Susan Atefat-Peckham
|
|
“…a
history of life-long mental retardation …totally incapacitated for
substantial gainful employment and will remain so for the rest of her
life.” Donald A. Holub, MD Columbia Presbyterian Medical Center,
1976. year through the newborn screening
which has been available for the past thirty years. But thirty years is
not fifty years. My first memory
of my aunt was when I was still a toddler. I didn’t know nor would I
have understood then that a small butterfly in her throat did not produce
enough of the hormones which determined her metabolic rate, that her
eccentricities were really symptoms: fatigue, weight gain, cold intolerance,
sluggish reflexes, constipation, prolonged and heavy periods, and mental
impairment. I thought it odd later that one year she was severely thin,
and the next, severely heavy, that her tongue sounded thick in her mouth,
that her eyelids and legs seemed swollen (myxedema), that her eyes seemed
wide set, her head big, and her neck, short, thick. But I didn’t think
it odd at the time that a grown woman in her mid-twenties, only four foot
seven, would have filled her room with plastic dolls and porcelain
animals. She stood hours at her glass cabinet, knees locked stiff and
head bashfully forward, opening and closing the door with care, dusting each
deer, each cat, then placing them back in. Over twenty years later I
would recognize that patience in my home in Switzerland while she kneeled in
front of her yellow Samsonite removing all of its contents, one at a time,
unfolding then refolding, replacing each undershirt, each sweater, each
stocking back to its spot, her knees fat and throbbing white. She is
rounded everywhere and shaped like a pear. Her hair curls black and
thick, her eyes, a filled darkness with barely any white, her neck, wide and
still bent forward a little, her shoulders limp and narrow. The belly
is roundest, pulling up the front hem of her skirt so it barely reveals the
tight elastic bands that roll her stockings just beneath her knees. Her
breasts are heavy and drawn down. She ties her keys on her belt so they
hang just over her belly, and as she moves to bring each garment in or out of
the suitcase, or to dust each animal figurine, the keys knock together in
small chimes. Her face is perpetually concerned; together, the eyebrows
form an upside down V, the mouth, a straight line. And her movements to
and from the suitcase are slow. Everything she does is with thoughtful
deliberation, the smile often accompanied by a quiet grunt or hum. But my first
memory of Nina is of her wailing suddenly in the hallway, the gold necklace
dropping from her neck into the buttons of her dress, her hands hanging limp
at her sides. There’s no telling what triggered it. Someone may have
looked at her askance, the wrong way. Someone may have walked by, the
wrong way. Someone may have been thinking mean thoughts. Someone
may have blown on her. Someone may have harbored the evil
eye. But watching her cry, I learned what it meant to feel tears, the
trembling heat that falls from the eyes to the mouth, the grief that drips
from the chin. It was during these times that I later learned to escape
to the flat roof and hang from the clotheslines, lie on my stomach in the
dark with my cheek to the tarred top of the house still hot from noon, and
listen through the stone to the almost musical sound of her sobbing, a sound
which moved like reeds, backward and forward, with bursts of silence between,
until sometimes minutes sometimes hours later, one burst finished it.
The neighbors moved from their windows then
and turned out their lights, and the silence seemed to lift the roof from the
house so that all was open and calm and free. Perhaps for
this reason she preferred to sleep outside at night. Grandfather
arranged her bed on the porch, the mattress white and full, a canopy of
mosquito netting draped down all four sides. It seemed magical to me,
Nina’s bed among the roses and fruit trees, next to the grill where
Grandmother prepared kabob daily, in the vegetable garden and under the open
air. I imagined it was the kind of bed which floated off at night to
some perfect world without wailing, only the things Nina loved, yellow
suitcases, pink button-down sweaters, baby dolls, photographs, orange cats,
drawing books, televisions, white purses, cotton candy, sewing
machines. After the Islamic revolution in 1978, the sound of gunshots
in the streets frightened her inside, the threat of thieves, the vigil of
Postars outside the gates of the house. Even the stray cats which once
slept on the walls around the house seemed to fight more often, and she was
afraid of them too. When the war with Iraq began, the issue of sleeping
outside was settled. For the years
following, the United Nations had stationed my father in New York, then
Geneva. During our subsequent short visits from the United States and
Europe, my job was to teach Nina English, although I knew that Grandfather
had already humored her with the favor several times before. At the
table I could hear her strain to breathe as she pushed the pencil into the
paper, copying the shapes left to right, saying over and over again, “Thank
you. Thank you. Thank you.” A. B. C.
