Dear Retinitis Pigmentosa,
I first met you 9 years ago and what a roller coaster of a relationship we have had since. You have brought me a lot of heartache, pain (both physical and emotional), and lots of difficulties. But, at the same time, I have been blessed with many opportunities, learning experiences, and friendships that I otherwise wouldn’t be have had. I can’t believe what we deal with on an everyday basis but hey, we’ve made it 9 years together. We graduated college Cum Laude, so I think we’re doing overall pretty good.
I remember when I first met you (was diagnosed) in middle school. I had no idea why I would feel light headed every time I would go from a dark to light or light to dark situation. You were trying to tell me something, weren’t you? I can’t tell you how many times the ambulance was called in middle school because I would pass out. I went from doctor to doctor trying to figure it out. Finally, my Pediatrician saw you… “Jessica, you have little dots in the back of your eye, we need to send you to a Retina Specialist.” And that’s where it all began with Dr. Edwards at UT Southwestern. Dr. Edwards was a huge help over the next several years, even after he moved to the Mayo Clinic. I then got referred to the Retina Foundation and Texas Retina Associates and they have been our guide ever since.
Like I said, we really do have a love hate relationship. Some days I really hate you but then other days I don’t mind you so much. Times I have hated you.. well lets see:
1) That time I fell in Tulsa because I didn’t see the huge dip in the snow or the ice patch.. tore my miniscus
2) Time that I almost severely injured an elderly lady at Apple when I tripped over her walker
3) Whenever I really want to go somewhere, but can’t easily because I can’t really drive
4) When I get harrassed or stared down or something similar because I use a cane
There are many others, but these are the ones that come to mind. Driving is probably the one that is most difficult to deal with.
A good tool that has helped us get a long better is the cane. It in itself though has brought about its troubles. People don’t know about you everywhere I go so they don’t get why I use the cane. I get a lot of stares.. but really? I think people are jealous of us. 😛 (Kidding, of course) Now that I have the cane, we get along a lot better. I don’t trip over things, I don’t miss as much. People are just more aware of us and overall are pretty helpful. It’s a good feeling.
There are many things that you have brought me, though. I have become knowledgeable about a whole new world of disability, other than the deaf/hard of hearing world. I have a lot more respect, not that I didn’t respect them before, for individuals with vision impairments. I am really interested in Assistive Technology for this population and it has opened up so many doors for my career. With my disability as well, you have brought me some financial assistance for school through DARS. Last, but not least, I have met some truly amazing people because of you. Since I was seen at the Retina Foundation for years, they were quick to hire me as an intern in the Pediatrics Lab. One of my best friends is blind because of RP and I met her through a mutual friend who introduced us because we both had it. Things like that make me like you.
I’ll write you soon when I have more to say.