Stories From the Edge of Blindness

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




I am in the grip of a storm.  I don’t do well in a storm.  I can barely breathe, barely blink.  I am drowning.  I have forgotten that I am supposed to keep my eye on the surface, stretch to the moon, take hold of happiness no matter how fleeting.  I have lost the words, lost the feeling in my fingers and in my bones.  I am a stranger.  I am about to turn 50 and I am a stranger in a body I loathe and abuse.  I don’t recognize the shape of my mouth or this new sadness that slashes it. I have been waiting a lifetime for it all to get easier, just a bit easier. It just gets harder, creaks, shrieks, breaks.  I am not who I was supposed to be.  I can’t remember where I was lost or when I gave up on being found.  I try to smudge out my reflection, fracture it, run from it, pretend that I am not this frail flesh, this breaking heart, this ugliness.  I try to write poems, but they are empty, made of air, burn up before they can draw breath.

The Weight of it All

I feel sad.  It sounds so simple, weighs so much.  I have watched the world crumble so many times, watched the people I love suffer and fade.  I have pretended the ground is solid, to help others feel less afraid.  I hide emptiness in the pit of my throat and weave rage into the air around me.  Sometimes it is easier to feel anger than to feel despair.

I have thought a lot about writing about the current shattering of things, but I can’t.  It isn’t my intention to be cryptic.  I am just not ready or able to write about what is going on, not with clarity anyway.  It is as if my sadness has drained the ink from my pen and the energy from my fingers.  I am escaping into the bottle more and more, but it is failing as an elixir.  I no longer hear it’s lies.  I am not depressed.  This shattering isn’t about me.  I am a witness and helpless. Continue reading “The Weight of it All”


Some days the act of breathing seems almost impossible.  The weight of my choices sits heavy in the pit of my throat and I am pulled into the roots of suffering.  I wear my defeat like skin.  The room is too warm and my hands feel numb.  I just want to drown, to vanish, disintegrate into ash.  I don’t remember getting old, but my body bears  the signs of decades of abuse.  How can you change when you can’t even stand, when your feet are too weak to hold the mess you’ve made?

In a dream, I shed my skin and stepped into a body I could love.  I looked at a reflection that wasn’t lined with cruelty, pock-marked with despair.  I had a new name and felt weightless.  Then I woke up.   Continue reading “Breathing”

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 rejections I have been getting, but they were just the cap on feelings that were already dragging me under.  I have been feeling overwhelmed for so long.

After coming to the conclusion that it isn’t the rejections that are pulling me into the clutches of sorrow, I had to stop and breathe and look behind my eyes to see what has been troubling me.  This can, at times, be a herculean task, as I seem to be troubled far too often, and it is never just one thing. But, I have become good at peeling away the layers, seeing what lurks beneath.
Continue reading “By Your Side”

Tangled up in Despair

When the darkness approaches, I turn to face it.  I allow it to seep into my skin, to fill my mouth and steal the breath from my tongue.  It is the only way out.

I am in it now.  I thought I was creeping out, back into the center of something more solid, but I got slammed back down and all I want is to lie here and not have to be me anymore.  I long to disintegrate into ashes and rise again with new eyes and less weight on my heart.  In reverie, I was born to be a phoenix, but under the spikes of the day, I am a freak who burrows into the minutia of emptiness and tries to escape her skin. I am tangled in familiar threads of despair.  For the moment, it is safe here.

A Clear Handle

Today I feel like I am failing; with O&M training and Zelda.  I keep waiting to feel natural with Z, but instead I feel awkward and so far away from the reality of what she means to me and to my life.  I can’t get a clear handle on why this is so hard for me; what about me lacks the ability to just get on with it?  It is as if any courage I had has been slowly peeled away, the layers brittle and dusty, collecting in my blind spots.  My health is deteriorating as I gain weight at an unprecedented rate; it is as if I am creating a barrier, but I can’t see what that barrier will protect.  I have distanced myself from the good habits I had been honing before the O&M started; I stopped meditating and exercising.  I am at once consumed by the changes in my life and doing everything I can not to face them.  I think that would make anyone feel a little bit nuts.

Today,  I got off the bus at a pretty sketchy corner, many blocks from my usual stop, but I was determined to use Z for my entire walk home.  I felt like I was going through the motions and not really using her to my advantage.  I find myself falling back on all of my old coping habits, not trusting that I can use Z to my benefit.  I know that I don’t practice enough.  I know that six weeks into my lessons, I should probably be using her every time I am out.

As I was writing that last sentence, Tamar texted me; perfect timing.  I was texting with her and started to cry and realized that I have been thinking about all of this blind, Zelda, white cane stuff and I have been writing about it, but I haven’t really allowed myself to feel it.  I have been a bit down and I have been isolating myself, but I haven’t cried or truly mourned.  I have thought about what it would mean to mourn, but I haven’t done it.  So, Tamar is giving me a week off so I can do the feeling part of this is a way that will help me get on with the walking out in the world with Zelda part.  I can’t believe that I hadn’t cried about this; I cry about everything.

I am crying now, and that is a good thing.

Blog at

Up ↑