the reservations; he wanted to secure a place for his daughter to
live out her life as happily and naturally as she could. Years later
he joined her when he finally succumbed to the disease himself,
or at least appeared to. Since he died, his biographers have
speculated that he wasn’t a regressive at all, suggesting that he
just wanted to be close to his daughter.
When my advisor proposed that I study and photograph
regressives for my undergrad thesis, I was excited because there
aren’t many pictures or videos of them—not nearly as many as
you might expect. The main reason they are kept out of the public
eye is because of accusations that the reservations are a violation
of human rights. Most who argue this don’t have family or
friends that are affected by the disease, but the fiercest opponents
include families that don’t want to be reminded of the loved ones
they’ve lost to the disease. I can understand that. Seeing my
father in that primitive state was painful, but I was surprised
more than anything else. Even though I barely had a chance to
know him, I felt his absence every day of my life—even more so
because it had never been explained.
*
When I get home from school later that day, the house is
dark. My mother has the night off, and when I pass her room
upstairs I see the light of her bedside lamp shining around the
cracks of her door. I stand outside, listening. I consider knocking,
apologizing for my accusations, but I slink off to my room
instead. Our family has always left things unsaid.
On my bed I find a stack of the photographs I had left in the
kitchen—face down—and an old cardboard box marked
“Christmas ornaments”, spotted with mold and water stains, one
corner crushed in. I sit beside the box and pull at the folded flaps,
feeling grime stick to my fingertips as I open it.
My father’s old camera is here, a manual Canon 35mm SLR,
identical to mine. The lens is scratched and the film compartment
is jammed shut; something rattles inside when I shake it. My
mother had his backup camera repaired and gave it to me for my
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sixteenth birthday, the summer before I left for college. The
gesture meant a lot: it was the first time she had openly
acknowledged my father, long after we had stopped discussing
him. Whenever other students—and often my teachers—try to
persuade me to switch to a digital camera, I cling to that small
fragment of my father, a relic of the past, and ignore them.
I rummage in the box and pull out two handfuls of plastic
black and white film cartridges. A number of them have been
exposed, the film leader rewound into the magazine, but they
haven’t been developed. I set them aside, wondering if I’ll be
able to coax photographs from the aged emulsions.
At the bottom of the box are several small, red leather photo
albums. I open the top one and see my face, wide-eyed and
pudgy, about three years old. I turn the thick plastic pages and
see photo after photo of a younger me. The next book is filled
with pictures of my mother, pregnant. There are images of her
later, in the hospital, carrying her newborn son.
There are a lot of close-ups of my mother as a young woman,
happier than I can recall ever seeing her. One picture in particular
shows her posing for my father—it makes me wish that a woman
will look at me that way someday. The next photo shows a
complete transformation: she’s crying, mascara streaks lining her
cheeks. Was this when he gave her the bad news? When she
realized she was going to lose him? I imagine having that same
conversation with my mother one day. I don’t ever want to cause
someone that much pain.
I know why my father decided to capture that heartbreaking
moment. My mother’s face is open, her defenses are down—you
can see right to the core of her. As frightened and vulnerable as
she appears, I think it’s the prettiest I’ve ever seen her.
The third album is incomplete. There’s a picture of my
mother and me in the park and some photos from my fifth
birthday, including a close-up of me with cake smeared all over
my face. And there’s one picture of my father.
This last photo, only a third of the way through the mostly
empty book, is taken at a skewed angle, badly out of focus and
underexposed. Despite the amateurish quality, I see that he is
kneeling on a boulder at the park, the beginnings of a beard
growing in. It looks surreally similar to the photograph I took
yesterday. I realize that this is probably my first photograph.
“I haven’t seen those in years,” my mother says softly.
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I look up and wipe tears from my face. She’s standing in the
door with her bathrobe wrapped around her, her arms wrapped
around that. She’s been crying too.
“I’ve never seen them,” I say. I sound harsher than I intend.
This box is a time capsule, a memorial, dedicated to my father.
It’s also a peace offering. “Thank you.”
“You’re so much like him,” my mother says.
“Is that why you didn’t tell me?” I ask.
She nodded. “I didn’t want to know … if I were going to lose
you too.”
I hold up the book and show her the picture of my father as a
young man.
