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Gambling in Nevada

“But our trip was different. It was a classic affirmation of everything right and
true and decent in the national character. It was a gross, physical salute to the
fantastic possibilities of life in this country-but only for those with true grit.
And we were chock full of that.”

― Hunter S. Thompson, Fear and Loathing in Las Vegas

I was only two and a half years old when we arrived in America. I

have some memories about first going to America. I remembered it was still a

little bit dark. I was wearing my Powerpuff Girls sack backpack. There were a

lot of people as we walked towards the TSA. I clung to my mother’s hand

tightly because I was afraid I would lose her in the crowd—losing the only

people I ever knew. Even at around dawn, the airport was full of people.

It is here that I believe that my sense of identity and displacement

emerged.

My fundamental years were heavily influenced by instability brought

by growing up in America. The sudden departure of my family and I to the

United States and the following years to come in which we transferred from

Nevada to San Francisco and then finally settled to Walnut Creek only to be

brought back in the Philippines. Like many immigrants who came to the US,

my parents and I arrived there in hopes of finding greener pastures—a better

life for our family.

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In Mark Freeman mentions in his book entitled “Rewriting The Self:

History, Memory, And Narrative”, recollections are subjected to “countless

distortions and falsifications” since our lives cannot be replicated. When

searching for a reason as to why we even arrived in America to begin, it

always goes back to my father’s job in Dole Philippines Inc. The controller

from the main office in Westlake, California had arrived at my father’s office.

The controller announced that their Honduras and Mexico Dole sister

companies were hit by a terrible hurricane which caused thousands of

employees to lose their jobs in the area. In order of supporting their sister

companies in Central America, the controller decided that the company had

to terminate some employees in Dole Philippines. And because of this, my

father decided that our family should go to America. With the help of John

Yap, my father’s boss and long-time friend, my father was able to get a US

tourist visa for our family which allowed us to stay in America for ten years.

When recalling the first time we stepped on America’s soil, I

remembered my parents and I were at the Transportation Security

Association (TSA) in the airport. My father feared that we might be deported

back to the Philippines because we were stopped by the officers inspecting

our baggage. The TSA officer was big African-American, with a deep voice

which intimidated my father. The TSA officer didn’t waste time and

immediately interrogated my father—as he checked our bags—as to why my

father didn’t bring his family to America last time he was there. For my

father, it was already a point of no return. No job was waiting for us in the
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Philippines if ever we got deported right there and then. At that time, the

Philippines economy was volatile due to the continuous Asian Crisis shocks

during then-president Estrada’s administration. It didn’t help that under

Estrada’s administration the government was known to mismanagement

funds and “Midnight cabinets” lead to great economic instability at that time.

Other than the economic unrest in the Philippines, my parents were

worried that if we ever did end up deported, maybe they couldn’t offer me a

good life which they wanted me for. The humiliation would be too much, my

father once mentioned when I asked him how he felt about being deported.

Understandably my father’s distress was caused by his thoughts of how

embarrassing it would be to go back to the Philippines without first

accomplishing anything in America. If we were to return, it was as if we had

gambled 200,000 pesos on a pointless ambition for our American Dream.

Fortunately, my father quickly told the TSA officer at that time he was

on a business trip and after his business meeting with Dole; he visited various

theme parks like Disneyland. My father felt bad that my mother and I

couldn’t come with him, which is why we were having our vacation in

America. The TSA officer believed him and told me to enjoy the rides at

Disneyland before letting us go.

I was very young when we first arrived in America that I first recalled

that we landed at the San Francisco Airport. But in reality, our plane actually

landed in Nevada. Whenever our relatives look at the first photo my family

and took in America if the snow in the background picture is artificial.

Because who would wear casual outfits fit for summer when clearly it looked
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like winter. Spring had just started, and so the snow was still melting. We

were so eager to have a remembrance of our first time, stepping foot in

America, that we immediately took the picture on the spot. It’s sad to say that

this was our first and last encounter with the snow. Where we were heading,

it only had frost in the winter. Despite this, the touch of snow was cold like

shaved ice but lighter, softer, and more magical. Even my father and mother

were smiling uncontrollably at its sight. I don’t know if it’s the media’s

portrayal of snow as a charming occurring phenomenon in the winter, but I

remembered fondly throwing a snowball at my father before he returned the

gesture.
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What remained of our time in Nevada are now foggy memories

preserved in photographs—the extravagant aspect of a mere moment—

enjoying a brief encounter with our greener pasture.

It just fitted perfectly that the first place we landed in America was at

the gambling capital. We enjoyed our visit to Nevada especially at night when

the glamorous lifestyle of America was made more visible. The neon lights

from hotels and casinos covered the streets with artificial rays that surpassed

even the stars above. We were amongst the crowd of average citizens, the

wealthy, and the glamorous Hollywood stars. The streets were packed with

people. Some were making a living wearing scanty peacock like outfits taking

photos with a tourist while at the same time enticing them to a gamble in their

casinos. Others were lonely men and women trying to make a fortune with a

couple of bucks they earned for the day. But everyone, including my family

and me, was in a trance with what this city in a desert had to offer, and in a

way glimpse of what America could offer. We had taken a picture with a

woman wearing something worn in the 1800s. We gave the lady in fancy

clothing a tip before my parents and I went back to the hotel.

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But like any couple adjusting into their relationship, the honeymoon

phase was over. Our journey was now to head back to West Coast where, just

like many before us, who came to seek their fortune in the Wild, Wild West of

California. Instead of gold, however, we sought out our relatives, new jobs,

and a new home. From then on begun our travel across California, in which

we stayed in San Francisco at first, where my mother’s relatives provided my

parents a job and a place to stay. However, despite being provided with a job

—despite living in a garage, our accommodation wasn’t for free and had to

rent it for $300 a month. We were, however, allowed to have rest days and so

my parents and I took the opportunity to explore San Francisco. Every

weekend, my family and I would commute on the subway all towards the

heart of the bay area.

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From there we would take a ride in the cable car towards the San

Francisco’s park. We just loved visiting the park, especially on a beautiful

sunny day. I would play with the other children while my father would be

taking pictures of the scenery. Of all the places that we have stayed in

California, my father really loves San Francisco because its temperature isn’t

extremely cold or hot. The buildings are all stunning. It didn’t help that when

we arrived in the Bay Area, spring had just started making the usual bleak

atmosphere of the city more and more vibrant.

After a couple of months of working form my mother’s relatives, my

parents decided to find work somewhere else. That was when my mother was

able to find work for Bruce Sharkey, an elderly man living by himself in

Sacramento. Bruce was a very patriotic man, well that was what I
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remembered of him because in front of his house was where the flag of

America was dangling from a pole. The daughter and son-in-law of Bruce

were very kind in allowing us to stay with Bruce’s house while my parents

took care of him. Bruce’s grandson and I became close friends despite the

language barriers. Bruce’s grandson would come and visit me and his

grandpa every day so that we could play. While every night, right before my

mother would bring Bruce back to his room, I would salute him and say

“congratulations,” after which I would shake his hand, Bruce would salute

me back often times salute me back. He asked my mother if she was the one

who taught me to salute to him, which she said didn’t. At that time, I saluted

him every night because I thought it was the right thing to do seeing that

Bruce was a former US soldier. I saw a soldier on TV do it, so I thought I

should, too.
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I really thought that would be our home forever, but eventually, Bruce

died. I was too young to understand death and since everyone said he was

going to a better place, I made him letter that contained a bunch of drawings.

Bruce had an amputated leg which never bothered me as a child. But now

that think about it, he must have lost his leg in a war. After Bruce was

cremated, my parents were able to find another job. This time at a care homes

facility for the elderly in Walnut Creek, California. Before we left the Sharkey

family, Bruce’s daughter gave my mother a hundred dollars and thanked my

parents for making her father’s last few days enjoyable for him.

At Walnut Creek, California, the care home facility there became the

place where my mother and father learned the ropes in being a caregiver. My

parents took care of the elderly twenty-four hours a day, six days in a week

with one day off. Each elderly person had their own quirk and personal

backgrounds. There was Jack Douglas former FBI agent who experienced the

death of his whole family due to his line of work, which is why the other

caregivers explained that of all elderly in the facility, Jack didn’t trust people

immediately. My father’s relation with Jack is a complicated one. For starters,

Jack has this weird habit of waking up in the middle of the night and causing

noise which causes the other elderly to walk up in turn. My father,

sometimes, out of sleep-deprivation and frustration would yell and painfully

pinch his stomach. Like a child, Jack cried to my father what did do? In

which my father would reprimand him for causing chaos at 3AM while

everyone is as sleep. Jack would then say: “Sorry, papa.” Despite, the
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spanking and hard pinches that Jack would receive from my father for either

stirring up trouble in early dawn or causing a mess, Jack would always look

for my father. When my father would be on his day-off either to the movies or

to the mall, Jack would ask: “Where is Papa?”

My father said that he always felt bad for physically hurting a ninety-

year-old man. The stress from taking care of the care home facility was

sometimes too much for him. IT wasn’t only Jack who would cause problems.

There was this particular elderly woman who would dial up 9-1-1 and request

for the police because there was a killer in her house. Every time the police

arrived, my father would then present the elderly lady’s medical files. This

elderly lady turned out to have Alzheimer’s disease which explained her

delusion. Despite working round the clock, my parents worked hard in trying

to provide the elderly with the optimal care they needed. The cleaned the care

homes, prepared dinner, do the laundry, and provide companionship to the

elderly who resided there. Most of the time, no one would visit the elderly

made me sad. Despite being old, they once served society. Now, here they
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were—obscured individuals seeking out whatever relationships they could

create.

After some years of working for Emerito, my parents were finally

given the opportunity to have a vacation. And so, my family and I had our

vacation in Las Angeles and Las Vegas. It was strange to find ourselves back

again to the city in the desert. I was now a bit older and yet, the buildings, the

casinos, the hotels, and people somehow remained the same. We were now

again tourists indulging into Nevada’s excess. Nevada was in every way

extravagant from the idea of a city sprouting out of the desert. The neon lights

still cascaded the streets at night and here we were again amongst tourists

from all over the world seeking out some sort of stimulation from the

mundane. Was this how our life was supposed to be—work hard, vacation,

repeat? In casinos, the drinks are unlimited; all you have to do is just keep

playing. The idea is the more you play, the more chances of hitting it big and

maybe you’ll go home rich. I was left unattended at our suite to watch

whatever I wanted through On-Demand, which was like cable but you pay-

per-view like a movie or a channel. My parents were downstairs playing 10

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cent and 25 cent slot machines. They were smart enough to gamble with cents

instead of dollars which they earned from toiling in the care homes day in

and day out.

