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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

Blindness

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”

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Beyond Shades of Grey

I never believed that the act of living happened in black and white.  I thought it happened in all the shades of gray, the spaces in between, the cracks and caverns and hidden places.  These past few weeks, I have felt life happening in all the colors that live inside the marrow of my heart, seen that the hidden spaces aren’t grey at all.  Through blindness, I have learned to see the colors and contours of pain and grief, love and joy, so much more vibrantly than when I was simply looking and unaware of what could bloom from the shades of grey, what lurked inside.  It seems cliché to say that through blindness, I have learned to see, but it is true in so many ways.  I have not become enlightened.  I have not become kinder or smarter or better.  I have just stopped looking, and in doing so, life comes into focus so much more clearly than when I took my eyes for granted, or time or space or love.  In just this week, I have felt desperation, compassion, depression, anxiety, affection, love, joy, contemplation, appreciation, despair, bitter disappointment and gratitude.  I have wanted to die and wanted to try to stay alive one more day. I have wanted to venture beyond what I know and I have longed to stay perfectly still.  I have done something new, and fallen back into old patterns that feel familiar and safe.  I have lived so many colors in just one week, not because I strived, but simply because I continued to exist. Continue reading “Beyond Shades of Grey”

Lethargy

In continuing my recorded poetry series,  I am sharing the second of three poems published in Stepping Stones Magazine in 2015.

If you are interested, you can subscribe to my YouTube page here.

Lethargy

I am silenced by grief.
By shadows and blindness and the infernal heat wave
that coats my city like an itchy, heavy blanket.
I am coming unhinged.
I try to climb up through my lethargy,
snap my pieces back into place,
but the gravity of your absence pushes me
down on the floor, where blindness doesn’t matter
and the silence is intoxicating.
If I am perfectly still, the chaos won’t touch me
and my ghosts can’t find me.
If I rise to the occasion of my creative pulse,
I may burn up in the greedy spark of my fear.
Darkness chases me through the passages of my life,
whispering that I am useless and defective.
The sacrifice is my voice.
It is a sacrifice I am not yet willing to make.

 

Breaking into 50

The rain has been with us for days, washing debris from the sky and the pavement, leaking in through windows, trying to trick us into feeling unsettled. But, the rain has always made me feel safe, contemplative.

This year I will be 50.  I may write about it….a lot.  I might just push it into the dirt after this post, but that seems unlikely. I honestly find it slightly unbelievable.   I want to say it is because I feel 30, but I don’t.  I have brutalized my body for so many of my 50 years, and it holds the scars, reminds me how time both escapes and binds.  I am told that I don’t look 50, but grief has left lines on my face and darkness beneath my eyes. It has aged me, but also strengthened me.  I find the idea of 50 unbelievable, not because I crave youth, but because there is so much that has been chipped away, it seems impossible for so many years to have passed. Continue reading “Breaking into 50”

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”

Thirty One Years

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Thirty one years ago today, after a long battle with a gene mutation that gave her multiple kinds of cancer, my Mom died. She was 52 years old.  This photograph was taken on her 50th birthday.  This year, I will turn 50.  It has been a lifetime without her and I miss her every minute of every day. Continue reading “Thirty One Years”

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”

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