Stories From the Edge of Blindness

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


Writing Pains


I was taking a break.  I am…..taking a break, stepping away from myself.  Or so I thought. I realized it is impossible.  I am always around.  I can’t step out of my skin or get out of my head. I can’t erase my years or escape the barbs of the fence I have been forced to traverse.  No matter how much I want it, I can’t be anyone but me.

I felt better for a few days.  I danced and felt the life in my blood and in my breath.  But, it seems the good is always fleeting.  I find myself feeling  so heavy and motionless again, my breath weighing me down, my feet nailed to the earth.  I sit here and think about writing and stare at the wall and wish I could dissolve into the air, slip free from the shackles that constrict my motion and incapacitate my thoughts.

I got a rejection this morning that hit me so hard.  I knew it was coming, and yet when it came, I felt the wind knocked out of me.  Stupidly, I thought if my poetry was accepted for this particular issue of this particular magazine, it would mean my poetry has value.  I know it doesn’t work that way.  I just got my mind wrapped so tightly around the idea, it was hard to let go.  Joe helped me see that it was never the magazine that mattered, but the poems themselves. Some of the poems in this particular submission were some of the hardest I have ever written, took more out of me that most.  I suppose I felt as if my hardest work ended up being crap.  I know it doesn’t work that way.  Intellectually, I get it.  Emotionally, I am swallowing glass.


Stepping Back

April was a month full of the celebration of poetry, which was enlightening and exhilarating, but for me as a poet, it was a month weighed down by rejections.  March was the same.  I haven’t had anything accepted for publication since February and the constant rejections are beginning to pluck at my barely opaque confidence.

I am not sure why the rejections are hitting me so hard right now.  It could be the sheer volume of them or perhaps the nagging fear that all writers experience, of being a fraud or no good. I wish I could say that being published doesn’t matter, but it has become something that I look to in order to gauge the quality and relevance of my writing.  Right or wrong, it feels inevitable to me.

There have been some incredibly good things that have happened in the past month, with regard to my poetry specifically, but the rejections are tarnishing those good things, or I am allowing them to.  I can’t seem to get out from under the weight of defeat.  I don’t feel motivated to write.  All the words feel wrong, trite or inconsequential.  It feels pointless and it is making me feel sad.

I am not looking for validation.  I know that the validation can only truly come from within me.  I need to step back and try to gain some perspective.  Perhaps I need to step back from writing altogether for a while, or maybe just step back from submitting my work and try to focus solely on the writing.  I don’t know.  All I know is that it feels bad.  Every day I have to pick myself up from feelings of defeat and it is getting harder and harder to do.

Maybe I need to get out of the house, go hiking.  Maybe I need a juice cleanse or a therapist.  Maybe I need to take up mahjong.  What I do know is that I need to get some distance and try to look at all of this with different eyes.  The eyes I have just aren’t working.  I suppose they never really have.

The Punisher

You know those days when the words just won’t surface and you feel blank inside?  Those are the days that make me stress and pace and tie my thoughts into a tangle of barbed wire.  Those are the days when I call myself a failure and question my choice to be a writer.  How can I write if I am empty?  If I have nothing to give?  If I can’t even form a coherent sentence?    I suppose I am hoping that this brief post will kick me back into action

I am having some health issues – not serious, just annoying – and they have been keeping me away from writing; don’t worry, I am not going to enter into a litany about a bunch of boring health problems that come with middle age. Although, I will say that if you are reading this and you are under 40, take care of your bodies; you will be so grateful you did. I wish my brain could just keep on grooving, no matter what protests my body makes, but that just doesn’t seem to happen.

My brain feels dormant, but the punisher inside of me never sleeps.  I have felt like crap and still I beat myself up for not getting any writing done.  I sit at my desk, in pain and discomfort, and tell myself that I am a useless fuck who can’t even come up with one word for a poem I have been working on for ages, but who gives a crap because I am total shit as a writer anyway; the string of recent rejections proves it.  No one can argue with the punisher.

Then, the punisher chastises me for being negative and too stubborn and too stupid to create a positive dialogue in my mind; if I could just think good thoughts, everything would be better. But, my brain isn’t wired that way.  Something must be wrong with my brain.  I am totally screwed and should clearly never attempt to write another word. I should probably just stay in the house for all time, so as not to inflict people with my negative defective brain.

So, I get some ice-cream and sit on the couch, and the punisher sits right next to me, whispering in my ear, telling me that I am a fat loser who can’t even commit to a healthy lifestyle change. If I were a good person, I wouldn’t eat ice-cream, or crisps or sourdough toast.  So, now, I am a useless fuck, wannabe writer, fat loser, bad person with a defective brain.

The only thing left to do is go to bed.  The punisher has been particularly brutal this week, so I am exhausted and actually fall asleep, and stay asleep until it’s 4am and time to get up.  I stretch my  legs. I feel a bit weightless.  The punisher is nowhere in sight.

Sometimes, it takes a few hours of allowing myself to sleep and check out, to realize that it is ok not to write every day, to give myself time to heal when my body is in major protest mode and let my brain be still for a while.  It is ok to be whoever I am in any given moment and to eat ice cream; it doesn’t make me useless, just human.  So, fuck you punisher, because seriously, sometimes a bowl of broccoli just isn’t going to cut it.

Poetry and Blindness


I realize that I am a rubbish blogger, tweeter, instagrammer and facebooker.  I go along feeling as if I have just written a blog post and when I visit my site, I find it has been months since I have posted a single word.  The truth is, some days I have nothing to say or I am afraid to face the things I know I want and need to say, and some days I write as if I am burning and crazy and elated and drowning. None of which leads me to blog on a regular basis.

