Tuesday, October 29, 2013

Trifecta Challenge: Boo

I wanted to boo, hiss, seethe, make some motion that I hated what they were doing to me. But my body, as it always had, was holding me motionless. I wanted them to know what they were doing was wrong had been wrong my entire life and that this procedure they were talking of performing was the worst possible idea and not what I wanted at all. But the people ‘taking care of me’ as it had always been, were paying me no mind.

It’s not like I’m not use to people making decisions on my behalf, decisions I didn’t want made, decisions I can’t fight. It’s not like I’m not use to people underestimating my mind because my own body has trapped it, held it captive for years. Why should this place be any different?

Being held captive is one thing, but being tortured for needless reasons is an entirely different thing. I want, no I need someone to listen to me, to find a way to hear my mind when my body won’t speak.

Nurse Jane is coming. She’s sad. I know she doesn’t like what they are doing to me, what they are going to do to me. Maybe I have some time to convince her that what they will be doing to me tomorrow is wrong. Maybe there’s something I can do to make her listen.

What is that at the corner of my eyes ? It’s wet and running down my temples. Are those tears? Am I capable of tears? Will that be enough to convince her, them, all of them, that this is against my will?

All I can do is try and cry until somebody listens. 

The above short story is for this week's Trifecta challenge word boo:

1 (interjection)
used to express contempt or disapproval or to startle or frighten

2 (noun)
a sound that people make to show they do not like or approve of someone or something

3 (verb) to show dislike or disapproval of someone or something by shouting “Boo” slowly

 It was inspired by this story I read yesterday that broke my heart. If you think it's too long or it sounds too heartbreaking, I'll try and give you the cliff's notes. It's essentially about a girl with cerebral palsy whose parents deliberately infantalized and sterilized her so that her body would stay the same size as what they believe her brain function to be. The story is also about a person who lived through a similar experience and how heartbroken she is by this decision. It's an incredible but devastating article and I wrote this story above, partly because this thing wouldn't leave me and partly as a way for advocating disabled rights, no matter the age or brain capability. 

As some of you know, I had a son with special needs who passed away ten days before his second birthday and everyday I struggle with the decision we made to let him go because I don't know if that's what he really wanted. Despite his disabilities, he had a voice, an incredible, unique personality and a mind that wanted to fight to communicate and to work properly. I would've fought to my very last breathe to make sure he had that right. I have another blog called Ukiah's Heart, inspired by him, where I try to do just that for all the kids just like him by talking about issues revolving around children with special needs, parents with special needs, and bereaved parents. If this touched you at all, do your part by educating yourself at my other blog, and the other blogs I link to. Also, stop by George Mark House's website and educate yourself about the wonderful work they have done for families like mine and need help to continue to do. 

Thank you, in advance to all the Trifecta members who read this. You're all gems.


Kelly Garriott Waite said...

After reading the story I was going to say how sad it was. Then I read the story behind the story and know how sad and tragic and painful it is. Thanks for sharing.

kymm said...

Certainly is one of the more terrifying situations to imagine yourself in.
to hear my mind when my body won't speak - lovely.

Trifecta said...

Oh wow. I had never heard of the "Ashley Treatment." Thank you for sharing this with us. I can't pretend to know what I'd do in a situation like that, so I'll try to refrain from judgment, but wow does it feel wrong. In regards to your personal note, I'm so sorry for your loss. I can't imagine how difficult your decision must have been. You're a strong person with some strong words. The world needs to hear them. Keep writing; we're listening.

Tom MacInnes said...

First of all, thank you for writing the story that you did. It is important to talk about some of the desperately tragic things that go on at the fringes of our societies. In shining a light on the darkness, perhaps, just perhaps, we can alleviate the suffering of others; others who may be defenceless and alone and thinking that they live in a world where nobody cares about them. Secondly, thank you for sharing your own story of tough choices and even tougher loss. You seem to have found an excellent way to channeling your sorrow. Helping to create a more tolerant, informed and compassionate world is a noble challenge to have undertaken. Finally, as a teacher for 26 years, I have seen my share of students who "did not fit the mold". Such children can appear frustrating to work with/live with and, sometimes they are but, sometimes, it is our own limited view of what is possible when it comes to human existence that causes us to miss their beauty and their humour and their strength. Being an advocate for children is a beautiful thing. I commend your for your efforts to make the lives of children...all children... brighter and safer. Bravo! :)