The Plan

It's been over three years since that doctor placed his hand on my back and said, "You have maybe 5-10 years left with your sight. Travel. See what you can see now. Don't wait. And don't let anything stop you."
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 do.
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.

Desperately Seeking Fortune Cookies!

It's hard for me to ever stand up for myself, especially now that I am dependent upon someone else to provide a roof over my head.

It's not really big things at all, it's little stuff. And even at that, I have a hard time standing up for me. For example, lights. I need every single light on in the room just to be able to see the way you see in a dimly lit room. No kidding. It's part of my retina deterioration. The light sensors in my eyes are mostly all dead, so even in the bright sunlight, it looks cloudy and overcast to me all of the time. Dark.

When I paint or draw, I sit under four high power floor lamps, all pointed at the canvas. I've done it like that for years, but we didn't realize how bad that meant my eyes really were. I just thought I liked the light.

I like to be green and energy conscious, I do! I started that whole Green La Vergne group a few years back, I recycle, I use my canvas bags at the grocery store, I use curly light bulbs...So when I have the lights on, it's not that I'm being negligent of the energy usage, it's because I really, truly do need them.

For some reason I just can't find it in myself to say, "Yes, I do need all those lights on." When someone comes in the room and says, "Geez! You don't need all these lights!", and flips a few switches.

Instead, I shrink. Partially out of embarrassment for my own ineptness, partially out of fear of rocking the boat if I tell my truth, and partially because I don't feel like I deserve to have those lights lit up just for me.

I mean, what IS that? I never had a problem standing up for myself before. Somehow, somewhere in the process of becoming visually impaired, unemployed, and an occupant of my in-law's basement, I have lost my gusto for taking care of me.

Now, how do I go about getting that back?

his old, blind, Aunt Tee

So, I went to the eye doctor a few weeks ago because, well, I need some new glasses. I haven't been in a few years, since I haven't had insurance and I've really noticed my vision getting very, very bad. Especially my night vision, which has always been really bad to begin with. So I'm in there with my pupils dilated, lights being shone in my eyes, and before I know it, three doctors have come in the room, each of them scratching their heads, each with that "ut oh" look, and each concurring that I most definitely needed to go see the retina guys, at the retina place. They would know more about what was going on. It's not the first time the eye doctor has been concerned about my retinas. They've been telling me for years that there was some "degeneration", but never has there been so much concern nor sense of urgency. They mentioned a suspicion of Retinitis Pigmentosa. Retin-what, you say?? Immediately my mind flashes to my dad's story about visiting his great aunts, the sisters, a deaf one and a blind one. His old, blind, Aunt Tee...Holy shit!
So I go to the retina center, and I saw what must be the kindest, most professional physician I have ever encountered. This was the man who would tell me that I do in fact have the dreaded Retinitis Pigmentosa, and that at best, I have 10 years before I'm left with only the ability to recognize light sources and general shapes with my best eye. My left eye will give out and be "legally blind" within 5 years. You know what my first thought was as I sat there in that white, crisp room? I thought, "how'am I gonna paint?" First thought. No shit. I mean, a million others flooded me, and I worried about how The Wifester would handle the news, or how the hell am I going to use my degree and DESIGN, when I can't friggin see?? I keep adjusting the color on my monitors. I even bought new monitors. Still cant get a good, clear image. I finally realized that it's not the hardware. It's me, my hardware. The doctor asked me if I was understanding what he was telling me, and I said to him, "Yeah, so I need to paint all that I can, like now." He gently patted my shoulder and he said to me, "Yes! Make all the art you can every day. Travel. Go everywhere you ever wanted to go just as soon as you possibly can. Don't put it off. Do it now, and enjoy your vision while you have it."
That was not a conversation that I ever thought I would have. I'm still trying to absorb it.
So today, I had to go in for my Visual Field Test. This shows us how much of my peripheral vision is affected. The way I understood it, you are considered "legally blind" when your visual field in your better eye is less than 20%. My best eye has a visual field of 10%. I didn't know I was so blind. I can still see! I can! OK, so you can sneak up on me pretty damned easily. Granted. And sometimes if you toss something my way, it's likely to hit me in the face, sure. I can't deny that...but I really can see...some stuff. Which has me seriously contemplating my art. I mean, I know what it looks like to me, but now I'm questioning how you see it. Holy crapola! I've been so proud of some of these pieces, and have been showing them off and uploading pics of them to facebook...and you know what, I realize now that they probably aren't nearly as good as I thought they were! Maybe I'm NOT a good painter. Maybe my About Me shouldn't boast "artist, blogger, poet, saint". But you know what? Screw that. I love to paint. I love to be creative. Even if every single thing I've ever painted is shit, I have enjoyed doing it, and I'm not going to stop. So if my art gets funky, and crazy abstract, and you are wondering what happened to the Marilyns and Joan Crawfords and mermaids and cityscapes that I've been doing, you'll know now that it's just that I'm going to have to adapt to my ever narrowing visual field. Man! Today sure has been a downer.