She was admitted with a non-healing wound on her leg. I saw her lying still in the hospital bed with her eyes closed. She looked peaceful, contrary to her angry looking leg wound.
She informed us that she had a rare condition and she was being cared for by nothing but the best amongst the best of doctors. She showed us her pictures taken with famous people. She understood that she had some sort of celebrity status because of her condition.
To some a rare to share condition gives them a celebrity status. Being part of a registry of rare diseases provides them inner strength to survive against the odds of limited available treatments.
I heard her proud voice as she shared her pictures, but as I listened to her closely she could not hide her sadness of being a medical celebrity, as it does not come with longevity or even pride.
I hoped that someday finding a cure may make her proud of being who she was once upon a time.