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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.

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RP

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”

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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”

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.

Everyone Falls

Everyone falls.  Everyone daydreams and falls into states of preoccupation, falls into the arms of another person, falls to the ground.  Can you remember the last time you fell to the ground?  I know it happens, but how often?  Is it a story you tell about that one time you fell and were so fucking embarrassed?  Or maybe you cried?  Did you hurt yourself?  Were you drunk?  There is no judgement here. I have fallen and been embarrassed and cried and hurt myself, and yes, I have been falling down drunk. But, the falls that shake me the most, are the falls that can only be blamed on RP.  Continue reading “Everyone Falls”

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.

Perspective on Suffering

I approach the idea of suffering from 2 angles.  One is from the knowledge that there is always someone who is suffering more than me, suffering atrocities that I cannot even begin to imagine.  The other, is that as individuals, our own suffering is indeed the worst in the world. We walk in our own skins, live in our own minds. Ever since my RP diagnosis, 16 years ago, I have had people comment that they shouldn’t complain to me about their own suffering, given that mine must be so much worse.  I have also had people tell me that RP isn’t so bad, that it isn’t going to kill me and there are people who have it much worse than I do.  I believe we are all human, we all have value in our pain and in our joy and in our expression.  Our plights are our own, but hopefully by sharing our experiences with each other, we learn and find spaces of healing and understanding.  Or is this all bullshit?
Continue reading “Perspective on Suffering”

Eating Barbequed Iguana

I fell a few weeks ago, on the sidewalk, while gawking at another new group of hideous town houses that are being built in our neighborhood.  When I fell, I cried, not because it hurt, but because I felt humiliated, broken, slapped in the face yet again by RP.  My depression and self loathing voices took center stage and told me I was useless and really shouldn’t even be outside if I can’t manage to walk a block without falling down and scraping my knees.  I wanted to hide, from the RP and the day and the world.  I wanted to hide from myself, pretend I was graceful, dream I could float.  My sadness turned to anger and I stumbled home, terrified that every step may be the one to send me back into the unwelcome embrace of the pavement. Until very recently, this had been my usual response to falling.
Continue reading “Eating Barbequed Iguana”

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