My sister sent me this video clip recently, and I found this story very inspiring. Rare disorders such as RP and Ushers don’t get a lot of media coverage, so it was really great to see this story on the Today show thanks to reporter Peter Alexander and his sister Rebecca, who has Ushers syndrom. Ushers is similar to RP in that it is a degenerative disease affecting peripheral and night vision, but it also affects hearing.
When I watched the video, I instantly wanted to be friends with Rebecca – her energy and passion for life made me smile. I particularly liked the emphasis she placed on not letting Ushers define her, which is probably one of my biggest fears about RP. I am afraid that when people find out that I have RP, that is all they are going to think of when they are with me. I don’t want to be put in a box or labeled. That is why I often wait to share that I have RP until I know and trust the person I am telling. As Rebecca points out in this story, we’re often so quick to judge and yet never really know what people are walking around with.
I also appreciate her “seize the day” attitude in which she focuses on the present and doesn’t fear the future. She’s not letting Ushers stop her from anything she wants to accomplish, noting that it might just take her longer or she may need more support along the way. Sometimes I catch myself thinking of all that I want to do in life before I lose more vision when I should be focusing on what I want to do in life regardless of my vision.