Kara Lynn .NET Blog

The MND Association has just launched the first ever UK broadcast ad created to raise awareness of MND. The ad, which is currently being shown at over 50 independent cinemas across England and Wales, features Sarah Ezekiel, a woman I know who has ALS (called MND in the UK), like me. She was diagnosed with Motor Neurone Disease in April 2000 at the age of 34. She was seven months pregnant and didn’t know anything about MND. An actress plays the part of Sarah. The actress’s head is superimposed on the body of Sarah.

More information about Sarah and the Sarah’s Story campaign is at: www.sarahsstory.org.uk

The Making of Sarah’s Story video is really worth watching. Not intended for persons under age 18. If you are over 18, click the link below:
http://www.veoh.com/videos/v17354169qp6PYKkD?confirmed=1

Just like my father.
The random-fire man I hid from all those years
is my bully king again.

His thunder precedes the lightning,
my nerves electric, frying out.

Any peace I had is shattered now.
My collection of shards
wrapped tight inside my skin
hold me rigid.
Hug my edges as he rises
Hold on tight
He’s loose again
He’s kicking air
He’s punching doors
His bones are leaden
And he throws his weight around
Breaking everything
and every quiet breath
and every deserved feeling of peace,
he knocks violently from my soul.

My life was only circles
I never figured out
my way out
and here I am again.

-kara

This made me feel much better today! I love that man!

It’s never a good day when it starts by shitting my pants. There’s never much warning, and not enough muscle to hold it. I must open, get through, and close one child gate, then another. Then, with two hands on the single hand rail, slowly, and so carefully, lift one foot, then the other, up the stairs. The bathroom: as far away as Mecca. I don’t make it in time. I shit my pants on the stairs. This is becoming a common occurrence.

I hate this fucking house! I hate it! I hate it! I hate it!

My mother just fell up the same front porch steps that fucked me up a few months ago! Her knees are hurt and glasses bent. Rosa was here to pick her up.

What happened to Jonathan Carey severely wounds my heart. That beautiful boy, with the trusting eyes and youthful smile, left in the care of the uncaring and callous. Procedures and jobs protected, an innocent boy not. I am enraged and tortured as if I were his mother.

Learn how you can change things so that our most vulnerable children will be safe.

The Jonathan Carey Foundation
http://www.jonathancareyfoundation.org/

Helping Vulnerable Children

“Our mission is to raise awareness and to advocate for the most vulnerable of children, the orphaned, the abandoned, and the abused. Our purpose is also to raise funds for advocacy, to care for and support children, and to work with other existing organizations that are currently caring for children in need, and to advocate for necessary changes for children and their families.”

JONATHAN’S LAW       A.6846-A
http://www.jonathanslaw.org/

Eleven minutes on Nautilus recumbent bike. Felt like thighs would spontaneously combust! Feel good now. Must get into daily routine again. Legs are wasting. My last straws. Was stuck in middle of living room floor Saturday night. They failed me. I failed them. Too much time at computer… on my ass. Move it or lose it. That’s the rule when motor neurons are dying up. Told Rosa to kick my ass, make me ride that bike everyday. Love that bike. Peddle-powered, comfortable, sturdy.

I dreamed last night that I needed to speak in a situation in which I was alone and the person I had to speak to did not know me or that I had anything wrong.

I was so worried about opening my mouth only to make “uhhh, ahhhh, wuhhhh, mmmuhhh, ehhhhhhhhh” sounds.

For some reason, it was very important that I speak clearly to this person. I concentrated so excruciatingly hard, focusing and drawing all my energy to the muscles of my mouth.

I fully expected to only hear my usual non-verbal braying. And at first the words were just fat globs of blubbery sound, but as I continued, the words began to take shapes… my mouth was in control… my speech became beautiful.