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 can’t come close to correcting it. And I, an editor who makes her 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, either.
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 (their rolling-of-the-eyes I easily sensed) or recognize folks I had known 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, so 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 Goldblum’s creature 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 home.
I guess I am in good company, seeing things this way. Although estimates vary, the National Keratoconus Foundation estimates one in 2,000 people is afflicted — often without realizing 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 right now, anyway?
Before my diagnosis, I squinted much of the time. People perhaps thought I was displeased — which works for a working copy editor. 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 — my hunt-and-peck typing style a heightened adventure, deciphering proofs a puzzle — meant an extra ounce of diligence and vigilance. I figured that was poetic: a blind editor, akin to blind justice. I empathized with my one-eyed eye doc. He had lost an eye as a child, in a bike accident. A simple branch rubbed him the wrong way, which eventually inspired him to give people the gift of sight he couldn’t have.
After years of frustration over reordering glasses and contacts, sometimes up to four new prescriptions a year, I finally received a diagnosis — and my eyes leaked, puddles.
My one-eyed eye doc said I was a textbook case and put me in touch with Washington Eye Physicians & Surgeons and a cutting-edge therapy, corneal cross-linking, which involves no cutting or corneal transplant, which had seemed my next dead-end pit stop, and also the pits. The thought of some dead person’s tissue as my window on the world made me shudder.
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. But I was spooked wondering what views I might adopt through someone else’s eye parts. Besides, it could have put me out of work for a year, in recovery.
So, on May 5, 2011, I enrolled in a “CXL” (medical shorthand) nine-month study led by ophthalmologist Roy Rubinfeld, a jovial fellow who whistles and sings at work, and crows about the wonders of the eye’s thousands — billions! — complex working parts. He has changed countless lives with this procedure. And saved a few livelihoods.
Though non-FDA-approved and pricey, 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, inspired by that gorgeous purple light I miss like an old lover. I’ve been three months now healing, without contacts. Rigid lenses custom-fit to the topography of the eye are the only type that serve keratoconus patients. The lenses function as a corneal prosthesis, a push-up bra. 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, hunting and gathering at the mega-supermarket — a non-fun fun house), I’m feeling miraculous myself, given I could not make out even the giant “E” unassisted previously and am now LEGALLY, albeit carefully, driving. Nighttime is a trip. I think they accidentally gave me the superpower of 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. She is now a linguistics major in her last year at Northwestern University and a Scrabble master, with every two-letter playable 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?