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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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Vision Loss

Hope

Ever since my RP diagnosis, I have shied away from hope. Not a coquettish kind of shy, but a hand in the face, get the hell away from me kind of shy. I didn't see the point of getting into... Continue Reading →

By Your Side

I have been in a bleak place lately.  It is a familiar place, a place of introspection where I can try to figure out what is bringing on the sadness.  I thought it was because of the shit storm of... Continue Reading →

Contemplating the Water

My Dad lives across town and when I visit him, usually a couple of times a week, I often take the bus to UCLA and he picks me up by the medical buildings.  I was walking to meet him the... Continue Reading →

Isn’t that Something Only Old People Get?

RP is anything but straightforward; it comes with lots of extras that you wouldn't expect. A year after my diagnosis, I thought I had become pretty versed in the language of RP and what I might possibly be faced with... Continue Reading →

Tiny and Immense

When I was first diagnosed with RP and thinking constantly about what it would be like to be blind, I was gripped by the spikes of claustrophobia.  I imagined that the world would become tiny, the darkness choking me and... Continue Reading →

What do you See?

Most of the time, I find that people seem reticent to ask about my vision; I don't know if it makes them uncomfortable or if the concept of someone being partially sighted is just too hard to grasp, but the... Continue Reading →

Waiting Games

For new readers:  When I refer to Zelda, I am not talking about a pet or a child or a childhood toy I just can't seem to part with; Zelda is my white cane. It seems I am always waiting;... Continue Reading →

Writing Sample Part 4 – Surrender

It’s impossible to think about going blind without thinking about loss.  When you have a degenerative disease like RP, the loss comes in unpredictable bursts that steal pleasures and pluck freedom from disappearing fingers.  In the weeks just after my... Continue Reading →

Writing Sample Part 3 – Signs

We all look back at our lives, pick them apart and look for clues that would have helped us along the way, told us what was up ahead.  We discover things about ourselves that may have been present or growing... Continue Reading →

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