Although I have not written a blog post in a long time, I have been writing and rising out of the ashes of a disease that steals not only my vision , but my sense of self and purpose.  I always knew that I wanted to write, that the spaces inside the words are where I feel my truth, but I got lost in the murky waters of RP.  I wrapped myself up in the task of becoming a blind person and forgot that I am a person beyond my blindness.

Outside of this blog, I write poetry.  Poetry is really my first writing love; it is where my creative pulse was born.  A few months ago, after a 20 year hiatus, I decided I wanted to start submitting my poetry for publication again.  I had some things published when I was in my 20’s, but life got complicated, I put my writing voice on a high shelf and I stopped sending my work out.  Starting this blog got me excited about writing again and although it took years, I finally immersed myself in my poetry and gathered up the courage to put my voice back into the literary world.  I was elated when the first response I got was a positive one.

Heather Lenz, the poetry editor at Stepping Stones Magazine, accepted three of my poems for publication.  I am over the moon.  I feel reunited with my self and my passion.  I feel as if I have stepped out of the darkness and learned how to weave RP into the fabric of my life rather that allowing it to smother me.

I can’t say that I will become a prolific blogger; I am still trying to get a handle on that discipline thing, but I do think I will be blogging a lot more.


The two poems that have appeared in Stepping Stones Magazine can be read through the links below.


Tiny Voice





I haven’t been writing, but my mind is ablaze.  My life feels so heavy and my voice feels choked and uncertain.  I may, at times, wish that I could disappear, but I wake each morning and find that I am too much flesh and creaking bones and a head filled with words that long to be freed.  I will get there.  I need to believe I will.  Even the few sentences that get released are a beginning.  I am beginning again.

Lost Vision, Lost Voice

I haven’t been writing at all lately.  No blog, no poetry, no stories….just nothing.  I feel as if I don’t have much to say and when I search for my voice I find only silence and an emptiness that holds the weight of the world.  It is as if my voice is disappearing along with my vision and no matter how I grasp at the light, it flows, barbed and cruel, through my useless fingers.  I am trying to find ways to re-discover myself, but all that I see is unrecognizable and unwelcome. I am void.  I am a scar and a memory.  I am darkness.  I have no idea who I am.

So Far Beyond Writers Block

I haven’t written a word in ages.  Not a blog post or a letter or even a grocery list.  I try to read other blogs about writer’s block and books about writing tools, but I think what I  have isn’t writers block, but total writing avoidance.  I find myself actively avoiding this blog and the computer in general.  I don’t check the email address associated with this blog because I am afraid that if I do I will feel guilty for not writing.  But, when I come here and I write and I share my experiences and I put out a new blog post, I feel elated. I know that my one true passion is for writing and yet I avoid it as if it will somehow cause me harm.

I have thought about the possibility that what I am most strongly avoiding is writing about RP.  I find myself avoiding a lot of things because of the RP; some because of physical limitations or ramifications and some for purely emotional reasons.  But, I don’t have to write about RP.  I choose to write about RP because it is what I know and it is so entangled with every moment of my life, but I don’t write because I have RP.  I loved to write long before I knew I was going blind and even then I suffered from this total writing avoidance.

So, maybe I am just lazy and I don’t want to put in the work it takes to write something I can feel proud of.  But I will do the dishes and clean the house and work out and do the laundry and a host of other things before I ever get around to sitting down at the computer.  I will take the time to crochet 20 scarves to avoid writing.

Maybe it is fear.  But of what?  Pressure, failure, discovery? Perhaps I am afraid that I really don’t have anything to say or that if I try I will find my voice has disappeared.  I don’t know.

But I do know that I am here now, in this moment on this day, writing.  And it doesn’t have to be perfect or great or even good as long as the words are there.

A Walk into the Future

I admit that most days, I stay in my house.  It isn’t because I am afraid, more because I am comfortable and lazy. I have been telling myself for weeks that I need to get out of my comfort zone and out of the house and find a place to hunker down and write.  A friend suggested the library and I knew it would be perfect; quiet, surrounded by books and no food allowed.  But I didn’t go; I stayed in the house and watched tv and ate too much and abused myself for being fat and lazy and useless.  Why I found this a better option is a total fucking mystery to me, but the weeks floated by and the pounds added up and I found myself moving at the pace of “Days of our Lives”.  I could clearly see the corner I needed to turn, but I was making sure the approach was as slow as possible.

Today, I turned the corner.  I packed up my brand new bag made from recycled materials and headed out to my local library.  The library is about a four block walk from my house, down Sunset Blvd.  On the journey I passed a flamboyant man taking Polaroids of a motel frequented by hookers, a homeless person painstakingly organizing the contents of his shopping cart, and a throng of wide-eyed star fuckers searching for Charlie Sheen outside a famous strip joint.

When I got to the library I was met with an entrance free of loitering gang members, which I took as a good sign.  Maybe this library thing was actually going to work.  I walked in and it was quiet; wonderful.  It was also full of people reading and working at the desks and surfing the net on the library’s computers.  It was perfect.  I was thrilled.  I headed to the children’s section.

Why the children’s section?  Well, for one it is in the back of the library and I wanted to be far away from the temptation of the exit.  I also like the smaller desks and chairs because my feet actually touch the floor. Yes, I am that short.  And, I figured if there was going to be noise, I would prefer happy kid noise to grumbling grown up noise.

So, here I am in the kids section of my local library and I am actually writing.  I think I could make a habit of this.

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