When they got back to our suite losing $20 each to a lottery, my parents

found me asleep with the TV on. On the screen, it said: 3 Films Were

Purchased For Entertainment. My parents when they saw the sign were

panicking that maybe I saw pornography or R-rated while they were away.

This place was after all Vegas, debauchery was all too common. When they

called the hotel’s operator and asked what kind of films did I watched, the

operator explained that three documentaries were purchased which costs all

in all $30. The next day my father asked me about what kind of

documentaries did I watched. I replied about the animals. While we had

breakfast in bed, my mother asked if I liked Nevada.

“This place is pretty but,” I said. “I miss home. I want to go back

home.”

“So you don’t want to stay here like this will be our new home?” My

father asked.

“Nope,” I replied. “I’ll miss all my friends like Prathamesh, Gayatri,

and Christina.”

Despite only six years old, when we returned back to Nevada, I

enjoyed those sights and food. I wasn’t able to meet the other kids during the

whole trip. While going around the city with my parents, I noticed the faces

on the people that passed by. While some were having a great time, I saw

quite a lot of people who were either too drunk or looked miserable. Under
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the glow of flashy lights and neon signs that were scattered across the city,

those with a miserable face that passed by were like a blurry or shadowy

figure that haunted the streets. Behind the glitz and glamour of the city, I

could feel the animosity, the loneliness; it was as if the city had now taken

over these faceless, downtrodden individuals. After our time in Nevada had

ended, we took a plane ticket back to Walnut Creek which didn’t have that

glamor like Nevada, but it didn’t need to be any more than what it was and

still is—the home where for almost five years we strived to make it ours.

This Land Was Never Ours

In kindergarten, I was taught how to recite “The Pledge of Allegiance”

and sing America’s national anthem, “Star Spangled Banner.” American

Patriotism was so important in public schools, that we were taught not to

think about what America could do for us. But instead we thought of what we

could do for America, as its citizens. “This Land is Your Land,” a folk song

about how America as a land of immigrants is made for everyone in America,

was my favorite song with very patriotic lines like:

This land is your land, this land is my land

From California to the New York Island
From the Redwood Forest to the Gulf Stream waters
This land was made for you and me.

I learned how to speak English because of the educational programs on

Television. My favorite show was A Reading Rainbow, which featured

Children’s books and encouraged children to read. Since my family and I

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constantly moved from one city to another, until I was six years old, I got my

education children’s educational programs like A Reading Rainbow, Magic

School Bus, and Animal Planet. It was only when my parents worked and

stayed at Walnut Creek care home facility they decided it was finally time for

me to go to school. My first teacher was Barbara, an elderly woman residing

at Walnut Creek residence, she taught me how to act properly in school and

say please and thank you. She taught me nursery songs and whenever she

noticed my hair grew long, she asked my mom to cut it short. Whenever my

mom asked why she preferred me having short hair, Barbara replied that I

looked cuter that way. Barbara would give me assignments like writing the

alphabet and numbers.

By the time I got into kindergarten, Barbara had already transferred to

another care home facility. It was also the time that we met Mida and her

family. Our days in class were spent in learning the phonics and counting

numbers. The public school where I went to was well equipped with seating

mats, crayons, pencils, and reading books donated by the children’s parents.
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During recess, all the kids took turns in playing with the donated bicycles and

tricycles around the playground. A teacher would help facilitate children by

making sure everybody followed the stop and go sign and everyone had a

turn with bikes. Sometimes when I got bored with the bikes, Prathamesh and

I would explore the plants found in our playground. Since our playground

was surrounded by a small forest, we would venture out into the woods

pretending to be explorers. The small forest was composed of tall oak trees.

Squirrels would run across the branches and every now and then we would

see Blue Jays chirping and perching above us. It was interesting to find this

much wild life in the middle of the city. There were wild raspberries growing

amongst the oak which we picked and ate.

Before summer vacation, we were toured around the grade school area.

I was excited to visit the school’s library only to realize that we weren’t

allowed to borrow the books. We were then paired up to a grade one student.

I got paired off to Amanda who politely answered all of my questions about

the teachers.

“I don’t know if I want to leave behind Kindergarten,” I told her.“What

if I don’t like grade school, what if I miss Steve, Ms. Mitchel, and Mr. Kim?”

“Don’t worry. You’ll like all the teachers in grade one, they’re all nice.”

She tried to reassure me. “And anyway, you can always visit the teachers at

the kindergarten since it’s not far away. Sometimes, change is good.”

Summer passed by very quickly, I wasn’t classmates with Prathamesh

and my new classroom was now filled with nineteen other people as

compared to previously ten people in one room. Adjusting to new classmates,

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to a new system, and a larger area where we were slowly integrated with the

collective elementary student body of Buena Vista. I always thought I was in

control. I’ll always have my way. Because my family and I would transfer

from place to another, I used to think as something bad. I was yearning for

some sort of foundation, something that I could cherish and make it last.

It was at this time that I met Christina Vanderpan a sarcastic blonde-

haired blue-eyed girl who acted like a spoiled brat but was the most honest

person I have ever met. We became best friends on a field trip in Larkey Park,

a large open area with a jungle gym, picnic tables and benches, and large

beautiful pond. While I was playing with the other kids hide and seek, I hid

under the jungle gym where barely anyone ever goes to. I saw her by herself

digging on the sand.

“Hey, do you want to play with us?” I asked.

She didn’t look up at me and said no one really liked her. I asked her if

she wanted to be friends with me. From then on, we became best friends and

we would go to each other’s houses to hang out and have sleepovers. Since
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Christina’s mom was a corporate lawyer, she wasn’t usually at home and

Christina’s only company was her Filipina nanny named, Juliet.

Juliet, despite being a Filipino, forgot how to speak and understand

our native language. She didn’t have any means of contacting her relatives

who lived in Laguna, and because she didn’t have a close relationship with

her family, she forgot her mother tongue.

“Are you bothered that you haven’t contacted your relatives in over

more than a decade?” I heard my father asked Juliet.

“No, not really,” Juliet replied. “If I’m being honest, I don’t want to

contact them,”

Juliet was married to a Dutchman named Jack. They both lived at a

trailer park where they had a large koi fishpond. When asked if she ever

misses the Philippines, Juliet gave a sad smile and said she loved it here in

America why would she miss the Philippines. She was the first Filipino, I

heard, to openly admit that they would rather stay in America than living in

the Philippines. I always wondered why she didn’t like talking about her

experiences in her hometown. I think she and her family had a rough
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relationship which made her more determine to leave the country. We had

the same heritage but unlike her, I wanted to know more about the

Philippines. As a nanny, Julie would pick up Christina from school driver her

to karate class, ballet, and local arts and crafts club. Christina was the only

child, raised by a single mother who was a very busy corporate lawyer. She

was a sperm donor baby with a congenital heart problem, her mother told me

that the doctors didn’t think Christina would live. Christina’s mom held her

close and within a day, Christina’s vital signs stabilized. I think that’s why

Christina’s mom spoiled her with anything she wanted.

Christina loved being sarcastic and talked with blunt honesty what she

felt. Every time I was with her I felt free to speak whatever was on my mind

without thinking if it was hurtful or if it made any sense. She told people off if

she didn’t like them which was why not a lot of people liked her. I learned to

think before I speak after a red-haired girl in my class named Daniel told me

that the upcoming United Nations Day she was going to showcase her Irish

heritage. I later found out from my classmates that she wasn’t really Irish, but

was from Boston. I asked her why she lied about being Irish even though she

wasn’t. Daniel cried as she ran away from me. I told my father what

happened when I came home from school. He looked at me disappointedly.

“You hurt her feelings because being Irish was what her parents told

her. She believed she’s Irish and being Irish is a part of who she is,” My father

said. “What if I told you weren’t Filipino even though you are. How you

would feel?”
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I didn’t reply. I knew how it felt to feel confused of your nationality.I

was born in the Philippines but raised in America. The very fact that I’m

Filipino and yet, feel like I don’t feel like I’m a real Filipino is

frustrating.Instead I just explained to my father why Daniel and I discussed

nationality because in a week from now I had to present a booth about the

Philippines. In our room, we had a map of the Philippines with all the

national fruits, animals, clothing, and dances illustrated on the side of the

embroidered map. Since Filipiniana cost a fortune in America, I didn’t wear

my traditional garb. We also had to bring a national dish to United Nations’

Day, I really thought we were going to present AdobongManok or Lechon.

But instead, my parents and I made Pancit Malabon because AdobongManok

was too common and preparing Lechon was too expensive. I borrowed books

from our school’s library and researched the facts about the Philippines. As a

family, we made a small makeshift exhibit for the Philippines for United

Nations Day.

A day after I made Daniel cry, I asked for her forgiveness. Just like her,

our parents' stories and beliefs about our families and heritage was something

we took great pride in. We were just kids trying to build an image of

ourselves based from the nationality our parents wanted us to be a part of

and often we had to navigate in a multicultural American society. I really

thought I was a Filipino-American and she thought she was Irish-American. I

guess we were both wrong and right at the same time. Usually children don’t

bother over race and ethnicity. Oddly enough me and Daniel took our

heritage very seriously.

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On the television, most of the documentaries were about the United

Nation and about World War Two. The documentaries only mention, the

bombing of Pearl Harbor and never mentioning anything about America

occupying the Philippines or how the Philippines was in the crossfire between

America and Japan. I had asked my father once why the Philippines didn’t

become part of America like Hawaii. He explained that our ancestors wanted

to become independent. Somehow I just took his answer as it was, but I

wished things could have been different. But it still felt wrong, I was reciting

pledges to what was supposed to be the enemy, the colonizer who took our

freedom. My best friend was an American for crying out loud!

The more I wanted to know about myself through leaning about the

Philippines, the more I became confused. I had read the only book in our

school library about the Philippines and the information just flew right

through me with words like “social political class,” “primarily an agricultural

country,” and “precolonial beliefs tied to Roman Catholicism” when I tried to

read an over view what the Philippines is like. I understood parts of it but I
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still didn’t understand why should there be a distinction of race and

ethnicity? I would constantly ask why couldn’t the rest of the world’s nations

have no borders and just get along. Looking back on my questions why I was

7 years old, it was naïve of me to presume that conflict can be resolved

through civil means.

