The Owl People

I try to figure this out~Do I think I have porphyria when I am well? Meaning, is it just in the depths of my darkest sickness and despair that I think the diagnosis would fit? Or is it even when I feel better and survey the symptoms that I think I have it.

It is confusing because I am 41 and I have been ill since I was 14. Perhaps longer, but that was the first time medicine was really involved and the first time I was tested for lupus, and watched my life disappear as I went from sunshiney teenager taking morning tennis lessons to girl who had to live in the dark basement the rest of the summer.

And I have spent a long time ignoring or trying to rationalize some of the symptoms, like oh my feet feel broken because I stood too long in hospitals or oh my arms ached during my period because I had put on a few pounds or oh my hands can’t grasp well and I can’t grip things and my handwriting has turned impossible because I spent so much time on the keyboard when I was in school, and oh the clumsiness and squished eye and fatigue must be just the tiredness. And oh the head pains must be menstrual migraines since there is such a strong family history of migraines. (mother, father, sister.)

I want to learn what I have to help myself, but also my family, and especially my sister. I think we two have manifested the worst symptoms, both disabled through our twenties with excruciating pains that like phantoms never showed up on tests. But it is also true that my mother, and both brothers, and my father, have strange and severe health problems, and I hope and pray that some knowledge I gain might help them. And I recognize that the odds of porphyria at all are small and that the odds of porphyria on two sides is basically nil. So even this hypothesis cannot hold all the answers.

But my sister and brother and mother and I have always been so sensitive. And we were always like, “Oh, that light is bright” as we ducked and dodged the sun, and “Did you hear that?” as we heard something miles away that no one else heard. And “what is that smell?” from something that other people would not smell for ages if at all. And so a long time ago someone in our circle of friends began to call us the Owl People.