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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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Fear

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”

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”

Adding My Voice to the Mix

I have been wanting to, and feeling afraid to, write this post.  I wasn’t going to write it today; I was going to write about being sick and how I have been sick the past few days and how I just don’t do sick very well, but then I read something this morning and I think it is time for me to write the post I have been so afraid to write.

Since the school shooting in Florida, I have read a number of posts, some about the shooting specifically, some about guns, some about the fear that comes out of living in a gun culture, some about the violence and atrocities around the world that we know so little about or turn away from because it hurts too much.  They have all had a huge impact on me, in different ways and from different directions.  Please read them.  I think they are vital and important.  I think what they tell us and teach us is crucial.  “Guns” from Tom Being Tom, “The Marriage of Heaven and Hell” and “The Good, the Bad and the Ugly” from Bojana’s Coffee and Confessions to Go, “An Unburdened Childhood” from A Light Circle, “Scariest Thing that has ever Happened….Terror at the Movies from Visions and Giggles, and the post I read this morning, “We are so Clueless” from Brandewijn Words.
Continue reading “Adding My Voice to the Mix”

Writing Sample Part 3 – Signs

We all look back at our lives, pick them apart and look for clues that would have helped us along the way, told us what was up ahead.  We discover things about ourselves that may have been present or growing since childhood, and inevitably think about the signs we might have missed.

A few months ago, I was going through some old family photos, and I came across a picture that was taken on a beach in Mexico when I was about three years old.  My eyes were squinted against the glare of the sun and I was reaching for my mother’s sunglasses, perched on a rock nearby.  I looked desperate to escape the bright sunlight and it is a look I recognize, a feeling I have experienced for years.  Growing up in California, my family was always going to the beach.  My parents and my siblings loved spending hours in the sun, but I preferred cloudy days.  I was called strange, moody and different, but even then, the sun hurt my eyes.

As I got older, I developed a reputation for being clumsy; I was always tripping and stubbing my toes and knocking things over. I couldn’t hit a softball in P.E. class or catch the ball when I was forced into the outfield.  I appeared careless, un-athletic, lost in day dreams; I didn’t know it then, but my retinas had begun to die a slow death.

I remember an afternoon when I was learning to drive; I was in the car with my mom, and she began shrieking that I was driving too close to the edge of the road and we were going to go off the cliff.  My mom was prone to dramatic expression; there wasn’t really a cliff, just a five-inch drop off the road into the dirt.  She thought I wasn’t paying attention, but actually, I had no idea how close I was to the edge.  I couldn’t see the side of the road.

Into my 20’s I continued to trip and fall and live up to my reputation as either the clumsy day dreamer, or the newer moniker of drunk girl.  I had a friend tell me I was the only 24-year-old she knew who actually fell down and skinned her knees.  I missed curbs, crashed into street lamps and collided with pedestrians racing down the Boston sidewalks to escape the cold.  I thought perhaps my friends were right and  I was drinking too much; I had no idea that the edges of my vision were disappearing.

For years, I nursed the bruises that peppered my skin and laughed along with my friends about my clumsiness.  I chastised myself for being careless and inattentive.  After my RP diagnosis, I became diligent in searching for current markers of my deteriorating vision. I notice how the glare of the sun gets meaner and how once effortless tasks are becoming more difficult.  I feel the light slipping away every time I call out my husband’s name, unable to find him right in front of me.  I feel helpless and terrified as the darkness slowly swallows up the contours of the world.

On Days Like Today

In a few hours I will have my head in a big white dome, pushing a button when I see red lights flash.  I am feeling particularly anxious about my visit to the specialist this year, which I suppose is clear as I have written about it for the past few days.  I feel a combination of fear and dread and it is on days like today that I miss my Mom even more than usual.

My Mom died 24 years ago, long before my RP diagnosis.  But, I know if she were here she would be comforting me.  I miss the feel of her arms around me and the soothing tones of her voice.  I miss her unconditional love and support and the way she could always make me laugh even when I felt afraid.  I remember her singing me funny songs as we drove to the dentist, because she knew how terrified I was; I wish she was here to sing me a song today.

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