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Michigan in Color
8 — Wednesday, November 9, 2022
Practical bedtime stories and feelings you can’t name
Five years old
Diana had to pry her mother’s
bedtime stories out of her. They
were the charred remains of a war
fought with small fists and persis-
tent whines, but each time she sur-
rendered, Diana could crawl into
her mother’s skin and live inside
of her, for a time, again. While her
mother spoke, Diana could count
the parts of her that belonged
to her mother: the hollow of her
cheek or the way she answered the
phone. Like counting sheep, she
learned how to soothe herself to
sleep. She found she could contort
her body into seemingly impossible
positions to fit into the nooks of her
mother’s body, and there, Diana
didn’t have to think about any-
thing. She could be content with
the knowledge that she fit into
her mother’s shape. The bedtime
stories were mostly parental pro-
paganda; her favorite one to retell
was that of 垃圾婆, a withered old
lady who snatched up children
that stayed up past their bedtime
and carried them away in her trash
bag. Other lessons included eter-
nal shame and misery for children
who didn’t finish their homework
or children who lied to their moth-
ers.
The word “story” held tremen-
dous weight in the family, a detail
that Diana had always inherently
understood.
Her
grandparents
kept their childhoods in China
tucked neatly in a small bundle at
the back of her throat like a piece of
mashed meat too large to swallow.
Even more obscure still were their
tales of raising Diana’s mother in
America, which lay hidden beneath
the soles of their slippers. She had
never heard the story of her birth
or her sister’s birth or about the
names of family members who
were only spoken about in hushed
tones. When she would ask her
mother to tell her a true story, her
mother liked to say that she was
too young to deal with anything
true. But once, when Diana asked
for something true, her mother
conceded. She would tell Diana the
story of herself and Diana’s father
and their love.
Before her mother is her moth-
er, she is only 织女, or Zhinu. She
is the youngest and most beauti-
ful daughter of the Goddess of
Heaven, charged with weaving the
clouds in the sky. Zhinu takes her
responsibilities seriously; she laces
and molds each water drop with
painstaking care, working until her
hands ache and her vision blurs. But
she never complains or resents her
duties, for she loves seeing the joy
that her clouds bring to the mor-
tals down below. One such mortal
is Diana’s father, 牛郎, or Niulang.
Niulang is a poor cowherd without
a family, but he is charming and
young and has a strange sort of
magnetism that has always served
him well. It is through this charm
that, one day, Niulang is gifted an
ox who becomes his closest com-
panion. Each day after Niulang
has finished working, he lies in the
fields against his ox with his eyes
fixed firmly on the sky, admir-
ing the beauty that Zhinu sculpts
each day. Zhinu smiles down at
him, playing with the shapes of her
clouds to entertain Niulang with
stories of herself and the world.
Niulang sings songs to the goddess,
with a heart full of wonder for the
beautiful creature in the sky. Over
time, Zhinu grows fond of the mor-
tal with the melodic voice, and they
begin to fall in love.
Eight years old
There was music playing in the
house. Diana’s mother was in the
kitchen flipping through recipes
and shifting from foot to foot ever
so slightly off-beat. Diana stood
between her mother’s legs and
wrapped her mother’s cotton dress
around her face and body. The
world around her was black and
blue paisley. Her friends’ mothers
all smelled so motherly, but Diana’s
smelled the best — like wet grass
and pears. Her mother feigned
confusion, pretending that she did
not know where Diana had gone.
Diana giggled. Her mother’s face
appeared before her, unwrapping
her face from its cocoon to shout
boo! Diana smashed her cheek into
her mother’s.
My sweet 蝴蝶, her mother
cooed.
