Post on 24-Apr-2018
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.