ISO Gainful Employment

So I still haven't heard from the people about that job that I really, really wanted. I'm pretty much making the assumption now that they have decided on someone else. I'm happy for the person who got it, but I'm disappointed, to say the least. I really wanted that one. I would have been the perfect person to fill that role, I believe that with all of my heart and soul.

If it's not meant to be, it's not meant to be, and so I have to let it go now.

I keep looking for something else to do, something to fill my time, allow me to utilize some of my skills, and hopefully earn a living. It's frustrating, looking for work when so many jobs that match your skill set require you to have a valid driver's license and clear driving record. It's hard to explain that while I can't drive, I can certainly take a cab or an uber or catch a ride and that once there, I can find my way to the computer or workstation in need of help. They look at that white cane and they assume that I can't see anything.
They assume a lot of things.

There has to be a company out there who is willing to hire someone with low vision to do a job that is more fulfilling than being a customer service agent. Something better than being a punching bag meant to take all the hits aimed at the company, and that pays better than a minimum wage pittance.
I am capable of so much more!
I yearn to do so much more!
I will do SO much more!

Fulfillment. That's all anyone is seeking in life, right? Fulfillment to some may be a call center job, taking the punches for the corporate heads, and making just enough money to get by. If that's fulfillment to you, then by all means, that's your thing and do it with gusto.

For some people, fulfillment isn't achieved until they have become the best of the best at whatever it is. And that's great for those people who have that kind of drive. Go for it! Set new records, give the rest of us a higher bar to aim for. We all need motivation to improve from time to time, so your unequaled passion to be the best serves us all. But don't let it stop you from appreciating all you've done.

For me, I'm somewhere in between. I don't need to be the best. But I don't want to accept the lowest hanging fruit, either. I need to feel good about the work that I do. I need to feel like I've been helpful in some way. I need to feel like what I've done today made a real and measurable difference in someone's life. I need to improve the world around me, and to help other people find happiness and fulfillment.

I don't get any of those things from the work I currently do.
I really need to find something better, but each time I try, it circles back to me walking in to that interview with my white cane in hand, and them immediately making the judgement call that I will not work out for that job. I can't be the only person stuck in this cycle. Surely not, since blind and visually impaired people are the most unemployed and underemployed demographic of the American workforce population.

So I guess my ticket to fulfillment is going to be in finding a way to change that.
Sounds easy enough!

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.

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.

Places to go and things to do

What one thing could you absolutely not live without? I don't mean sex or chocolate...I mean senses or physical abilities.
Could you cope without your sight?
How about losing your hearing?
What if you could never walk again?

Lets up the ante. What is your absolute favorite thing to do? Now, take away a sense or physical ability that would result in the loss of your ability to do your favorite thing. Say, for example, you're a dancer, and now you can no longer walk. Never. What now? What comes next?
Claude Monet became blind half way through his The Water Lilies series, but he finished them up, even without the gift of sight.
Julie Andrews lost her glorious singing voice, and now writes books, she simply found a new outlet for her voice to be heard.
How would you cope with such life altering changes?

What if your doctor told you, "Go everywhere that you ever wanted to see, and do it now, your time is short."
Where's the first place your passport would get stamped?

Me? I want to see everything...I want to see Carmel, California again. It's so lovely there. I want to go to Germany, Aruba, and I really want to go to Hawaii! I'd love to visit New Zealand, and the Netherlands, and Glacier Bay National Park...
I want to paint in Mew Mexico's Painted Desert, and I want to watch the sun rise over Key West just one more time.
I want to see the lights on Broadway! And, oh, there only about a million places in between...I know I can never fit it all in before time and money runs out, but those are the places and things I want to see. Then, once that the day arrives, I'll just figure out a new way to paint those images that are in my mind, yearning to reach a canvas. After-all, The Water Lilies were painted by a blind man...