Not A Cry for Help

It’s weird to be in a state of part-distress, part-helplessness, and part-calm now after finding out my health insurance has expired (because of course, in this system, there’s an age limit for HEALTH insurance, as if you could ever stop needing medical care). In Cebuano, I would call it “minghoy.” I don’t think there’s an exact English translation of it, but the closest would probably be bleak. It’s the feeling you get when you hear news of the death of a comrade by the hands of the state and knowing there was nothing you could’ve done. It’s also the feeling you get after you create high expectations for yourself, only to have your fears of falling short justified. It’s not exactly disappointment yet.

Being stuck in the feeling of helplessness has made me question my existence. I’ve always wondered why God (or whichever Supreme Being… maybe the universe) gave me all this love and wonder to give to the world but also gave me lupus, limiting me, as if it needed to be balanced out. 

It also sucks because there’s not exactly a cause for this, it just kind of occurs in people, so I’m stuck between blaming myself and blaming my genes. The pull is greater towards the former, however, because this is the life I’m living now and, honestly, the best thing I can do is just make the load lighter on everyone.

I’m always thinking about that, even worse now with my health insurance expired. The monthly expense for my medication is budgeted at Php 10,000. The chemotherapy session I have every 3 months is also around the same price. My monthly laboratory exams (blood tests and urine) come up to Php 5,000 to Php 10,000. If I get major tests like CT scans and ultrasounds, that’s Php 20,000 and above.

Basically, it’s expensive to be sick. I’ve been incredibly lucky to have had health insurance up at this point, because of my parents working in multinational companies. But when I first heard the news of the expiry some weeks ago, it really made me question how I’ve viewed my life until now.

Being diagnosed with lupus in the year I turned 14 really pushed me into an autopilot of the mantra “I am strong. I can get through this.” And for the longest time, I did believe that. I have incredible mental strength. I’m resilient. I was diagnosed while my family was on the verge of collapse. I started chemo in 2013. I had an accidental overdose in 2014. I almost died in 2018. The hospitalizations in between diagnosis in 2012 and now. Every month, I visit the hospital for routine tests. I have regular blood extractions even though the needle still scares the shit out of me. There is a lot of mental preparation that comes with all of this. This has been my life for the past 8 years and I’ve survived through it all. 

But I only survived through it all because we could afford it. As a teen, I had my moods sometimes and this came in the form of skipping meds, as if one tablet wasn’t the cost of two whole meals in a karinderya.

I was mentally strong and resilient because I was privileged. I still am only strong and resilient because I'm privileged. I didn't have to think of the expenses growing up. Now I do. I acknowledge that privilege. I wish I knew better before.

I don’t have that safety net anymore. The insurance plans in the Philippines for people with pre-existing conditions suck and are even more expensive to maintain so we’d actually be better off not getting any of them. They only cover hospitalizations. For my case, I have more expenses with the outpatient work—blood tests and meds. Philhealth also only covers hospitalizations and not much of it either.

I don’t mean to say it will be hard to survive. My parents can afford my treatment and I will always be grateful for it. But it just makes me wonder, to what extent? Can I forgive myself for giving them this burden for the rest of their life? Don’t they deserve better?

Can I forgive myself for subjecting my boyfriend to this life, taking care of a disabled person? There is no cure to lupus. My boyfriend hasn’t actually had to take care of me yet, like bathe me in the hospital or hold back my hair when I puke after chemo or spend for me, because I’ve been careful not to show all that to him even 3 years and 10 months into our relationship. But someday, if he sticks with me long enough, he’ll probably end up having to. I don’t think I can forgive myself for pushing that responsibility on him.

Can I forgive myself for pushing my sister into even more anxiety? She’s already anxious enough, taking on all of the world’s problems. And she lives in Vancouver. I’m miles away from her. She said she’ll always worry about me even if I don’t want her to. And my brother, too, who is kinda emotionally constipated. Can I forgive myself for allowing them to live their lives in worry for me?

I know the lupus is not my fault and it’s unfair for me to think I would be responsible for how it impacts the people who love me. But, still, wouldn’t it be nice to lighten the load a little? It would be better, even, if I could lift the load off of them entirely.

But that always leads me to very bad thoughts that I believe I shouldn’t bring into this blog in case somebody who reads it will get triggered.

I always have these bad thoughts of disappearing permanently. At least that way, it’s just all in one go? All the pain it would cause to my loved ones, they’ll grieve and get over it eventually, right?

Sunset at North Zen Villas, Doljo, Panglao, Bohol. January 30, 2020

However, on my best days, I know it’s wrong to think that way and most of the time I snap myself out of it. I pull myself out of that dark place. I remind myself I deserve to live.

