It was one of those evenings right before the official start of winter when the cut of the cold and premature darkness still surprise you. It had been a long day at work. My brain needed an invigorating, startling freeze to reset. I pushed the door open, stepped into the parking lot and turned my face to the sky, as I always do, in hopes of a masterpiece. My God, the moon is breathtaking, I thought. What magical gifts He gives us sometimes. And then, just as I reached my car, it occurred to me … it came into focus … that solar superstar, that awe-inspiring sphere, was not the moon at all. It was, in fact my friends, a high roadside sign for Burger King.
I wish I was kidding. But alas, this is the burden I bear. My eyes are not like your eyes. My eyes are very special.
See, along with an affinity for chocolate laced with nuts and tendency to burn dinner, my mother also handed off a rare genetic eye disorder called Best Disease the day I was born.
First of all, we can all agree that Best Disease is, hands down, the absolute worst name for a disease ever. Ever! Can you imagine spending your entire life telling people you have the Best Disease? It sounds so narcissistic. Oh, you have diabetes? Well, I have Best Disease, so your second-class excuse for a disease can just have a gay ole’ time being in my disease’s shadow. Sorry bout ya. Crohn’s? Pssh! Why don’t you man up and get a real disease, son? Cuz there ain’t no disease like the Best Disease, cuz the Best Disease don’t stop …
I’ve seen it in pictures and had it explained to me a dozen times, but I’m still not 100 percent sure what this inconvenient little bitch is all about. As I understand it, it’s a form of macular degeneration that manipulates the macula in the retina. The macula is a tiny area that’s vital for seeing detail and color. We use it anytime we look directly at something, like when reading, watching TV and writing. (So, naturally, I decided to be a writer.) Members of our elite little club develop blisters on the macula that look like an egg yolk. There’s more potential for growth and decay after that, but it’s all kind of scary and gross, so we’ll leave at the yolk. It doesn’t hurt and there is no cure. It just is.
It’s like having a cool party trick that only the nerdiest people at the party appreciate. About eight years ago I thought I needed reading glasses. So I did what anyone would do. I went to a popular optometrist in town, known for having the coolest frames. I think the publisher I worked for at the time also got a fat discount through some shady deal, but that’s neither here nor there. Anyway, I went in, they took their pictures and put me on the end of the table to start playing Name That Curvy Figure That Vaguely Resembles a Letter.
“OK Courtney, if you could just read line 5 for me, please.””
“Sure. K … 7 … J … G?”
“Huh. OK, how about line 4.”
“9 … T … P … is that a horse maybe?”
After I murdered the test, the optometrist threw my eyeball pictures up on the screen. What happened next should have been embarrassing, both for the professional administering the exam and myself, but somehow it just happened and neither of us acknowledged the absolute absurdity of the exchange. The dude actually sat his pen down, excused himself and left the room. Only, he forgot to close the door.
“Tim! You have got to come see this lady’s pictures! I mean … you’re gonna shit.” he said to, I’m assuming, the other nerd at the party who would appreciate my trick.
Then, as casually as if he’d just dropped off a roll of toilet paper to a buddy stranded in a gas station bathroom, he strolled back in and resumed his routine. I let him have the moment.
My college roommates called them my special eyes. (Do you remember that commercial? “Look … Look with your special eyes!”) Hank still affectionately refers to them by this name whenever I think I see a cat in the yard and it turns out to be a plastic bag, and other such misunderstandings. I can see most things, but color can be tricky. I get headaches after too much reading. I crinkle my whole face and bring things about a centimeter from my eyeballs to put it all together. Sad? Not really. I don’t know what I don’t know. I don’t know if my red isn’t your red. If it’s duller or distorted or muddy. I have no clue. Are the clouds closer than they appear? I mean … maybe. If you say so. I don’t know. Perception is reality, right? It’s like when someone describes The Revenant and how visually stunning the cinematography is. I’m never gonna watch that graphic shit, so I take their word for it, but it doesn’t change the fact that I’m never going to actually see The Revenant, so what difference does it make, really? OK, that example was a stretch … But the point is, I can see some form of red and some clouds and so, I guess, don’t cry for me Argentina.
