The Life Of PSC (POEM)/(Short Story) My feelings

May 23, 2008

Born to a mother and father in Buffalo NY 1976

Little baby boy

Only Child

Only Child with PSC...........................

I miss the days of hanging out with my family and grandparents.

Riding my bike for fun or going for walks at night

I loved the beach, sand and water, as it transforms everytime the

water comes in.

I miss being a 5 year old in school again, learning

I miss the mall, working and owning my own place.

And at about 23yo.......................................

PSC enters my life through UC. How painful it was. What I was growing

up to be. 60lbs Heavier from steroids, asthma, and more.

WHat did I do Lord, why do I deserve this?

Now at 32 I have a beautiful little girl.

Born to mother and father (of PSC) 2003.

Only Child

Only child with a father with PSC.

The days I will miss. Weddings, grandchildren, colledge, etc.

Sweety, I apologize that I will not be there for you if I were to

die. I AM SORRY...................

I am SO SCARED OF DYING!!! I want to see my daughter grow up, finish

school, colledge, get married, and have a grandchild. I feel like an

outer shell and my brain is navigating my body. I can't stand to look

at the scaring from gaining weight. I have the hair loss that is

really putting me down as well.

I turn 35. And then I die. I am laid out for all those to see me. Not

the real me but a shell of me. A shell of meds has deformed my body

to look as someone else. I leave my body to see what the other side

is like. It is different. Quiet. I can't see any of my family

anymore. THIS IS WHAT I WAS SCARED OF!!!!! Now it is quiet. I sit

thinking about my wife and daughter. I wish I could have done more or

had someone done more to help. How will my little girl grow up to be?

Will she stay away from drugs? I WILL NEVER KNOW...... I have been

overcome by PSC and I have faced the end.

God Bless all of you who are fighting and keep fighting. We will have

a cure one day

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