So I told myself when I started this blog that I wasn’t going to be maudlin or depressive, but the truth is that when you have a disease like RP, it is impossible to avoid the dark days (literally and figuratively). When I was first diagnosed, I allowed myself a very brief period of sadness and anger and then went along with my life as if I was made of granite, all bright and shiny and tough; although I had never been particularly bright and shiny prior to my diagnosis. I prided myself on how well I dealt with the news that I was going blind and joked with people about how I would get to have one of those cool dogs one day. I stepped far away from my feelings of fear, because they were truly too much to handle. The whole thing felt like a dream, like something I wasn’t really connected to; I went through the motions of dealing with the RP, but I didn’t really deal with it.
Now, 8 years into it, I know that the dealing with it is both constant and comes in waves. The constant part is the day to day; the not being able to drive or go outside without sunglasses;having to live in a house with the curtains always closed and not having the freedom to go out at night alone; these daily ways that independence is stripped away. The waves are full of the uncertainty about the future and the fear of just how dark the days may become.
The waves are crashing on my life right now, but they will recede and I know, like always, I will shake off the gloom and see the true fortunes of my life again.