Her father liked to tell Diana
that there was always music play-
ing so that at any point her father
could scoop her up onto his feet
and dance her around the living
room. Today, he waltzed into the
kitchen, running his hands over
Diana’s mother’s shoulders and
stooping to kiss her lightly on the
neck before offering Diana his
hand. She clung to him for bal-
ance, finding knots and holds in
between his fingers and along his
back, using the full range of motion
of her neck to look up at him. He
spun them both clumsily out of
the kitchen. He smelled sticky like
gasoline, but sometimes it was
paint thinner and other times it
was pavement after it’s been rained
on, so she held her breath when he
held her to dance. But his voice was
sweet and smooth.
His voice made every movie
theater usher let them bring candy
into the theater even though they
hadn’t bought it there. Waitresses
swooned over his words and teach-
ers forgave him for being hours
late to pick up Diana and her sister
from school. Diana felt proud that
she had a father that seemed to
wield such power over the rest of
the world. It meant that she got a
lot of attention whenever she was
with him too. People would notice
her at his side and pinch her cheeks
or her curls. Then they would hear
Diana call her dad 爸爸, and they
would get this look in their eyes
like he was the most decent man
they had ever met in their lives.
Once when Diana asked her father
why everyone seemed to love him
wherever they went, he said that he
always kept a sugar cube under his
tongue. So he was always a sweet
talker. The next day, Diana put a
sugar cube underneath her tongue
and told her crush at school that
she liked him.
When the song ended, Diana’s
father slipped her off of his shoes
and went into the kitchen with
Diana’s mother to say goodbye
before work. Diana’s sister clunked
down the stairs and ran to sit on
the couch, calling Diana over to
her. She had a thick black book
between her small hands, and she
told Diana that she had found their
parents’ wedding album. Diana
excitedly went to sit next to her sis-
ter and watched her sister begin to
flip through the pages. Their moth-
er’s dress was simple; it sheathed
her snugly in red satin. She wore
no veil. Their parents seemed like
strangers to them in these photos,
lighter somehow. Their mother
was nineteen when she married
their father, who was thirty at the
time. Her parents had been invited
haphazardly, but had not been in
attendance. Diana’s sister lingered
on a photo of their parents feed-
ing each other cake. Frosting was
smeared across their father’s cheek
and his face was lit up in a wide
smile. Their mother’s right hand
was resting on her stomach, her
mouth stretched in a line, the faint-
est suggestion of curve pulling at
the seams of her dress.
At dinner that night, Diana and
her sister sat at the table waiting
in silence. They had decorated the
table together, strewing purple
flowers from the backyard across
the tablecloth. Diana’s sister had
just taught Diana how to light
the candles, and they played with
dipping their fingers in the wax
together. Her sister was nervous
and kept fidgeting with her cuti-
cles, but smiled weakly whenever
Diana looked up at her. Diana start-
ed to worry that the candles would
melt all the way down before she
could show her parents what she
had learned.
Their father came home around
nine, an hour before Diana would
have to go to bed. Diana saw her
sister recoil at his hug, so she held
her breath before he came to her.
She asked him where he was and
he pretended not to hear. Before
they ate, her father grasped the
hands of Diana and her sister, sig-
naling the family to follow. Diana
closed her eyes, allowing the words
of her father’s prayer to drift over
the room. She peeked out of one
eye like she always did whenever
anything involved people closing
their eyes, and she saw that her
mother’s eyes were open too, fixed
vaguely on the melting candles.
That was the first night that Diana
had noticed the air of tension that
had settled on the house like fog
around trees. But when she finally
put her finger on it, she realized it
had been there for some time.
One day, Zhinu and her sisters
travel to the Earth to bathe. They
unlace their long red robes and lay
them on a log before splashing into
the water. Looking for water for his
ox, Niulang comes across the riv-
erbank, and upon seeing the heav-
enly sisters, he is mesmerized and
stops behind a tree to watch them.
Niulang spies Zhinu amongst the
sisters and sees that her beauty is
even greater up close. From behind
the tree, Niulang begins to sing.