It was only when I returned to the Philippines and learned the painful

truths of class division and socio-political problems from our past and

present; I finally understood why there was something to be proud in

opposing US colonialism.

When I was in grade two, I borrowed again the book about of the

Philippines, the number of indigenous people and languages, and the

statistics of those in poverty and progress throughout the country. My parents

told me that we were returning about the Philippines. I wanted to be

prepared about Philippine history and the socio-political situation of the

country. My father had always complained about how poor Philippines is.

After reading the book, I realized that majority of the population were made

of the middle class and really thought the Philippines was something like

Hawaii. Even though I saw the statistics and read everything about the

Philippines, I thought I would be prepared to go back to the Philippines

oneday. But when I returned to the Philippines in grade three, I wasn’t

prepared for the heat and how things go about.

Even though the Philippines consisted of an ethnically homogenous or

similar ethnic background population, my country was heavily divided.

During Lingo ng Wika, Kadayawan, and United Nations’ day the cultural
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heritage of the Philippines or an indigenous group were either ostracized or

exoticized in which the cultural clothing of a group is only good for pageants

and just lovely clothing. No one really bothered to look into the historical and

cultural aspect of the nation or indigenous group they are representing.

The artificial aspect of appreciating diversity and ethnicity

disillusioned my childish dreams of the Philippines as a progressive nation.

Grade three in Stella Maris, we were assigned to countries during United

Nations’ day and would research about the assigned nation. If you had the

money, you could tailor the cultural attire from the country. We made our

flags for the sake of making them and not because we cared about the

country. All the while we made our makeshift presentations to class. I

couldn’t help but remember we celebrated October 24 in America.

The event was always held at night in our public school’s gym. Every

family brought their nation’s cultural food and delicacy. A lot of students and

their parents were wearing their country’s cultural clothing. At the center of

the gym was a long table where all the food was placed. The flags of all

nations were hung above us like banderitas. Whenever people came to the

small booth my family and I made for the Philippines, they would ask where

the Philippines was located and what food did we brought to the event. I was

nervous because Pancit Malabon looked more like aChinese food. It was bad

enough I was wearing Indian traditional clothing.

My anxiety was killing me especially with the thought of being called a

fraud, a loser who was by blood Filipino but absolutely clueless about the
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Filipino culture. Despite how negative my thoughts were a lot of people

complimented the meal and said they will try more Filipino food. I felt like a

cross-breed despite being genetically fully Filipino. Hybridity, according

postcolonial theorist Homi Bhabha, it is the result of two opposing views or

cultures that leads a splitting of identity. Since the mere fact that I was

brought up in America, I cannot deny that a party of my identity has always

been based from imitating the colonizer. Some habits die hard, and sometimes

I still think I could never be a ‘real Filipino’— a person who could speak their

mother tongue fluently with ease, a Filipino comfortable in their own skin,

their own culture and heritage. But with this day age, I doubt I’m the only one

dealing with the alienating aspect of cultural hybridity.

At the end of the program, we would all gather and sing: “This Land is Your

Land.” In a brief moment, I would forget that I was the odd one with no

nation, no identity, and no permanent home. I was now one with the children

of the world—beyond borders, television, and books, clashing cultures and

beliefs—celebrating humanity through friendship. I would never think of

leaving America because my parents had planned in living in America for

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good. Maybe, I would be one of those Filipino-Americans who would pledge

their allegiance to America during the ceremony when we finally got our

Green Cards. But for children, just like my classmates and I who celebrated

United Nations at Buena Vista—multiculturalism, even though we didn’t

know what it meant, was a part of us. Our loyalty didn’t reside to the land in

which we stood but rather to the people we cared, the people who molded us

to be who we are.

Shell Catching In The Waves

“I remembered all my brothers and their bitter fight for a place in the sun,
their tragic fear that they might not live long enough to contribute something
vital to the world. I remembered my own swift and dangerous life in
America. And I cried, recalling all the years that had come and gone, but my
remembrance gave me a strange courage and the vision of a better life.”
― Carlos Bulosan, America Is in the Heart: A Personal History

When my father was a child growing up in Lianga, Surigao, a fleet of

colorful ships approached the bay. Everyone from his village was worried

that pirates had arrived at their small community in order to pillage and steal

whatever little valuables they had. A lot of the men from their village had

experienced being raided by pirates as they went out fishing at the edge of

Philippine’s economic zone. Oddly enough, for days, the fleet just kept their

distance which prompted one man from their village to ride his small

motorboat towards the strangely colorful ships. After communicating with

the people living on the boat, the man returned informing the village that the
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fleet wasn’t run by pirates but was owned by Sama Dilaut who only wanted

to barter their fish for water and rice. The villagers were more than happy to

barter with them seeing their fish be fresh and abundant. This was one of the

many stories that my father would tell me as I grew up in America.

My father would fondly describe himself and his friends as a

rambunctious bunch. The sea was their backyard and every day as they

readied for school, they would a take bath in the ocean. When they dried up,

bits of dried salt and sand marked their skin. The other kids in class would

tease them but what else they could do, they couldn’t afford to waste clear,

drinking water for baths. But despite their poverty, my father was a constant

honor student from elementary up to high school. During class, however,

Lola Simple—his mother—would come to his school asking the teachers if

they wanted to buy some fish. The other kids in his class would make fun of

him by saying: “Aren’t you ashamed? Your mother comes here selling fish

while we’re having our class.”

“I’m not ashamed at least my mother is working hard for our family,”

my father would reply. “Your mothers are gamblers, wasting away money.”

His teachers would buy his mother’s fish whenever she came by. I

think they just pitied her, the widow with eight children. Lola Simple’s eldest

sons—Manoy Remy, Tiyo Rick, and Titi Paul had stopped going to school in

order to provide for the family. Many of the teachers felt that out of the three,

Manoy Remy had so much potential—only for it to be wasted working at the

Lianga Bay Logging Company. The company was run and owned by

Americans. Sometimes, my father and the other children would see one of the
 HERUELA | 26

Americans and follow the white man around. They called them Joe and

would ask for candy and treats. As embarrassing as he admits, when he was a

boy, he always saw the Americans with awe—as if they were gods walking

among people. I sometimes wonder if the Joes they met were really

kindhearted because it seems to this day; my father has pleasant memories of

the foreigners, who took advantage of their land by clearing their forests.

Were the Americans just humoring them since there wasn’t much else they

could do in an underdeveloped town in Mindanao? Maybe, but it amuses and

bothers me that my father’s naivety would see the colonizers as gods. I

wonder if unconsciously my father picked America because of how much he

admired the Americans who indulged their little requests.

“You know what you can constantly find in the house of your Lola

Simple?” My father asked, one time, which I shook my head not what it was.

“Whether she’s in Dapitan, in Bohol, or in Surigao, Lola Simple always

has this chandelier like an ornament made entirely of small shells,” he said

with amusement. “I don’t even know why she always has it with her. For

good luck maybe? But if you look at it, you must wonder how long it must

have taken for the person to painstakingly weave bit by bit the shells to form

it. The craftsmanship of the person to able to do so is amazing.”

The livelihood of the people living in Surigao was always dictated by

the winds and the weather that occurred at sea. The foundation of my father’s

high school education was built on fisheries and aquatic life as means of

providing them income. Some days, he and others would scavenge the shores
 HERUELA | 27

for kinasons and other edible creatures that were found the shallow, tide pools

during low tide. When he was a boy the waters used to be abundant with fish,

my father once told me. You could use a net and just go to the shores, and

you’ll be able to get a lot of fish. But he sadly recalled that by the time he was

in high school, catching fish became harder which lead to some of the

fishermen to resort into dynamite fishing.

“Buwis buhay ang pagpanagat,” my father often said.

When the monsoon season comes, his family prays that the storms and

hurricanes that would visit their village every year will not destroy their

house. Often times, after the storm has ceased, their roofs were blown away

leaving them exposed to the cold and heat. Catching fish during the monsoon

is always impossible to do so during this season. Some have tried to fish while

the waves are violent and unpredictable, which has claimed numerous lives

over the years. Despite Surigao’s beautiful waters and islands, the danger is

rampant—children who have swum all their life would suddenly end up

drowning or perfectly good weather could suddenly brew up a storm leading

some fishermen missing or dead. There was a savage side to the paradise-like

aspect of Surigao, even for seasoned fishermen, you could never know what

the ocean will bring you.

After one particular storm, my father’s neighbor, a shell collector, was

scavenging for seashells to sell off to a shell trader when he stumbled upon

something shining on the sand. Upon further inspection, my father’s neighbor

discovered a strange cone shell that was color gold with beautiful patterns

that he then presents to the shell trader. After examining his book of different
 HERUELA | 28

types of shells, the shell trader then gave hundreds of pesos, which was a

large sum of money at the time of Marcos, in order to buy the shell off of the

scavenger. When the whole village heard of this story, the town’s folk

frantically started looking for the expensive shell on the shore. The shell that

the scavenger found was later identified as a Gloria Maris that are Latin

words meaning “Glory of the Sea.” I had read about the shell in America and

asked my father if he ever saw this famous seashell to which he told me of

this peculiar incident.

I call it peculiar because despite being known as somewhat rare, what

made this shell expensive is due to a false rumor the species is very rare. But

in recent years the rumor died down as the rarity of the shell has been put

into question due to the access of scuba gears which some of the users have

mentioned that despite the shell being endemic, it didn’t appear to be

vanishing. I read an article that around 1960s to 1970s, especially in the

Philippines, the rumors of Gloria Maris being a rare and expensive seashell

had led to an auction worth $2,000. When scuba diving gear became widely

available to the public however, it was discovered that several hundreds of

this type of shell could be found in the coasts of the British Solomon Islands.

For many years seashells have been used as a way of creating trinkets

and ornaments. Some of the shells were fused together to form figurines that

the locals would sell to tourists. Kinason, which was a type of shell they

scavenged for food, was often used in creating the shell chandelier like

ornaments found in my grandmother’s house.

 HERUELA | 29

But of all the shells found in Surigao—the Puka shells were highly

valuable which had created an industry of its own due to the fact foreigners

particularly Americas loved it.