D. E. She learned CAT. She learned HI. She learned NINA
before she raised shaking fingers to wipe her forehead, cracked her knuckles,
then said that enough was enough. When we were through, or whenever she
felt like it, she led me by her swollen hands to her room and opened her
cabinet to pull out a porcelain figurine. The last one she let me keep,
and I wonder now if she hadn’t known then that it would be the last time I
would be in her room for sixteen years. The Islamic revolution,
American hostage crisis, Iran / Iraq war and my American passport would keep
us away. When I did return, in 1993, the room was a time capsule,
everything just as it had been, the cabinet full with trinkets, the shelves
overflowing with dolls, the desk along the side wall, only the photographs as
evidence that time had passed. Later Nina would become more demanding
and more generous. She persistently asked for gifts from my mother, who
in turn told me that she didn’t want to spend too much money because Nina had
taken to giving her possessions away at random. I remember the
anger. Often her crises are brought on by medication, often by her own
monthly hormonal changes. She takes her pills, but despises the
dependency. Phenothiazines (such as Melleril and Chlorpromazine),
prescribed to correct any chemical imbalance in her brain, also cause her
fatigue, respiratory difficulties, shaking hands, slow movements and weight
gain. Liothyronine further contributes to her weight gain. And
menstruation only complicates the side effects of these medications.
About a week before her period, Nina begins to worry about where the men
are. When she is bathing, all men must leave the house, but when she
has her period and is bathing, the men must leave all day. Her
menstruation is long and painful, often accompanied by crises which might
last up to three days. When my Aunt Lili and I stepped from the cab and
heard the screaming from three blocks away, we knew that Aunt Nina was out on
the street. And we knew that Grandmother couldn’t have gotten her back
inside without extra help. The neighbors understand how things are;
they try to help because they are uncomfortable and don’t know what else
there is to do, but Grandmother feels shame if Nina lashes out at them.
These times Nina would beat her head against the ground or wall until it bled
or took the knife to her hands. These times she would spit or throw
mucus on us. Later, once she was calm, she would take our hands and cry
and kiss our fingers, begging apology, saying, “I’m sorry. I’m
sorry. I don’t know what’s wrong with me, I don’t know why I do these
things, what is wrong with me? I want to be nice. I am
nice.” By then, some of us were too angry to forgive, some of us too
tired. Mother once
told me of a fight she had with Nina. She locked the two of them in the
house and whatever Nina did, Mother did two-fold. If she screamed,
Mother howled. If she stomped her feet, Mother stomped longer. If
she yelled insults, Mother yelled worse. If she broke things, so did
Mother. If she hit Mother, Mother hit her back. She cursed at
Mother saying she hoped that Mother would fall from the airplane on the way
back home, that Mother’s husband would divorce her and throw her into the
street alone, that Mother would become crippled and unable to visit
her. When she threw all the photographs of our family to the floor and
stepped on them, Mother gathered them up and refused to return them.
When she begged for them later, Mother still refused. Finally, while
Mother, wild and crazy with the moment, was standing in the middle of the
living room in front of her sister, Nina stopped and said, “What are you sent
here to take care of me. Look at you. You are crazier than I am.” Now that
Grandfather has died, Nina is angry, and afraid. She holds his
photograph to her chest before she sleeps and wishes she were dead. She
cries and kisses his face. She worries that Grandmother will die, “Then
who will be kind to me?” I was two weeks from delivering my son in
Lincoln, Nebraska when Grandfather died of esophageal cancer in Tehran, but I
heard all of the details of his illness and death from Nina that Christmas in
Switzerland. No one told her he was sick, she said. She asked,
but no one told her. Fine, she said, what difference would it
have made anyway? He had asked for her first, after all, on his
deathbed. And that is how the story went. The night he knew he
would die, he asked to see each member of his family, and he had asked to see
Nina first, alone. No one knows exactly what they said to one
another. She told me that she held his hands, told him to be
comfortable, that everything would be fine, Daddy, fine, take good care of
yourself and don’t worry about a thing, I will take care of my mother, you be
comfortable. Mother says that when she walked in, Grandfather and Nina
were quiet and staring at each other. She is the only daughter who
reached fifty and still had black hair, like Grandfather. Nina said the
next morning when she heard that he had died, she beat her chest.
