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 felt like some depressive freak and my family thought I was totally weird; now I know that I am not only weird, but that the sun and RP are not friends.

Have you ever had your pupils dilated? Suffered the bright white light used to uncover the mysteries behind your irises?  Have you ever had to wear those ridiculous plastic eye coverings after an eye exam, because the sunlight was so intense you couldn’t see?  For someone with RP, the sunlight, or any bright light really, has that effect all the time; no dilating drops required, only a rare genetic mutation.

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, and waited for my dad to pick me up. The day began with a series of scary sounding tests; well, let’s face it, tests by any name sound pretty fucking scary and I had a history of doing lousy on tests.

The first test of the day was another Visual Field, but with a twist. Rather than being scored by a computer, I got a live proctor. Damn, there would definitely be no cheating. During a Visual Field, you are asked to place a sterile patch over one eye, stick your face into a large white dome and press a button each time you see a flashing red light. Sounds simple, straight forward, totally passable. It sucks. The proctor instructs me to stick my face into the dome and asks if I can see the big red light in the middle, then tells me to focus on it for the next fifteen minutes, with one eye, while pressing a button as other red lights flash in the distance. Instantly, I feel an impossible urge to blink and my eye starts to dry up. I am really trying to focus on the big red light in the middle, but it keeps disappearing; and then I remember the flashing red lights that are supposed to be appearing with some regularity but seem to be on hiatus. Then, right there in front of me, like a beacon of hope, I see a big red flash……or I think I do…….so I press the damn button, hoping that I answered correctly.

Half an hour later, I am excused; sore neck, dry eyes, and fuzzy red lights all over the room.

One down………

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 it… is hardly an unforgettable name. I pictured a man with a jovial disposition, kind and of course a total genius who was going to give me hope of a cure for my rare and unique disease. I imagined him a bit portly in stature with gentle hands and a slow easy voice. He would exude warmth and compassion. He would spend time with me, explaining the intricacies of RP and comforting me in my time of distress; or maybe he would tell me I didn’t have it, maybe he would tell me it had all been a big mistake.

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 at the beach and were very blonde – who suffered from a rare eye disease that caused something they called “tunnel vision”. There were attempted examples of what an RP sufferers deteriorating vision is like and it was terrifying; can you imagine looking at the world through the hole in a straw? Knowing that the hole would get smaller and smaller until the world finally disappeared? I remember feeling so sad for the family and thinking how lucky I was that everyone in my family had such good eyes.

The second time I heard the words Retinitis Pigmentosa, I was in my late 20’s and visiting my optometrist for a routine refraction . I was just there to get some new glasses because things were starting to look a little foggy at night, but he had a different idea. I remember him asking if he could dilate my pupils and take a closer look inside my eyes; I remember it seemed like he was looking into my eyes forever and the bright lights burned, and then he said something about bone spicules in my eyes and a rare disease and that I should see a specialist named Heckenlively…….I nodded my head and took Heckenlively’s number and proceeded to blow the whole thing off. There was no way I could have some rare eye disease; no one in my family even wore glasses…..except me of course.

Fast forward about five years; I am walking out of a Borders bookstore heading toward my car, and as I turn a darkened corner, the sidewalk in front of me literally disappears. It was like the darkness had consumed the world for that terrifying moment before I looked up and found a street light shining a block away. I rushed toward the light telling myself to call the eye doctor in the morning because I obviously needed some new glasses.

Two days later I am in the Ophthalmologist’s waiting room, filling out the first time patient form, and I come to the question about previous problems with eyes. I hadn’t thought about my visit to Dr. Vogel, the aforementioned optometrist, or RP, in five years, but sitting in that waiting room I remembered and I think at that moment I knew something was wrong, something that couldn’t be fixed with new glasses. That afternoon I had my first visual field test and was once again referred to Dr. Heckenlively. This time I couldn’t ignore it.

Five months later, I was formally introduced to Dr. Heckenlively and Retinitis Pigmentosa.

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 am going blind from the outside, in. I am losing my peripheral vision at an unpredictable rate, and for this there is no treatment, no cure, no answers. My retinal cells are dying, with no hope of resuscitation. I may be completely blind in a year, or ten years, or thirty years; I may or may not lose my vision completely. RP is a waiting game with no time table and constant challenges. RP is the enemy that I cannot fight, but that doesn’t mean that I give up……not today anyway.

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