Every summer, the poor families from my father’s town would be

taken to the outskirts of Britainia known as Turtle Island. There they would

gather puka shells that were to be bought and resold by one of the well-off

families in their area until it would be exported abroad. All of them, from the

eldest to the youngest, were tasked of running towards the large waves in

which they would wait for the waves crashing into them. The waves brought

with them the small, fine shells that the children try to catch into their

mosquito nets while at the same time, trying not to lose them with the very

waves that brought the Puka shells to them in the first place. The children

would then scamper off, far from the waves and carefully select their tiny

treasure before heading back to the large waves that came from the Pacific

Ocean. They would then repeat this process several times as a day throughout

their summer.

While the children took care of gathering the Puka shells, their mothers

were in charge of gathering kinasons, or whatever edible sea creature they

could find for their children. Sometimes, out of tiredness and hunger, the

children would lay on the sandy shores under the glaring sun—not minding

the splashes of water that would then resoak their bodies as their clothes

began to dry off. I have heard this story from my father several times, and I

can say that despite how he saw his summer experience as something

enjoyable I cannot help but noticed how they were exploited. While my father
 HERUELA | 30

and his family were working hard in gathering Puka shells the wealthy

families exploited them. They weren’t properly compensated since a sack of

rice was their payment for working hard under the sun. I somehow felt that

they had no choice in the matter of being brought out to an island which was

literally near the edge of Philippine’s coastal territory. As a widow, Lola

Simple saw their summer trips to go Puka shell scavenging as a way to feed

her family for the time being.

The Puka shells they gathered and placed in a sack—are then, by the

end of the summer, immediately shipped when they immediately set foot on

the shores of Lianga. As fishermen, the eldest of their family—Manoy Remy,

Tiyo Rick, and Titi Paul, were primarily in charge of catching the fish which

Lola Simple sell at the market.

But when Manoy Remy started working for the Lianga Bay Logging

Company, someone else had to take his place. And because of this, my father

was tasked of his brothers in catching fish. Tiyo Rick, Titi Paul, and my father

were out one night to fish out for squid as it was only active during that time.

As the youngest, he was tasked of making sure the air pump was functioning

properly while they go looking for their catch. His task was crucial as his

brothers would have died if he wasn’t careful. With only their flashlights

under the ocean, they would signal him if they were receiving too little or too

much air. My father had to remain vigilant despite being afraid of being the

only one at the boat. The pump was powered by an engine that supplied them

with Snowbear scented air that covered up the smell of gasoline that seeped

into their air supply. It was during moments like this with his brothers,
 HERUELA | 31

working hard at sea, that he knew he had to study hard. He had to have a life

other than being fisherman. They were the ones who brought food to the table

to millions of Filipinos and yet, despite laboring under the sun—walang nag-

asenso sa pagpanagat.

When I was five years old, my parents and I were living in America.

During that time we settled at Emerito’s care home facility. Emerito was an

Ilokano who owned six care home facilities around Walnut Creek, California.

But compared to my mother’s relative’s care home facility, we didn’t rent the

garage where we stayed three hundred dollars. We stayed at one of the

vacant rooms within the facility.

In the previous care home facility that was run by my mother’s

relatives, I wasn’t allowed to get out of our rented garage. My parents would

constantly warn me that if I were to go out other than to go to the bathroom,

an inspector might show up and he caught me, I will be separated from my

parents. So I always stayed in my room. At nighttime just before going to be,

the stories of my father’s childhood always fascinated me.

By the time I arrived at Walnut Creek, I was already old enough to go

to school, my parents thought it would be a good idea to have me enrolled at

Buena Vista Elementary which a couple of kilometers away. We didn’t have a

car and so our only means of transportation was by bus but it had a strict

schedule. So my father bought a baby stroller in which he would have me

seated in it and would push the cart as fast as he could to school. When we
 HERUELA | 32

arrived at Buena Vista, my father would ask permission to leave my stroller

behind.

My school’s faculty was concerned that this was our only means of

transportation and so offered to connect my family with another Filipino

family that had a car. The suburbs where our care home was located was

known as a high-end area and so my public-school thought that this other

Filipino family would help us since they were only a couple of blocks away

from us. Even though this other Filipino family lived near where my family

and I, they didn’t want to associate themselves with us. I had a feeling that

they didn’t like us. You could never be too careful of who you trust out here.

Since I didn’t get any basic formal education like writing or numbers,

my teachers were afraid that I wouldn’t be able to catch up. After class, my

father would teach me how to write, read, and count. Most of the time, he

would end up frustrated and angry at how slow I was learning. I understood

that he was just nervous about me failing my class. During those moments, I

became somewhat resentful towards my father. It never felt like anything was

good enough for him. Sometimes, I would suddenly cry in which my mother

would take over in tutoring me.

After studying and finishing up on my homework, we would go to the

park together. The park wasn’t far from where we lived and so, we would go

there almost every day if it wasn’t raining or if he wasn’t busy. On his rest

days, we would go to the cinema. We would bond over the films that we

watched. In order to save up money, we would buy one ticket for each of us
 HERUELA | 33

that would act like our entrance fee. Because once you hand over your ticket,

you can go to multiple screening rooms since no one was monitoring how

many films you watched. So every week, my father would try to keep himself

updated on what’s been newly released at the cinema. I loved the cinema

through my father who watched Roger Ebert movie reviews. And when we

weren’t watching movies, we were at Blockbuster shops searching for films

and renting DVDs and VHS.

December in America was the time of year when the nation was

overflowing with surplus of food, toys, and any item. My father had already

set up Christmas decorations after we celebrated Thanksgiving with the

elderly in our care home facility. I really thought I would experience a snowy

Christmas at Walnut Creek but after asking Prathamesh if it snowed here. He

shook his head and said if I wanted to experience snow, I should go to Lake

Tahoe.

Every now and then something reminded him of the Philippines

whether it was food or the fish that was found in our local market. But despite

living there for years, it always occurred to me that my father longed to go

back to the shores found behind his house. However, we had finally arrived

in America, the place which literally embodied excesses—an excess of

material things which my father never experienced in his hometown. Despite

surrounded by so many materials whether manufactured in America, from

China or even from the Philippines, the consumerist culture that perpetuated

America never seemed satisfied. Christmas always felt bittersweet because

 HERUELA | 34

even though we knew ahead that our tables were filled with Pecan Pies,

roasted Turkey, Yams, and cups of hot cocoa, we always felt lonely in

America—far from our relatives. My father always said Christmas is a big

deal in the Philippines because Jesus Christ is born on that day, which is why

the whole country prepares for it months ahead.

It was during about this time that our school was preparing for career

day, my father and I decided to go to Walmart to buy some stuff for the event.

He had convinced me of being a doctor for career day as it was a noble

profession that earned a lot of money. We had borrowed lab coat and

stethoscope of Emerito’s wife who thought the whole thing was adorable. We

were at Walmart because I had to wear something presentable besides the lab

coat.

As we walked by the jewelry area at Walmart, my father stopped to

look at a set of Puka shells necklace and bracelet. When he asked the one in

charge of the display where the shells came from, she told him it came from

Hawaii. He shook his head and said she must be mistaken because it came

from the Philippines. At that time, I didn’t understand what those Puka shells

meant to him. He then grasped my hand walked away. In retrospect, I knew

he made me take up the career he wanted as a child. Being a doctor meant

prestige and financial stability that he wanted me to have and something that

my father struggled to provide and achieve despite migrating to America.

After going to Walmart, I came home to hear my father calling to his

side of the family. My father excitedly told them of the food that we were

planning to cook for Christmas. I couldn’t hear what my relatives told him,
 HERUELA | 35

but he started to cry. It was after he hung up that he scooped me into his arms

and told me that he called our relatives at the Philippines. It was typhoon

season and his family weren’t able to catch any fish. Because this they told

him they didn’t have anything to eat.

“I want to give you the food through the phone,” he sighed. I could

hear the sorrow through his voice. “In here, the food is put to waste and just

thrown away while the fishermen from our village especially our family

experience famine and hunger during this time of year.”

The next time we went to Walmart, my father passed by where the

Puka shells were displayed. He then bought a Puka shells necklace that was

originally worth $16 was now on sale for only $10. Despite buying the shells

that he knew must have been the same ones that he and his sibling scavenged

in the waves many years ago. I could feel the melancholy from the small smile

that graced his face. The tag on the necklace stated it was from Honolulu,

Hawaii. He told me this necklace was made from the very shells that were

carried by a wave that landed on the shores of Surigao.

“It’s important you know its origins,” my father told me while he

placed the necklace over my neck. “These shells helped fed me and my

siblings when was your age.”

My father then held my hand and we made it towards the grocery. I asked

him why we were buying groceries. He explained that since Walmart was

having an end of the year sale, he wanted to send a Balikbayan box to his

relatives, especially since they barely had any food to eat for Christmas. We

bought as many can goods, chocolates, and clothes as we could afford. When
 HERUELA | 36

we got home, I would help them arrange the items in the box. I touched the

necklace that hangs around my neck.

“Are we going to send this to them as well?” I asked while touching

the Puka shell necklace.

“No, we’re keeping that one,” he stated. “It’ll be our little

remembrance.”

I grasped the shells dangling around my neck. I was too young to

understand then of the sorrow that my father felt in realizing that the fruits of

their labor—catching Puka shells as the waves would heavily crash into them

—was now commodified into something that they will never be

acknowledged for doing so. The value of his childhood had now been sold at

a lowered price. The exploitation hadn’t ended in those shores where he and

his siblings laid down on the sand after a hard day of scavenging for shells no

bigger than teardrops. Now, at least he knew where the Puka shells had gone

to after all these years. The rest of America might think the shells came from

Hawaii but we knew where it really came from—we knew its real value and

we carried it with us.

The Pain That Binds Us

“After a year of pain, I realized that I could no longer remember what

it felt like not to being in pain. I was left anchorless. I tended to think of the
time before the pain as easier and brighter, but I began to suspect myself of
fantasy and nostalgia.”
— Eula Biss, The Pain Scale

Reasons
 HERUELA | 37

I was six years old when my mother got her Hepatitis B vaccine. It was

then she began showing signs of Rheumatoid Arthritis (RA), a type of auto-

immune disorder. An auto-immune disorder usually causes a person’s own

immune system to attack the organs and other parts of her body, with my

mother’s case, her bones were deteriorating. My mother blamed the vaccine

as the reason why she obtained her illness based on some articles she read.