Mother was there between them, Nina on one side and Grandmother on the other,
each screaming, What cancer? What cancer? one hand tethered to Mother,
the other free to slap anything nearby. Mother needed to burst too, but
knew she was the link that held the other two women to the ground. If
she had let go of their hands, she said, it seemed they would have flown from
the ground to the sky, lost, lost. Nina tells me
all this on the couch in Switzerland because we are the only ones in the
house. Mother has gone with Grandmother to the doctor’s to check her
heart; they’ve told Nina they have gone shopping. I am the sitter, but
we have told Nina that she needed to babysit me. So she is sitting on
the couch with me telling me stories for three hours. The last hour,
she brings a shoebox and opens it. It is filled with pills. She
tells me the names of each one, when she must take it, how it helps
her. She confesses that one day she got angry, refused to take anything
and flushed the whole box load down the toilet. I imagine Grandfather’s
reaction to this, a disciplinarian at heart but firmly committed to an
unlimited kindness to her. “She has nothing else,” he would say,
“let her enjoy what she can.” Now that he is
dead, and Great-Grandfather is dead, Nina wonders if their voices will ever
quiet. People say, but how can you explain death to someone with the
mind of a child? She does not need explanation. She does not have
the mind of a child. She is a woman. And she understands in her
own ways what absence is. She understands the absence of person, a
sharp missing, the two-dimensional slickness of a picture frame, the cold
bend of chair cushions with empty spaces above them, a half filled pack of
cigarettes on the side table, a bed which hasn’t been slept in, a belt still
hanging from the chair. The next time I
would see her would be in Switzerland, where she spent most of her time in
front of her yellow suitcase. Mother tells me that after we left to go
back to Nebraska, Nina decided she was sick of everyone and wanted to go
home. She packed her bags and demanded that everyone leave although she
knew that the tickets to Tehran weren’t scheduled for a week. She
took her suitcase down the elevator herself and put it next to the car.
She sat on the curb in the parking lot and waited. All day by herself.
Mother says when she came down to check on her, the children had already
gathered around, but no amount of begging would bring her upstairs, “I want
to go home,” she said, “Now.” The next time Mother checked on her, Nina
was yelling back at the children, and spectators had gathered on their
balconies to watch. She refused to come upstairs. The next time
Mother went downstairs, Nina was howling and crying and the Swiss police were
there, trying to communicate in French with a mentally handicapped woman who
was barely literate in Farsi. When they asked Mother what this woman
was doing on the street next to the car with a suitcase, Mother tried to
explain, “She wants to go home.” She told Nina gently, now look what
has happened, you have been out all day in this parking lot, see all the
children have gathered around to stare, see all the people have come out to
look, bring your tears inside, let’s go upstairs, look how the police have
come because of you, let’s show them that you are good, let’s go
upstairs. And Nina cries on her way upstairs, saying, “I
am good. I am good.” Then leaves her suitcase lying on its side,
unopened, on the floor. So how is it
that we say she “doesn’t count,” that we always seem to want to get rid of
her? We think, you interfere with my life. You can’t make your
own decisions, you don’t understand, you are a nuisance, you are too
different, you are not as good as I am, you are not complete. You don’t
count. After Grandfather died, Mother, Lili and Grandmother took a
month before they went into his room to sort through his closet. When
they did, Nina was sure to be there each time. Even if it were in the
middle of the night, she insisted on sitting in his chair to watch their
every move, dying of weariness and boredom, but saying nonetheless, “What is
that? What are you doing? Don’t think I’m not watching everything
you are doing. Don’t think I don’t know what is going on.”
Saying, I count for something, I count for someone, I am somebody.
Beneath the veneer of our disgust, of our feeling inconvenienced and awkward,
under the polish of our feigned embarrassment and silent shame, what is
left? It could have been anyone. It could have been
me. Nina does more than use time and patience. She does more than
test anger. She enacts our own fears of what we might have been.
She is the incarnation of our patience worn ragged, of a frustration which
escapes us without permission. I remember the time when she turned on
me and all I wanted to do was leave her, for better or worse, abandon her and
be free of the insults, the noise, the intensity, the grief. While I
was capable of a sharp tongue, I was never capable of cruelty.
