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.
July 10, 2010 at 1:39 pm
Reading your blog helps as RP can be quite isolating. Why is it so difficult for some to understand “good days” and “bad days”? I am better adjusted to the not driving thing. My husband of nearly 20 years is a dream. I am learning white cane; nothing like walking around your neighborhood blind folded using a cane!!
July 11, 2010 at 3:14 pm
I agree so much that having RP can feel isolating; even having the most amazing partner (my fiance is also a total dream), there are still times when we need to feel connected to others who truly get what we are going through. RP is such a random and unpredictable disease and sometimes really hard to explain. How does it feel learning the cane? You are a brave woman.
susan
July 12, 2010 at 1:18 pm
I’m also interested too in what you have to say about learning the cane of you feel like sharing. I’m interested (and pretty scared!).
r
February 3, 2018 at 8:00 am
It is already apparent you have a strong core. Just the fact that you started this and have continued it. You have to be an amazing person.
February 3, 2018 at 8:14 am
You are lovely and kind!!!!!
February 3, 2018 at 8:22 am
I just calls it as I sees it!
February 6, 2019 at 7:37 am
About a week ago your story became somewhat more personal. I was in the house alone ranting to no one in particular about Trump when my daughter came home from her doctor’s appointment. “How did it go?” I asked. She broke down and said that she has moderate to advanced diabetic retinopathy. I’m ham handed about these things. I offer a hug and and an I’m sorry and blunder from there. We talked about it for awhile. The doctor told her that she likely won’t lose her sight but at some point will have to begin some treatments. About the best thing that I could offer her that day was the promise to tell my wife because we both knew that she would freak out the way she usually does when confronted with this sort of news. In the end that part went better than I’d expected.
I offered that lame attempt at consolation, “They might come up with a cure.” and she reminded me that it’s been 20 years since she was diagnosed with Type 1 and they’re still nowhere.
We haven’t talked much about it since and I’ve not yet looked on the internet for more information. I guess I’m being chicken shit. I guess that writing this is reminding me that I’m being chicken shit so I need to start getting some information together.
February 6, 2019 at 11:17 am
First, you are not being chicken shit. This stuff is hard and we all need to process in our own way.I know that it helps my husband to get as much info as he can about RP and the research that is happening (which is pretty huge). What helps me is having a loving and supportive family, which you daughter clearly has. I have no idea what it is like to go through what your daughter and your family have been through and I wish that I had something wise or helpful to say. All I can say is that I am sorry; it is such a hard diagnosis. Although what I am experiencing is different, I do know some stuff about degenerative retinal disease and I am happy to help in any way that I can.
February 7, 2019 at 10:10 pm
Thank you for your reply. You’re very right about having the supportive family. As I said, I’m not good at verbal condolences and Jessica knows that, but more importantly she knows that I might not be able to talk the talk but I do walk the walk.
She does have a supportive family and she knows it. Fortunately she recently found the “significant other” who seems to be loving, supporting and caring and most of all accepting of her two children who are equally accepting of him. The fact that she’s found a man who is a decent human being after she’s been let down by a few losers is of great comfort to Cora and I.
February 8, 2019 at 6:24 am
Paulie, I am so glad to hear that Jessica has found a good partner. I think we all need the comfort of a good solid foundation of trust and love and family. As far as talking the talk and walking the walk, my husband is also a man who walks the walk, and I would take that over talk any day!
I also have to tell you how touched I am that you are taking the time to delve so far back into my blog. It is a true kindness and I am grateful. Thank you!
February 9, 2019 at 8:44 am
Your story and the art in telling it have compelled me to start from the beginning. I wouldn’t start a book in the middle so how could I be satisfied with reading your blog years into it?
I’ve arrived at Useless, Sept 2011 and I’ve noticed that suddenly your blog has captured the attention (at least in the comments) of others who have lost or are losing their sight.
February 10, 2019 at 6:09 am
I am truly overwhelmed by this Paulie. As I am sure you have discovered, there were a lot of stops and starts and you will find repetition, but I hope that my writing gets better as the years progress. You are an incredibly and generous man. Thank you!