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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

Fear

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.

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Rearranging the Furniture

Joe and I have lived in our apartment together for almost 10 years (he lived here 4 years before I moved in) and periodically, we rearrange the furniture.  We love it.  It makes the apartment feel brand new.  It may seem like a stretch, but when I was thinking about my writing the other day, and how much I have been floundering, I drew a parallel in my mind to rearranging the furniture.  When Joe and I start feeling a bit stuck in our apartment, we move things around and clean inside corners that have been long ignored, and we both feel refreshed.  Our most recent rearrange was to move Joe’s desk into our second bedroom, creating an office for him, which means our formerly shared space (what is meant to be a dining area) has become mine.  We were both excited for the change, but (here is where the writing connection comes in) it also ended up shining a light on how much I haven’t been writing.   Continue reading “Rearranging the Furniture”

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”

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.

Unwavering

I never wrote love poems, not about the good parts of love anyway, until I met my husband, Joe.  Perhaps I had never really been in love before him, or perhaps I didn’t know what real love was supposed to feel like and look like.  What I do know, is that my life and my heart have not been the same since I first met him, almost 10 years ago.

This month is his birthday month, my personal favorite month of the year because it is about celebrating him, so it is perfect that today my poem, “Unwavering” came out in Foxglove Journal.

Hiking Blind

A friend recently asked me how I manage hiking with limited vision.  I have actually been thinking about writing a post about this since I started hiking again. I thought it might be something other people wondered about as well.  How the hell can a blind woman go hiking?  You have to remember, I am blind but I can see.  It is probably less confusing if I refer to myself as VI (visually impaired), but I am legally blind.
Continue reading “Hiking Blind”

How Do I Get Out Of Here

I didn’t start this month thinking I would be writing about mental illness, but I have been so encouraged by the bravery of other writers sharing their experiences, I feel the need to share my own, with the hope that it may help someone, somehow.  My experiences are not unique, but that is the point; there are so many of us out there who suffer from depression and anxiety, and we should not feel ashamed.
Continue reading “How Do I Get Out Of Here”

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”

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