It has been awhile since I have written anything and wish I could say it was because I have been so busy with school and living that the minutes have escaped me, but it wouldn’t be true. I try so hard to keep this story from turning into a tale of self-pity, and so I seem to avoid writing when my mood is singed and grey, but how can anyone go through an experience like RP without those clouded moments?
I was recently approved for Social Security Disability, which basically means that the government is going to help me out because the RP has left me unable to hold down any job for which I was previously qualified. On one side of the coin, getting approved for the disability is a relief; but, on the flip side, it is a reminder of how altered my life is as a result of having RP. Now that I am “on disability”, I feel like I have a big label stamped across my face telling the world yet again how I am not a whole person. It is as if before the disability I was a person with RP and now I am a disabled person. I suppose it is up to me to figure out what that means in the context of my own life. I have felt so different most of my life, like I have never really fit in, and RP is sort of the clincher to that reality. I felt like I had learned to embrace being different and accepted the limitations that come with going blind, so perhaps it is just a matter of fitting the disability piece into the crazy skewed puzzle that has been my life thus far.
Stories From the Edge of Blindness 
October 19, 2010 at 2:39 pm
On a day to day basis, you are a positive, smart, affectionate, warm human being. It’s fun to be with you, and you are a wonderful example of what a good human being is. Keep up the good work!
xxx
October 21, 2010 at 9:22 am
How was it for you emotionally in the times leading up to the point of having to quit your day job? If you worked with others, did your colleagues know about what was happening to you?
I’m going to hopefully get time to write about this. It’s weighing on my mind and I should talk about it.
October 22, 2010 at 12:40 pm
Hi R –
I think I get what you are going through right now; the work thing started to be a challenge for me in small ways at least five years ago and at first I did everything I could to keep it secret. I didn’t really know how to explain what was going on and as you well know, RP comes with a thousand symptoms and isn’t just as simple as I can’t see peripherally. As the years passed, the work challenges grew and I felt so drained and wrecked every day. Then I lost a job and while looking for a new one it became clear that I just couldn’t do any of the work I had been previously qualified to do, on a full time basis. I came to understand that because we, as people with RP, are constantly having to adjust and over compensate in areas that so many take for granted, a 70 hour week for us is more like 100 hours. Our eyes work over time every single minute that they are open. I felt a myriad of emotions about it; on the one hand I felt broken and incapable and on the other hand, I felt like I had the fucking disease and that was hard enough so why the hell should I have to continue to struggle through trying to work. I can still do stuff; I still write and I am taking some classes, but it is on my terms and on my time line and the RP has dictated the necessity of that. I won’t lie, I hate it. But, I also hated how much of a struggle it became just to make it through a work day trying to keep it secret and together and coming home at night too destroyed to do anything but eat, drink wine and sleep. I remember being in an all day meeting once that was held in an art gallery surrounded by windows; I had to wear my sunglasses the whole time and a girl approached me at the end telling me that I must think I was so cool all the time to have kept on sunglasses the whole meeting. Cool, try going fucking blind bitch. I wanted to tell her to fuck off, but I just laughed and walked away. I guess I have my angry moments too.
Definitely write about it and write about it; you know, as I do, how helpful it can be.
s
November 15, 2010 at 2:14 am
Thanks for this. It’s nice to know someone is there who understands this.
February 3, 2018 at 10:41 am
I know I just started reading these. I know that I don’t personally know you. But I’ve learned that I have some certain skills that apparently work across blogs, so here it is. You are SO not defined by RP. You are SO not defined by adversity. Yes, it is woven into who you are, but the strength of your spirit is palpable even from way over here.
February 3, 2018 at 10:49 am
That means more than you know! I am in tears here in my apartment in Hollywood (the good kind, the grateful kind).
February 3, 2018 at 10:50 am
Good to know the truth is washing over you and making you feel good.