Poems on my MS - pre and post CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Poems on my MS - pre and post CCSVI

Postby ozarkcanoer » Sun Nov 15, 2009 12:19 pm

Poem on my MS - Pre CCSVI
Tuesday January 13, 2009
Jill Nolan

What am I but this custard ?
These ion pumps and channels
This mess of ganglia and pathways
and cortex, all in an ancient salt sea,
Organized by energy and time into crevasses and bumps
and neurotransmitters going hither and thither
Flowing to say wake ! and sleep ! and cry !
And I am at it's mercy, it is without mercy.

And I am also this army, these T-cells and these antibodies
Who have revolted, relentlessly like Lucifer from heaven,
I am at war with myself.
I can see the war memorials, the spots on the MRI.
And I hurt, and I don't know why.

Is pain more fundamental than pleasure ?
Maybe defy the Second Law,
Maybe give me a "spot" for peace and leisure
To rest a bit, while you take the rest of me away.



Poem on my MS, part 2 - after learning about CCSVI

Jill Nolan
November 15, 2009

I was not designed.
I am a self-aware colony of cells.
My cells cooperate, or not, depending on their circumstance.
My brain is festering with lesions.
The lesions are part of what I am.
The lesions are full of what I am.
I am more than custard.
I am rivers of blood and fluids,
That must obey the laws of physics,
The fluid dynamics of my life.
My rivers flow and eddy, and sometimes fail.
What else can I be ?
My brain is the controller, who does not control.
How much better could I have been designed ?
I do not know.
I was not designed.
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Originally written for spinal cord injured people

Postby AndrewKFletcher » Mon Nov 16, 2009 2:47 am

Hope you don't mind but after reading your post thought you might like this.




One day after we fell and learned to cope with living hell
We will again some day walk tall in answer to some research call
Until that day we must not falter, 'til this great journey starts to alter

Shall it be some magic potion that someday sets our limbs in motion
Could it be some surgeon's skill or priest of cloth my pain does kill
And If I should die before I waken, and in God's court my soul hath taken

I will stand before my maker. Saying: I'm a giver, not a taker"!
But 'til that day that we must all face, should we now join the research race.
Then raise a glass and toast a cry. "There but for the grace of God Go I" !

By Andrew K Fletcher 22nd June 03
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Postby ozarkcanoer » Mon Nov 16, 2009 6:37 am

AndrewK !!! Wonderful !!!
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Postby AndrewKFletcher » Mon Nov 16, 2009 10:14 am

Glad you liked it :)

Your words come from the heart too
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Postby mrhodes40 » Mon Nov 16, 2009 12:57 pm

Nice poetry Jill. You have skill there clearly.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Mon Nov 16, 2009 1:04 pm

I like those very much.
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Postby ozarkcanoer » Mon Nov 16, 2009 1:10 pm

Thanks mrhodes ... I look very good. All my friends and family do not understand how I feel. MS is terribly difficult to express when it is all in your head. I was told by one psychiatrist that I should have psychoanalysis. Another psychiatrist told me I have panic disorder. Then I got my MS diagnosis in January 2008. 40 lesions, small but very visible !!! Now I know why I am in such pain. I just tell people that I can't sleep and have double vision and get tired easily and have headaches !!! My poems try to express the reality of just what I am. A neurobiology professor brought a baggie of brain tissue to class one day. It has just the appearance and consistency of custard. The professor said : "The brain is like custard. If you remove the skull and stick your finger in the brain you can stir it up a bit !!!". Was that a life long learning experience or what !!!!
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