by JV

Where to begin? Well, I am 23 years old and have Retinitis Pigmentosa. I have known about having this disease for as long as I can remember. It has always just been a part of me. There have been times when I wished I didn't have RP, but the older I get, the more I realize this is what makes me ME.

I inherited this disease from my mother, a wonderful woman. She just turned 49 last month and has been legally blind for as long as I can remember. She has always been a stay at home mom. I think this is hard for her at times because she always has to depend on someone else to get out. My father works hard all day and when he gets home, he usually wants to rest. The rest of us, I have 2 sisters and 1 brother, were always too busy going here or there to even notice that she was so cooped up.

I remember sometimes hating her for giving me this eye disease. I hated not being able to see when I went to the movies with my friends or when everyone was hanging out after dark outside. I hated always bumping into things and people laughing at me. I never realized how great my mother was until I moved out on my own 3 years ago.

I had just dropped out of my first college because it was too close to home, it was only a 20 minute drive away, and I didn't get the sense of being on my own. I took a semester off, then started on my second college at the age of 19. This school was about an hour and change from my mom's house. There I lived in a dorm and got a sense of what living away from my family really was like. It was also at this school that I met P, the best friend one could ever ask for.

Through my friendship with P, I came to understand my relationship with Mom. He had a different way of looking at life that somehow rubbed off on me. I soon realized what an extraordinary person my mother really is. I realized just how grateful I am that she is my mom.

A few years ago, I'm not really sure how many, my mom started her own business - Linda's Designer Flower Pots. What she does is paint terra cotta pots in one or two solid colors and then puts decals, or stickers, on them. She then sprays them with an enamel coating to protect the paint and decal. She does this using her funny reading glasses and a magnifying glass. They come out so beautiful. She then takes these pots, hundreds of them, to craft shows throughout NJ. She sells them there, usually on weekends, and makes pretty good money doing so.

Seeing her at home painting these pots, putting the decals on, and having my father check them for mistakes, is a sight I can not begin to explain. I watch her and think "Please, God, let me be like her one day."

For now, I am trying to deal with RP one day at a time. I am living with RP and have been since my second semester at my second school. I stopped going to that school after I think my third semester because I am not so sure what it is I really want to do with myself. I have a pretty good job in an office. I have my own cubicle where my computer fonts are set to large and my magnifying glass is there when I need it. With each passing day I can feel my eyes worsening a bit, but I try not to let it get me down. I know that this is me and I love me.

If you would like to have your story listed, please e-mail me at rpmail@jwen.com

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Page Created 10/20/01