make the police blotter in the paper on Thurs???"
On the way out of the union I got a nice tip from Nick. Don't pick your feet up. I don't do ice usually. It would have been nice if I'd known that before.
Apparently over Janurary when I wasn't here some girl moved in to the empty room upstairs. I don't like her, she's a little odd, but it might be cultural, she wasn't born here.
Last night I came home at 10:15 after a very long day. She was in the kitchen cooking dinner (who eats that late?). "Hi Cheryl. How are you?"
"Good." really wasn't, had a horrible day, whatever though.
"Have you already had your dinner?"
"What did you eat?"
"A sandwich and stuff."
"I ate it durring class." Had a 4:00-6:40 class last night, same today.
"Did you make it yourself?"
Seriously? 'oh wow.' Is it just me or do I really look that helpless? I could make a PB & J when I was 5. I did more then once when my OT was teaching me how to use a knife. Do I have to hit someone over the head here before they get that all of my limbs work? Guess what??? I made PB & J for dinner tonight as well. IT'S UNBELIEVEABLE.
On a seperate note some other girl moved into the basement while I was out on Sunday. There are 11 people living here if you are starting to wonder, and yes, it is illegal. I came home at 9 something, did stuff in my room and then came out to watch the end of the Grammys. She probably knew me for a half hour when she said something so innapropriate that I'm not even going to repeat it.
Monday, February 11, 2008
Today we watched a tape where people were filmed that were dying. Either at home or in the hospital or in hospice. Even though it was very upsetting for me at the same time it was AWESOME. It totally imbraced my phlosophy that eveyone has their own story that is different and that doesn't mean that one story is better then the other. In the same way I preach that the best way for people to learn about disability is to hear from people who experiance it on a daily basis, I believe that it is best to learn about death from people who are dying. These are things that just cannot be learned from a textbook.
My thoughts focused on a woman with ALS who had been in the same hospital bed for 2 years. She was on a vent and had a feeding tube. The only thing she could still move wer her eyes. To the right for no, up for yes.
I have CP. My body is going to start breaking down ahead of schedule. When? Nobody knows. I'm pretty independent now, but I'm not going to die still walking around, unless I get hit by a bus. I've known this for awhile and I've come to terms with it. At some point I am anticipating not being able to walk anymore, not even being able to transfer independently, and not being able to even dress myself. No one can tell me with certainty that this is going to happen. Maybe I'm being too dramatic. Maybe it won't go this far. But I think in this case it is better to be prepared for the worst and be surprized. I decided that of course I want to live that way when it comes to it. There is not even a pause. I've had so much surgery that I'm used to needing that much help intermitently. Even with all that assistance I still have my mind and I am still me. This is proven even more by all the Disaboomers with PCAs. As my body is breaking down I'm going to make jokes about it.
If on the other hand my mind were to go and I did not even know who my loved ones were or who I was don't keep me alive by extraordinary measures. I'm not me anymore, so what's the point?
Back to the woman with ALS. Would I want to live if I could only move my eyes. Would I still be me? My gut reaction was no I would not. But then I thought about it more. If I am able to answer yes or no questions then that means my mind is still intact. I can still let people know my wishes. I have back problems. I don't know a single person my age with CP who doesn't have back problems. If I was spending that much time in bed it would hurt like a b!tch. Would you like some more valium? We're thinking it would be best to implant a baclophen pump. What do you think about that? I volunteer in a pediatric rehab hospital. I've interacted with several patients onvents. Even with a vent you can still be transfered into a wheelchair. Sometimes they can't leave their room because they're on isolation, but at least they're out of bed. Would you like to be transfered to your chair? I've always had a thing for nurses. I don't know why. The nurses in the hospital's I've volunteered at; the nurses at the hospitals I've been a patient at. I really like them all. Would you like a few nurses to eat lunch in your room with you? I could answer those question. yes I would still be me and yes I would want to live.
At one point in the documentary the ethics committee at the hospital met and discussed if it was better to continue treatment for the woman or to essentially kill her. I was worried. I thought that they were going to kill her off. What kind of message would that send to the class, and what kind of effort would I have to take to undo that? Boy was I relieved that through yes or no questions they had come to the conclusion that she wanted to live without a doubt. They decided that they needed to honor the patient's wishes above all else and they continued treatment. Thank g-d.
