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Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.

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Joy

Holding onto the Rain (Part 1)

I have been putting a lot of pressure on myself, feeling like this post should be epic, an explosive expression of my feelings and the unparalleled beauty of this country I now call home. But, the words are pale and fall from my fingertips in stutters. It seems that writing about joy is not in my wheel house; I have connected with the words that accompany tragedy for so long, I sometimes fear that I am only half a writer. But, life is also filled with vibrancy, and I want to write about all the shades of life, not just the dark shades; I hope even a fraction of the colours of my new home come through.

I have learned a lot about silver linings this year, about what is meaningful and what can been seen through the deepest darkness. The year began, for me, with unyielding physical pain that increased with the months, and then the world was thrust into battle with a virus that continues to run rampant. I stopped sleeping, I started eating more cake and drinking more wine. I became unrecognizable. I was quietly turning old before my time.

But, coins have two sides and one of them is always shinier than the other. Despite the pain and the virus and the weight, life long dreams came true. My book, “Things My Mother Left Behind”, was published by Potter’s Grove Press, and Joe and I moved to a place I have dreamed of living my whole life, even though I had never been here. I feel so incredibly lucky, and true to my nature, I also feel guilty for my good fortune. Perhaps I am a coin as well, always moving back and forth between the two sides of my own heart, never still, never in rhythm.

The story of our move begins with what I am more comfortable writing about, with drama, with shadows. It begins with a villain, a human vulture who bought our apartment building in Los Angeles and began to dismantle it the day he signed the deed……….

Blank

I turn good things into dust, eradicate their grandeur and rebuild them into turrets of self doubt and loathing. When something good happens, something I should be proud of, I tarnish it with thoughts that it was a fluke, something that will never happen again. Whatever it is, it isn’t good enough. It will never be good enough. I will never be good enough.  I am blank.  I am afraid to write, afraid that what I believed to be in my blood is only vapor, opaque and insubstantial.  Afraid that I am insubstantial.

The affliction of self loathing, like blindness, feels like an unwelcome guest that creeps endlessly across the landscape of my life.  But, do I invite self loathing?  Is it a habit?  Some clichés are true; old habits die hard.  Or perhaps it is a stirring in my blood, adhered to my bones? Have I learned to loathe myself, or was I born with self loathing in my heart? No matter what I do, what I write, I am still the ugly girl, the child that shouldn’t have been born, the one who failed to do what she was meant to do, who failed to fix what was broken, and then broke apart from the weight of failure.
Continue reading “Blank”

At Home in the Darkness

In the past few months, years after the inception of “Stories from the Edge of Blindness”, I started to really explore the blogging world rather than just stand on the outside in abject terror, feeling like a loser.  I started to interact and exercise my voice. I started to read some amazing blogs, written by writers I have come to admire; writers who teach me things and make me think.  One of my favorite blogs is Tom Being Tom, and recently, Tom wrote something that has had me thinking about being, becoming and changing, as the years of my life traverse, meander, sink  and soar. His post is, “We Are Not But One Thing”, and when you read it, you will understand why it got me thinking.  Tom is an intelligent and thoughtful writer.  He presents new ways of thinking about and looking at life. He is a hopeful realist.
Continue reading “At Home in the Darkness”

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