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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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drinking

Stuck in the Escape

I feel sad this morning.  It isn’t new, feeling sad and writing about sadness; I do that a lot.  But, today it isn’t just sadness, or darkness or blindness, that is in my head and on my skin, it is shame. I have written about shame before, in regard to my disease and feeling different, but the shame I feel today has nothing to do with RP; it came long before blindness.
Continue reading “Stuck in the Escape”

Defeated

I have been feeling incredibly defeated since a recent family gathering. Defeated by my inadequacies, by my failing sight and my 40 extra pounds.  I have been abandoning myself, night after night, to the comforts of Cabernet and waiting to feel a sparkle again, or at least a bit of a shimmer. Today is not that day.

I was working out at home this afternoon, like I do most days of the week.  I have a dance DVD that I particularly like and after some kickboxing, I decided to get my groove on a bit with the dance workout.  During the first segment, I did a bit of a spastic leap, landed strangely, twisted my ankle and fell.  I just sat there on the floor, sobbing and dissolving into waves of self loathing.  I felt so broken.  I felt like a failure; an uncoordinated, over weight failure.

I was devastated to discover yet another thing that I would never be very good at or that I would have to take extra care doing because of the damn RP.  I know it sounds like I have a bit of a fatalistic attitude, but I arrived at this injury already feeling so broken and useless that it didn’t take much to send me over an emotional edge. Most of the time, I do maneuver through my disease with a certain amount of strength and a refusal to let it beat me, but sometimes the reminders of how RP makes me vulnerable feel like too much to bear.

For a fleeting moment, while I was dancing, I felt free from myself and from my blindness.  I let my guard down and felt a clarity of body and motion and then I stepped off into the abyss that is my deteriorating vision, slammed back into the reality of my disease and crashed to the ground.  I had forgotten for a moment that I can’t just dance without thinking of the constant threat presented by obstacles that seemingly pop up out of nowhere.  I can’t be free in my body because my motion is chained to my blindness.

I know that this is how I feel just in this moment and how I will probably feel the next time I fall.  But, I will also remember those fleeting seconds when I was dancing and I felt free.  It is that feeling of freedom that will lead me to brush the tears of defeat from my cheeks and to dance again.

Signs

Whenever a person discovers something about themselves as an adult that has been present or growing since childhood, they inevitably think about the signs they may have missed; things that would have tipped them off sooner, given them a clue to the journey ahead.

A few months ago, I was going through some old photos from when I was a small child.  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 a pair of sunglasses that were perched on a rock nearby.  I looked desperate to escape the bright sunlight and it is a look I recognize.  Growing up in California, my family was always going to the beach and wanting to bask in the sun, but I always preferred the cloudy days.  They all thought I was strange or moody, but even then, the sun actually hurt my eyes.

As I got older, I was called clumsy because 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, unathletic, always in a day-dream, but I was actually going blind.

When I was learning to drive, I remember being in the car one afternoon with my mom, who began shrieking that I was driving too close to the edge of the road and that we were going to go off the cliff.  My mom was prone to drama and 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 I actually 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 girl who has had too much to drink.  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 and crashed into street lamps and nursed the bruises that peppered my skin.  I thought perhaps I was drinking too much, but actually the edges of the world were disappearing and I didn’t even know it.

Today, the signs are of things to come rather than pre-cursors to what has arrived.  I wait for the markers of my deteriorating vision, notice how the glare of the sun gets meaner and how once effortless tasks are becoming more difficult.  And some days I am moody.  Some days I am careless.  Some days I dream.  And some days I drink too much.

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