Long, thin fingers typing away Marfan Life | Marfan Blog Long, thin fingers typing away

Symptoms: Tall, thin stature ~ Long fingers ~ Unusually long arms and legs ~ Curvature of the spine
Chest bone that curves inward or outward ~ Flat feet or high arches ~ Nearsightedness
Weakening of the connective tissue, most dangerously of the aorta
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Sunday, July 25, 2004

Three Poems by Barb W. Jones



To and Fro
What will become of us when we no longer
carry our skeletons to and fro?
We have traveled so far for so long.
Isn’t this time on earth worth more than
a mortal’s tale?
The message on my tombstone could
never point the way.
What can I do that will change the world?
I am only a wandering soul
on a mission from the wind.
Today I am here as breath and light.
Is there more?
Why are these bones so heavy?

Sometimes I Feel the Bones
Sometimes I feel the bones;
Raw, cold, clattering sticks.
Sometimes I feel the skin;
Soft, weeping tissues, carrying heat and passion.
Sometimes I feel the muscles
And cannot stop running to and running from.
Shadows turn to light
And days fall into darkness.
I don’t know what stays after all the changes.
I don’t know where to find sublime stillness.
Clouds form as I seek the light.
Days appear and I become the shadow.

Spirit
That you came to me
so softly, or too quickly,
or not at all.
That you appeared
when I most needed you,
or when I turned away.
That you came to me most quietly
again, and then now.
That you became me, and I you.
Spirit,
Touch me again.
Let my body be earth’s horizon,
And you the sky.





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For medical information about the Marfan syndrome that has been approved by the Professional Advisory Board of the National Marfan Foundation, see the NMF website.
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