My earliest memory of having to deal with my impending blindness occured when my mom took my siblings and me to visit the ophthalmologist’s office. I was probably seven years old, and the office staff took me into a dark room to dilate my pupils. This required administering a series of painful eye drops, and I remember squealing, “It burns!” I sat there in the dark, trying desperately not to cry, because I was told that if the tears washed away the eye drops, we would need to start the process all over again. Once my pupils were properly dilated, the ophthalmologist shined a bright light into my eyes, flipped various lenses in this huge machine that I had to look through, and asked me to read characters on an eye chart. At the end of the visit, I was given a cool pair of plastic sunglasses (I was seven years old, so they were cool.) The ophthalmologist delivered the diagnosis of retinitis pigmentosa (RP to my mom), and she was informed that it would probably result in significant loss of vision or blindness. We were subjected to this experience every year with the same result, but we were never informed about any services for the blind. I am convinced that all of our lives would have been drastically better, if only we were made aware of the real truth about blindness as defined by the empowering philosophy of the National Federation of the Blind.
I truly respect the medical professionals that have chosen to make it their life’s work to save and/or restore vision. It must be extremely challenging to admit to a patient that there is nothing you can do to prevent them from going blind. Almost twenty years after the prognosis, the RP resulted in my blindness. The thought of going blind frightened me for years because I was unaware of the alternative skills that empower blind people to live independent, productive lives. I appreciate the frankness of the ophthalmologist’s disclosure because the awareness of the probable outcome assisted, in a small way, in my adjustment to blindness. However, with a little more effort, those twenty years of fear and ignorance could have been twenty years of preparation. A prognosis of blindness need not result in fear and hopelessness. For all of the medical professionals faced with the challenge of informing a patient about their impending blindness, members of the National Federation of the Blind have prepared a document to help you understand what you can do to best help your patients, “If Your Best Efforts Fail.”
The National Federation of the Blind has taught me that although going blind can be scary, being blind need not be frightening at all. Had I been told that blindness is by no means a sentence to helplessness, isolation, or despair; I would have had more courage. Had I been made aware that thousands of independent, self-sufficient, happy blind people are managing the tasks of everyday living with competence and ease; I would have been more hopeful. Had I been exposed to a network of blind people traveling around the world with poise and confidence in their capabilities, raising children and holding leadership positions in their communities, and competing on equal terms with their sighted counterparts; I would have been more convicted.
As a member of the National Federation of the Blind, I was welcomed into an extended family of blind teachers, blind lawyers, blind chemists, blind engineers, blind doctors, and countless other blind professionals. Even though the best efforts of committed, dedicated medical professionals failed to save or restore my sight, members of the National Federation of the Blind encouraged and supported me to obtain the proper training, opportunity, and a positive attitude about blindness, and as a result, I have remained a capable, independent, fully-participating member of society. I am proud to be a member of a movement that knows the truth about blindness, and I am committed to sharing this truth with others. There is a fire in my belly, and it burns with love, hope, and determination to encourage all blind people to live the life they want.