Kyle (the boyfriend) always reminds me that I have to trust the people who love me that they love me for the right reasons. That they don’t regret loving me and that it’s never up to me if they do. It bugs me because it’s not as if they stand to gain anything if they do. I don’t know if it’s worth it. But, again, that’s not my call to make.

(I wish it was, though.)

The rational part of my brain does refute these bad thoughts all the time. On my best days, I’m better than this. I even see a future for myself, something that’s hard to do given the unpredictability of illness, but I see it. Nothing concrete, of course, because it’s unpredictable, but I think it’s enough to be able to hope for a future. To be able to see myself waking up the next day. It’s always been hard to do that.

But the best days come and go and, when you’re deep in the despair of the bad days, waiting for the best days to come seems fruitless.

I try not to let it get to me, though. I hope that I will keep trying.

Always,

Claire

P.S. There is so much to be done in the name of healthcare and it affects each one of us, especially now in this day and age of illness and virus. The capitalist crisis is worsening and it is leaving more and more people to die. The healthcare system in the Philippines is weak and incompetent because it is not the priority of the government. We are one hospital bill away from poverty and you really would have to be blind to still not be angry about it. We deserve better than this. We deserve free and quality healthcare for all because we all deserve to live. 

Anyone who dies of illness in the Philippines is a victim of the healthcare system. Their blood is in the hands of the neglectful state.

P.P.S. #wordvomit from a person with disability (PWD). My city has an ordinance that gives a yearly Php12,000 allowance for registered PWDs. Php1,000 per month barely makes a dent in my monthly expenses but hell if I won’t utilize this. (I still don't know how to avail it, though, because of course the processing and inquiry for it is inconvenient for actual disabled people).

There really should be an everyday reminder for the government that the lives of PWDs are also their responsibility. We are already in the margins, and if the government keeps up its policy of willful negligence, then one day, even the margins will be erased.

What to Do with the Time (Left)

Back in September, I submitted a creative non-fiction piece to the University of the Philippines (UP Cebu) Creative Writing Program's first E-Zine.

I genuinely did not expect for it to get accepted but it was. The theme was "Literature of Fragile Environments and it was described as: The story of Covid-19 in Cebu has been mostly a story of numbers. The number of positive cases, number of deaths, number of recoveries, number of days under lockdown, number of quarantine violations, number of job losses. But this numerical approach to COVID-19 does not reveal the suffering experienced by patients, or the shared trauma of their loved ones or the healthcare workers, or the lived experience of the stranded students or jobless city migrants. These experiences, while not an easy story to tell, still need to be told.

My "fragile environment" was what it meant for me to be a systemic lupus erythematosus (SLE) patient in the midst of a pandemic, and what truths it made me reaffirm in the grand scheme of things.

It's called "What to do with the Time (Left)". I guess it's a bit pretentious with the parenthesis, but I think it really worked for my essay. I was playing around with the themes of time and distance as preparation for another literary anthology I was planning to submit to (I never got to do it). I tackled that in the essay, how the pandemic has made my genuine fear of time running out even worse.

And then I sought to tackle my place as a person with disability (PWD) against the backdrop of the rotten system that was only even more exposed at the onslaught of the virus.

I don't think this is my best essay, honestly, but if you have been reading this blog for a while, I'll let you be the judge.

My essay was also one of the 4 works turned into a podcast, which you can access on Soundcloud by clicking here. It was edited by a good friend who was also the podcast producer. She made me sound less like shit. Haha. I don't fare well reading out scripted texts, honestly. I'm monotonous as hell, and it even became the concept for a Soundcloud series I worked on a while back (but is also now defunct because Insecurity).

Anyway, I hope you'll enjoy that, whoever is reading this. If you prefer to read the essay, I'll place a preview and the link to the CWP E-Zine (it's free) below. Please do check out the other wonderful works as well.

I'm the most objective person I know when it comes to assessing my works, so believe me when I say it really isn't my best. But it is true. And it is genuine. And I hope it will give the reader insight into some of the struggles PWDs have to face, and how a collapsing system is also everyone's disability.

Always,

Claire

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What to Do with the Time (Left)

A few midnights ago, I watched the film Tune in for Love. Clicking on the movie, I didn’t really know what to expect. I like to read the synopsis of movies beforehand—it’s a way for me to ensure I don’t waste my time—but, with exceptions like this one, I went into it blindfolded.

In those particular days, I was feeling pensive and reflected a lot on my life. I liked the movie. I believe it's the kind of movie that should be watched after midnight, when the world is quiet and dark and serene. When the noise of the world has come down from its heights to allow me this space. Some movies just don't belong in the daytime.   

