PHPV (Persistent Hyperplastic Primary Vitreous) is a rare, congenital eye disease that begins around the third month in utero. I have it in my left eye (right to you) and have written about it before. In short, the primary vitreous and hyaloid artery of the developing eye do not become clear and recede (they’re persistent), but instead grow even more (hyperplastic), scar, and form a stalk. Sometimes this is in the front of the eye. Sometimes the back. Mine runs from the cornea in the front all the way back to the retina. This, my ophthalmologist calls “classic,” “amazing,” “beautiful,” and “textbook” when describing it to her residents, whom she will pull off lunch break to view because it’s so rare to see such a case. Also rare because the cataracts and calcium deposits that can develop on the cornea often make it impossible to see into the eye. Not so for me. Mine fog up only the right side of my eye, so you can see straight in.

It is oddly comforting to have my deformity so appreciated. And since I’m a huge advocate of real world education, I’m happy to let the apprenticing doctors take a look, painful as it may be.

When I was little, as in the photo above, the deposits gave the eye more of a blue cast, so I appeared to have one brown eye and one blue (no, not like your cat). Now the coloration isn’t as extreme, but the eye is smaller (microphthalmia) and doesn’t track with the right. Other side effects are the retina peeling off a bit and elevated eye pressure (glaucoma). I have both, though both are pretty stable.

Photo: Far right, adult eye with PHPV doesn’t track with normal eye.

I have yet to meet someone with PHPV. There’s a facebook group called “People with Persistent Hyperplastic Vitreous Unite” but it should be called “Parents of Babies & Toddlers with PHPV Support and Discuss.” I’ve chatted online with someone upstate (we’re FB friends now), and a few people here who have read my other posts, but I have never met another person with this disease. And before the internet (most of my life), the only information I got was from my ophthalmologist. There’s only so much one can absorb in a visit.

That’s why I write this. There’s very little info out there, and nothing about what it’s like to have PHPV.

Even so, I’ve known I see differently since I was young. My pediatric ophthalmologist (he was mean. Parents of Small Children with PHPV, please do not send your child to a mean eye doctor. Traumatown) gave me a slew of tests. One was a fly coming off a board, and I was meant to say if it was 3-D or not. It was the 70s, and this was the “Titmus Fly Stereotest.” Oh, I found a picture. What a horror.

I knew there was a correct answer to the question and I was pretty sure it was not what I saw. So instead of answering as such, I guessed. I don’t remember if I guessed right. I remember the doctor, the scariness, the stress, the tests, and trying to guess what I was supposed to see and say. I was perhaps four or five, and my dad was there in the dark doctor’s office, so I knew it was serious business.

I do not have stereopsis, or, what most people take for granted as three-dimensional vision. Stereopsis requires that both eyes track together, so that the brain can use the perfect disparity between the right and left eyes to judge depth. A few inches apart, they see a slightly different image and the visual cortex uses that difference to create the third dimension. It is a trick of the mind. The cells in the visual cortex of the brain that do this develop quite early, and they rely on sight from two properly aligned eyes.

What does this mean to a kid? I sucked at ball games, because judging the distance of a ball moving through the blue sky is pretty much the pinnacle of three-dimensional sight. I loved photography since before I can remember, and got my first camera for Christmas at age ten. I first thought I was trying to freeze and memorize images, just in case I went blind. Later I realized that using one eye to make two-dimensional images is my reality, so of course it comes naturally. Though I do wonder how others see photographs. While your two-dimension vision is no different than mine, it differs from your regular, three-dimensional vision. Mine does not. All the tricks my brain uses to judge depth are pretty much there in a photograph. So perhaps I’m good at relaying the third-dimension in only two. I can’t know.

I also realized in high school that I could play tennis, as long as there were no lobs, because my brain used the lines on the court to judge where the ball was. I liked that. I did not like 3-D movies, because they didn’t work. I saw a lot of lines. I didn’t and don’t like many movies because the brightness hurts my eyes, which are ultra-sensitive to light. Especially in a pitch black room.