Zhinu, hearing the song, emerges
from the water and redresses,
padding towards the noise. When
Niulang appears to her, she is elat-
ed to see him. They embrace each
other, grateful to finally be stand-
ing together. They sit together
on the riverbank for some time,
resting on Niulang’s ox and talk-
ing of their lives and hopes for the
future. Niulang plucks a flower
from beside him and tucks it into
Zhinu’s braid gently. Both goddess
and mortal believe that there is no
one else in the world for them.
When the sisters’ mother calls
them
home,
Zhinu
promises
Niulang to return soon to see him,
leaving Niulang on the ground.
Niulang grows increasingly bitter
with his inability to have Zhinu
while he awaits her return. He
decides he must have her for his
wife. Knowing that mortals and
immortals cannot wed, Niulang
concocts a plan. On the first day
of spring, when the sisters finally
descend again to bathe in the river,
Niulang lies in wait behind some
brushes.
He watches Zhinu with her fam-
ily, anticipating their wedding and
brainstorming names for children
still unborn.
Noiselessly, Niulang slips out
from his hiding place and steals a
dress from the log that the sisters
had placed them on. The sisters tie
their dresses back on and ascend
back to the heavens, while one sis-
ter, the fair Zhinu cannot find hers.
It is then that Niulang reveals him-
self and proposes marriage to the
frightened girl. While Zhinu loves
the young cowherd, she does not
wish to abandon her home in the
heavens with her sisters and her
mother. But when Zhinu looks up
at the sky, she sees her mother’s
cheek has turned away from her,
and she knows she has been cast
down. For Niulang has seen the
goddess naked, condemning Zhinu
to accept his proposal and stealing
from her immortality.
Eleven years old
Diana liked the feeling that
slouched men gave her on her
walk home from school, faceless
men who followed her through
the supermarket aisle, toothless
cashiers whose eyes lingered too
long on the hem of her skirts, on
the barrettes in her hair. She was
desired, they told her, and they
gave her the butterflies that she
read about in fashion magazines
she would steal from her sister. Bile
would creep up her throat, and she
would swallow it back down. She
knew these butterflies and this
bile were preferable to the boys at
school who mocked her round face,
who poked fun at her dispropor-
tionately large forehead and who
thought that calling her “bok choy”
was a streak of comedic genius. But
Diana was patient; she was confi-
dent she would grow to look like
her mother, beautiful and soft and
loved.
Once, she had borrowed her
father’s laptop without asking and
found his bookmarks. She scrolled
through videos of women who
looked like her mother, women
who looked like herself and her
sister, smooth-skinned and dark-
haired and eyes-lidded. Diana
wondered if her body would ever
look like theirs, pale and bare and
firm and wanted. She was old
enough to know what sex was,
but she hadn’t known that sex
looked like this. Violent and sud-
den and one-sided — hair-pulled,
legs-thrown, screaming and cry-
ing and thrashing and begging and
messy; why was sex so messy? The
names of the videos read ASIAN in
every title, always accompanied by
petite, submissive, hungry, desper-
ate, willing, teen, eager.
CLAIRE GALLAGHER
MiC Columnist
A body or a cage
As a child, I used to think that
the human body had a limited
supply of skin. After seeing pic-
tures of skin layers in a first-grade
textbook, I thought that every
time I scraped my knees on the
pavement a different layer of skin
was revealed. I used to ask myself
all sorts of questions. What would
happen when I reached the last
layer? Was it just one thin sheet
of skin holding muscle, sinew and
bone together? After that, would
I finally unravel? The image of
flesh escaping skinless gaps in
my body made me develop a deep
fear of falling and tearing my
skin. I started living my life with
my head down, carefully watch-
ing the cracks of the road, mak-
ing sure I didn’t take a wrong
step. Regardless of my caution,
I still fell and fell often. Being so
young, I just laughed it off and
became known as the clumsy kid.
As time went on, I continued fall-
ing, started struggling with basic
movements and injuring myself a
lot more. Eventually, my doctors
realized that my health was being
compromised by more than mere
clumsiness.