The difference between me and this woman? Someone would need to come up with a third signal. Yes, no, and I don't know. I say that all the time. See, even now I'm making light of it.
Tuesday, February 5, 2008
This semester I am taking small group dynamics (again) with the same professor. She's great. She has her undergrad (and maybe a masters) in OT and a PhD in psychology. It makes for an interesting combination. Also, she's worked in inpatient psyc so if my brain were to get all screwy again she's easy to work with. But this isn't directly related to this post.
So last Tues I went to class and my left arm was really acting up. This poses a problem as I'm left handed. The good thing about Towson is that there are usually 2 or 3 left handed desks in every classroom. I know that's not true with every school. Especially when my arm is acting up it helps to have my elbow supported. I have no idea how that works, but whatever. So anyway I walk into the classroom and did 2 quick scans of the room. No left handed desk. Uh oh. Now I never trust myself that something really isn't there because I have serious scaning issues. So I go up to the professor and say "Usually there are 2 or 3 left handed desks in every room. Is it just me or are there not any in here? Because if there aren't I'll get one." What I was meaning was that immediately after class I would call the head of disability support who loves me and she would then immeadiately call whomever and there would be a desk there for me by the next class. But... this is AWESOME... Without hesitation she goes into the classroom next door interrupts an entire class, goes to the back of a room, grabs a desk, and brings it over to me right before class started. Again, seriously AWESOME.
The con of having an OT as a professor is that she actually expects me to be on time to class. I'm frequently 20 minutes late for class. Either A) I had transportation or B) I got carried away with something and called a cab late or C) Which is never a case in this class, I just don't feel like sitting in class so I leave late knowing that no other professor will say anything. They all let it slide. Half the time I walk into class with crutches. While I generally believe in equal treatment, sometimes it's nice to let disability work to your favor. But nope, not here. Plus today I even woke up 4hrs before class, but I was sitting on Disaboom reading blogs and then went "CRAP! Look at the time..."
Hasn't she ever heard of crip time??? I'm also Jewish and possibly have ADD (the jury's still out on that one) so I'm trippley screwed. I really can't help it...
First off I am saddened that I have not been able to blog often since the start of school. On the other hand, I'm very happily spending quality time with "real people" and I'm amazingly getting my work done. If only I wasn't so exausted all the time...
And now with no further ado, my real blog post.
As I was comming out of my Valium induced stuper this morning I happened to catch the rumored list of stars for the next season of Dancing with the Stars. Who is on the list? Marlee Matlin. This has me somewhat intrigued. I'm wondering how it will all turn out. I'm not a fan of the show at all, but I think that this is going to get me to watch. Interesting though I was not compelled to watch when Heather Mills was on. I wonder why? Speaking of this though, I would like to commend ABC for so readily including people with disabilities on the show. And it's not liked they picked someone with a math related learning disability, they picked people with visable disabilities that make dancing more difficult, while still holding them to the same standard as everyone else. YES!!!! Somebody's finally got it. For those of you who don't know, Heather Mills is an amputee and Marlee Matlin is deaf. I think she has a cochlear implant, but that doesn't make her hear perfectly. She still will have trouble hearing the music.
Friday, February 1, 2008
As I'm sitting here in the library procrastinating writing the three papers I have due next week (next week is the 2nd week of classes WHAT???) a saying I say from time to time has popped into my head. "College is bad for my health." Most people go what??? How is college bad for your health? Well I will tell you how. Mostly college is bad for my back, and my shoulders, and my neck, and my upper arm.1) Sitting too long makes my back spaz. 2) typing too much makes my arm/shoulder/kneck hurt. Now seeing as I am not going to type standing up, writing papers is a double whammy. Even reading sometimes makes my neck hurt. So as I'm sitting here not writing my papers my whole body is beginning to spaz up. Now I already had a 2hr 40min class (only offered fri for that time and I can't graduate w/o it) so this is not good. By the time I finish these papers I'm going to be curseing out my profs probably. I'm also walking too much and carrying too much around, but what's a college girl supposed to do?
