Stories From the Edge of Blindness

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


social life


One of the most overwhelming feelings for me in connection to RP is uselessness, and a lot of it stems from the fact that I can’t drive.  As I have written and written, Los Angeles is a city of cars; most people have at least one and most everyone depends on their car to get them through their lives.  When you can’t, or don’t drive in a city that is carcentric, you can end up feeling that your usefulness as a friend, a wife, a daughter, is sorely diminished.

As I get older and my friends are traveling more and needing rides to the airport or wanting to go out to new and far off restaurants, I hate that I can’t ever be the one to offer the ride or step into the role of designated driver.  I sometimes end up  feeling like such a burden on my friends and it seems that all I am good for is a chat and a shoulder to cry on.  I want to be the friend who can be depended on for a ride or a rescue and instead I am always the one needing the ride or the rescue.  Maybe if I lived in more of a walking city or town, the field would seem a bit more leveled, but as it stands I simply feel as if I am not keeping up my end of friendships. I want to be the friend who can participate equally in everything.  I will never be that friend.

As a wife, it hits me the hardest.  My husband had surgery last year and it was devastating for me that I couldn’t take him or pick him up.  He had to rely on his brother while I waited at home for him to come back with bandaged knee.  It made me feel so inadequate, so useless. I can’t run out to the store in the middle of the day if it isn’t in walking distance, so he gets burdened with having to do all of our errands with me on his days off. I want to be the wife who can pick my husband up at the airport or run out to the market to get him a treat late at night. I will never be that wife.

This year, my brother was diagnosed with cancer and has had hospital stays and numerous doctors appointments and chemotherapy sessions, all of which I could have taken him to if I didn’t have RP. I could have visited him at the hospital any time without having to burden my husband or parents with giving me lifts.  This also makes me feel utterly useless as a daughter.  My father and stepmother aren’t young and frankly my stepmother really shouldn’t be driving at all, but they have been driving back and forth across town with frequency over the past few months.  If I wasn’t losing my vision, I could relieve them of some of the driving responsibility, but instead I prove to be a burden myself.  I want to be the sister and the daughter who can be there in a crisis and help out in every way.  I will never be that sister, that daughter.

Before the RP, I considered myself to be such an independent person.  I went where I wanted when I wanted and I could be there at the ready for the people in my life, little black hatchback in tow.  I try to maintain as much independence as possible now, but let’s face it, life without a driver’s license in Los Angeles can leave you feeling stranded and sometimes a bit worthless to those you love. I want to be able to visit my mom’s grave when I am missing her or drive to a reunion with old friends.  I want to be a person whose life doesn’t have to be planned around their disease.  I will never be that person.

The RP Anti-Social Predicament

Recently, a fellow blogger (whose blog, Delph’s Lair, you should really check out), wrote about an evening out with his wife and braving the unfamiliar social setting.  It really got me thinking about how isolating it can be to have RP; how we isolate ourselves, sometimes without realizing to what extent. I am first to admit that I tend to go to the same places with people who know about my RP, so I can feel pretty certain that I will be safe and comfortable.  After reading his post,  I began to reflect on the challenges that face an RPer in social situations.

I don’t want my RP to become something that I allow to control my life and my choices,  although certain social settings are a total disaster waiting to happen.  For example, the roving cocktail party; open bar and finger foods spread out on tables around the room and not a chair in sight. The idea is that you walk around gracefully with your martini and your little plate of fancy appetizers, mingling with all the star fuckers in the room.  The problem is that they don’t like it when you bump into them and drench their designer duds in vodka and olive juice.  I can’t imagine why.  Now, truth be told, I am not really someone who would go to a cocktail party and mingle with the star fuckers anyway, but you get the picture; walking around with drink in hand while being expected to be graceful, sociable and cool, presents a pretty huge challenge for someone with limited peripheral vision.

Another outing which can present challenges is going to the movies.  Those of us with RP are often afflicted with night blindness and just don’t do well in the dark; the RP eye doesn’t adjust.  So, if you are going to the movies with someone who has RP, for fucks sake don’t be late.  I always get to the movies early to ensure that the theater lights will still be up and I will be able to actually find my way to my seat.  I won’t even go into the theater anymore if it has gone dark.  A regular sighted person can walk into a dark theater and after a minute or two, their pupils will dilate appropriately and their eyes will adjust to the dark; someone with RP walks into the dark and the darkness doesn’t fade. On one auspicious occasion, I walked into a theater during the previews and was faced with what looked like an empty row of seats swimming in the sea of darkness; I put my hand out to feel for the chair back, but instead found myself feeling up the neck of a strange man and proceeded to fall into his lap and knock his popcorn to the floor.  He was pissed and I was humiliated.  I also always make sure that I go to the restroom before a movie; trying to leave a dark theater when you have to pee and can’t see a damn thing is asking for trouble or a spill down the stairs.

My personal most dreaded events are those that take place outside on super sunny days and last for hours and hours amid throngs of people.  Even if my retinal cells weren’t dying, I would not be a fan of the sun or the heat, but the RP makes it that much more uncomfortable.  I tend to keep my eyes focused on the ground and away from the glare of the sun, because the minute a spot of that sun gets through my sunglasses, the world turns into white nothingness and the pain starts.  I just don’t get that much enjoyment out of watching people’s feet for hours on end and I can also do without the guaranteed head and eye ache at the end of the day.

It may seem grim, but a life without cocktail parties, late movie arrivals and long crowded outdoor events, isn’t really all that bad.  There are still great restaurants and comfortable bars and dinner parties; movies with people who know how to be on time and dvd’s and blu-rays; hiking and walking with cool jackie’o sunglasses and big floppy brimmed hats.  The path may sometimes be harder to find but it is always there to be found.


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