Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


March 2012


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.

Creative Blind Chick

When I was diagnosed with RP, I remember feeling lucky that I wasn’t a painter or a photographer and that my particular creative outlet wasn’t reliant on my eyes.  I had never been very good at hands on creative expression and I thought perhaps my inability to paint or to capture a clear image on film might have been due to the fact that my eyes probably never worked quite right; although that may be true about taking photographs, I do realize that I can’t draw because my brain just doesn’t work that way.  But, a few years ago I discovered that there was something I can do.  My friend Patricia taught me to crochet and I found that I really love it.  I love putting colors together and designing patterns and I love the feeling of getting something lovely and tangible at the end of the skein.

You may wonder, how that hell does a blind chick make scarves and blankets? Well, it is because this chick is RP blind.  My peripheral vision is shot, but my close up central vision is still pretty good and as it turns out, perfect for something like crocheting.  I know that I won’t be able to do it forever, but I am grateful to be have found another creative outlet.  I get to give people gifts that I have hand-made and I am even making an attempt at selling my creations. If you are interested in seeing what I make you can check out my stuff by clinking on my blogroll link to FloweringInk Plays With Yarn.

I know I will never be a painter or be able to capture images that pierce the soul, but I can make you a blanket to keep you warm.

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