May 5, 2016

So I finally had my audience with the great and powerful wizard of eyes. It is RP. It was anti-climactic. He basically said that we need to get some more testing and wait and see what type of RP I have. Pun totally intended. I need genetic testing, and if they can find the gene that is messing me up, then I might be able to get gene therapy, though if that doesn’t work out, I can get stem cells, or wait a little longer and see if in a couple years they find that bugger of a gene.

What we end up doing will hinge on what we find and what happens with my eye-sight. Right now, apparently I am in a fairly stable phase, but when I hit the next phase, things will progress rapidly. And the awesome news (sarcasm) is that there is no way of knowing when that accelerated phase will hit. All I could sort of badger out of the wonderful wizard of eyes, was that he would be really surprised if I was legally blind in 5 years, but beyond that he seemed unwilling to give an inch. And so while he would not give me a range of time, despite my avid bullying, I am putting it at 10 years realistically and 30 years if I am super lucky… which really means I am going to really start worrying about my vision in 5 years and freaking the fuck out in 10, unless we do something.

Now this is an aside, but still relevant. I feel awful terrible nauseous, and I can’t tell yet if it is emotions or a result of the dye they injected me with for yet another battery of flashy light tests. I am pissing highlighter right now. The dye tasted and smelled like nutmeg for some weird reason.. I didn’t ingest it, but I have had injections of weird chemicals before and I can always smell it and taste it. It is a weird horrible thing, and it aggravates my already intense phobia of needles. So, I almost passed out. I broke out in sweat and tried to keep breathing. Honestly having blood taken out is much easier than getting injections, but neither is ever great.

I love love love this century we live in, but damn it, science, why do you have to be so uncomfortable?

So anywho, I smoked a tiny bit o’ weed for the nausea, and that helped, though that still doesn’t clue me into whether or not I am nauseated by the prospects of the future or the lingering chemicals in my body. (For those who are curious, weed is legal where I live. I don’t smoke a lot. I literally took one puff… cause I am such a light weight and hardly ever smoke.. and that hit staved off the nausea for two hours. If I ever have to do chemo in my life I will probably smoke a lot of weed!)

Any way back to the genuine feelings vs. chemical reaction….As a rule I try not to give into emotions if I am uncertain of their origin….because it may be that I am actually freaking out about my future on a subconscious level, or it may be that I have lingering chemical shit circulating in my body. But if I let myself believe that it is an emotional reaction, then I will just get myself all worked up and freaked out more, and then it will legitimately be an emotional reaction, and that is a quick way to making yourself emotionally overwrought …. So, until a more significant amount of time has passed I am not going to count this as a chemical reaction. Also, I can taste the numbing drops in the very back of my throat as they make their slow path out of my sinuses. Disgusting. More evidence for chemical. If I have kids I can foresee pregnancy being a real bear…

I didn’t tell my wizard that I am a painter, not that it would change anything, but he was very uncomfortable with the level of human emotion being tossed about, it might have helped him understand. He seemed like an endearing dork, who is super excited about the science and a little freaked out by human beings. I don’t know why, but I told him my day job only and left off the painting..

Though, honestly, I don’t think it matters, anyone and everyone losing their vision is going to freak out. I don’t think there is a freaking out more or less about this sort of thing. I think there is just freaking out, because this is life changing in the most pure sense of that phrase. In 10 years, I might need a cane and a dog to navigate the world. I might need to relearn how to technology using screen readers and alike. I might need to relearn how to read. I might need to seriously take up music to make up for the absence of painting. I might not see the things I had always “seen” for myself in my life. We always visualize our futures, but visualizing a visionless future is daunting, it is incomprehensible and earth shattering.

There is no state of greater or lesser freak-out. There is only freaking out. …

…then some time after that a myriad of other grief stages and then eventually a shrug. That is what “acceptance” is. It is anti-climactic. It is a shrug and moving on, because the emotions don’t disappear, you will always be able to go back to them and pick them up and feel the incredible weight of them, their immeasurable density. “Acceptable” is being able to shrug, set it all down and walk on. And in doing so, not right away, but as you move down the path, you discover that you are still capable of feeling all the things you felt before, that you can still find joy and excitement. You find them not by looking for them, but in the process of doing everything else. You find the world still surprises you and that you still love it.

