Sunday, May 27, 2007
Work and other meltodowns...
This post has been building inside for a few days. This week I had a meltdown at work simply because my routine had changed and my boss said something that set me off. Normally I would have been fine, but sometimes these "blowouts" come out unexpectantly. That's the thing you see, each autie person has their limits, their own style of coping, their own reserve. I guess I had just filled my reserve with Job stress and it had to come out somehow. I ended up going to a meeting with the director of Nursing where I had never been before, (really good on my already frayed nerves) and ended up reporting the incident about my Boss. I knew the job thing was starting to get to me, because I started dreaming vengeful things about work. Since I either don't dream, or dream heavily and I usually remember when I do, these were quite out of the ordinary for me. Nothing has changed work wise but at least, I felt better. Perhaps the change being that, because I stood up for myself for once, getting a spine, a backbone, I actually felt empowered and able to do so. I don't often have those feeling but something tells me that I must. I am not a child, I will not be held down, smothered or held back any longer. This director has worked with me a long time, and had never even spoken with me until that day. 11 years, and she never even knew who I was...Mousey quiet, studious me, always with my face in the computer. Now she knows me, good or bad, hopefully it will at least pull me off the wallpaper. As J said once, I have become furniture. At least the director knows I now exist in the warehouse of employees out there.
Wednesday, May 9, 2007
Ashley again
Things came too little too late for the tiny"pillow angel" Ashley. There was a story on CNN (where this photo is from) that was written by Amy Burkholder. "Report:"Pillow Angel" surgery broke the law. ( http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html )
Finally an advocacy group stood up and asked the question "What really happened here?" The Washington Protection and Advocacy System found that Seattle Children's Hospital and Regional medical Center violated the constitutional and common law rights of the "pillow angel" by performing a hysterectomy without a court order from the state.
Due to all the treatments she received, Ashley will never become a woman in her own right. She will never develop any larger, or have any growth spurts due to the treatment she received hormonally.
Ashley is frozen in time as a young child who's body and face will age despite all care by her parents to keep her as childlike as possible.
This angered me before, and although perhaps I've tempered it with time, it still leaves a bad taste in my mouth. I have to wonder what happens to Ashley if she outlives her loving parents... Perhaps its not my place to worry about her, but there are so many sick people out there. Keeping someone childlike although an adult is IMHO asking for trouble. Peodophiles dream of children like adults.
Having a developmental disability myself, and two of three children who are also developementally disabled (disadvantaged for you pc people) I worry that when I'm not here what will happen to my children. If I should end up in a state where I can not live beyond the function of machines breathing and beating for me,unless I would have some hope of recovering, I would not want to live in that state. I would have to completely cease all brain function though. I can't imagine what it would be like to die cognizent that I was doing so.
I also would hate not to be able to move. And I have a weird revulsion of most bodily functions/fluids so a vegetative state would not be for me. That said, I couldn't make those decisions for someone else for, or against.
And since Asley is unable to decide, someone needs to advocate for her benefits and human dignaties that she has been deprived of, albiet with "good" intention.
I'm glad someone stepped up for her. It's too bad it wasn't before she was so surgically mutilated that she will never be the Ashley she was created to be.
I pray that this never happens to another child.
Finally an advocacy group stood up and asked the question "What really happened here?" The Washington Protection and Advocacy System found that Seattle Children's Hospital and Regional medical Center violated the constitutional and common law rights of the "pillow angel" by performing a hysterectomy without a court order from the state.
Due to all the treatments she received, Ashley will never become a woman in her own right. She will never develop any larger, or have any growth spurts due to the treatment she received hormonally.
Ashley is frozen in time as a young child who's body and face will age despite all care by her parents to keep her as childlike as possible.
This angered me before, and although perhaps I've tempered it with time, it still leaves a bad taste in my mouth. I have to wonder what happens to Ashley if she outlives her loving parents... Perhaps its not my place to worry about her, but there are so many sick people out there. Keeping someone childlike although an adult is IMHO asking for trouble. Peodophiles dream of children like adults.
Having a developmental disability myself, and two of three children who are also developementally disabled (disadvantaged for you pc people) I worry that when I'm not here what will happen to my children. If I should end up in a state where I can not live beyond the function of machines breathing and beating for me,unless I would have some hope of recovering, I would not want to live in that state. I would have to completely cease all brain function though. I can't imagine what it would be like to die cognizent that I was doing so.
I also would hate not to be able to move. And I have a weird revulsion of most bodily functions/fluids so a vegetative state would not be for me. That said, I couldn't make those decisions for someone else for, or against.
