In that time I have come to accept that what he said is true, and that my time left for seeing the world around me is greatly shortened. I've found a lot of others who have this retinitis pigmentosa, or RP as we call it, and have formed a bit of a camaraderie with them. We are all navigating this path of vision loss and ensuing blindness together. Some of them are further down the path than I am, others have not yet made it to where I stand. Collectively, we draw on the experience, strength, and hope of each other.
In talking with, chatting with, facebooking with these good people, I've found that we are quite an interesting and diverse group. From housewives to physicians, from gardeners to engineers, and from artists to I.T. professionals...we span every demographic imaginable. And it occurred to me, these people have stories.
We have stories of how we came to accept or in some cases detest our vision loss, of how we managed to cope in a world that does not understand vision loss, how we reinvented ourselves to accommodate our vision loss, and how we found each other through modern technology and social media.
And then it occurred to me that someone needs to tell these stories.
|photo courtesy By Vítězslav Válka (http://www.pixmac.com) [CC-BY-SA-3.0-cz (http://creativecommons.org/licenses/by-sa/3.0/cz/deed.en)], via Wikimedia Commons|
So here's my plan.
Over the next year, I'd like to gather enough funds to be able to take a cross-country journey via RV with The Wifester and Sally Sue. I can kill two birds with one stone, so to speak: I can see this country like I've always dreamed of, and I can meet some of these wonderfully interesting people who share this experience of RP. The Wifester can take photos of our journey, because if you've spent much time around this blog you already know that she is quite the brilliant photographer. I can live blog my adventure, so you can follow me as I have this experience. And in the end, I'll produce a book of my journey and of the stories of the folks that I met along the way. Plus, I get the opportunity to paint landscapes in the desert like I've dreamed of for years and years. And The Wifester and I get to see this great country of ours together.
That's the plan, anyways. I'm still in the very early planning stages, but I think I have to do this. I need the journey, and these people's stories need to be told.
*If you are one of my fellow RP'ers, and you would like a visit from The Wifester, Sally Sue, and I, please contact me either via this blog or via facebook, and we'll talk about the plan.