Stories From the Edge of Blindness

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


March 2011

A Walk into the Future

I admit that most days, I stay in my house.  It isn’t because I am afraid, more because I am comfortable and lazy. I have been telling myself for weeks that I need to get out of my comfort zone and out of the house and find a place to hunker down and write.  A friend suggested the library and I knew it would be perfect; quiet, surrounded by books and no food allowed.  But I didn’t go; I stayed in the house and watched tv and ate too much and abused myself for being fat and lazy and useless.  Why I found this a better option is a total fucking mystery to me, but the weeks floated by and the pounds added up and I found myself moving at the pace of “Days of our Lives”.  I could clearly see the corner I needed to turn, but I was making sure the approach was as slow as possible.

Today, I turned the corner.  I packed up my brand new bag made from recycled materials and headed out to my local library.  The library is about a four block walk from my house, down Sunset Blvd.  On the journey I passed a flamboyant man taking Polaroids of a motel frequented by hookers, a homeless person painstakingly organizing the contents of his shopping cart, and a throng of wide-eyed star fuckers searching for Charlie Sheen outside a famous strip joint.

When I got to the library I was met with an entrance free of loitering gang members, which I took as a good sign.  Maybe this library thing was actually going to work.  I walked in and it was quiet; wonderful.  It was also full of people reading and working at the desks and surfing the net on the library’s computers.  It was perfect.  I was thrilled.  I headed to the children’s section.

Why the children’s section?  Well, for one it is in the back of the library and I wanted to be far away from the temptation of the exit.  I also like the smaller desks and chairs because my feet actually touch the floor. Yes, I am that short.  And, I figured if there was going to be noise, I would prefer happy kid noise to grumbling grown up noise.

So, here I am in the kids section of my local library and I am actually writing.  I think I could make a habit of this.

Cross That Bridge

When you are losing your vision but you don’t know how quickly or to what degree or even how much will eventually be lost, you are sort of forced to adopt the attitude of crossing bridges when you come to them.  I realized recently that what has felt like one of the most frustrating aspects of having RP, the uncertainty, could actually be liberating.  I have spent the years since my diagnosis in endless hours of contemplation over ‘ what if’s”.  What if I am blind by the age of 50?  What if I lose all my vision?  What if I stay this sighted for the next 20 years?  What if there is never a cure?  What if there is?

I have known about my RP for almost nine years and my vision has been relatively stable for the past five.  I know that I can’t count on that, but I have also learned that living in dread of the unknown keeps me frozen and fearful.  I need to truly embrace the idea of living in the moment and start feeling my life in its current rhythm and not allow it to function as an afterthought to what the RP may bring.  In this moment I see and I am grateful. I will cross tomorrows bridges when they come.

Blog at

Up ↑