Please Believe it’s Mild, Mom 1

Please Believe it’s Mild, Mom Laurel Burk

“Babe, your eye, it’s…”

It’s drifting. I know. I mean, no. I didn’t know it was until you said so. But now

it’s fixed, right? It straightened right up as soon as you pointed it out. That’s funny—I

guess this means we spend a lot of time together, because only my sister used to

notice…

“Aaah God, it’s doing it again! Gah, gross. Make it stop!”

And my mother, of course…

“Honey, I need you to concentrate. Track it with both eyes. When it gets close to

your face it’ll be like looking at your nose.”

You know how some parents drill their children nightly with multiplication

tables or vocabulary words? In my house we did ‘pop-up’ exercises. Well, I did pop-up

exercises; my older sister didn’t need them. My mother and I spent many hours of

quality time together this way—with her holding tongue depressors at various

distances from my face and watching my attempts to focus my right eye on them, with

varying degrees of success. To this day, I’m surprised to see a tongue depressor that

isn’t coming toward my face. I was (and still am) periodically assessed for the extent of

my 3-D vision. I stared at a lot of circles, taking the evaluator’s word for it that one of

them was supposed to pop out at me. Now I can see about half of what I’m supposed

to. We used to have a coffee table book at our house full of dot patterns that allegedly

created 3-D images. I never saw them; my sister always did. Of course I claimed to see

them.

Until recently, I thought the lazy eye correction was strictly cosmetic. I didn’t

want to look like a freak, did I? Imagine the bullying! But apparently this was not the

primary motivation for treatment—who knew? Appearances aside, letting my right eye

do its own thing could have resulted in the total loss of my 3-dimensional vision. So, uh,

thanks Mom? And you too, tongue depressors. But other markers of my difference are

not as easily modified.

Please Believe it’s Mild, Mom 2

I remember once in 6th grade science class, we were asked to examine a piece of

our own hair under intense magnification. Now, I have no idea why we were doing this,

though I suppose this could have been an effective means of evaluating our hair

conditioners’ ability to fight split ends. I plucked a hair from my head (or my

sweatshirt) and placed it under the microscope. I raised my eye to the lens to

investigate. Here was my primary finding, which undoubtedly had little to do with the

actual lesson at hand: my hair was see-through. Translucent. Colorless. Not blond, or

straw, or yellow, or any of the other words used to describe and represent it. There

were defined and visible edges marking its shape, but nothing in the middle. Heaped

into a ponytail, it at least looked opaque. But here, under the microscope, I could not go

about my usual business of forgetting I’m albino.

I’m not a full-fledged albino of

the red-eyes, legally-blind, no-sun-

tolerance, Powder variety. A few years

ago I stumbled across True Life: I’m

Albino on MTV, and found the

experiences of the show’s severely

albino subjects about as alien as any

run-of-the-mill viewer might. They

wore long sleeves and protective neck

towels in direct sunlight. I wear

sunscreen on my face at football

games and T-shirts when reading on

the beach. They begged for the latest

advances in portable eye telescope

technology in the hopes of maybe

passing a driver’s test. With a little

help from the friendly Hillsborough

DMV workers, I managed to squeak

Rather, I’m an albino of the aggressive-facial-expressions, sports-fanatic variety.

Please Believe it’s Mild, Mom 3

by with a passing grade on my eye test, securing a renewed, unrestricted license for the

next eight years. (This is probably not a good thing.) As very mild Asperger’s syndrome

is to severe autism, so my condition is to full-blown albinism. You might wonder, but

you can’t know definitively just by looking. Unless you’re looking under a

microscope—figuratively speaking.

I have ocular albinism. As the name suggests, this condition primarily affects

vision. A lack of pigmentation in the eyes causes a baseline of uncorrectable ‘low

vision,’ accompanied by a light iris color—mine are a mix of blue, green, and grey. My

visual acuity hovers around 20/40, though I once managed to score a 20/35, much to

my lifelong ophthalmologist’s delight. These numbers do not even qualify me for many

clinical definitions of low vision, but there are still some everyday implications of this

slight impairment. Other people do some of my reading for me, especially in public—I

once insisted my sister read me all 39 Cookout milkshake flavors aloud, even though I

was sitting in the front seat. My college professors might think I sit in the front of

lecture because I’m an eager suck-up. While this may be true, I’m mostly there because I

wouldn’t be able to read the PowerPoint from another row back.