According to her, vaccines despite being tested as safe had a small possibility

of accelerating or activating the dormant traits of auto-immune disorder in a

person’s immune system. Even though there is no “specific data or research

conducted” linking vaccines as the direct cause of Rheumatoid Arthritis and

other auto-immune diseases.

For a couple of years now, my mother has stopped taking prednisone,

a type of steroids, because the relief she experienced from taking it is only

temporary. After a day of little to no pain, the next day the pain is twice more

painful. And then one day, my mother just gave up in the idea of drinking

medicine. It was also around the time she started reading about how to

“reverse autoimmune disorders from an allergic reaction from Hepatitis B

through a plant-based diet.” Because of this, for almost five years now, my

family and I don’t eat breakfast but drink a concoction of blended pineapples,

cucumbers, carrots, and celery.

I am skeptical of her new belief in a plant-based diet.

Despite hearing the notions of plant-based diet being more sustainable,

and healthier than eating meat, I can’t believe that my mother’s genetic

disorder will miraculously disappear. Thirteen years that my mother hasn’t

 HERUELA | 38

been able to walk back again, thirteen years of my family going to those M.D.s

and specialists and then going to faith healers, albularyos, and alternative

doctors. Maybe, I am tired and have gone cynical with all these things with

no positive effect to my mother.

I want to know why my mother, and my grandmother has this

debilitating illness. There must be a reason why it happens, but for now, we

don’t know the answer. We surrender it to God, because without Him we are

nothing. I looked to science for answers and yet, I am left more confused with

what I find. The immune system is supposed to defend the body from foreign

invaders like bacteria and viruses. But with my mother’s case, her own

immune system wrongly attacked causing inflammation to all her joints. “If

the inflammation remains present for a long period of time, it can cause

damage to the joint. This damage typically cannot be reversed once it occurs.

The cause of RA is not known.”

“It must be a curse,” A lot of people have pointed out over the years.

The countless albularyos and faith healers have mentioned it, which has

led to my parents and I wondering as to who and why they would do such a

thing. The answers become varied: a cousin, a friend, and cursed that placed

many years ago before my mother, Lola Betty, and I were even born. Maybe,

the first wife of my grandmother’s father placed a curse on the children of her

husband’s mistress. I was just shocked to learn this bit of history from my

mother about her side of the family. I had joked that maybe jealous spirit

became vengeful and cursed the women in our family.

 HERUELA | 39

“Your Lola Henia is the second wife of your great grandfather—Lolo

Carlos,” my mother told me. “Lolo Carlos went and lived with Lola Henia

because his first wife wasn’t able to provide him with a child. They went on to

have Lola Betty, Lolo Loreano, and Lolo Enchong.”

I was more than dumbfounded that maybe the proclamation of some

of the albularyos weren’t full of lies after all. My mother would then go on to

say that despite the sad circumstance of Lolo Carlos’ first wife, the first wife

took care of Lolo Enchong as if he was her own and understood why her

husband left her. I would like to think that maybe Lolo Carlos first wife did

curse the women in our family but after seeing his children, she wanted to

take it back just like the film, “Maleficent.” But unfortunately, just like the

film, the curse remained in our family.

But like my search for my answers about the illness that plagued my

family, these are all just speculations with no conclusive evidence.

As most people have pointed out every time, I explain my mother’s

debilitating disease, “But isn’t Rheumatoid Arthritis supposed to only affect

the elderly?” Unfortunately, it is the most common autoimmune arthritis out

of 100 different types. The majority of those affected by RA at around 75% are

women. My mother was diagnosed at the age of thirty-four. Surprisingly, RA

can occur between the ages of thirty to fifty years old. But like for my

grandmother’s case, in which she was diagnosed at the age of seventy-eight, it

just proved that RA can start at any age.

 HERUELA | 40

My mother continues to pray the holy rosary every morning after she

wakes up and before she goes through the motions of calculating our internet

café’s daily income and morning exercise while lying on the bed. I could say

that my mother’s religious faith came from her mother, Lola Betty. My father,

at one point, has lost faith in God because of her illness. We pray together

every Sunday when one of the lay ministers from our chapel visits to provide

the anointing of the sick and feed my mother the Flesh of Our Lord Jesus

Christ.

To question God’s reasoning and plans is a sin and yet, I still continue to

ponder on what it all means.

Connection

When my panic attacks occur, I would repeat my mantra: “I come from

a line of strong women. This shall pass.” My grandmother had lived through

and survived World War II. My mother has been living with RA for more

than a decade now. I try not to think about the illness plaguing our family.

Most of the time, I fail to do so.

My father and I try to cater to my mother’s needs and requests. There’s

a pattern, a sort of ritual as we go through our day. After my mother goes

through her morning rituals of prayer, calculating what’s left our money, and

exercise on the bed, my mother would call me to get her clothes and help her

take off her clothes. I would then leave her in order to give her some privacy

as she cleans herself with a wet cloth. When she is done, she would then call

for me to get her dirty clothes and used washed cloth. I would then help her
 HERUELA | 41

sit on the bed. After which I transfer my mother to a monoblock plastic chair

by pulling her pants which would help her carry her to the chair. From chair

to chair, I help her transfer until my mother is at the front porch. I would then

brush her curly hair and try to put order to her tangled strands bed head. Her

everyday grooming and exercise regime as well as taking care of mother’s

entire request, I would sometimes think maybe my mother would never walk

again.

I don’t remember my mother walking.

I only have pictures of her standing up and a few videos of her

walking. Through our family home videos of our trips to Los Angeles and Las

Vegas, I see a brief glimpse into a time before RA managed to take her ability

to walk. It’s funny seeing the videos because a majority of its contents is about

my father trying to walk at the same pace as my mother because she was just

so eager to arrive at the tourist destinations like the Monterey Bay Aquarium

to Disneyland. Our home videos help me see that despite my mother is

unable to walk—there was a time when my mother was able to walk. And

maybe, just maybe, my mother would be able to walk.

When my mother came to the Philippines with me, she was still able to

walk. But despite being able to walk, she was in a lot of pain. She had gone to

various rheumatologists who told her the only way for her to ease the pain is

by having the fluids from her knee which were causing inflammation to be

extracted and then replaced with a liquid substance. My mother, of course,

didn’t follow through because for her the doctors she didn’t properly explain

the need for an extraction. So, the doctors would prescribe her high dosage of
 HERUELA | 42

prednisone, corticosteroids, and other steroid-based that would hopeful

provide her some relief from the pain but never quite did.

I remembered that there were times when I would hug her that she

would yell at me because my hugs were causing her pain.

After my father arrived, they decided to go to the president of

Rheumatologists in Davao City, which was at that time Dr. Tanupo. It was

then that the doctor informed of my mother’s accelerated bone deterioration.

Based on my mother’s x-ray, Dr. Tanupo pointed out that my mother’s pelvic

joints and hip bones have deteriorated which can be seen through the large

dots that scattered across my mother’s body. Dr. Tanupo would go on to

explain that my mother needed to get injected with Enbrel which was a

biological substance which would prevent more of her bones from

deteriorating by weakening my mother’s immune system.

“Each dosage costs Php. 17,800 and you need to take it twice a week for

six months,” Dr. Tanupo explained.

My father said he doesn’t know what overcame him but he started

crying. My mother tried to comfort him. The doctor was at first shocked,

before giving him the assurance that it was hard but there was no other way.

Because if my mother’s immune system continued to be highly active, it

would cause more damage to my mother’s bones.

“But after six months, Jinky will be able to walk again, right doktora?”

My father asked.
 HERUELA | 43

While I tried to focus on my grades, my father tried contacting our

relatives. He needed someone to look after my mother while he was away. He

didn’t want to be a burden to our neighbors.

“I need someone to watch over the house and help Pinky while I’m

away,” I heard my father calling over the phone. “What about Jamaica? Can’t

she come here? Okay, I expect her to be here as soon as possible.”

Ate Jamaica was living with Aunty Virgie, my father’s sister, while she

worked at Cagayan. My father was going to various institutions from PCSO

to Lingap. He even went to then-Mayor Rodrigo Duterte to get as for some

money for my mother’s injection. Mayor Duterte had come to visit our house

at around December as if some sort of early Christmas surprise all because of

a mutual friend. We were just shocked and amazed to find the mayor of

Davao city at our house. Mayor Duterte was escorted by his entourage of

bodyguards which attracted the attention of our neighbors. The mayor gave

my family a wheelchair, Gaisano gift certificates worth Php. 20,000, and a

promise that if my family ever needed financial assistance for my mother’s

medication we could come to his office for help.

My father wanted to make use of that promise. After waiting for over

an hour for his turn to talk to the big man, my father explained his situation to

Mayor Duterte. My father wanted to get Php. 100,000 which was good for five

injections.

“Unfortunately, the mayor doesn’t have enough budget for that,” Bong

Go, Mayor Duterte’s adviser interjected. “The amount you’re asking is the

same amount of budget we in order to help the people who to come us. As
 HERUELA | 44

you can see there are a lot of individuals seeking out for our help. It would be

unfair that you will be the one to get financial assistance.”

“Can’t you give me even just smaller amount then?” My father asked.

And so, my father was able to get Php. 54,000 of financial assistance as

for my mother which was good for three Enbrel shots. When he got home, my

mother informed him that Ate Jamaica had run off with her boyfriend and

wasn’t coming to help us out. In a fit of rage, he immediately contacted

Manoy Remy, my father’s brother and the father of Ate Jamaica.

“I only ask for your assistance in having someone,” My father talked to

Manoy Remy through the phone. “Anyone, to help me by watching over

Pinky and yet, none of you can’t provide some sort of assistance? When you

or anyone in our family needs help, I go out of my way but when I need help

no one is there to help me!”

I was ten years old when I realized how inept the relationships my

parents and I had with other people regardless if they were part of our family

or not. Promises, whether they were made by the politically inclined, wasn't a

guarantee. My father was very strict on his belief in the delicadeza or Word of

Honor. A man who goes behind his promise is neither reliable and thus,

cannot be trusted. And so when Ate Jamaica arrived at our front door, my

father was angry that she arrived at running off with her boyfriend instead of

fulfilling her promise of taking care of my mother. He wasn’t going to let Ate

Jamaica in our house but because I had greeted her and ushered her in our

house, my father begrudgingly took her in.

