Purple Canaries

Joyce Gould with Jill Gould

A Tribute

Sitting on your throne,
royal down to the bone.
Some say you deserve the Nobel Prize–
a mirror reflection of their lies.
You wear a crown with horns
while we wear crowns of thorns.
Too many are still fooled by your disguise:
a perfect shape, perfect size, pretty little face with a nasty alibi.
This was the last piece Jill penned before succumbing to addiction. She has faced AIP since 11, had her world torpedoed at age 16 by Desnick’s revocation of her diagnosis, beat heroin and survived the “Florida Shuffle.” She’s back and in the Purple Canary fold. Seems progress is being made in German philospher Arthur Schoepenhaur’s vision: Truth goes through three stages. First, it is ridiculed. Second it is violently opposed. Finally it is accepted as self-evident.
Heme deficiency is an insidious condition. Why are so many porphs still left to languish?

Please feel free to share a story of porphyria w/addiction….

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