Most cases involve some effect on the skin. I’m certainly fair-skinned—matching

the lightest available variety of most make-up brands—but still within the garden-

variety white person range. This fosters its very own genre of humor. My lab-dwelling

sister (sensing a rivalry here?) attended a sometimes-snowy Northeastern college. I run

around North Carolina in shorts and a T-shirt eight months out of the year. This leads

irresistibly to, “Look at you! You’re paler than the albino.”

For me the hair is perhaps the most defining aspect. I can always be picked out of

a crowd. When my friends’ parents watch Duke home basketball games on TV, they

find their own children on the screen based on their proximity to my shining, platinum

head. I always seem to be at a disadvantage when meeting people. When they see me I

go into their mental file “Blondest Hair I’ve Ever Seen,” whereas they always seem to be

nondescript brunettes. I often find myself trying to place people who seem to have no

trouble placing me. Even in my first hours of life, the nurses were so enamored with my

extra blond hair that I received 10s on my baby Apgar scores, a quick assessment of

Please Believe it’s Mild, Mom 4

newborn health. And as my

mother (a pediatrician who has

evaluated many an infant) tells me,

“no one gets 10s.”

While albinism is certainly

part of my identity, my marked

lack of impairment often allows me

to forget about it for a while, only

pulling it out as a fun fact for party

games. (“Never have I ever not been

albino. Never have I ever had 20/20 vision.”) I am able to see a basketball hoop from

twenty feet just fine. I have read my way through hundreds of beloved normal-print

books. I only claim to be visually impaired when losing to my sister at Mario Kart. So

basically every time we play Mario Kart. The very mildness of my case has fascinated

some clinicians and researchers—the Duke Eye Center wanted to study me, but how

many middle schoolers would feel compelled to endure stinging eye drops and boring

reading tasks in the name of science?

In many ways I’ve dodged a bullet. My ophthalmologist sees about 15 albinos in

her whole practice. Some are like me—that is to say, mild. Others, mostly boys, are

severely affected; 20/200 vision with extreme nystagmus, rapid eye movements that

give the eyes a shaking appearance. While my mother might claim some parts of my

upbringing were an ordeal, I have largely been spared. I have been graced with

mildness. Of course her perspective is different, my mother. When I sit down to read in

the living room, invariably it’s, “Do you need more light?” Despite my protestations,

she switches on every lamp in the room. Perhaps I owe her some compassion, not to

mention gratitude. I imagine she sees me as the small child who, when her family

members point out a colorful bird in a tree, is sociable enough to smile and nod, but

clearly does not see the bird. The little girl, who, having just politely waved to her best

Except this kid.

Please Believe it’s Mild, Mom 5

friend’s mother at a distance, turns to her own mother and quietly asks, “Who was

that?”

It leaves an impression when you learn something ominous about your child

through a Christmas Eve phone call. The

first ophthalmologist she took me to

accused her of being an overconcerned

physician-parent; there was nothing out of

the ordinary about my eyes. The second

one, new in practice, called her up on that

holiday evening during my preschool years

to deliver the correct diagnosis.

“I don’t want you to be upset,

because I know you’ll read about it.”

“Will she be able to read normally?”

“We won’t know for several years.”

Fast forward seventeen years and it’s

hard to say if I read normally. Some might

say I read abnormally, in the sense that I

read abnormally much. But this was hard to

predict, when a third grade standardized

test indicated a processing problem in

which my performance did not match my ability. I suppose she remembers the bumps

in the road better than I do. But I imagine the specter of the little girl with the vision

problem fades when my mother walks into my bedroom at home. Full of things—much

loved and used—that require better sight than she ever expected I would have.

Mountains of books; basketballs and video games strewn about. I wonder if seeing

through my eyes for a day would put her worries to rest for good.

“It’s not like you had perfect vision and lost it. You didn’t know any different.”

She says this with a poignant air of realization and relief.

“You’re not really that bad.” Her voice smiles with a sort of amazement.

Clearly does not see the bird you’re pointing at. Or the point of normal clothes.