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After six months of using forty-eight Enbrel injections, the doctor’s

promise of my mother being able to walk again was another lie. It financially

crippled our family and at the same time brought about a lot of worry on the

possible side effects on my mother. One of the mentioned side effects was that

since the Enbrel was that my mother’s immune system would be weakened.

My mother is now prone to all kinds of disease and illnesses especially

airborne sickness like Tuberculosis. So since then, we try to make sure that

our family doesn’t get sick often in order to protect my mother.

Affliction

Ever since my mother couldn’t walk anymore and I start to hear her

cry every single night through my bedroom walls. It’s suffocating to know

that as a child, I couldn’t do anything to ease her pain or help her. I would lie

down crying to myself. What else could I do? I was slowly losing my mother

to her disease.

When it rains, the shift of the weather from the intense heat from the

sun to the chilling rain affects her RA. My mother would say that ever since

she got her illness, she became weather sensitive and can predict if it’s going

to rain or not. My mother doesn’t physically appear to look like she’s in pain

which is can be problematic at times. Because one day, I gave my mother a

bone-crushing hug, she yelled: “Sakit na gani! Gipalala pa ni mo.” I then ran

away from my mother, crying. I just wanted to show her my affection and

even as something as simple as a hug, I couldn’t even touch her without the

fear of causing her more pain.

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At ten years old, I spent most of the nights staring at the ceiling,

listening to my mother crying while my father tried to comfort. Even though I

didn’t know the word despair as a child, I felt the hollowing sensation of its

dark abyss. The only thing I could do was cry alone at night. While my

mother lay in bed and I tried to assist her in any way I could. Most of the

time, she was in an irritable mood to the point she picks a fight with my

father over trivial things. I was still adjusting to my mother’s illness and how

it was affecting her behavior.

One time I lifted her up from her bed to the chair in order to get her

ready for her bath. My mother was nagging about how they spent a lot of

money to send me to a private school and yet, I gave them low grades. Other

than that, the small tasks she requested me to do were according to her so

simple, but I failed to accomplish them.

In a fit of anger, I forcefully shoved her to the chair causing her waist to

crash on the hard-plastic seat. At that time, I just felt so frustrated that we

were doing everything for her and yet, it never seemed good enough for her.

But I knew it was wrong of me to do so. When I heard my mother cry and

saw her tears, I instantly went pale and regretted my actions.

“Gituyo mo ‘to no!” she accusingly yelled at me.

“No, it was an accident,” I bluffed.

But deep inside the gnawing sensation of realization dawned on me;

we were losing the battle over her illness. I was just causing her more pain

and suffering. I was a terrible daughter; I repeated these words to myself over

and over again. It didn’t help that the next day, my mother told me to come
 HERUELA | 47

into her room. I awkwardly stepped inside but sat beside her while she lay in

bed.

“What do you think of having a stepmother after I died,” she

whispered while tears ceaselessly flowed down her face. “Because I want to

die, I want to commit suicide.”

As any ten-year-old child, I hugged her and cried— silently praying to

God to never take my mother away. It made me return back to the time when

I was in kindergarten in America. I was at the mall. My mother and I along

with our Indian friends were shopping for clothes. While Meda mostly

shopped for her clothes, my mother was going to the store to find cute dresses

and skirts for me. Aunty Meda had just asked why my mother why she

constantly bought clothes for me instead of herself.

My mother replied because she wanted the best for me. At that time, I

was looking around the store while trying to keep an eye on who I thought

was my mother. When I came closer to the lady, I was shocked that I was

following the wrong person. I ran around the store going in and out of it

hoping to find my mother. My heart was pounding rapidly and my thoughts

were of kidnappers possibly stealing my organs to living in the streets of

America forever.

One of the shoppers took pity on me and brought me to the cashier.

The cashier politely asked me, “Sweetie, what’s your name? Don’t worry your

mommy’s gonna pick you up. Just tell me your name, sweetheart.” After

telling the cashier my name, she made an announcement for a lost child
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waiting for her mommy in cashier lane seven. When my mother arrived, she

hugged me.

“Di nadyud ka mopalayo sa akoa sa sunod, ha,” my mother murmured to

me. “Don’t ever leave me, mama,” I hugged and told her the same words

when she found me at the store. My mother’s crooked, swollen fingers wiped

my tears away before hugging and whispering to me it will be alright. As

children we don’t usually think of losing our parents and so hearing my

mother wanting to die and to give up, the trauma of having to confront my

mother’s suicidal thoughts still haunts me. Even now, I still cry whenever I

recall it.

Pain

Pain is described as an unpleasant or agonizing experience which is

either physical or emotional. When pain is physical, it is caused by receptors

in our body perceiving the sensation as pain. Pain is essential because it

informs us that something is wrong with our body, with our flesh, and so we

are tasked to find the root cause of our pain. When pain occurs in the

emotional aspect of our human perception, it is mostly due to the unconscious

and conscious mind in a conflict which is not resolved immediately. Unlike

the physical pain, emotional pain lingers longer because of our tied

experience to a context of ideas or of the visual memories of an individual.

However, our body can also experience pain constantly which in turn is often

called chronic pain. Chronic coming from the word Chronus which means
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time or endless, so when you combine the two words together it means an

endless cycle of pain.

I read that there is a certain disorder in which the patient cannot feel

pain. Even though the thought of being painless to stabs and burns seem

awesome like coming from a comic superhero story, in reality, this is very

dangerous. The people afflicted with this very rare disorder can die from

infections, loss of blood, broken bones, and internal bleeding or organ

problems, which are all noticeable if only the person can detect it through the

pain. In many ways, pain is our first signal that there is something wrong

with our body and that we need the help of a professional like a doctor.

“Your pain will help you in your journey towards heaven,” a priest

once told my mother after providing my mother with the holy sacrament of

anointing of the sick.

I find it strange that a lot of religious individuals who learn of my

mother’s pain and suffering, they see as nothing more than a blessing in

disguise. It sometimes appears as if she should thank the malady that plagues

her body just because it guarantees her a chance to go to heaven. “You are in

unity with Jesus through the pain you are currently experiencing,” too many

people have told us the same stupid line. I find all these claims of finding

salvation through pain and suffering full of bullshit, Jesus Christ has already

died on the cross for our sins. I believe that He took care of that for us so we

don’t have to do it. If anything, I don’t feel any sympathy from the people

who glamorize the illness that has plagued our family but rather I just think

they lack the empathy to say anything, which is blasphemy.

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Before Lola Betty succumbed to my mother’s illness, she was one of the

people who said those very lines of salvation through suffering. Every time

my father would try to plead with my grandparents and my mother’s siblings

about helping my mother, they would remain silent. They always told him

that my mother is hardheaded and that she will be the one to take care of her.

My father for obvious reasons became frustrated in their reaction. I even

spoke up during one of those discussions that if Lola Betty, the mother of my

mother, was basically giving up on her own daughter—my mother—then it’s

of no wonder why my mother is fighting her illness. Lola Betty claimed that if

she ever had RA she wouldn’t succumb to its ill effects but fight on.

But when RA occurred, my grandmother complained about how

painful it is. I guess the saying, “You wouldn’t know what someone is going

through if you haven’t worn his shoes,” had some truths. This time it was my

father and me to remind my grandmother to be a good example walk despite

the pain order to encourage my mother to copy her example. My

grandmother wanting to prove a point continued walking despite the pain.

But despite this, however, my mother still refuses to walk leading to her legs

becoming frail and boney because her thigh muscles haven’t been used for

several years.

At one point, I have also developed my chronic pains.

I do not see my pain as salvation. Instead, I see as it is, a form of an

amalgamation between a mutation gone and bad luck that has struck the

three generations of women. This time it’s not me who is giving the pep talk

of not giving up despite the pain but rather my mother. My father points out
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the obvious that among the three of us who are dealing chronic pain—mine

would be most painful since now it doesn’t only affect the skeletal structure of

the body but every part of it from the nervous system up to my skin and hair

follicles.

I try to live my life as if nothing has happened. I still continue to take

care of my mother as I did before my own diagnosis. We do our morning

rituals like we used to do. Sometimes, I would cut her hair and applying black

hair dye to cover up her white hair. I have noticed recently how the passage

of time has been for my mother—she has aged beautifully in my eyes despite

her attempts in blackening her hair. The slight wrinkles in which I barely

noticed it was only when paid close attention to her face that I saw the lines

that appear when she smiles. She has developed a caramel-like tan from her

constant exposure to the sun which is an exact opposite to what I have

become after I was diagnosed with my own autoimmune illness. When I’m

reminded of my mother’s old age, I remember Lola Betty and how little time

the three of us have left with each other. Despite sharing this illness which my

mother had hoped would skip me but didn’t, we are in a way still strangers

with each other like how three of us are still strangers to this malady that

causes pain in our knees and slowly deforms our joints.

“Haven’t you watched that Thai drama already,” I teased my mom

while she sat watching through Youtube.

“Yeah, but I really like this show,” my mother explained. “And I

haven’t found any romantic dramas online yet.”

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“If you love romantic dramas so much why not write your own,” I

asked her.

My mother shook her head and explained that she doesn’t know how

to write. I told her it’s absurd that she just needs to practice. My mother

insisted she couldn’t express herself properly through the written text. I

didn’t press on. Even before stricken rheumatism, my mother has always

disliked writing. What my mother lacked in crafting words together to form

meaning of thought and expression and expression, she compensated through

her beautiful way of coloring and shading drawing books. She used to love

tinkering with her hands. She would do Crochet and knit various things. She

would sew cross-stitched landscape masterpieces all of which are displayed at

her hometown in Monkayo. While pregnant with me, she cross-stitched a

beautiful image of a mother cradling her baby in her arms. My mother prefers

expressing love through action rather than words, which was always

apparent from the start. But now she’s immobile, she can only remind us of

things my father and I forget so easily. My mother tries to help out by

patching up the holes in our clothes despite struggling to do so with her

swollen fingers and slightly deformed hand, which I often hold when I try to

ease away her pain despite knowing my efforts are useless.

