Stories From the Edge of Blindness

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


August 2011


I have always loved words, but some are just extra special, like Marzipan.  It has a little of everything; a little yum, some zing and decadent pleasure.  I love the way it looks on the page, the way it sounds and the way if feels on my tongue.  But these extra special words also make me think of how much I have to lose as I lose my vision. Although I will still be able to hear the words and feel them roll across my lips,  I can’t imagine a life in which I can’t read the words on a page. A time when I won’t be able to see the words that I write.

The loss of the ability to read was my first fear after being diagnosed with RP.  I have been blessed, thus far, with a very slowly progressing case of the disease, but there have already been changes in the ways and conditions in which I am able to read.  I used to love to read on the bus; it was a great way to pass the time and a deterrent for some of the nut jobs that feel the need to chat.  As my vision has gotten worse and my prescription subsequently stronger and my light sensitivity impossibly extreme, reading on the bus during the day is no longer an option.  I can’t read with my glasses on because they are distance glasses ( it really is a crazy strong prescription) and I can’t take my glasses off because I can’t bear the exposure of my naked eyes to the sun. I also can’t text, write or see anything on my cell phone. If I can’t feign sleep,  I am fodder for the crazy chatter.

I used to be able to read anywhere for any length of time; reading for hours has always been one of my favorite pastimes.  Now, I can only read if the light is just right because I can’t see in darkness or brightness.  Also, the actual text has to be big enough, or the strain of trying to focus on the page is so exhausting, I am only good for about five minutes.  I will admit that I tend to overdo it and end up with aching eyes that can only be soothed by a dark room and some cold compresses.

As far as reading on the computer, this was where the changes first reared their wicked heads.  The glare of the screen, coupled with the effort of focusing on the letters and words, is a pain fest waiting to happen.  So, I have learned to take frequent breaks and never try to read documents that are too lengthy; those get printed out so I can read them the old-fashioned way and  I print all my own work to do edits and re-writes on paper.  I know there is no iPad in my future because I will never be able to read a whole book with the bright white screen  taunting me, but that is ok because I am still in love with real books.

So, I adjust and try to ride with the changes in my vision that force the changes in my habits and although I still feel afraid of the day when I won’t be able to see the words, I will read and read until the darkness has taken me completely.


My eyes burn, feel swollen and starched this early in the morning.  The light through the curtains is like an assault. It is as if all the color and texture in the world has been bleached out. It is the first of my daily reminders that I am different, that I am going blind.  I usually lie in bed for a few minutes to allow myself time to adjust to being awake, and then I get up to make sure the curtains are all drawn in the front room; I can’t even look out the window without putting on my sunglasses because it burns so badly.  Perhaps vampires really just have RP and not a mythological thirst for blood.  I have definitely always been a night person, to the point where my family called me strange; they all love the sun. I came across a photograph of myself recently in which I was a three-year old on the beach squinting from the sun and reaching for my mom’s sunglasses.  Even then I wanted out of the glare and perhaps began to long for cloudy skies.  You can see why Los Angeles is my nemesis.

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