The Michigan Daily — michigandaily.com
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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