This ramble is really more for me than you, internet. I am just using “You”… I guess I am talking to me.. or maybe to a universal sense of “you,” or a sort of essential humanity. But really, I mean me. Because, underneath every dark time and long night, I genuinely love this place called life, and I get to spend the majority of my time feeling that way and that is such an incredible gift that I almost feel guilty. So yes, this sucks and it is hard. But life always finds a way, and I will too. I hope the same for everyone.

-Claudette

May 18, 2016

So I think it was mainly chemicals and bad food. My mother felt ill as well.

However, the knowledge that the current phase is stable and the next phase will go quickly and without warning freaks me out more than I would like to admit.

As to the painting, it is the final painting in a seasons series I was commissioned to do and it sort of fits with my mood. I finished it last week ( so started and finished since the meeting with the wizard) and am currently working on making the frames for the series.

Painting description for the redditers of r/blind: It is almost a black and white painting of mountains in a snow storm, very stark and expansive.The only color is a hint of blue in the billowing storm clouds and a dark black-green for the pine trees, but it is hard to see the green in the trees for the contrast of white snow they are covered in.The objects that are closer appear crisper and darker and with more color. The objects fade the farther away they are, so that the mountains in the middle of the canvas, which appear to be the farthest away are little more than a swipe of crisp white paint against the billowing clouds. They are distinguishable more for their texture than their color.

For those born blind, a description of distance as seen by the sighted (also this is for the sighted, as few but painters and photographers are aware of how this works)… On a clear day there is still air between you and everything. Air, being mainly made up of nitrogen, scatters light in a blue range. It actually scatters green, purple and blue, but the net effect is blue, which is why the sky appears blue. If you look directly up on a clear day, the sky is a darker blue at the apex and lighter around the horizon, this is due to the fact that when you look up on a clear day you are actually seeing the dark void of space beyond the reassuring haze of nitrogen blue, and the color combination is a deep blue color. At sea level there is more nitrogen between you and space, so the color of the sky at sea level is much lighter blue than in the mountains.

Being from the mountains I prefer a high altitude blue sky. It feels more vibrant, more alive and dangerous, because you can see just how precariously we sit, perched on this small speck of dust, floating in the infinite. A sea-level blue is like a blue for babies, the atmosphere thick and reassuring, like baby’s blanket.

Anyway, around the edges the of the horizon you are actually looking through more nitrogen than when you look up. When you look out across a vast landscape the things that are farther away will actually appear bluer than things that are closer, because there is more nitrogen between you and farther away objects.

However, nitrogen is not the only important gas to consider when painting distance. There is also water vapor. Water vapor scatters white, so in humid places, things in the distance appear whiter, more faded and hazy.

In the painting the subject is a series of mountains. At higher elevations the air is much thinner, so there is less blue fade, however there is also less water vapor, so things appear very crisp even at great distances.

I lived for many years in a very humid part of China. I always remember being shocked by the crispness of the mountains when I would come home. I never really thought about how amazingly crisp they are until I had lived away from them.

This painting is of a winter storm, so the main gas to think about is water vapor. In the painting white swirls across the canvas obscuring the distant range of maintains, making them fuzzy and soft and just barely there, while in the foreground ghostly white aspens throw up their thin branches against the stark contrast of the black-green pines. The overall effect is one of space and distance, as the closer land on each side of the canvas, crisp, and jagged, swoops down and away from you, into a valley, made soft by its distance from us. Beyond the valley, in the haze, is the softest whisper of a further range of mountains.

If you enjoyed with description and would like more, just let me know.

-Claudette

[Edit] I got reddit gold from someone on r/blind for this entry. I posted a link to the blog and the description of the painting to reddit.com/r/blind. Thank you reddit!!!

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