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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

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 surprise. Issue 3 of Orange Blossom Review came out yesterday, and I am honored to have one of my poems in its virtual pages, amongst the work of so many talented writers. If you want to take a peek at the issue, you can so here.

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. I am sinking but standing still, static but being torn to pieces. I can no longer see who I was and I can’t remember who I wanted to become. I used to feel the fleeting joy of sparks on my fingertips. Now, it is just a dullness, an ache. All I want to do is run away. The gloom swallows my steps every time I try and escape.

I haven’t wanted to write about my father; maybe because I was afraid that if I wrote about him, I would lose all hope of escape from the grief. But, I know better. There was never any hope of escape. My father has dementia. Every day, I grieve him, a slow grief. He fades the way my vision fades, pieces of his memory growing dark, trapped in shadow. I am consumed by sadness and a constant feeling that I am failing him, because of my limitations, my blindness and my inability to put my emotions aside, to give even the perception that I am not coming unglued.

I wanted to at least start to share this story today, but even tearing away a small piece feels like a betrayal. I am exhausted and haven’t felt the earth of my life in so long. My voice is numb and I feel emptied out, blank. There is no path. No direction. No light. There is only the weight that comes with watching him forget the shape of his life, knowing that he has forgotten my name, and will one day forget who I am.

For 3 years, I have been watching him become someone else. In many ways, I am closer to him now than I was when his brain was crisp and unclouded. I can finally be what he needs. I finally have value. But, I am losing myself. Joe and I are the only ones who are here, living close by and helping. We have been so alone in this and I am afraid of the tole it is taking on Joe. I don’t talk or think about much else; it is as if I have stopped breathing, as if I am disappearing not only from my father’s memory, but from the grasp of my own life. I have abandoned my writing, but I have come to peace with that. I am doing what I have to do, for now.

I am unsteady, unreliable, untethered. But maybe, for just a moment, I can believe that when I close my eyes, I am not blind.

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 that would cure the RP and completely restore my sight.  Given the fact that those two things are pretty unlikely……it was definitely the best eye appointment ever. Continue reading “Best Eye Appointment Ever”

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 anxious about it just the day before.  I suppose I am lucky that I only have to go once a year, given that there is no treatment for my disease(that isn’t so lucky), but the day is always long, painful and exhausting. Continue reading “Once a Year”

An Unpopular View

I was going to work on my newest venture of writing fiction (thanks to my wonderful friend and mentor, Bryan) and send out some poetry submissions this morning, but then I entered the WP world and read a few different posts, from others in the Blind/VI community, about the  #Birdbox challenge, and I felt compelled to respond with a post of my own. Continue reading “An Unpopular View”

Frail

I was determined to become more disciplined, more succinct in keeping my blog alive.  I was going to post twice a week. I have a number of blog posts in the making. But I forgot about the ways that life creeps up and grabs me by the throat, dashing whatever lofty plans I may have conjured up.  I have imagined myself as so many things, believed myself to be so much more than I am.  I have accepted illusion over reality, climbed into the sounds of myself breaking and shattering, as if these were acts of bravery.  I convinced myself it was strength, believed that I was strong, but my reflection shows a woman who is frail and swallowed up by shadows.  Time and again I am a disappointment to myself.
Continue reading “Frail”

The Consequences of Blindness

I read a post this morning from Sightless Musings, that hit me at my core. Please read it.

I was going to write about writing today, about feeling completely inarticulate, but after reading the above mentioned post, I changed course a bit. I am still feeling like a complete bumbler in regard to my writing, but I press on and tell this story (if you can call it that) anyway.  Continue reading “The Consequences of Blindness”

The Return of Darkness

I have been away,  under the skin of darkness.  I intended to bring along pen and paper, do a bit of blood-letting, record my thoughts; instead, I brought a bottle, numbed out and dreamed of becoming  someone else.  I curled up against the edges of my eyes and saw things I knew were lies, but I didn’t care.  I forgot about plotting my escape and let the stillness eat me up.
Continue reading “The Return of Darkness”

Rust + Moth

I can’t deny it.  The day I got this particular acceptance, I cried.  I had submitted to Rust + Moth so many times and when the email came in that they had accepted my poem, I was in disbelief.  I still am.  Rust + Moth, in my opinion, is publishing some of the best contemporary poetry online and in print, and to have my work sit alongside that of so many writers I admire, is an absolute honor. The Autumn issue is incredible, full of poems that have left me breathless and in tears.   If you would like to, you can read my poem, here.

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