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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.

Category

Degenerative Retinal Diseases

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 →

“Things My Mother Left Behind” Available for Pre-Order

I am sitting in my very quiet writing space, typing this in a state of simultaneous disbelief and total joy. I am thrilled beyond the sky to announce that my book, "Things My Mother Left Behind", is available for pre-order,... Continue Reading →

Zelda, Persephone and Maud

When I started writing my blog, it was going to be a story solely about blindness, but as the years have progressed, I have discovered that the story of my blindness is the part that weaves itself into the whole,... Continue Reading →

Blind in the Time of the Virus

It seems like ages since I have written about blindness.  It feels so small, so insignificant compared to what the world is facing, but regardless of its weight in a moment or hour or day, blindness is always with me.  Blindness won’t... Continue Reading →

Untethered

I was in the car with my husband yesterday, Thomson Twins jangling in the background, when I started to think of what it means to be untethered.  I am parentless, floating without the anchors that rooted my bones to the earth,... Continue Reading →

From the Quiet comes Poetry

Everything is so quiet and so very loud. Each step I take is labored, heavy and uncertain. I haven't written much at all this year, or submitted or had much published, but today I opened my email to a lovely... Continue Reading →

I Am Not Blind When I Close My Eyes

I have been writing about a storm, hiding behind the clamor of the rain. I have been watching my feelings twist into the drain, willing away their texture and weight. It is futile; this hiding, this twisting, this willing away.... Continue Reading →

Best Eye Appointment Ever

The title of this post may be a tad misleading.  The best eye appointment would either be Dr. Sarraf telling me it has all been a dream and I don't actually have RP, or Dr. Sarraf giving me a pill... Continue Reading →

Once a Year

Tomorrow is my annual appointment with the retinal specialist.  I used to suffer from at least a week of anxiety and fear leading up to the appointment, but I have been through it so many times, I now start getting... Continue Reading →

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