“Did I take this?”
She comes closer to study the picture then nods. “You were
only five. He wanted to teach you photography, couldn’t wait
until you were old enough. He was planning to get you a training
camera, but he was already slipping away. After that day he went
quickly.”
When I scoot over she sits on the edge of the bed. She rests a
hand on the broken camera on the bedspread.
“I went for a blood test today,” I say.
She nods. “I thought you might.”
“I have to know.” The thought of losing my mind like my
father did is terrifying. What kind of life is left after forgetting
your wife and your son, living like a savage?
“I didn’t want him to go,” she says. “But he decided he
wanted to go to a reservation, once he found out what was going
to happen to him. He made me promise. And even then I didn’t
let him leave until I was absolutely sure …” Her voice quavers
and she looks at me, then away and closes her eyes. “Until I was
sure there was nothing left.”
“Are you sure?”
She flips over one of the pictures I printed, a blow-up of my
father’s face. “I thought I was. Until I saw this.” She lays the
picture in her lap. “What if I made a mistake?”
“You did what he asked, Mom.” I put my hand over hers,
over the picture in her lap. “There was nothing else you could
do.” “When do you get the results?”
“Not for a few days.” I put the photo albums back into the
&n
bsp; box, in the order that I found them. “Do you want to know what
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I find out?”
“I don’t know.”
She nods to the film rolls scattered on my bedspread. “I
almost developed those, a few times, before I put them away.
Your father was too confused to do them himself. He gave up
after ruining a couple. But he kept shooting that camera, until the
very end. Until he could barely remember how a camera
worked.”
I scoop the rolls up and cradle them against my chest.
“Do you think there are still pictures on them?” she asks.
“I don’t know. I don’t know how much is left. But I’m going
to find out.”
*
Hollander’s disease has a very slow onset, resembling
Alzheimer’s disease at first, then progressing very rapidly.
Early symptoms include short-term memory loss, irritability,
and mood swings. Long-term memory gaps and personality
shifts develop, followed by disorientation and confusion.
Eventually the higher faculties deteriorate—most noticeably
reasoning and communication. There’s an accompanying loss of
inhibition and an increased sex drive, a strengthening of what are
considered primal urges.
In the final stages, victims are reduced to simple speech and
behavior; basically, they become evolutionary throwbacks.
Cavemen.
As I stand in complete darkness, blindly guiding the film
from the cartridges onto spiral holders, I think about what my
father must have gone through. When I stand in the darkroom—
his darkroom—I always feel close to him, closer now that I know
I might suffer the same fate. He knew what was happening to
him, but did he lie to himself that it was all just a phase, that he
would be all right—the way my mother did? When he could no
longer believe his own lies, how did he keep himself going,
taking pictures and making plans for his future instead of giving
in to despair? I hope his photographs will give me some of the
answers.
There are eleven rolls of film in total, but only eight of them
yield what could be called pictures. The rest are a waste, not
because of the age of the film, but because they reveal only blurry
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photos of nothing in particular: impressions of grass, a cloudless
sky. A full reel that looked like it was taken with the lens cap on.
These are the photos of a man who is losing his mind.
I make contact sheets from the negatives and examine the
miniature images, organizing them in my best estimate of
chronological order based on the deterioration in quality of
composition and technique. I select the best of them and develop
my dad’s photographs one by one, growing more despondent
with each new photo I pin to the line to dry. I had imagined that
I could put together a collection of his last work, but the pictures
are almost too painful to look at.
The first roll is closest to my father at the height of his
talent—pictures of the neighborhood, places he had been. Some
of them were long drives away, back in his hometown two states
away. It was like he was revisiting his life, one last time. There
were also pictures of people, a lot of children in the playground,
a few more pictures of me.
My father was an urban photographer, documenting the city
and the people that live there, but I noticed a trend towards
emptiness—a large abandoned parking lot, an overgrown field
behind a chain-linked fence, and then pictures of the open
country just outside the city limits.
Later, rolls seem almost random, little better than the careless
snapshots of a tourist. An entire roll follows a woman walking
down the streets who becomes overtly frightened of the
photographer stalking her. Another shows a series of pictures of
sidewalks, garbage bags, abandoned cars, piles of dog shit on the
street.
