The Aftermath
 

 

Marfan* Haiku

warm sun on my chest
why do people stare, am i
a beauty or beast


in the warmth of love
i let my scars be touched
and they gently fade


thin fingers, sculpture
resting on the steering wheel
i admire the form

©Bryan Jones

Marfan* Haiku (#2)

cut my ribs in half
heal my heart, repair my lungs
can you prevent more?

beta blockers? Hell!
studies, trials, i don't care
hmmm, now, where was i?

given a topic,
my thoughts and fingers can fly
and my heart escape

shopping for a ride
i want a car with legroom
this leaves three choices

into life i jump
headfirst, heartfirst, charging on
to live while i can

HMO health plans
"the world's best medicine," if
you aren't pre-damaged

©Bryan Jones

 

 

I Stand in the Ruins
from Clinical Trials, by Julie Kurnitz

I stand in the ruins and sing
In love with life, I'm free
I look at what I've lost
At what cost
At what became of me

It seems I lost and found myself, my voice
Let go of lots of stuff I had collected
The things I didn't choose gave me a choice
And none of this has been what I expected
Each new day and new year lets me rejoice
Rejoice in being human and connected

I stand in the ruins and sing
In love with life, and free
There will be more to lose
Or find or choose
We'll see what we shall see

©Julie Kurnitz

 


Okay, lets be simple.  I don't remember my recovery.  I was three-years-old.  The only image I have is of standing in the mirror, looking at my chest marked with staples or stitches, my mother behind me.  Other than that, nada.

Recovery, though, consists of a lot of staying still, protecting your weakened torso.  Please look Pectus Excavatum up on the internet if you would like more information on this.

As for *Marfan syndrome - it is characteristic in elongated bones, bodies, and is sometimes accompanied by Pectus Excavatum.  Many people with Marfan die young because their hearts cannot handle their bodies.  I think that I may be one of the few with Pectus Excavatum that do not have Marfan syndrome.  Though I am tall, my limbs are pretty proportionate to my body.  For reference, Lincoln had Marfan syndrome.

I am content with my body.  I know I am scarred, but I am alive and ready to make a difference in the world.

 

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