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

While there are a few bad eggs only out for their own interests (1%), they’re easy to spot, and easy to avoid. The miserable little man who claims everyone else is an idiot, whose idea of conversation is talking at people who can’t escape, the disingenuous woman with painted-on smile and seething eyes, scratching madly at everyone, terrified her incompetence will be caught out—they deserve our sympathy, if not our time. There are so many amazing, loving people out there, it’s quite easy not to dwell on these creatures. Don’t.

Just as I started to write, M sent me a link to a Friedman column. Though I think Friedman’s a wanker (“Where does a guy whose family bulldozed 2.1 million square feet of pristine Hawaiian wilderness to put a Gap, an Old Navy, a Sears, an Abercrombie and even a motherfucking Foot Locker in paradise get off preaching to the rest of us about the need for a ‘Green Revolution’?”—Matt Taibii), I did like this line:

“The days of leading countries or companies via a one-way conversation are over,” says Dov Seidman, the CEO of LRN and author of the book How. “The old system of ‘command and control’ – using carrots and sticks – to exert power over people is fast being replaced by ‘connect and collaborate’ – to generate power through people.” Leaders and managers cannot just impose their will, adds Seidman. “Now you have to have a two-way conversation that connects deeply with your citizens or customers or employees.”

Oh, I guess it’s all a Dov Seidman quote. That’s why. Yes, connect and collaborate. Finally, it’s happening.

Something else I’ve always known but truly learned this year: Avoid people who put you down, want to keep you down, take you for granted, treat you poorly, or are generally negative or selfish. Even if they are funny. Even if you’re crazy attached. You know, deeply, that it will affect you. It rubs off and the end result is never pretty. Stand up for yourself, your friends, and your beliefs. Value yourself, your talents, your work, your community, and others will, too. It’s cliche and we hear it often, but live it. You’ll be in good company.

So, what’s the alternative? It’s infinitely harder than the next bauble in your match.com lineup, but infinitely more creative. You step out of the fantasy of romantic love and have a real relationship with your beloved—through your brokenheartedness. That’s right. You reach out through your vulnerability and meet your beloved on real terms. This is Simmer-Brown paraphrased, but it’s exactly my attitude toward love. For better or worse, though I adore romance, I have little trust in it. Maybe it’s because of loss early on my life, but I need my beloved to see the whole me and love her. With romantic love, especially the sort that grows too fast, I don’t feel seen at all. It feels inflated and unreal. Unsurprisingly, I’m not sure how my mean, ugly and needy parts will be tolerated. But there’s also an uneasy feeling that my sweet, beautiful, strong, and nurturing parts aren’t seen either. Instead, as the object of romantic infatuation, I just feel like a giant screen for another’s projection. It’s not a great feeling at all, though sure, the attention and roses sure are nice.

Simmer-Brown’s words were a relief to me because I ache for romantic love to crack open, for the real work and love to begin. Yes, it’s true I’ve tried to force it in the past. Not to hurt or to end the relationship, but to get into the creative work and real love of getting to know the beloved. It’s not for the faint of heart.

As Chögyam Trungpa, Simmer-Brown’s teacher, said (my paraphrase), “There’s not a lot of originality or creativity in the romantic story. Romantic love is a fantasy. Real relationships are infinitely more interesting.”

My word. Yes. I’m not saying I’m good at it. Not at all. In one relationship, my boyfriend complained I wasn’t going deep enough with him, sharing enough with him, and he needed that. “What did all my meditation and yoga give me, if not this?” he demanded. I didn’t tell him, because I couldn’t, that I was avoiding this depth, that I couldn’t share it, because if I was true to it (myself) I would end the relationship immediately. I needed a few more months to honor it, as the unhealthy attachment was strong. There were things I liked about the relationship even though it wasn’t meeting me on the deep level I wanted and needed. So, I get it. It’s hard. And I’m far from perfect myself.

“We have a fear of facing ourselves. That is the obstacle. Experiencing the innermost core of our existence is very embarrassing to a lot of people. A lot of people turn to something that they hope will liberate them without their having to face themselves. That is impossible. We can’t do that. We have to be honest with ourselves. We have to see our gut, our excrement, our most undesirable parts. We have to see them. That is the foundation of warriorship, basically speaking. Whatever is there, we have to face it, we have to look at it, study it, work with it and practice meditation with it.”  —Chögyam Trungpa

Then I read a good book. This helped, too. I’ve been wavering in my yoga practice since I came back from the UK. I’ve been sitting (seated mediation) and my 6am ashtanga practice has been ignored for a more gentle home practice. I feel guilty about that, but it also feels like what I need. Maybe. (Ashtangis will chalk it up to resistance.)

