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Stories From the Edge of Blindness

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

Month

September 2011

Useless

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.

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Everything Comes Back to 2 Little Letters

You may read some of my blog posts and wonder how in the world they relate to going blind; the  truth is, when you have RP your world seems to exist in chain links that lead right back to that RP stake at the root of everything. Going blind means having to make changes, of all sizes, in almost everything you do and those changes are like dominoes.  I had to give up driving because I am going blind.  I had to start taking the bus because I had given up driving.  My experiences on the bus relate to RP because I wouldn’t be riding the bus if I wasn’t going blind.  You get the gist.

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