Valium is my salvation. I've kept a bottle on my night table for almost the last 10 years to use for such instances. I can only take it at night because it knocks me out so much that I could sleep through a hurricane. Boy do I sleep well when I take it, and boy does it loosen me up. I love that stuff. Except... that I have a self imposed 5 day limit because otherwise it makes me depressed. It can make me very depressed. In light of the fact that I now know I am bipolar, I am now petrified of this stuff. I took it for 4 days, because my body decided it wanted to revolt against me for no reason whatsoever, have had a 2 day break, and am now totally scared to take it tonight. But I need to take it tonight. It puts me in a sticky situation.
Now, I have a Drs appt on mon (which I may try to change to wednes cause it would be after all the papers are due). And I was going to plead my case to get her to write a perscription for Provigil. Provigil was origonally developed for narcolepsy but is now used off label for all kinds of fatigue. My mom has been on it for years and it seems like good stuff. I've been running around so much that the other day I fell asleep with the lights on at 7:30ish. I thought I heard that provigil was being used for CP related fatigue as well, but what doctor is going to write me a percription because I am pushing my body more then what is reasonable? I sure wouldn't.
I really want this stuff so I decided to search and see if I could find any supporting documents to support my case. I found the most amazing article. some researchers in Texas a few years back decided to do a study of 120 kids with mostly spastic diplegia, but also other types of spastic CP, and see what it did.
Now I know that things get skewed all the time to make results better, but I want to go for this stuff and see for myself. Apparently 49% of the kids in the group that were on it were walking better. Some 5yo kid who could not walk at all started walking in 3mos. It is the only treatment for CP that affects the central nervous system. So basically it goes up to your brain and says "You know, you're not supposed to be sending that crazy signal, so STOP IT." Does it "cure" CP completely? Of course not. but in some kids it managed to reduce their spasticity dramatically. So not only will this stuff help to keep me awake as I run around like crazy, but it could make me walk better, and help with the back/neck/shoulder/arm issue, so I can get off that d@mn valium and not be worried sick that I am going to go into another deep depression.
Is anyone on provigil for CP? How is it working out for you? I'm really curious to know.
Wish me luck monday!
Call for Papers for a Special Section of Disability Studies Quarterly: Disability and the Undergraduate Classroom
I wasn't sure where the appropriate place was to post this and the discussion boards confuse me now, so I am posting it here. I'm submitting 2 papers I wrote for class.
This special section will feature writing about disability by undergraduate students. To put this important writing in context, the issue will also feature two to three scholarly essays (max 6,000 words) by instructors on teaching disability in the undergraduate classroom. Expected publication Fall 2008.
We invite students to submit papers and projects related to disability--including both traditional papers and multi-modal, online work. An instructor may submit on a student's behalf if appropriate permission has been obtained from the student author.
We welcome student submissions on any disability-related topics such as access, pedogogical or professional issues, disability identity and intersections with other identity categories, disability politics, history, culture, language, or philosophy. We will also consider fiction or poetry with disability themes. Any genre of student work is acceptable, including
* cultural commentaries
* book/film reviews
* critical essays
* research writing
* analysis of disability representations in film, novels, or memoir
* personal narratives
* reflective writing
If you are planning to teach a disability-related course this summer, fall or winter, please consider working this call into your course and/or using your syllabus to invite students to submit their work.
For all selected student work, we will ask the teacher(s) to write a brief, accompanying critical reflection of no more than 250 words, which will offer an explanation of the course and/or assignment, as well as some words about the piece itself and the experience of teaching disability to undergraduate students. We also invite longer scholarly essays by teachers on teaching a disability-themed undergraduate class. This special issue is intended to provide opportunities for student writing *and* to articulate the many ways disability informs pedagogy, with particular focus on writing.
Deadline for submissions: June 30, 2008.
Submissions should be clearly marked "Special Section on the Undergraduate Classroom."
If you have questions, please contact the editors of this special section:
Amy Vidali Amy.Vidali@cudenver.edu
Margaret Price firstname.lastname@example.org
Cynthia Lewiecki-Wilson email@example.com