Right now, science is at a groundbreaking discovery of rare gene

variants which “causes immune cells to no longer work properly.” The

sequence of our family’s genetic makeup could one day be unraveled in a

way that could shed a light as to how our DNA could be so similar and yet, so

unique in the way our malady has occurred in our bodies. Each person has set
 HERUELA | 53

of specific needs, like each genetic sequence is never the same—a slight

variation—in which science is now creating a way to provide “target

treatments” that could precisely accommodate a patient’s illness. For so long

we, the women in our family and so many others with autoimmune

disorders, are afflicted with this silent malady that can never be fully

understood by those who don’t have it. And so, what we can only do now is

wait for a cure, a treatment, or whatever thing that could alleviate this pain

that runs deep in us, coursing through our DNA, an unwanted part of

ourselves which for now we have to deal it alone and together.

The Wolf and The Butterfly

Pain

After coming home from a night out with my boyfriend, I returned to

my room with a slight pain coming from my knees. I lay on my bed at my

boarding house. My roommate was away with her classmates finishing up on

some group work. My roommate and I slept on a double deck bed, at that

time, I was thankful that I slept on lower bunker.

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My classmates have always joked about me being an old lady because

of the back pains I have been complaining a lot. I always believed the cause of

my backpains was because of an accident I had in second-year college in

which I slipped and accidentally landed on my ass. At first, I just laughed at

how clumsy I am but after a week, I was experiencing great pain in my lower

back. It came to the point I had a Physical Therapist examine my back and do

pressure points. Some nights, I would lie in my bed while typing away essays

and assignments. Just sitting down to write has become burdensome.

Over two years just dealing with my back and occasional knee joint

pains, I was just convinced that I had my mother’s illness, Rheumatoid

Arthritis.

It was in September when I suddenly couldn’t walk. The pain was so

intense that I cried and finally confessed to my parents that I couldn’t walk.

My father took care of me while I lay in bed. I never felt more helpless in my

life—other than the nights when my mother cried in pain because of her own

illness. I had to fight against the pain. I took a bath on my own despite

struggling in standing up. I had to stand up, I kept thinking to myself. I

couldn’t bear to be invalid. I couldn’t bear the thought of losing to

Rheumatoid Arthritis like my mother. I sometimes imagine my immune

system in the embodiment of antibodies attacking my skeletal framework.

The thing that comes into my mind is that anime titled “Cells at Work,” in

which cells are personified. I imagine a group of antibodies vigorously

stabbing the cartilage found in my knees, as it was the enemy while my cells

just standby powerless to my immune system’s hysteria. Just like our current
 HERUELA | 55

state in which fear mongering now justifies extrajudicial killings and

persecution of the innocent, so does my body’s immune system mistakenly

annihilate all cells that it deems to be a virus or a bacterium amongst them.

My immune system is corrupted just like our government and judicial

system, and I wonder what it will take to bribe it into submission.

Sleep has become elusive.

Some nights I would stay up staring into the void—my dark room—

either because of the pain that gnawed my joints or because of my restless

mind trying to wander off again. I’ve lost track how many times I cried—

suppressing a whimper, because of fear my parents would hear me. I didn’t

want to worry them further about the pain that I experienced. When sleep

does finally settle in, I don’t dream anything—I am dead to the world for a

couple of hours. And when I do wake up, I think the previous day was a

nightmare but then the pain kicks in. The night hasn’t taken over me, another

day I awake, another day I live.

After five days of living with pain from my back and my knees, my

father decided it was time to visit a doctor. Dr. Bangayan is an internist who

specialized in Lupus and Rheumatoid Arthritis. After running through the

usual questions: When did it first manifest? How painful it is? What did you

do up until how to alleviate your pain? After examining me with his

stethoscope and giving me a good look, Dr. Bangayan gave us a list of tests to

run.

“What’s Anti-Nuclear antibody tests for?” My father asked.

“Just in case she has Lupus,” My doctor replied.

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“She’s so young, Doc,” my father told him. “Wala siguro siya’y Lupus.

Her mother and grandmother are diagnosed with Rheumatoid Arthritis it’s

obvious she also has RA.”

“Mao gani, bata pa kaayo siya,” Dr. Bangayan said. “She might have

Lupus. Sometimes when you have RA you also have Lupus. They are sister

illnesses.”

When we got home, my father complained about Dr. Banagayan’s remark of

me having Lupus. My father was convinced I had only RA. My mother told

him it was perfectly normal because she was also told to take Antibody test

and came off the negative. As my mother points out, “Doctors just want to be

sure that’s all.” I remembered the books found in Dr. Bangayan’s office and

one of them had a cover of a wolf’s face. The image stuck to me, and I dread

of the results. I had a gut feeling, maybe the doctor wasn’t exaggerating. I

took the tests immediately with my father.

Diagnosis

“Mutation took us from single-celled organisms to being the dominant

form of reproductive life on this planet. Infinite forms of variation with each

generation, all through mutation.” Professor X’s pick-up line from the X-men

series always come into my mind whenever I think about my mother’s illness.

The mutation in our DNA was the reason why my mother and grandmother

have an autoimmune disease. I sometimes amuse myself by thinking how can

degenerative mutations found in illnesses like RA, could make my

grandmother, my mother, and I “the dominant reproductive life on this

planet?” When I asked my boyfriend what he thought about my genetic

 HERUELA | 57

mutation making me lose clear eye vision and causing my immune system to

self-destruct, he tells me that’s he’s attracted to slightly deformed women.

When I was diagnosed with Lupus, he didn’t visit me for months since

the discovery and diagnosis of my mutation.

The moment I got my lab results after several blood extractions from

an injection needle, and it came out negative, I knew I had Lupus. I nervously

asked my father about the Antibodies tests mean when it states in bold letters:

POSITIVE. My father assures me that everything is alright that we just have to

wait to get Dr. Bangayan’s opinion first before jumping into conclusions.

When it was our turn with Dr. Bangayan, he read the results and immediately

brought out his laptop to show us his power point presentation about

Systemic Lupus Erythematosus. He explained that not only did I have

Rheumatoid Arthritis but I also had Lupus which he calls Rheupus, after the

two mentioned illnesses.

“The word Lupus comes from the Latin word which means wolf. This

disease got its name because peasants in Europe started having wounds that

resembled wolf bites.” He explained. “Sometimes Lupus is associated with a

butterfly because of the shape of the blemishes a Lupus patient gets from too

much exposure to sunlight. It forms the image of a butterfly. It is also called

the Illness with Many Faces since it shows multiple symptoms.”

As I let his explanations sink in, all I could think of was how fucked up

my genetic make-up had to be that out of three generations I had to be the

lucky one to have two autoimmune diseases. At a party my boyfriend’s friend

invited us to attend, I was so drunk I tried killing myself by running in front

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of trucks driving towards Digos. In Dr. Bangayan’s small office, it feels so

insultingly ridiculous that my body was now slowly killing me as if some

cruel joke just to prove how incompetent I was in killing myself so my body is

doing it for me. My doctor must have noticed my bitter mood that he stopped

and looked at me.

“You know what chronic means, right?” he asked.

“It means it’s not curable.”

“Yes, but even though it’s not curable there is hope for lupus,” he said

before showing the next slide. “Here is a list of treatments we can do. But

with your current state is your Lupus deadly or just mild?”

“Currently, my lupus is just destroying my bones, so I guess it’s still

mild.”

“Very good, since it’s still mild I will just issue you Methotrexate, anti-

rheumatic tablets, and prednisone.” He explained. “Whatever you do don’t

expose yourself to sunlight from now on.”

My father asked a lot of questions like where did my Lupus come

from. The only explanation Dr. Bangayan said was that currently, no one

knows. Some have speculated that since a majority of the Lupus patients are

women in their childbearing years from eighteen years old to forty-five years

old, it must be related to estrogen. While others believe it’s genetic and

environmental which includes the intensity of sunlight exposure as the reason

why Lupus occurs.

When we got home, I immediately researched about Lupus. The word

which usually associated with the medical drama series “House” was actually
 HERUELA | 59

more common than multiple scoliosis—which my uncle Nonoy had in which

the immune system attacked specifically his nervous system. Online I read the

many stories from female patients, in which since Lupus aren’t an obvious

illness due to how it can show multiple symptoms—a lot of doctors have

dismissed them because the doctors believed they were just experiencing that

“time of the month” instead of an actual life-threatening illness. One article

argued that because Lupus primarily targets women, despite affecting and

debilitating millions around the world very little funding has been given in

studying the disease. Some feminist has pointed out that if men were the

primary targets of the disease the research community couldn’t look the other

way and would be forced to do something about it.

Slathering sunblock and wearing long sleeves became my routine. I

sometimes pretend that instead of debilitating illness, I had become a creature

of the night. I muse over the thought that maybe I’m slowly becoming a

hybrid between a werewolf and a vampire—my vulnerability to the sun and

my loss of sleep was because of this curse—my mutation. Some days, I feel

fine that I could just go frolicking under the sun and then there are days in

which I just want to stay in my room and never get up. Through it all I tried

keeping contact with my boyfriend, and when he did finally arrive.

“Do you wanna go for a walk?” I asked him. He looked apprehensive

and to calm him down, I jokingly said, “Don’t worry its nighttime, my time to

walk among the living.”

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We walked around our neighborhood. I asked him why he didn’t visit

me even on my birthday—a month after I was diagnosed. He said he was

busy. I told him that I reminded him two weeks before my birthday party.

Almost all my college classmates visited, even Cara who lived in Tagum,

arrived at my party to be there for me while going through my diagnosis.

“Why are we still together?” I asked while gazing at the sky—

beautiful, a full moon. “You know we bring out the worst in each other, K.

With my illness who knows how much time I have left before I turn thirty, I

shouldn’t be wasting my time in whatever this is?”

“Thirty? What do you mean?”

By then I couldn’t stop crying, my boyfriend always teased me for

being so sensitive. I told him I always had a hunch I would only live up to

thirty years old. He looks at me with pity and doesn’t say anything.

“I’m working now,” I said while wiping my tears. “I write for a living”

“That’s good,” He said pausing as if he doesn’t know what else to say.

“You should live up to seventy.”

“Yeah, well I don’t think I can control how long I live that’s not up to

me to decide,” I told him.

“I’m sorry,” he hugged me. I didn’t return his hug.

I heaved a long sigh before saying, “I’m tired.”

We walked back to my home. I just wanted to transform into a wolf

and run away from my home, from my family, and from him—and just howl

to the moon while I cried in the night. The word lunatic came from luna which

means moon. In olden times, craziness was attributed to the appearance of the
 HERUELA | 61

full moon. I couldn’t run off in the night. I am after all domesticated, tamed

despite having an unruly illness causing chaos to the methodical movements

of my body.

