Stories From the Edge of Blindness

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


March 2010

Here Comes the Sun: Run for Fucking Cover

I have always hated bright sunny days, and the older I got the more I avoided being outside.  I waited for the rare cloudy day to grace my Los Angeles home and longed to live under cover of darkness.  I... Continue Reading →

Dx Day: Visual Field

On the day of my formal introduction to Retinitis Pigmentosa (from here on out affectionately referred to as RP), I woke up to a chilly five a.m. alarm, took a quick shower, threw on lounge around the Eye Institute clothes,... Continue Reading →

A Name You Can’t Forget

So, you may be thinking to yourself, what the hell kind of name is Heckenlively and what sort of man could be its carrier, so to speak. When I heard the name, I knew I would never forget is... Continue Reading →

Third Time’s a Charm

The first time I heard about RP was from a story on 20/20 when I was a kid. Barbara Walters told the tale of a family - I remember all the kids looked like they spent a lot of time... Continue Reading →

What is RP

So I thought I might give a little overview of RP (Retinitis Pigmentosa), and then wondered, do I give a textbook definition or a behind the scenes definition; I opt for behind the scenes. Basically, having RP means that I... Continue Reading →

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