When I am uncertain about where I am, I try to do a meditation retreat. A week or two is best, but a weekend is better than nothing. It connects me to the part of myself that isn’t so much fear or ego and clarifies my situation. This is, at its core, what meditation is for me. It’s not about blissing out or enlightenment, it’s about knowing the difference between the bullshit stories that whirl around my head, the patterns I like to trap myself in, and my truth. I looked for something this weekend, but nothing really seemed appropriate and hell, I have a lot of work to do.

Then, out of the blue, Z asked me if I wanted to do some meditation this weekend. In our eight years, we’ve never meditated together, so I took it as a must-do (you know, a sign). I suggested a talk I’d come across by Judith Simmer-Brown at the Shambhala Center.

We went. The talk was excellent, funny, and validated everything I believe about modern love, and what can pass for it. It validated my take on my love affairs of the last few years (love being a loosely used term, as we know) and grounded me in where I am, and what I need now. Simmer-Brown also gave words and a framework to the point of all this, these love stories I want to tell. It was inchoate before, but now they’re screaming, ready to be told. Love Notes, the post title, was inspired by the few notes I scribbled down when I wanted to remember JSBs words.

It’s about going past the fantasy of romantic love. Blind addiction to imagined love is nothing less than the true religion of America (or pseudo-religion, as Simmer-Brown says. Semantics depend on how much you believe religion has to offer). Americans seek romantic love the way humans have traditionally sought God. It’s not just a distraction, it’s a deluded myth that romantic love with “the one” will solve all one’s problems. “There is such a theological commitment to romance that we will dump someone in a second if they challenge our fantasy,” says Simmer-Brown.

Indeed we will. With internet sirens beckoning, as soon as the facade cracks and the person you projected perfection upon turns out to be human, why face your own pain and that of your ersatz beloved when some guy or gal advertising (a) huge ____________ (insert your fancy) comes poking? My gawd, s/he knows the word for your genitals in your mother tongue, and will impress you with it before you even meet. Mmm, titillating. Now this? This will be easy.

Not refined, not subtle, no. Not even attractive, really. But that isn’t part of this game. We can ignore the obvious for now and focus on ease and fantasy. Why face pain and humanity when cranked-up delusion comes calorie-free?

Why? (If you’re really asking, you aren’t going to hear me anyway.) Because as per usual, you get what you pay for.

And so it goes. Another one bites the dust. Next time, some thoughts on real love, and some gorgeous stories for illustration.

~Jon Kabat-Zinn

In all Asian languages, as you may know, the word for mind and the word for heart is the same word. So when you hear the word ‘mindfulness’ if you aren’t hearing ‘heartfulness’ you aren’t really understanding. It’s got this tenor of spaciousness of heart.

~Jon Kabat-Zinn

Life on earth is a whole, yet it expresses itself in unique time-bound bodies, microscopic or visible, plant or animal, extinct or living. So there can be no one place to be. There can be no one way to be, no one way to practice, no one way to learn, no one way to love, no one way to grow or to heal, no one way to live, no one way to feel, no one thing to know or be known. The particulars count.

~Jon Kabat-Zinn

I got here, to the eighth, the day my beautiful new computer arrived, so gorgeous I cannot believe it. So these photos will not be edited between crashes of my six-year old macbook, which slowed me down tremendously. I started editing the Center Kenes photos this morning. And now I’m there.

The writing and editing is also difficult because it involves Guka. Our friendship began to unravel during this trip, and we were already tense. Maybe that partly inspired my little revelation about humanity and relationship, but it’s still painful.

And my old friend left today. He was my houseguest for a week and a total gentleman. I’m easily annoyed, especially with people in my space, and he didn’t disturb me a bit. I loved having him. Largely because I felt appreciated and supported. His timing was perfect.

But now I am sad. Left to sink into my melancholy a bit, which isn’t the worst thing in the world. I’ve been thinking about old friendships, I guess because I’ve been seeing old friends. I tried to write about Danchik last week, after he (and Pasha, picture below) entertained me through a rough spot one Sunday at Coney, way out west where the beach is decent. But I’m not sure I can explain our relationship, either. He breaks a lot of rules as far as not being an ass goes. But he owns up to it totally, doesn’t pretend to be otherwise, and at the end of the day, he’s there for me. (I wouldn’t tell him that though. He’d be annoyed.) This is more than I can say for most people. People who pretend to be good or talk a nice game around it, but aren’t there when the going gets difficult. For a day.

Whatever “good” means.

So, I accept Danchik for who he is. He makes me laugh and takes me out of myself. He can be a jerk, and he knows it.

He went to Odessa last weekend to chase some girl. That will not have a happy ending, but it will be fun for a time, and that’s all the depth some people can muster. And that’s fine.

If you’re honest.

Well, there. I wrote a bit about Danchik. I didn’t include the hard-to-explain stuff, the quintessentially Danchik stuff. His declaration that he keeps a beautiful-but-boring girl around he doesn’t much like because sometimes you just need some company, a pretty face. “I am an asshole. She is an idiot. What can you do?”