These things I had figured out on my own. In the last few years, I’ve noticed even more. Partly due to technology, and perhaps partly due to yoga and meditation, and simply being more aware of my experience. This is getting a bit long, so I’ll save more on how I actually see for the next post.

other posts on phpv:
my perfect deformity
my perfect deformity, part ii

The girl had taken the Ph.D. in philosophy and this left Mrs. Hopewell at a complete loss. You could say, ‘My daughter is a nurse,’ or ‘My daughter is a school teacher,’ or even, ‘My daughter is a chemical engineer.’ You could not say, ‘My daughter is a philosopher.’ That was something that had ended with the Greeks and Romans. All day Joy sat on her neck in a deep chair, reading. Sometimes she went for walks but she didn’t like dogs or cats or birds or flowers or nature or nice young men. She looked at nice young men as if she could smell their stupidity.

—Flannery O’Connor, “Good Country People”

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]]> http://veneratedcoconut.com/2012/04/11/but-she-didnt-like-dogs-or-cats/feed/ 0 http://veneratedcoconut.com/2012/03/11/price-of-admission/ http://veneratedcoconut.com/2012/03/11/price-of-admission/#comments Sun, 11 Mar 2012 22:32:18 +0000 Anastasia http://veneratedcoconut.com/?p=4592

I’m editing lots of photos. Lots. To keep you entertained until they are done, here’s a great video that my lovely Amber sent me last fall. I loved it. I love it now for very different reasons, and watch it weekly because, well, cause Jpeg likes to leave the sponge in the sink. :)

Hope you enjoy. Amazing photos soon!

Cell Phone Snap, Summer 2010

Point & Shoot (S95) snap, Winter 2012

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Last August, I was disappointed by men. A number of them. The number of trashy guy stories I was experiencing and hearing about from friends was astounding. When I went to the UK, I visited some old friends, met some new, and saw some great guys and relationships in real time. It was heartening. And so instead of focusing on bad eggs, I decided to write the good ones. I saw five great relationships in all, but will focus on this one. Things have shifted considerably since then, thank heavens, and I no longer need evidence that most men aren’t self-absorbed, self-ignorant slags.

In 1995, I met Ilona and Narimantas in Kaunas, Lithuania. They’d met a month before at a bar in the Old Town called the Blue Orange (B.O.). Narimantas, bald and tattooed, was at the bar and saw Ilona with another guy. He said to her, “That guy you’re with, is he important to you? If not, come with me.”

Ilona, in the summer before her last year of uni, was intrigued by Narimantas’s manner and fuck-all attitude. Even upon meeting, he struck her as someone who didn’t care about the stupid things most people concern themselves with, and she liked.

She replied, “Not really.” She wasn’t particularly into the guy she was with. They were friends, really. Maybe a little more.

“Then come with me,” he repeated.

“Well, I don’t know. I’ll have to think about it,” she answered, taken aback.

“Don’t think too long or we’ll be pissed [drunk],” said Narimantas.

And so she went. I met them a few weeks later, and they were already thick as thieves. Weeks later, I took photos of Narimantas giving Ilona her first tattoo, over 16 years ago.

Then I lost them. After Ilona finished university, they left for the UK. Lithuania wasn’t in the EU yet, so they made their way in under the radar. Because unpleasant guys in track suits were interested in Narimantas’s whereabouts, they also left under the radar and I couldn’t track them, though I finally heard a rumor that they’d left for the UK. Narimantas found work as a tattoo artist and Ilona did all sorts of things. Seven years later, she became a tattoo artist as well.

They moved from London to Brighton and last year, to Worthing, where they opened their own shop, Mantas Tattoo. I visited in September, and it was fun to see them together (married), sixteen years later. Although much had changed, not much had changed. They are comfortable with each other, proud of each other, and don’t seem bored in the least. They both have their own interests and habits and they give each other that space. Ilona does more of the tattooing now than Mantas, and they both only work when they want to work.

They’ve set themselves up in a home in Worthing, and walk to their shop, which is right next to the train station. Their home is suburban and comfortable, decorated with Narimantas’s paintings and interesting skulls and skeletons. The top floor is a little cove-like hideout, with a computer for gaming, pillows on the floor, and other creature comforts (there’s a cat, too). While they’re both involved in different online communities, they don’t go out much, the way urban artists might, preferring the comfort and entertainments of home during non-working hours. I found this inspiring, as some Americans like to insult suburban life on principle, though they live totally uncreative, conformist lives in small, dreary, overpriced urban apartments. Narimantas and Ilona have definitely found a way for themselves and live lives they enjoy on their own terms. Not many people can say that—especially first generation immigrants.

