I’m ready to come out.
I have this condition, keratoconus, which most people have never heard of, let alone can spell.
What’s interesting is it involves the thinning of the corneas to the point someone can become functionally, legally blind without corrective lenses, yet most corrective lenses don’t come close to correcting it. And I, an editor, making a living correcting stuff, have it.
People ask: What do you see? The operative question might be: What DON’T I see? or What do I NOT see? See the difference? Either way. I see things that aren’t there and don’t always see things that are.
For instance, I didn’t see the band teacher gliding across the school parking lot that dawn, inspiring her to conduct me to hell with her wand finger. I didn’t see the chunky median my car tripped over, catching air. Luckily no cop saw that one.
And for a decade or more, until I was diagnosed in 2004, I hadn’t been able to sight-read sheet music or make out my daughters’ expressions (rolling-of-the-eyes I knew) or even recognize folks I had known for a lifetime if they came at me in the wrong light without distinctive vocalizations.
I made friends that way, mistaking anyone for someone else. People think they know you from somewhere, and by the time they realize they don’t, they do.
What I do see: halos and waterfalls. My landscape is like a Salvador Dali painting, everything melting. Or heaven on Earth, all fuzzy-lens romantic. In faces, I see multiple eyes, like Brundlefly should have had. (Yeah, why didn’t they give him more peepers? Jeepers.)
What I don’t see: complexion problems. Noses are just a smear, like he-who-shall-not-be-named. And my house always seems clean enough. So there’s the rub, I woke up in 2004 to a very spotty house.
I guess I am in good company, seeing things this way. Although estimates vary, the National Keratoconus Foundation estimates one in 2,000 people are afflicted — many don’t realize it. Doing a quick Google search, I found another “coming out” blog post by Steven Holcomb, the American Olympic bobsled driver, with more simulations:
As they say, if I can help just ONE person recognize his or her problem, my life would blah blah blah. Maybe even you. How close are you to the screen, anyway?
Before my diagnosis, I squinted much of the time. People perhaps thought I was displeased — which is OK working as a copy editor, because we are supposed to turn up our noses at drivel and crab a lot. (Ha! I first wrote that as “carb a lot,” typo, but that, too.)
Managing the newshound workload, though — my hunt-and-peck typing style a heightened adventure, deciphering proofs more of a puzzle — meant an extra ounce (read “ton”) of diligence and vigilance. I figured that was poetic: a blind editor, something like blind justice. I felt akin to my one-eyed eye doc of years back, the one whom I could no longer afford on our middling-to-maddening insurance and had stopped “seeing” (in more ways than one) in 1993. He had lost an eye as a child, in a bike accident. A simple branch rubbed him the wrong way and ever since he has been inspired to give people the gift of sight that he couldn’t have. His glass eye is like a badge that says: here. No you, please, take it. Enjoy. I’ll be fine. (He’s also Jewish. … OK, no offense intended to a wonderful, witty, gifted, if put-upon, people; some of my best friends are Jewish, at least most of my doctors are — again I tease!)
The moment I was diagnosed — after years of frustration over reordering glasses and contacts, sometimes as many prescriptions as four per year, after regularly testing new materials, technology and patience, calling the vision voodoo-doers back within a week to crab “these aren’t working anymore!” and my goodness THIS is a run-on sentence! — my eyes leaked, puddles. I knew I would be revisiting my old friend, because he deserved to revel in such a textbook case as mine.
Which is why he put me in touch with Washington Eye Physicians & Surgeons and a cutting-edge therapy (corneal cross-linking) that involves no cutting — and no corneal transplant, which seemed my next dead-end pit stop, the pits. C’mon! Really? Some dead person’s tissue as my new window on the world?!
I know, the corneas of Christina-Taylor Green, the sixth-grader killed in the mass shooting that targeted Rep. Gabrielle Giffords, D-Ariz., in January, are now helping another child to see. That’s sweet and miraculous. I have such otherworldly vision as it is, though, I was spooked wondering what views I might adopt along with someone else’s corneas. Needed to avoid that scenario. Besides, it could have put me out of work for a year, in recovery.
So, on May 5, I enrolled in a “CXL” (medical shorthand) nine-month study led by ophthalmologist Roy Rubinfeld, a jovial fellow who whistles and sings and even CACKLES sometimes at work, crowing about the wonders of the eye’s thousands — billions! — complex working parts, and how many lives this procedure has changed. No, saved.
Add my name to his list. Though non-FDA-approved and pricey for us, the process was magical. They strapped me to a chair (not really), did the Clockwork Orange thing and flooded my eyes first with riboflavin, then ultraviolet light, intermittently, for a half-hour. Ha! another funny typo, I wrote “ultraviolent.” Well, it could have been, if not in such a controlled, spa-like setting as the practice’s Chevy Chase, Md., suites.
My vision has improved at an astounding rate, as my eyes busily produce collagen, all on their own, inspired by that gorgeous purple light that I miss, like an old lover. I’ve been three months now without contacts. Oh! Forgot to mention that rigid lenses custom-fit to the topography of the eye are the only type that do us keratoconus patients any good, like a push-up bra, or corneal prosthesis. As I struggle through my eyes’ “regeneration,” wearing multiple pairs of glasses — often at once — just to get through routines most people take for granted (reading laundry-care instructions pops to mind, as does hunting and gathering at the mega-supermarket, a not-at-all-fun fun house), I’m feeling rather miraculous myself. Given I could not even make out the giant “E” before, unassisted, and am now LEGALLY, carefully driving. Nighttime is a trip. I think they accidentally gave me a superpower: night vision
(Which reminds me of a funny story: When my youngest daughter, then about 5 or 6, had her first official vision test and was asked to read a line, let’s say, “F E L O P Z D,” she sounded it out as Felopzd! then declared, punitively, ‘That’s not a word!” When asked to read the last line, I swear, she read: “Uhhh … there’s a little dot and then it says “Copyright 1992 Snellen Laboratories,” or whatever it was. We were all laughing so hard I can’t remember. She is now a linguistics major in her last year at Northwestern University and a Scrabble master, with every two-letter word memorized.)
But enough about her. Back to me. I am pleased to broadcast: At my checkup last Thursday, I was told I could get back into contacts, just in time to watch the finale of So You Think You Can Dance. Peach-mango shots, anyone?