The poetic karmic justice of it all is that I spent years watching my mom magnify large print and smash magazines to the tip of her nose, always giggling right up to the threshold where good fun met mean-spirited, only to realize that I blinked and became the object of my own jollies. My brother sent me an email on my first day at a new job: “I can see you now,” he wrote. “Sitting in your new office, hands folded in your lap, leaning into your monitor, face smashed to the screen, granny panties halfway up your back.” I looked down and smirked. If he had a spy in the room he couldn’t have gotten any closer. It was exact. I am my mother’s daughter in many ways, but perhaps none as strongly as my blind lady posture.
And I can laugh at it. All of it.
Except then someone took Spike’s picture.
Hank and his mom both noticed it first. In several pictures where someone used the flash, one of Spike’s pupils was red and one was yellow or white. It was the strangest thing. Googling commenced. Discussions were had. It could be nothing … or it could be cancer. It could be a sign that the blood vessels in her eyes are not receiving blood. It could be a handful of devastating, gut-punching problems. But I suspected the Best.
An ophthalmologist in town was kind enough to squeeze her in at the urging of Hank’s dad. Hank took her. When he came home he did this thing that he always does when he delivers bad news. He sat down next to me on the bed, put his hand on my leg and started rubbing his thumb back and forth. “Well, it’s Best Disease.”
First I cried.
Then, I called my mom. And she cried.
“Oh honey. I know exactly how you feel. I felt the same way when they told me your sister had it. And I felt the same way when they told me you had it. And my mom felt the same way when she found out I had it. But you know we really are so lucky.”
When my mom was in her 30s she went to see a specialist at the University of Michigan. After a full day of tests, questions and observations, the puzzle still had quite a few missing pieces.
“Let me ask you this, can you read the paper?” the doctor asked her.
“Yes. I have to use a magnifying glass, but yes.” she’d answered.
“But, the point is, you can read the paper. A lot of people can’t.”
And the older I’ve gotten, and the more I’ve morphed into Marilyn and her mega-magnified dreamworld, the more I’ve come to terms with the hand I’m holding. And it ain’t so bad. You learn to laugh at things like grabbing the wrong child’s hand at daycare and walking right up to the projection screen to read your notes during a presentation and having your husband read an entire movie’s worth of subtitles to you so you can watch what all the sophisticated folks are watching. It’s all part of the deal. You learn to just ask for a paper menu at restaurants where the food is listed on boards above the register. You squint. And you get by.
And, above all, you learn that very special “p” word. Who remembers our life skill here? You learn perseverance. Because things won’t be as black and white (they might seem more dark gray and cream, depending on the light) for her as they will be for others, my second daughter’s skin will get a little thicker. She’ll learn adaptability and how important it is to let humor hold your hand when confronting adversity. And she’ll learn the truth, which is that it can’t all be easy. If it were all easy no one would know how to fight for the good stuff or fix anything.
When the shit hits the fan, I want my kid to persevere. When the menu is listed in light blue print on a dark blue board high up on the wall, I want her to kindly ask for a printed copy and get on with her face stuffing. Because nothing – and I mean nothing – should stand in the way of a girl and her chicken soft tacos with pico and extra guac. Certainly not a decor choice. And certainly not egg yolk eyes. Sometimes you gotta just put on your big girl granny panties and promptly bitch slap the hurdle at hand.
Every parent gives their kids something terrible; Whether it’s a weird big toe or pointy ears or debilitating genetic disorder. (Note: If you don’t know what this terrible thing is, you don’t know there’s something weird about you, too. Look into that.) In the long run, having something not great happen to you is a blessing, not the curse it presents as first. It’s the stuff of character and grit and the female equivalent of balls (we really need to figure that one out).
Plus, she looks so cute in her little sparkly pink glasses. I mean, you guys, so cute.
My sunsets might be made of Burger King signs and distorted shades, but at least I get them. And I know that Spike will learn to see the beauty in sunsets, too. Whatever colors they come in through her special eyes.