Caregivers are tired of her, but they are exhausted by themselves. Even now, nine
thousand miles and many years away from her, memory takes me back to when
Grandfather’s hair and moustache were still black, when Nina stood loyally
above the head of his chair to his right, waiting, waiting, her short stature
seeming like the chair’s shadow. She mumbled constantly; it took me
years to understand the gist of the words. She said, “Say something
sweet and nice so that I can be restful and you can be restful and Mother can
be restful so I can be restful and you can be restful and Fari can be restful
and we all can be restful so I can be happy and you can be happy and Mother
can be happy so I can be happy and you can be happy and Fari can be happy,”
with each restful and happy person one finger on her hand curled into itself,
rolled to her palm like the bead of a tasbih. “Say something
sweet and nice so the bad is wiped away,” she said, and she rubbed her foot
along the ground to wipe the bad away. Then Grandfather rubbed his foot
along the ground to wipe the bad away, still sitting, staring ahead. “Pashmak,” cotton candy, Nina said. “Pashmak,” repeated Grandfather. “Rohatagholghoon,”
jelly candy. “Rohatagholghoon” said Grandfather, taking a drag from
his cigarette. “Asal,” honey. “Asal,” he said, blowing out the smoke. “Shicar,”
sugar. “Shicar,”
he said and stared ahead. And when she was finished with her list, Nina
uncurled all her fingers, and began again. And this might continue for
hours, above Grandfather’s chair in the day, above Grandmother’s bed in the
night. If after fifty years they refused to listen, if they had had
enough, angry clapping from her room followed, the loud cracking of her
fingers in the hallway, the litany of rhyming words, and finally the ranting,
screaming and physical violence. Now that he is
dead and Grandmother is the primary care-giver, people ask her why. Why
not place Nina in a home? Why not let her lead her life away from
family? Live comfortably for the few years you have left. Let
someone else deal with her. But Grandmother knows that Nina grew sick
of her therapist after just two sessions, and that she is disturbed by the
sight of the handicapped. That she once attended a special class for
the disabled and was frightened by the wheelchairs and the limbless, the
drooling and the ranting. She said, “I am not crazy to be in a class
like that. I am not like them.” Then refused to visit
again. Grandmother, now in her mid- seventies, sometimes swears under
her breath, but on this issue she is firm. She lifts her chin to the
air and says, “So they take her away, so what? Does she stop being my
daughter?” She frowns, “Should I take her to a field so that other people
won’t hear her cry? Leave me alone with her, I will be fine.”
Then she says, “As long as I breathe, I will take care of her.” And, “She is
my child like you are my children.” And, “I will not separate myself
from her.” bang her head like that on the marble floor.
Now, is that a blood of a normal human with normal head if they do
that? What goes on to the crazy mind to think like that?” What goes on in
anyone’s mind? I wonder on the other end of the line. There are
too many of us on this small world. And much of our lives are
invented. We exist in the spaces between what has happened and what is
told, between fact and memory. We exist in the ways we see ourselves,
in the truths enacted by others. I will remember how Nina loved that maidservant
and her son. I will remember her effort in pushing the pencil point
down to the page, so hard the tip broke through to the tablecloth. I
will remember the slick porcelain deer on my shelf. I will remember the
cheering while she danced. And her awkward laughter, her humor.
The story about the family expecting another daughter; the first was named “Tara,”
and they wanted a name for the new baby which rhymed. Nina yelled one
from her room, “How about Ghara?” (meaning ‘curds and whey’). I
still see her sleeping with Grandfather’s photograph pressed to her chest,
trembling. And the gentleness of her arms carrying my son, the yearning
in the eyes when she watched him feed. Her begging for his photographs
to keep in her bag. I know her many wet and whiskered kisses at
many airports. That before I could walk, she carried me also, watched
me feed. That before I was born, she was already living. Who am I to say
that she is less than the rest of us? I imagine Nina
in the vegetable garden again sleeping on her bed near the fruit trees,
dreaming of another place, the world where Grandfather is, as far from here
and as good as she imagines. What she names Behesht—heaven,
where there are no defective brains, no doctors, no medications, no weight
gain, anxiety or cold temperatures, no stomach aches or head aches, no
gastrointestinal disorders or periods, no laughing children, no gawking
passers-by. She is moving slowly. She is walking away. And
she is smiling out loud, carrying the world in a yellow suitcase, bursting at
the rims.
2 Levy,
H. L., “Neonatal Screening for Metabolic Disorders,” in Prevention of
Developmental Disabilities, S. M. Pueschel & J. A. Mulick, Eds.,
Baltimore: Paul H. Brookes, 1990.
3 American Association on Mental Retardation, Mental
Retardation: Definition, Classification,
and Systems of Supports, 9th Edition. Washington, D.C., 1992. |
