Stories From the Edge of Blindness

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


November 2015

Dining Out

Joe and I often eat out when he has a day off.  We tend to go to the same places where we know the food is good and I am familiar with the lighting and layout of the restaurant. Dining out with RP definitely has its challenges and I like to be ready for whatever comes at me out of the dark corners that occupy most of my vision.

There are often awkward moments with waiters who I don’t see coming with menus and plates of food. Occasionally I bump into someone while waking to the table, but I have Joe to help guide me and I always follow closely behind him.  I tend to avoid using the restroom so I don’t have to walk through a crowded room and risk a possible collision with a server carrying trays of food and drinks.  I know that waiters and patrons must notice that something is off with me, but they usually just stare and don’t say anything.

Last weekend, we went to Canters Deli; a historical landmark in our part of Los Angeles.  It is almost always crowded, but we have been there a lot and I made it to the table unscathed.  We had an exuberant and quite gregarious waiter who recommended I order something new, which I didn’t regret.  He was great about checking on us and refilling coffee and I thought I was going about my meal with my RP undetected, but I was wrong.

When our waiter brought the check, I asked him if I could please get the uneaten part of my meal to go.  He smiled and looked at me quizzically, then looked down toward the table.  I followed his eyes and saw that he had already placed the to-go container in front of me.  Naturally, I didn’t see him, because I only have 15% of my peripheral vision.  Usually, waiters just give me a stare and a grimace and move along, but this guy said something.  He commented on having noticed that when he brought our plates, I didn’t even flinch in acknowledgement of his being there.  I was actually grateful that he took the time to say something because it gave me the opportunity to tell him about my vision loss. It is always refreshing for me when people don’t shy away from the RP elephant in the room.  So, I gave my little spiel about RP, I made a little joke, he made a little joke (which I  like because it lightens the conversation) and wished us a good afternoon.

I know I have written about this before, but because I don’t see what I don’t see, RP often sneaks up and reminds me of the steel grip it has on my life.  I struggle a lot with feeling different and inadequate, so when someone treats me like a grown up and talks to me about what they notice in regard to what I am obviously not seeing, I find it releases me from uncomfortable and awkward feelings. The waiter at Canters got a good tip.

Road Burns

I shared a Facebook post this morning from a fellow RPer which joked about inanimate objects exhibiting hostile behavior toward humans.  I often post these kinds of things, in the spirit of camaraderie and to give some understanding, through humor, to those who don’t know what it is like to live with RP.

I know that everyone has accidents.  Everyone bumps into things, trips and even falls on occasion.  I often get the, “that happens to everyone” remark when I talk about my collisions, bumps and spills.  But, when you have RP, it isn’t the same; it happens way more often and every time it happens it is as if  the door, floor, wall and RP are all slapping you in the face.  I have been cut, bruised and even broken bones because I didn’t see something that came upon me as if out of nowhere.  Today, it was the curb.

I was walking my pugs, Blossom and Jade, to our neighborhood park, and to get to the park you have to cross a busy street.  There is a stoplight, so it isn’t usually treacherous and I have crossed at this particular intersection so many times, I thought I could make it across without a major scan of my surroundings.  So, I started to cross the street, double dog leash in hand, when my youngest (only 10 months) decided it was play time.  I rushed to separate the dogs and get out of the intersection, and before I knew it, I was doing a tango with the curb and falling like a steel brick onto the sidewalk. The irony of my earlier Facebook share was not lost on me, even as I picked myself up off the ground.

My injuries were pretty minor this time.  I got a couple of skinned and bloody knees and a solid dose of reality and shame, but I still went to the park and got to watch my girls play.   it was just another day in the arms of RP and another intimate moment with the pavement.

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