Looking back, none of the friends I visited in the UK have traditional 9-5s. Alys and her boyfriend are photographers, Angela and Karen are yoga teachers and studio owners, and Andrew owns a bike repair shop. I can’t help but wonder if people feel more free to venture into their own businesses in the UK because they don’t have to worry about/pay for health insurance, living without a “real” job. A chat I had years ago with an economist friend lends weight to this argument—that our sickening medical industrial complex stifles creativity and small business in the US. And you can bet the corporate giants like it that way.

Marked Eternal is the name of Ilona’s blog.

Narimantas & Ilona in Druskininkai, Lithuania

Jpeg is back Monday, thank god. I missed him, but in a nice way. He’s classy enough to call regularly, not use the “ah, oh, yeah, there’s no internet here” line on days we don’t speak, and didn’t need to pick up a Russian prostitute to keep him company on his travels. Respect, gentlemen. That’s all we ask.

Danchik likes to analyze why I stop speaking to people, just cut them out completely. It’s not that I’m angry or upset. It’s that I’m done being angry and upset. After I’ve explained that certain behaviors aren’t acceptable (e.g. lies and inconsistency), not once but ad nauseam, and it’s clear he’s incapable of basic civility, I lose all respect. A line is crossed and I am done. I never really know where this line is or when it will appear, which is perhaps what causes confusion (“she put up with it before. What’s the problem now?”). Sooner or later, clarity descends and the person’s little world seems both toxic and boring. I’m no longer able to look past the trite and unnecessary excuses and lies, justifying them because of the person’s obvious pain. I finally see my own behavior as aiding and abetting, and I’m done. Danchik doesn’t get the respect thing, and he doesn’t get why I haven’t cut him off, a self-proclaimed asshole.

“You’ve always been good to me. Well, maybe there was a short time you weren’t, but you were a baby and I let it go.” Behavior that is understandable at 19 is not acceptable at 25, and definitely not at 49. And that’s the issue. The bottom line is that Danchik is good to me. We have a history. As Bij would say, “He’s family.” I can’t say that for those I can no longer be bothered with. (No, I’m not talking specifically about you. You are typical. You are one of many. And that is, actually, the bottom line. It’s not all about you).

There was some time to think about this with Jpeg out of town. I say it because I’m relieved I broke a 5-year string of bad luck (disingenuous, selfish men) but also because bad behavior seems to be a dating trend in both women and men. I own my misery—it wasn’t bad luck. I let poor behavior continue, and chose to ignore the reality for what I’d hoped was there. Or put up with bad behavior because I felt sorry for the guy. It’s fucking hard to be close to someone, and I’m sure I will always fear it. But I will no longer choose men with whom closeness is impossible—for recreation or relationship. It causes dreadful problems and more pain than simply facing my fear of intimacy and the hurt behind it. But it’s familiar. And easier. Easier to look outward to solve problems than within. Not just for me, but for many.

Take this depressing blog, “Uptown-Lowdown,” about a young woman’s adventures on the dating site OkCupid. My gawd. She started off genuine and endearing, but then somehow got wrapped up in the need to exude freedom and cool, and she lost her voice in the process. It reads now as if having deep feelings for someone and risking vulnerability is wildly unhip for either gender. “Women can be douchebags, too!” Wow. I think most of us got that awhile ago. The need for young women to flaunt it seems to indicate just how far we haven’t come. Or just how scared we all are. Better to justify excitement about a guy in his FULLYPAID invite to Jamaica than to admit vulnerability and excitement the person himself. Sad times. Sad times.

Further, it is amazing how poorly behaved people are willing to be, in writing, in an age that such behavior can be published at large on the internet (and I’m not talking about a dating blog). It’s especially shocking when such people have PR as their first and only concern. But then, in an age of narcissism, nothing should come as a surprise.

Grandma  ~1995~

Adrienne   ~1990~

Mason  ~2010~

High Holborn, London

for more of London: CLICK!

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