At the age of five, I was diag-
nosed with hypotonia, a condition
of low muscle tone that affects my
large motor skills and makes cer-
tain bodily functions harder. I can
walk and function at a basic level,
but everything is paired with
extreme fatigue and constant
pain. For most of my childhood,
I understood my differences, and
quite frankly, I wasn’t ashamed
of them. When I moved to India
for four years (from ages 9 to 13), I
played sports for hours and hours
with my friends in the tropi-
cal heat. I got laughed at and we
joked around about my rather
obvious lack of athletic ability —
but throughout it all, I was never
embarrassed. While it was a lot
harder for me to explain my dis-
ability in India (considering the
societal habit of ignoring hard-to-
describe circumstances), I always
found it easier to simply live a
normal life.
I was growing up in a country
where politeness didn’t live up to
western standards and unsettling
directness was more common.
Living in India made me develop
incredibly thick skin, because if
I did not display a certain level
of confidence, I would have been
trampled over by rude comments
very easily. Even when people had
something to say about my dis-
order, I was confident enough to
shut it down right then and there
(with my freshly developed set of
Hindi curse words, of course). It
wasn’t until I moved back to the
states that I understood that feel-
ing embarrassed is a consequence
of Western societal norms. In
India, I mostly experienced dif-
ferentiation to my face so it was
easier to respond to compared
to the more implicit attitudes I
observed from people in the Unit-
ed States. While humiliation may
not seem like something cultur-
ally unique, it certainly felt that
way to me when I experienced the
subtleties of ostracism instead of
the direct remarks I was accus-
tomed to.
As I grew up, my need to pro-
tect myself started manifesting
differently. Instead of hiding my
weakness by pretending it didn’t
exist, I projected a cold exterior
so people wouldn’t believe that
any debility was even plausible.
“She could probably beat you
the fuck up, Danny”
In a high school game of Para-
noia with 10 other guys, they
somehow all decided that I was
most likely to fight someone — and
win. This type of interaction was
hardly uncommon for me. Maybe
in my fear of being seen as weak,
I started to project some strength
that I simply did not possess. Or
maybe I like to think that I had
any control over how I was per-
ceived. The dissonance between
my internal identity and external
perception makes me feel quite
like a little girl playing dress up in
her mother’s adult clothes. I patch
wounds from my childhood with
this desperate excuse of maturity
because I never got the chance to
heal.
It wasn’t until my senior year
of high school that my doctor told
me hypotonia is only a symptom of
an actual disorder, which meant
that I had lived 18 years having no
idea what was actually “wrong”
with me. After a series of tests
in 2021, I was diagnosed with
ADSSL 1 Myopathy, a mutation of
the ADSSL1 gene. Unsurprisingly,
this disease is unfamiliar to most
people because it is an ultra-rare
muscular disorder that also hap-
pens to be progressive. After 19
years of living with an unnamed
burden, I was told that there was
a chance I could lose my mobility
and any vision of my future life.
When my parents told me about
my diagnosis, they also told me
about their grand plan to find
treatment. Since my brother has
the same disorder and his symp-
toms were progressing faster than
mine, my family had a valid rea-
son for being concerned. Despite
the rationality of their treatment
plan, my first instinct was to tell
them that I wanted nothing to do
with it. I was sitting at the kitch-
en table the morning after my
flight from Ann Arbor and was
somehow being bombarded with
this plan for a foundation, gene
therapy and fundraising efforts.
Their plan relied on going out to
the world with my “story,” but
just the mere thought of seem-
ingly having to grovel for pity
disgusted me. I had spent those
prior three months entering my
college life and developed unbri-
dled ambitions and hope. That all
changed after a five-hour flight
and, expectedly, I couldn’t really
process anything, so I decided
to distance myself from it com-
pletely.