Oh dear.

But, as you see, he’s honest. Most people do this sort of thing, in one way or another, but they don’t admit it. And so start the problems.

I’ve not gotten to August 8th. Or to old friendships. Why they feel comfortable, but also confining. Perhaps I’ll be as prolific tomorrow.

“Anyway. Every summer feels like a big round tent. I inhabit it and simmer inside. Fourth of July is the central axis. My favorite holiday because it’s a nothing day. People don’t alter their lives to celebrate it: they celebrate it with and through whatever life they’ve got going. They satisfice. The ways we “make do” say everything about the real life we’re living.”  —OvO

The title and photo (taken on a ferry in St. Augustine, FL while visiting LD in May) don’t quite match Owl’s quote here. You have to read her post to get it all. It comes together there. Exxon. And the real life we’re living. I, for the moment, have nothing to say. Nothing I can say.

Instead of just deleting this questionable fellow, as I usually do, I left him there, awaiting response. After all, he does enjoy surfing, free climbing, scuba diving, marathon running, and flying airplanes. Very sexy. Very versatile. Very believable.

Like most born before 1985, I’m very confused by social networking etiquette. When I used to receive requests from people I didn’t know, I’d reply, “Do I know you?” Until I read, on elephant journal, I believe, that this is a very rude and hurtful practice. Oh. So then, like Kate Miller-Heidke, I simply ignored and deleted these requests. Until Mr. von Hohenlohe, whose unlikely profile brought the Tin Eye to my suspicious mind. I left him there unconfirmed for three months, until I made time to write this. He’s still there, arms-crossed and waiting, now with 57 friends and the same profile pic.

Of course I have younger friends who make status updates like, “I have a facebook friend called Krystal Chandelier,” which I believe implies that she doesn’t know Ms. Chandelier. After reading about how a health insurance company denied Nathalie Blanchard therapy benefits because they saw photos posted on facebook of her having fun on the beach, and how creditors and other busybodies are creating fake profiles with attractive photos to spy on people and hunt them down, I became even more stringent.

Because his request amused me, I downloaded Mr. von Hohenlohe’s photo and uploaded it into the Tin Eye. The Tin Eye is a reverse image search engine. “You can submit an image to TinEye to find out where it came from, how it is being used, if modified versions exist…” (from TinEye.com). Try it. It’s fun. (We call it the photographer’s bodyguard.)

Results? It looks like a Sean Patrick Flanery might not be too impressed either. Mr. Flanery was not born in Stuttgart, Germany, but Lake Charles, Louisiana. According to his website, he’s an actor who “attended the University of St. Thomas in Houston, where he took a drama class because of a girl. The girl was a short infatuation, but he found true love in college theater. He moved to Los Angeles and…” No mention of a European start or a penchant for skinny dipping (though it seems he did star as Indiana Jones on teevee).

Please don’t suggest that Cassian posted this photo of Sean Patrick as his celeb doppelganger shot for “Facebook Celebrity Doppelganger Week” (what, you didn’t play?), as it ended six months before Cassian joined. And it’s his only profile pic. And a Google search for “Cassian von Hohenlohe” (with quotes) results in only six links, all to Facebook.

I’ll refrain from wondering who this Cassian character really is and just hope I was selected to be his friend at random. What a fine mixture of creepiness and hilarity.

Thanks for some weekend wisdom, Mr. Diggs.

Have a good one.

Why does this matter? I find the psychology of the home fascinating. Settling in means I move the bed back and forth until it feels right. I unpack books, many boxed and unmissed for six months. I give them away. I go to the store, get a friend to take me to the store, and go to the store again. I rebuy a bookcase I sold on craigslist in March. I move the books around again. I get lectures from friends about installing blinds and keeping dirty laundry under the bed (the latter a chide about choosing such a small space. “So you are going to sleep over your dirty laundry? (This, from a non-feng shui/energy-feeling type guy, I might add.) What is this? You would pay $800 for this in south Brooklyn (read: российский Бруклин~rossiiskii Brooklyn).” “Yeah, and I’d spend three hours a day on the train. Is my time and sanity worth nothing?”

In my other spare time, when I am not in the mood to settle in, I archive. I’m on 2004, which like 2000, is a very full year because of travel. Tagging the photos can be both tedious and emotional. The other day I tagged August 8, 2004, which was one of the most amazing days of my life, one I’ve always wanted to write about, but again, never knew quite how. Tagging the 187 photos was kind of a drag, though. All all of it feels a bit removed and gone, though my epiphany that day involves a prominent theme in my life. I had dinner with a friend last night and she validated my feelings about it entirely. But for six years I’ve wondered how to explain it properly. Now that it’s pertinent, especially because I needed help with the move, that’s what I’ll tackle next. Happy weekend.