He messaged me the next day if I’m okay now, and I replied back: No.

The next weeks were casual talks with friends and family usually began with

me telling them: “I have Lupus” and then followed by responses of “I have

this friend who’s head became swollen because of Lupus” and “My aunt has

Lupus, she had to go to chemotherapy.” The horror stories my friends and

family told me of so and so having Lupus was as worse as their observations

and remarks. “Lumaki ang face mo.” “Grabe ka pale mo.” “Dasal parati sa Diyos.”

“My cousin died from Lupus take good care of yourself.”

My mother who has stopped taking medication is trying to convince to

get into her healthy living lifestyle. She showed me a video of a doctor, who

had Lupus for many years, got cured because of her vegetarian/Vegan

lifestyle. I just wasn’t convinced that my chronic illness would go away by

just eating vegetables every day.

My boyfriend tries to visit often but I doubt his intentions. On one

occasion, he looks at one of the picture frames displayed in our house. It’s a

picture with all the names of my classmates from Buena Vista Elementary

school. He teases me about my picture because of my toothy grin that had

missing teeth.

“Did you ever contact them?” he asked me.

“Never,” I replied.

“How come?”
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“Because I consider my life in America as another lifetime,” I told him.

“They must have forgotten about me by now.”

“You’ve forgotten about them.” He moved closer to me. He places his

hand on my shoulder. “I don’t want you to do that.”

“Do what?” I weakly asked.

“Forget your past,” He replied. “I’m afraid you might forget about me

just like what you did to your friends in America.”

I wanted to tell him that I’m scared of forgetting not only him but also

everybody around me. But instead, I assured him, I won’t. We enjoyed our

day watching videos and sharing memes. How I just wished we could just go

around Davao at night like we used to do. But as of now, our activities in the

night will have to be under the sun’s unforgiving rays while I slather more

sunscreen.

Butterflies and Maladies

When our relatives invited us to go on an island hopping at Samal, I

immediately took up the opportunity. I remembered what the doctor said and

so, I tried to not expose myself to too much of the sun’s rays. The next day

after our trip, I started developing small bumps that looked like chicken pox.

My whole body was itchy and when I tried going out of my room, the

sun’s rays irritated my eyes. My room is very dark even when it’s very bright

outside. I have now literally become the creature of the night, if only I could

turn into a wolf then my transformation would be complete.

 HERUELA | 63

My father brought me back to Dr. Bangayan in order to have me

examined and to be treated. Dr. Bangayan asked if I followed his strict rule of

using sunblock and avoiding the sun. My father responded that we did and

that I never had problems like this before. Dr. Bangayan responds that since I

have Lupus I should be more careful with how I expose myself to UV rays.

“You should also put on some sunblock at night,” Dr. Banagayan said

while writing down a prescription. “Light bulbs emit UV rays.”

“Do you think the medicine is the reason why it’s making my daughter

sensitive,” My father asked. “She used to expose herself under the sun before

and this never happened.”

I could only groan inwardly because of my father’s question. Dr.

Bangayan obviously took the question personally since his mood suddenly

changed. He explained to my father that Lupus once manifesting will make

any patient venerable to UV rays with or without the medicine. The

remainder of my check-up was an awkward silence.

I always had weird skin problems ever since I was young. My legs were

constantly plagued with sores and scars. My parents always reprimanded me

for my apathetic view of my legs which in reality I lose hope in making it

flawless years ago. After taking my medicine, I noticed that a lot of my rashes

subsided only for new blemishes to develop on my face. I sometimes

unconsciously touch the blemishes on my face.

An obvious sign of lupus is the development of butterfly-shaped rash

that span from the nose across the cheeks. As mentioned, skin problems arise

from photosensitivity to the sun’s rays that causes the skin to turn flaky and
 HERUELA | 64

red spots or develop into scaly and purple rashes across the body not only the

neck, arms, and the face. Lucky for me I didn’t develop sores in my mouth. I

don’t know how I’ll eat with my body racked with sores in my mouth and on

my skin.

I read an essay about how clear skin in our society demonstrates one’s

economic background. I hear a lot of people telling me, “Sayang ang kutis mo

maputi pa naman.”If my skin reflects my economic class in society, it just

demonstrates my lower-middle-class upbringing. I cannot afford to live in a

fully air-conditioned house like Kris Aquino or Ferdinand Marcos. I commute

in a jeep and occasionally take the taxi if I need to go somewhere in broad

daylight instead of driving in an air-conditioned car. My mother would

sometimes tease that if only I’m a child of a wealthy family then maybe. I just

wished that butterfly rashes would form a cute butterfly like birthmark

instead of chickenpox-like sores on my skin.

I always found butterflies beautiful creature and now the notion is

marred with my disease. Niña, a friend of mine, always found butterflies

disgusting and frightening. I once told her that butterflies have been known

to suck blood from dead animals with open wounds. She flinched at the mere

thought of butterflies hungrily sucking blood and sarcastically thanked me

for the information. The scientific reason as to why butterflies would drink

blood is because they usually suck up nutritious liquid contents in which in

the case of blood is very nutritious. Morbidity is not commonly associated

with a fluttering butterfly and found that interesting. It’s only when that the
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morbidity of a butterfly has now become my illness that its entire luster has

turned to dust.

Disability

My high school friend, Ria, examined my persons with a disability

card. She frowned before asking me why I was labeled with psychosocial

illness. I told her that because my illness isn’t obvious compared to other

chronic pains, the doctor who signed my petition told me that they’ll just label

me psychosocial just in case the PWD office in-charge don’t consider my

chronic illness a disability. It never bothers me being labeled psychosocial

meant. I knew it was just a label a way for me to be able to get benefits that I

need through my PWD card and purchase booklets.

The psychological aspect of Lupus isn’t usually discussed often, as it

should be. Since Lupus has so many faces as mentioned, the mental illness

associated with it is usually overshadowed by the possibility of kidney failure

and sudden seizures. In an interview with Selena Gomez, she often replied

about how her Lupus would suddenly trigger anxiety and depression. It

made sense now because for so long I couldn’t place a finger on mental

turmoil that occurred to me over the two years at around the same time my

joint pains first manifested. I always thought that what I was experiencing

was just the effect of stress from college. The madness inside my head that

caused sudden dizziness to anxiety and depression had finally a name.

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From all the self-help books that I read about depression and anxiety,

my mantra whenever I feel alienated from my own flesh: “What I am feeling

now is not a part of me. I am not my illness.”

Sleepless nights still occur, but not as often as it had been when I was

first got diagnosed. But the experience of being alienated from my own body

has become rampant, in which there are moments when I feel a sort of out of

body experience. Some days while going through the motions of feeding my

cats, cleaning the house, and writing for my home-based work, I would go to

a room and suddenly forget my intention which is a common phenomenon

called Doorway effect in which change of scenery causes a person to

temporarily forget. I never bothered thinking too deeply about into it but then

one day I was walking in the streets when suddenly a moment of dreamlike

state struck me. I was confused about why and where was I walking. It was

only after staying in an area that I tried to calm myself in my memory and

myself in my state of panic suddenly flooded back to me. They called my

random moments of cognitive impairments as Lupus fog. It was common

among patients that they would experience problems in concentrating and

memory. The following symptoms that came from Lupus affecting my mind:

behavior changes, headaches, dizziness, vision problems, and the inability to

express one’s self.

“The good news: Lupus fog doesn’t usually get progressively worse,

like dementia or Alzheimer's disease, says Lisa Fitzgerald, MD, a

rheumatologist,” I read on an online article. The fact they mentioned the word
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“usually” doesn’t calm nor pacifies my fear of slowly losing my mind to

Lupus. And so, I return back to drinking and smoking.

“You’ve become addicted,” My boyfriend points out in one of his visits

while we stopped at a nearby sari-sari store.

I told him I’m not and then he asks how many sticks I smoke in a day,

which I replied two to four sticks a day and sometimes I skip a day. He shook

his head not convinced. I light a cigarette and relax as I inhale the toxic fumes

before breathing out some smoke.

“Why don’t you stop?” He asked.

“As to quote Hunter S. Thompson: ‘Buy the ticket, take the ride’,” I

told him. “I’m going to live my life one day at a time. I’ll enjoy it while I wait

for death.”

“You can die at any time, but living takes true courage.” He replied.

“You fucking stole that line from Rurouni Kenshin,” I teased while

giving him a playful nudge on his chest.

We had just watched a movie titled “Shame” in which Michael

Fassbender’s character and the protagonist of the film is a sex addict. After

watching it together, my boyfriend then started preaching about my addiction

becoming destructive for me. Ironically, before we watched “Shame” I read

some reviews of the film and one describes Fassbender’s devotion to the

women he has sex with like a smoker to a cigarette. I see my acts of drinking

and smoking as a way to cope or rebel against my own body.

“Anxiety is the dizziness of freedom,” Søren Kierkegaard writes in his

work titled “The Concept of Anxiety.” I accept that amidst the things I cannot
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control like my illness, I have to admit that not all my decisions are good. If I

want to smoke and drink, I’ll do it. I hide my addiction from my parents and

in a way I’m fine with it. I will live my life how I want to and not by anyone’s

standards but of my own.

My boyfriend hands me a Malunggay leaf and tells me to crush the

leaves with my hand in order to extract the leaves’ essence to hide the smell of

cigarettes. I thanked him for his advice. He placed his hand on the back of my

neck that reminds me of how I hold my kittens. I lean towards him while we

walk back to my house. I give him a quick peck on the cheek and on the lips

not minding if anyone saw us—unchaperoned, walking around late at night

together.

My malady is another reminder of my mortality that I am confined

within the limitations set by my own DNA. Each night, I look forward to my

evening strolls whether I’m alone or with company. I may have an illness but

I’d like to think I still have my agency. After each stroll, it has become a ritual

to observe my fingers and feel the cracking of joints. My fingers have now

become swollen and slight disfigured like my mother’s. Every time I gaze at

my hands as if I have an x-ray vision, I imagine my cells doing what it is

expected of them, except for one—the lone wolf that terrorizes the rest. I

imagine my immune system must be aspiring for something beyond what

conventional evolution dictates it to do. “Acceptance is the first step in a long

cycle of pain and recovery,” I once read from one of the books found in Dr.

Banagayan’s office. And so I embrace this frail and yet destructive part of me,

while I learn to live with it.