With my recent decline in vision and subsequent approval for mobility training, I have been retracing my RP life in degrees. When I was diagnosed with RP, I had about 50 degrees of peripheral vision. 7 years later, I had lost 50% of my already limited vision and had only 25 degrees; that was when I stopped working. In the 7 years since I have stopped working, I have lost just over 5 degrees and I finally and completely believe I made the right choice to stop working. I have spent days feeling useless and lazy and telling myself that I should be working, that there was no absolute proof that stopping full time work was preserving my vision. There still isn’t absolute proof, but I think the cards are stacked pretty heavily in favor of not working. I hadn’t thought about it in comparison to how much vision I lost in the first seven years, but now that I have, I feel fortunate that the progression of my RP has slowed so dramatically. Even though the recent vision loss has put me into a whole new realm of the RP world, and that is upsetting, I am able to see the good fortune in my story.
It doesn’t mean that I am not afraid. I am terrified. I am already imaging myself going to sign up for the training and being shunned for the fact that I do have some vision; enough that I can get around without the aid of mobility devices and see your face when you are talking to me (as long as you are not too far away). I feel like my RP is the same as almost every other aspect of myself; not quite right, not good enough or, I suppose in this case, not blind enough. I am afraid of being out on the street with a long white cane that calls attention to my presence; I prefer being in the shadows. I am afraid to take the steps I know I must take and knowing me, I will take my time.
I do plan on pursuing the training and I look forward to being less bruised and having fewer collisions, but I have to ready myself for what I believe will be a huge step and a huge undertaking. It will also involve homework and practice and I seriously suck at both those things(which I am sure is apparent in how infrequently I post here). But, as I continue on this path, I will write about it and share it with anyone who wants to take this part of the RP ride with me.
Stories From the Edge of Blindness 
August 8, 2016 at 3:06 am
I am not sure if you realised this, if you keep your records well, it will be helpful for kids with RP. Most kids that are diagnosed at younger age have family history. They are clearly not blind but putting them through normal school means going through the academic pressure. Any parents that need help to prove that their RP child needs a special curriculum, you might be able to help with your records. We want RP children to be able to be go through school normally with minimal pressure
August 11, 2016 at 6:40 am
Its so great too hear you own your path and sounds like you’re accepting it more and more everyday. The steps you are taking are huge, no matter how long it takes you to take them. I love you regardless beautiful lady!! XO
August 11, 2016 at 8:16 pm
According to the American foundation for the blind. About 85% of the people using a white can have some vision. Only about 15% are totally blind.
August 12, 2016 at 9:31 am
I’m supporting you in your brave decision to be vulnerable and take charge. My white cane gives me independence and freedom and while it took me a bit to get used to it, it’s so worth it.
August 12, 2016 at 11:02 am
Thank you! Your blog is great and helps me feel more confident. We also follow you on Twitter (my pugs do actually. Thepugsblossomandjade)
April 5, 2019 at 7:43 am
It’s hard for me to understand the rationale for making someone wait until his/her vision has decreased to some arbitrary benchmark in order to begin mobility training. Its just another bitter pill in the degeneration that you have to gird yourself for so you should be able to take the deep breath and say, “Yes,I want to get this done” and be able to do it. If you have RP and the prognosis is that at some point you will need mobility training then it seems reasonable that one should be able embark when he or she feels it’s appropriate.
April 5, 2019 at 1:31 pm
I totally agree!!!