Kara Lynn .NET Blog

They Stare at My Mouth

Kara — Fri, 27 Aug 2010 18:58:58 +0000

They stand in front
They, up above
Looking down
At only my mouth
I am pinned
Wings long withered
Flattened under gravity’s glass
Head jerking toward what I need
Foot in the air
Stretched and pointing with toes
Follow my eyes!
Please!
Head jerking!
Toes pointing!
Eyes screaming!
And they only stare at my mouth

I don’t know what you want
They say
Calm down
They say
Just tell me what you want
They say
I can’t help you
They say
Until you tell me
What you want
And they stare at my mouth
See nothing else
Head jerking!
Toes pointing!
Eyes screaming!
Gestures
My language
Hear with your eyes and your mind!
Language is so much more
Than words!

Still they stare at my mouth
Waiting

-kara 8/27/10

Save My Own Self

Kara — Sun, 08 Aug 2010 23:58:53 +0000

Write me in bold,
in brilliant color.
Worth saying,
worth living.
No need to be erased.

I will step out of the way
of helpless bitterness
from those I cannot fix.
I wish you the best.
Wish you happiness.
Wish you would figure it out.
Wish you would turn your back
on misery.

All I can do
is yet to be seen,
and is in my hands.
I cannot carry your anger
anymore.

Will take my own advice.
Glad I wrote it all down
to read one day
in time to save myself.

-kara

Protected: Genisis of a Motherfucker

Kara — Mon, 17 May 2010 13:01:40 +0000

What Kind of Life is This Anyway?

Kara — Sun, 16 May 2010 00:59:46 +0000

I am imprisoned in the downstairs of my house. The downstairs consists of a living room and kitchen. No bathroom. The living room is cut in half by a long child gate. My 5-year-old son gets the half with the TV, sofa, and big windows. I remember snuggling on that sofa with him, watching movies together, looking at books, playing iPod games, making phonecalls, or just giggling and being silly. Now that I cannot walk, I have no access to my son’s side. The little office chair I scoot around in cannot get thru the opening in the gate. My side of the room is cluttered with my electric bed, computer, humidifiers, fax machine, suction, cough assist, nebulizer… the ugly equipment of this heavy existence… none of it child-proof.

I scoot my chair up to the gate, hang my head over the bars, and hope he will come over and hug me. He rarely does. I try to schedule time for the aide to bring him to me and sit him on my lap. But there is little time. Why does it take all damn day for the aide to take care of me? Sponge baths in the kitchen are laborious, but 2+ hours is ridiculous. It seems my days are merely a job and I am just the subject of that job. I’m a limp product, being lifted, positioned, dressed, pottied, wiped, fed, undressed, washed, dressed, fed, pottied, wiped, fed, pottied, wiped, fed, lubed, oiled, maintained, but never driven. I start up every day, but go nowhere. I see the sunshine only thru windows. I am never taken outside. It’s too much work.

I am 90% maintenance, 10% human, and find myself asking, “What kind of life is this?”

-kara

Protected: Breathing Bad Air

Kara — Sat, 24 Apr 2010 15:40:42 +0000

Cold hard rules from ALSA Greater New York

Kara — Thu, 01 Apr 2010 00:58:41 +0000

Here is what they told me:

We do require that patients who receive wheelchairs from our loan closet be in the process of getting a custom chair funded by their insurance. Our loaner chair is meant to be something that is used while you are waiting for your chair that is on order.

Funny… my $$ donations didn’t have rules and requirements attached. I thought my donations would be used on ANY pALS in need. So, people who have to wait for their chair to be ordered, or those without insurance, or who cannot afford the co-pay, cannot borrow a wheelchair from ALSA Greater New York. How exclusive, and just wrong! I will not be donating my equipment to ALSA. There are other organizations without such rules.

Quality of Life

Kara — Wed, 31 Mar 2010 21:55:05 +0000

Quality of life
I think it’s in the toilet
The one I can’t access anymore.

Paralyzed Housewives: Happiness

Kara — Sat, 13 Mar 2010 20:49:57 +0000

Happiness…

Thank You

Kara — Sat, 27 Feb 2010 00:22:37 +0000

Kudos to Central Hudson Gas & Electric. They restored our power in less than ten hours today. Less than twelve hours Wednesday. These outages were nasty! Wires dancing with sparks across ice-covered roads, trees bowing down in everyone’s way, snow that just would not quit! Good job you men and women of the power companies, braving freezing cold, impassable roads, and fire-spitting live wires! You are heroes! Big hugs to you all!

Thank you Starbucks for the warm soy latte that Lindsay put in my feeding tube today. Thank you Lindsay! Tubed coffee gets me really high! Thanks Lew for going out for coffee.

Protected: die

Kara — Sat, 09 Jan 2010 23:41:19 +0000