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Susi Q: Surviving Daughter of Scleroderma Patient

In 1994, life stopped for my father, James Crocket Hall. After four years of wondering and going from doctor to doctor, he finally had an answer: scleroderma. He was twenty-six. What was scleroderma?

We were told to go to the library and read about it. Then he got some pills and was told to come back in three months. My mother and father did read about it and then we understood how bad this news really was. Five to seven years left to live, they read, and that was all my father could remember.

My mother said to me once, "That was the day Daddy got tired, and he stopped being tired in December 1996. That was the month you were born!"

After the news we changed doctors really fast and soon we had a wonderful team of special doctors and nurses working with us to make life as good as it could be with scleroderma. As time went on he got sicker. He kept on playing and laughing with me. My father tried anything and everything to feel better. When he could not move his fingers anymore he was "Claw Man.". He even changed all his tools around for his hands so we could still build and paint miniature models. We loved going to the movies and out to dinner.

When his kidneys stopped working he had this strange machine at home that helped clean his blood every night. He was now "Bionic Man", he told me. I will never forget that. My Daddy was and still is my hero.

He passed away in 2003. He told me not to be to sad too long. He said he will be sitting on a cloud with his oldest blue jeans, leather jacket and really, really long hair looking down on me and making sure that I will not get in too much trouble.

I miss him very much! Mom and I stop and look at the clouds from time to time. The thought of him up there with long hair makes us smile. Giving up is never an option. Making the best of it, is. I learned that from my dad.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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