And since Asley is unable to decide, someone needs to advocate for her benefits and human dignaties that she has been deprived of, albiet with "good" intention.
I'm glad someone stepped up for her. It's too bad it wasn't before she was so surgically mutilated that she will never be the Ashley she was created to be.
I pray that this never happens to another child.
Thursday, May 3, 2007
My reality or numbness exposed
Sometimes I just feel ugly. A bloated skin ball on legs that has no real worth, no true purpose other than to be subservient to others. I breathe and use oxygen better suited for someone else.
At times, I have to wonder why my life is like it is. Whose cruel joke am I living out? Why do things always have to be long and drawn out, and complicated and so damn hard! Why can't I for once have something go right or easy for me?
I'm sorry, I guess I am just venting my anger at no one in particular about J leaving.It just seems such a miserable cruelty to have to live this way.
I ache, my pain level has gone up since he left, the Dr. says without MRI's and ultrasounds there's not a lot she can do,
I'm not sure that my pain is actual physical pain or mental or both. I lie down and my legs curl in cramped knots. My stomach churns, I can't take anything for more than 3 1/2 hours, I have the minutes counted till the next pill... How Autie is that?
And yet I mask, I go to work, trying to work at hyper speed, trying to make the day pass faster so I don't have time to think about things. time to think about the ache in my head or my heart or my legs, tired from running up and down a clinic in a 7 mile day in heels.
Yet if I wear flats, my back and legs hurt worse... aren't I made strange?
I convinced myself at 18 I was too short and had to wear heels to make me look taller and longer legged. Not for anyone else but just to appear attractive to me. I never really think of myself as being attractive to anyone and it always surprises me when someone gives me a compliment. I just can't figure people out.
One night I went to a place to do a survey for money and there were snacks and drinks set out on a table. The Receptionist told me to help myself to the snacks. Being diabetic, I grabbed a coke, and a man sitting near the table said,"That'll be $2" I stammered, "What?" because I wasn't expecting anyone to speak to me."That'll be $2" I really didn't know how to take him, whether he was being serious or no, so I told him "He'd have to wait until after the survey because I didn't bring my purse and had no cash with me." He still insisted "But you still owe me $2." I sat the coke down next to my chair, and tried not to look at him, and watched as others grabbed water and chips and yet he said nothing to any of them. I was confused, but they called me in to the survey and I left the can of coke there since I didn't have any money. Turns out he was joking. I felt humiliated as I didn't know what to say, or how to take him. I can not read people.
Sigh...
At times, I have to wonder why my life is like it is. Whose cruel joke am I living out? Why do things always have to be long and drawn out, and complicated and so damn hard! Why can't I for once have something go right or easy for me?
I'm sorry, I guess I am just venting my anger at no one in particular about J leaving.It just seems such a miserable cruelty to have to live this way.
I ache, my pain level has gone up since he left, the Dr. says without MRI's and ultrasounds there's not a lot she can do,
I'm not sure that my pain is actual physical pain or mental or both. I lie down and my legs curl in cramped knots. My stomach churns, I can't take anything for more than 3 1/2 hours, I have the minutes counted till the next pill... How Autie is that?
And yet I mask, I go to work, trying to work at hyper speed, trying to make the day pass faster so I don't have time to think about things. time to think about the ache in my head or my heart or my legs, tired from running up and down a clinic in a 7 mile day in heels.
Yet if I wear flats, my back and legs hurt worse... aren't I made strange?
I convinced myself at 18 I was too short and had to wear heels to make me look taller and longer legged. Not for anyone else but just to appear attractive to me. I never really think of myself as being attractive to anyone and it always surprises me when someone gives me a compliment. I just can't figure people out.
One night I went to a place to do a survey for money and there were snacks and drinks set out on a table. The Receptionist told me to help myself to the snacks. Being diabetic, I grabbed a coke, and a man sitting near the table said,"That'll be $2" I stammered, "What?" because I wasn't expecting anyone to speak to me."That'll be $2" I really didn't know how to take him, whether he was being serious or no, so I told him "He'd have to wait until after the survey because I didn't bring my purse and had no cash with me." He still insisted "But you still owe me $2." I sat the coke down next to my chair, and tried not to look at him, and watched as others grabbed water and chips and yet he said nothing to any of them. I was confused, but they called me in to the survey and I left the can of coke there since I didn't have any money. Turns out he was joking. I felt humiliated as I didn't know what to say, or how to take him. I can not read people.
Sigh...
Subscribe to:
Posts (Atom)