Kara Lynn .NET Blog

I am so very far from perfect.
It is the mistakes that make up my life.
It is a spider’s web, rather than a solid path.
Aiden is the sunlight on me.

I needed to get out of here that day
when the tempest boiled,
but escape is no longer possible
in this state of body.
This body keeps me.

I endured my head exploding.
The thunder echoed, the rains rushed out.
I screamed as I spun, wringing dead my hope.
I threw my legs, one by one,
toward the nearest shelter,
safe and distant unconsciousness.

-kara

This is no ordinary fundraiser. My friend, Steve Saling, is doing something very extraordinary for people with ALS. He is changing our fate. By founding the idea for the nations first ever skilled service residence specifically designed for people with ALS (pALS), Steve is making life possible for so many pALS who do not have the support at home to carry on living. pALS will not go to this residence to die… they will go there to live. I know Steve, and nothing less than meaningful, productive, high quality lives for pALS will inspire and drive this mission.Please join me and sponsor my friend, Steve Saling, and help him complete this wonderful project, which is already under construction. Make your contribution, click Steve Saling’s Walk to Defeat ALS.

or paste this link into your browser:
http://www.thealswalk.org/alsamawalk/walkers/walkerpage.asp?fundid=1613&uid=5504&role=3&type=walker&walkername=Steve%20Saling

Learn more about the Leonard Florence Center for Living ALS and MS Residences - pioneering projects here:
http://www.leonardflorencecenter.org/Pages/ALS-Lou-Gherigs-disease-amyotropic-lateral-sclerosis-ms-mutiple-sclerosis.html
Thank you for your generosity.
-Kara Lynn

Begin forwarded message:

From: Steve Saling
Date: February 19, 2009 1:01:22 AM EST
To: Steve Saling
Subject: Steve Saling’s Walk to Defeat ALS

Hello everyone. Most of you know that I have been working on a project to create our Nation’s first skilled service residence specifically designed for people with ALS (pALS). When my breathing is inevitably compromised, my days on Earth would be limited because there are no facilities that will care for a person on a ventilator outside of a chronic hospital. Because most people are unwilling to live, bedridden, unable to move, and unable to communicate, most people choose to die. Well, I am not “most people”. Soon after my diagnosis, I partnered with the Chelsea Jewish Nursing Home to create the Leonard Florence Center for Living. The ALS residence will offer full vent support, complete building automation, and a custom designed communication package that will allow me and a house full of other pALS to live independent, productive lives for decades to come.

Our project receives no more government support than a traditional nursing home. We depend on charitable contributions to save our lives. The Massachusetts Chapter of the ALS Association has been a partner from the start. On April 26th, 2009, we will host the first annual Boston Walk to Defeat ALS. Fully, 50% of the proceeds will go directly to the ALS residence that is already under construction. In fact, the Walk is planned so that we will walk past the construction site so that you may appreciate the reality of our cause.

Many of you have previously asked me how you can help. Well, have I got the opportunity for you. I would love it if you can join me for the walk. And please, invite all of your friends to join us. The Walk is only 2 miles and you get a free T-shirt. If you’re not able to make it to the walk, I have made it easy to join my team by making a donation. To sign up to Walk with me or to make a contribution, click Steve Saling’s Walk to Defeat ALS or copy the following address into your browser - thealswalk.org/alsamawalk/walkers/walkerpage.asp?fundid=1613&uid=5504&role=3&type=walker&walkername=Steve%20Saling

Thank you for your incredible support and I encourage you to pass this along to any friends or family who want to help you make a difference. I may not be able to walk or talk anymore but you can’t slow me down or shut me up

Life is Good,

Steve

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.