The rest are simply confused. Pictures of his hand, his feet, a
leg, his penis, his back reflected in a mirror. Maybe he was
cataloging the parts of himself, trying to stop himself from
changing in the only way he knew how, by preserving himself
forever in a photograph. There is one startling shot of his eyes,
as though he had held the camera the wrong way around and
peered into the lens.
When I finish, exhausted from spending the whole day
developing and nauseous from the chemical fumes, I leave the
pictures hanging in the darkroom. My mother will find them
there, though I’m not sure if she should see them or not. I finally
know exactly what she meant when she said my father was gone.
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*
There is no cure for Hollander’s. There is no treatment.
Many doctors continue to study and question what caused the
disease in the first place, even as the number of new cases has
dropped to the hundreds each year instead of the thousands. It’s
a hereditary disease, but the trigger for the genes has yet to be
discovered.
Some people blame the government, terrorists, or God.
Others blame pollution, radiation, even cell phones. One popular
belief is that it is a result of human tampering with nature; that
for us.
Most people simply pretend that it doesn’t exist.
I’m nervous as I approach the security station. I slide the
university pass my advisor arranged for me through the slot in
the glass. The pass has expired, but I couldn’t wait for the
paperwork to be renewed. I suppose I can tell the security guard
that I’m visiting my father, but that would seem suspicious if he
remembers me from my visit last week, and I want to bring my
camera inside with me.
“You’re back!” the guard says. “You ran off in such a hurry
last time. People don’t know what to expect when they come
here. Not everyone can handle it.”
“I just realized I was late for a class.” I give him a foolish
smile.
The guard frowns over his glasses as he examines the pass.
“This is a week old.”
“I know, but …” I lean closer to the window. “This is kind
of embarrassing, but I botched the entire roll of pictures I took.
It was a completely amateurish thing to do, but the film never
threaded into the camera.”
“You’re not using digital?”
“I wanted a nostalgic touch,” I say. “Listen, I really need
photos for my senior thesis …”
The guard studies me. “Well, you’ve already been in there
once, so I guess there’s no harm.” He slides the pass back to me
and taps the touchscreen embedded in the desk. “Check in here.”
When I check in I also check out, logging a time still several
hours away. If I’m lucky no one w
ill notice that I haven’t left
after this guard ends his shift.
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When I get inside the tall, electrified gates I walk a distance
from the guardhouse before ducking into the trees. I couldn’t take
many photos last time because the regressives had run from me,
or hidden in the forest, though one curious woman had actually
edged up to me. She plucked at my loose tee shirt and sniffed at
me, her body close and smelling earthy and sun-warmed. As
soon as I spoke to her she bolted like a scared rabbit.
Under the cover of thick foliage I strip, folding my shirt,
jeans, and boxer shorts and placing them in a shallow hole with
my sneakers and a plastic bag containing my watch, keys, cell
phone, and wallet. I cover them with dirt and place a rotting log
across the spot. I walk a little farther to the stream, which is man-
made like all the other “natural” features on this expansive tract
of land.
I slap on thick handfuls of mud from the banks of the stream,
shivering at the cold sliminess as I cake it over my bare skin. In
preparation for this I’ve also grown my beard for the last three
days, but my hair is still short. It’s not much of a disguise, but
I’m trying to pass myself off as a new arrival at the reservation;
at the very least, I hope I won’t spook the regressives as soon as
they catch sight of me.
The only modern luxuries I allow are my camera and my
camera bag, which has enough film and some provisions to last
me for a week or so. After that I’ll need to find food, though I
doubt I’m up to hunting the wildlife they truck in here for the
regressives.
I trudge through the forest making far too much noise and
feeling every stone and twig dig into the soft soles of my feet. I
sense eyes on me, but I don’t spot anyone. Eventually I emerge
into a clearing. There’s a half-circle of regressives facing me,
waiting.
My eyes scan their faces, glancing over their bronzed bodies
and then sliding away. Their nakedness makes me self-
conscious. The group is made up mostly of men, burly like the
muscle-heads at my gym. The five women there are smaller, less
muscled, and lean.
I stare at their sagging breasts and react in spite of myself.
I’m surprised to see that two of the women are only a little older