When I was about nine years old, I was rather proud of the fact that I could spell retrolental fibroplasia, the term used back then for what is now called retinopathy of prematurity. I was recovering from surgery on my right eye--a very complicated surgery to remove a cataract and reattach my retina, which had become partially detached--and my visits to the eye doctor were so frequent that it seemed that RLF was taking over my life.
How much impact does RLF/ROP really have on my life? Today, my perspective is quite different. I am comfortable discussing it openly; and I have had several surgeries and therefore plenty of opportunities for learning how I want to balance the focus on ROP. I don't claim that other people will always agree with my choices in this.
I separate my discussion of the impact of ROP/RLF as a medical condition from my discussion of the impact of blindness in general. Blindness is something I consider to be an outcome of ROP; for all people with ROP do not develop blindness, but they do face complications that must be managed medically in order to prevent further vision loss. Furthermore, those who are considered legally blind must still often manage complications in order to prevent vision loss. Blindness, on the other hand, impacts life in ways that present other management needs: the need for alternative reading techniques, the need for new ways of getting around, the need for new ways of doing any number of other things... Whether or not I think about these management tasks depends on how deeply I have integrated the management of blindness into my life and how much my need is dependent on the assistance of other people. So the impact of blindness varies; and I share this impact with people who have other eye conditions.
I had a severe case of ROP, and from the time I was a little girl I had only a small amount of vision. I learned to read braille when I was five; and I began using a cane when I was seven. Numerous other skills were likewise normal to me. For me, blindness does not have the same impact that it has on people who lose their sight later in life. It also does not have the same impact that it has on people who never learned these skills.
Having said that, there were times when I struggled with my feelings about blindness. Relating socially has not always been easy for me; and this caused me great emotional stress at some points in my life. Chronic unemployment has also been a problem for me, like a number of other people who are blind, despite the fact that I am educated and well-prepared to work. These things remain significant impacts of blindness.
Finally, the impact of blindness varies as other things in my life take on more significance. These things include social relationships that may be positive or negative and may ease or aggravate the stress of blindness-related problems, other medical conditions that need to be managed, projects that I have taken on,, etc. At this stage of my life, I don't perceive blindness or ROP to be the most significant thing impacting my life.