I spent my Thanksgiving break
driving to one hospital after
another. Despite knowing that my
parents were doing all of this for
me, I started to hate everything
about it. I didn’t want to talk about
what was wrong with me because
then I would have to actually
admit that there was something
wrong in the first place. When
things go wrong in my life, I
choose to fold those thoughts and
memories neatly into far-to-reach
compartments in my mind. Talk-
ing about my disease unwinds
all that ordered chaos until there
isn’t any order, just simple chaos.
The last thing I wanted to think
about was my body. The body of a
woman, a brown woman, a brown
disabled woman. Using the word
disability seemed unimaginable
at the time because it literally sig-
nifies the lack of something, and
I liked to pretend that I lacked
nothing in my life.
Ever
since
my
diagnosis,
this disorder has consumed my
parents’ lives. On top of their
full-time jobs, they started a non-
profit, found a research team
and met dozens of scientists on
a daily basis. Yet when I had to
hear about it on every phone call
with them, somehow I only felt
annoyed. I was annoyed by how
much their efforts had grown
and by how much more I would
have to think about it. I was even
more annoyed that I knew my
anger was misplaced because my
parents were pushing themselves
for my brother’s and my sake.
Slowly, it became an ever-present
thought in my head. Walking to
class, I would constantly wonder
if I walked strangely. Going up
the stairs, I would lower my head
because I didn’t want anyone to
see my face flush bright red. I was
embarrassed and exhausted by
my life being devoured as both my
mind and body corroded.
[Although I am fatigued when
working with my family and
professionals, I would like to
recognize the privilege I have
to explore possible treatment
options, since this isn’t the real-
ity for many disabled individuals.
My experience with disability has
been impacted by my privilege
and access to resources, which is
not an accurate reflection of other
experiences those with disabili-
ties share.]
The feeling of not being able
to have any control over my body
started to make life seem mean-
ingless. Constantly wondering if
my muscle would freeze up at any
given moment and if so, would
anyone around notice? My broth-
er encouraged me to be upfront
with other people in my life; I
didn’t know how to tell him that
was impossible for me. I was sup-
posed to be confident and fearless
for everyone else’s sake. All of that
would crumble if people found
a reason to pity me. I have spent
20 years now building this person
— someone named Shania, some-
one I know intimately, someone
with handpicked traits created to
appear unfazed by the world. She
is my exterior, a strong one at that,
but if you get close enough you
can see the cracks that look in on
me — someone I don’t want to be.
I may use the past tense to dis-
cuss these feelings, but in reality,
I still feel all of this today. Fear,
humiliation and frustration exist
every moment of my life. I’ve
only gotten better at pretending
it doesn’t. I don’t have a solution,
but I’m motivated to search for
one. The pain I see in my fam-
ily motivates me to find a reason
to accept my situation, because
changing it would be harder than
making my peace.
My journey to accepting my
disability exemplifies the need for
larger discourse around the inter-
sectional implications of disabil-
ity. The conversation regarding
intersectional identities through
the lens of disability is lacking.
Part of that is because it’s hard
for a lot of people, myself includ-
ed, to even realize the intersec-
tional implications of having a
disability.
Deconstructing
our
social impressions of disability
as a monolith is the first step to
destigmatizing our experiences.
I would like to believe that reduc-
ing the association of weakness
with a disability is how we begin
widening social spaces for dis-
abled people. My own experience
with struggling to be perceived as
weak demonstrates just a small
example of this.
I haven’t found a way to dis-
rupt this association because I
still live thinking that I am weak
every day. What I can offer is a
perspective; an experience that
is raw, slightly unhinged, but all
the while authentic. I don’t have a
way to beautify my life or present
a final conclusion to my mental
hardships. However, realistically,
that’s the struggle of internal-
ized stigma. It isn’t pretty and
it doesn’t end, but I hope that at
some point I can coexist with my
disability without being entirely
consumed by it.
SHANIA BAWEJA
MiC Columnist
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