Stories From the Edge of Blindness

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


June 2010

The Honest Blind Truth

So the truth: going blind sucks.  It isn’t a gift or a renewal on life or a connection to some fucking deity; it just sucks.  It sucks because I can’t do an errand like a normal person; jump in the car and get some milk.  It sucks because I can’t see the computer screen clearly and if I sit in front of it for too long my eyes ache and tear.  It sucks because every day is harder than it needs to be. And it sucks because life is hard enough without this stupid impending blindness thing.


A year after Dx day, I returned to Jules Stein for my 1 year follow up appointment.  Dr. Heckenlively had moved on to more research oriented pastures and I had been shuffled off to Dr. Sarraf, who I guess had been assigned half of Heckenlively’s RP patients.  Luck of the draw; Dr. Sarraf is wonderful, even if he gave me some really shitty news the first time I met him.

I only had to bear one test before meeting with the doctor, but I still felt terrified. I felt like I was waiting to be sentenced all over again; probably because there is no predicting what changes have occurred in a year, when you have RP.  It is a disease with no rhyme or reason.  I hadn’t had much of a chance to ask Dr. H any questions the previous year, so I was determined to get some in with this new doctor.  I wanted to know how much peripheral vision I actually had left.

A normal visual field spans about 180 degrees.  That day, Dr. Sarraf told me that my visual field was between 50 and 60 degrees.  I had lost over half of my peripheral vision; no wonder I was constantly bumping into things.  And that wasn’t the worst news for me that day.  I was expecting that news.  Then he told me I have cataracts in both eyes.

Cataracts?  What the hell?  How can I have cataracts?  Old people get cataracts and I am only 34.  Wasn’t it enough that I had lost half my peripheral vision because my retinas were slowly dying?

I learned that day that most people with RP develop cataracts, and that no one knows why.  I wondered what other gifts RP had in store for me.  The world was becoming my dark oyster.

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