Lookng for Light in the Midst of Darkness

I've been feeling down and blue lately. The election is a part of that, and it is winter so I get less sunlight, and that always seems to affect me, and then there's my sight...

I know to expect a constant decline. I know it is, as my medical record so kindly states,

"a progressive, incurable disease" 

I know all of this, but I still find it hard to adjust each time I notice my world getting darker and smaller than before.

Colors fade.
Lights dim.
Visual acuity diminishes.
And my positive outlook plummets, even if it is temporary.

I was deep in thought about it all the other night, and I realized that there are parallels between how I feel about what's going on in the world around me politically, and what's going on in the world around me visually.

• Darkness is slowly encroaching on an ever smaller and smaller world. 
• The dangers I encounter are growing in number, and I don't always see them before it is too late. 
• What worked before is inadequate now.
• I have to constantly remind myself to slow down, look for the safe spots, and then make my way to them slowly, meticulously considering each step and then cautiously advancing, ever onward. Ever forward. 
• Sometimes the steps I take look foolish to others, and I have to stop caring whether or not they understand my motives. I always strive for my actions to do no harm, to myself or to others. 
• I'm constantly looking desperately for a glimmer of light to help guide me. 
• Sometimes I have to create my own light. 

Although I get overwhelmed with the changes and frightened by the darkness, I have to approach it with determination and confidence.

Friends, I'm here to tell you, I will get through my vision loss and thrive in spite of it.

We will get through this dark period in our country's history by adjusting ourselves to our new environment, taking carefully planned steps, and maneuvering ourselves back into that circle of light where we can clearly assess our surroundings, unobstructed by all this darkness.

Vision Bucket List

Image from Huffington Post
I'm just putting this out and into the universe because that's the only way I know to manifest the things I truly want: Speak them. Dream them. Envision them. And very often, they will come.

New addition to my Vision Bucket List: See the Alaskan Northern Lights.

My cousin and her husband live in Alaska, and they are always posting the most beautiful pictures of the lights on Facebook. I can't imagine what it must be like to be able to look up in your backyard and see that. Plus, there's all the stars in the sky with their photos. Oh, the stars! I haven't ever seen so many stars in the sky. I think that possibly, I'd even be able to see them out there. I can't really see any stars in the sky here anymore. I really miss seeing them. That's one of those things you don't realize how much you take it for granted, until it's gone. I knew it would happen, I braced for it, but still, I miss seeing the stars in the sky. There's just not enough contrast here, with the city lights so close by. Even when The Wifester sees them, I still can't, not usually. I'll only see like one or two, vaguely, while she's seeing a dozen. But I bet I can see them in the Alaskan sky. Possibly in the Arizona desert, too. But I'm running out of time before I won't be able to, even there.

So there it is, Universe. Let's make this happen.

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.

Of Blind Girls and Dog Poo

Though I'm likely never to forget that Memorable Memorial Day of 2008, each year I try to put it behind me a little more and a little more. Today I need to prepare the yard for the Wifester to cut the grass, and in an instant I am taken back to those horrible memories.
But almost as horrific as that day, that scene, is the realization that I, the "blind girl", have the duty of going into the yard to scoop the dog poop. And mind you, we have a new upstairs neighbor who also has a lab mix, Daisy. So my job is to locate, extract, and dispose of the pooh of three quite large dogs, all while doing my best to avoid stepping in any of it. If I keep my head down and my eyes on the ground, I can see my feet, but not both at the same time, so that window is pretty small. Or rather the window of opportunity for a smelly disaster is quite large. Either way, it is not a job I am eager to embark upon. Hence my presence here, with you instead. Oh, I tell myself that I am waiting on the coffee to kick in, but the truth is I am, simply and honestly, procrastinating.
Don't get me wrong, I love being in the yard. I love to garden and till and plant...but the minefield that is our yard is treacherous to navigate, even for a fully sighted person. Still, the job must be done, and since I apparently can not, nor do I want to be trusted with the task of mowing the yard, especially after what I saw on that Memorable Memorial Day, I suppose my contribution is limited to me putting my big girl panties on and heading outside to scoop the poop. Besides, I do have the Cadillac of poop scoopers. 

See. Isn't that nice? My hands get to stay clean. Hopefully, if I'm very, very careful, so will my feet.

What's on your agenda today? Yard work? Barbecue? Both?

The In Between Place

Learning to adjust to my vision loss is an ongoing process. I have found that using the blasted white cane given to me by the National Federation of the Blind has been quite useful, as much as I hate to admit it. I really try to overlook the sideways glances I get when I'm walking down the street with it. I realize most people are simply curious. I always was before I began to experience this thing, this retinitis pigmentosa, this  slow but certain death of my sight.

I always thought I was just clumsy. Everyone did. My nickname as a kid was "Fumble butt". I wondered how everyone else seemed to get in and out of movie theaters without holding on to the hand rails and searching, searching for each step. I can't count the times I tripped and fell or nearly fell in a movie theater.

I remember as a kid my mother would tell us to be home at dark. I was always home long before my brother or neighbors considered it dark. 

I remember struggling to take notes in the classroom when the teacher had turned down the lights in order to use the overhead projector. (Yes, I'm that old. I remember overhead projectors.) I never knew how everyone else had notes that were neatly written, in the lines, and cohesive. Mine were scribbled, traipsing along, going over and under and back over the lines of my wide ruled paper, often trailing off to one corner or another. I could never see those lines to guide my pen. 

But I digress...

The cane. 

Before I truly understood what being "partially sighted" meant, I saw people with their canes and assumed, wrongly, but assumed that they were completely blind. I wondered if they could see anything at all.
Light? Shadows?
Was it pitch black in their world? Was it all white?
I wondered.

As my field of vision gets ever narrower and as my world, at least the world I see, closes in and gets smaller, yet smaller, I find myself in this strange place. Not quite blind, and not quite sighted.
I land somewhere in between. And that seems somehow apropos. I've always landed somewhere in between. Not all white, not all brown. Not all girly-girl, not all tomboy. A few popular friends, a few outsider friends. I never completely fit in in any one place. And honestly, I've always felt a bit more comfortable in that in between place. It's what I know. It's comfortable. I can indulge both sides of my personality there. I can lean left and then right, and always land somewhere in the middle, on what for me is solid ground. 

The cane has fallen right in step with me in that in between place. Some days my eyes are strained, clouded by a thick gray or sometimes white-ish film that veils the world from me. Some days they are showered with "floaters" that make it quite difficult to determine if I'm looking at something real, something there in the world in front of me, or just an imaginary nothingness that my eyes and brain have colluded have produced. Some days my eyes are clear, and I seem to see just fine, until I realize that I only see through a peep hole, while the rest of you are looking through a bay window. Always, though, my eyes see bright, swirly, spirally lights that pulsate from their centers, enlarge, and then recede.
It is because of all of these things that I choose to use the cane. Not because I can't see anything, but because I see differently. Some days I feel confident and choose not to use the cane. Other days, I make no doubt about it, I need it.

I'm finding my footing now in this new and ever changing In Between Place, both figuratively and literally. And I look forward to an ever changing world ahead of me. I know I will miss some things, but I also know I will learn new things, and isn't that what it's all about? Learning and growing, avoiding being stagnant...At least, that's what I think it's all about. 

Introspection

I'm looking forward to waking up and realizing that I've just had one,very long, very troubling dream.
I know that's not going to happen, but I find myself looking forward to it.
I don't much like the idea of losing my sight, yet every day I have more and more realization that it truly is fading, and that there's absolutely nothing that can be done about it. Damn these defective genes!
Defective.
I've lived my entire life tying to overcome this innate, incessantly nagging voice telling me that I am, in a word, defective.
It took years of therapy, (sometimes twice a week!)to get to the point in my life that I no longer looked at myself as defective. And here we are, full circle. In an instant, a diagnosis of a genetic disease caused by wayward genes and embedded in my DNA at the moment I was conceived brings all of those feelings of inadequacy rushing back to me.
I suppose it's good that I spent all of those years in therapy. I have a pretty good arsenal at my disposal to combat that internal nagger now. I know I'm not totally defective. I know I am smart, somewhat talented, and ambitious. Those aren't the traits of a defective person. So what if I have some defective genes? No one's perfect. No one can be. I'm learning that, and how to accept me for who I am, for what I am. And for who and what I'm not. Will my vision loss affect my life? Absolutely. Will it stop me from doing the things I want to do? Absolutely not!
I feel like a big baby when I start to get down about it, and I tell myself to "Buck up, Buckaroo!" But then, at the same time, there's this part of me that just wants to wrap my arms around me and say, "I'm SO sorry! This sucks, and you deserve better!"
I don't articulate my feelings very well in person, in conversation, but I can write them out, and when I do they come out fluid,and languid. Like the steady, slow stream that ran through my back yard when I was a kid. Constantly moving, shifting,ebbing, and carrying with it the leaves, fallen dead from trees further upstream, to some unknown burial ground beyond the boundaries of my exploration. Making way, making room for new life, new growth to replace them.
I mourn the leaves that have fallen, the ones to fall soon...but with hopeful anticipation that is equal to, if not greater than the sadness, I look for those tiny new buds to appear with their promise of growth and beauty.