I shared the movie with my partner. He asked what it was, and I said it was a 2019 South Korean film set in the 90s to the early 2000s and that it went on for 2 hours. He asked me why I liked it and I replied it was because time and circumstance kept getting in the way between the two main characters, but they always found each other. Both Mi-soo and Hyun-woo never questioned their instances of separation and they also never questioned their reunions. It was the natural ebb of life for them. Their separation towards the end was almost permanent, until they didn’t allow it to be. They finally realized that staying together was their choice to make.

I didn’t realize how much I talked about stories like that until my partner said, “You really like stories like that, noh?” And I just replied a seemingly nonchalant, “Yeah, something about distance.”

But his comment made me think for a moment. I was diagnosed with lupus, an incurable autoimmune illness, in 2012. I was turning 14. Major changes like that tend to steer the trajectory in which one leads their life. For me, that’s what happened, anyway. So, I told my partner, “It’s my whole thing, I guess. I always want to tell people what I think and what I feel because I’m afraid I may not have the time anymore…and stories like these remind me how transient or how fragile time can be…I have lesser time in the world than most people.”

Continue reading here

Trying to Write Creatively and Finding Fanfiction in the Process, or Vice Versa

I keep wishing I’d been born just a little bit more creative. I’ve been writing from a very young age (and, unfortunately, in just the English language because my education is colonial enough to have me mastering the colonizer’s language before my own) and I’ve tried my hand at musical instruments and, hell, even art. But I always keep falling short.

Writing is the only thing I’ve stuck with. My short stint with a guitar was just that—short, give or take 2 to 3 years. My time with a piano was a one-time offer at best: I learned the stuff, performed the recital, and left everything at the stage because I never learned anything again. Don’t even get me started on my attempts at art, if they could even be called attempts in the first place. I can make subpar publicity materials on Adobe Photoshop and maybe mix and match colors well, but that’s about the limit to it. (Feels like it needs a ‘lol’.)

But writing, writing in English especially, comes easy. Rereading my old works, even the ones that make me cringe now, really has me believing that my grasp of the language isn’t all that bad, that I actually have facility for it. English comes naturally to me and, weirdly, writing comes naturally to me, too. I express better in writing. It was only in college that I got a little more articulate in speaking publicly, but, even then, I’d still write myself a whole script or speech and memorize it, even for mass protests on hot days where I’m tasked to represent my organization. This pre-written speech is even in Cebuano, my native tongue that I learned too late. (Side note: Join your nearest national democratic mass organization today!)

I kept writing, even when I’d fallen short at all the other attempts at creativity. I keep telling people that I wrote my first story when I was 9 and I remember it being about a cat, and that was weird because I hadn’t owned a pet in Cebu, much less a cat, until I was 14. We had Kitkat then, our precious shih tzu who died in 2017 and a baby I still miss very much.

The story about that cat, that I don’t even remember, was not technically the first thing I’d ever written. I had kept journals and diaries from the age of 6, or whatever age I was when I learned to write. You could say this was heavily inspired by Barbie Diaries. Using my allowance, I’d buy diaries with locks from the small stores outside of school. I would write almost every day—about nothing special in retrospect, but when you’re 9 years old and crushing on 5 different male classmates, everything was special.

I kept writing. People knew me in school as the one kid who writes. I feel like it was one of the reasons why I was chosen to participate in a preliminary exam where the student who would spell the most number of given words would go on to compete in an inter-school spelling bee. I went on to represent my school and won first place against 6^th graders while I was the only one in 5^th grade. It was cool.

After that, people saw me as someone good with words. By the first year of high school, or Grade 7 as we called it, I had a notebook (a “lineless” one, the sole Christmas gift I’d asked from my mother the year before, because pretentious me said I didn’t want the limits of lines) filled with writing prompts and original characters. I wrote so much that I managed to fill it by the time the 3^rd quarter of the school year rolled in and by then, it was also well-worn from being passed around so much among my classmates. For some reason, they enabled my shitty prompts and ridiculous characters.

“Good with words” was a tag that followed me well into college, too, but this was my own doing since I joined both the student publication and the university’s creative writing organization in the first semester of my first year, within months of each other.

You can say I really like writing. I mean, I spent these last 8 paragraphs talking about it.

In all seriousness, though, it’s my only outlet. It helps me make sense of the chaos in my head and I’m someone who’s very particular about organization, too, and more than anything, what’s in my head should be the neatest, cleanest, and clearest organization of anything, if nothing else.

So, it’s absolutely horrifying to come to the conclusion that even after all these years of trying to write creatively, I’m still bad at it. Once I realized I was bad at it, I promptly stopped writing (creatively), too. When once I could think up the most exciting and even romantic scenarios on a daily basis, now I’m crippled with my own self-fed thought: I just don’t write good.

Sure, maybe we can say it’s just the paralysis that comes after having your work critiqued (skinned alive, more like) in writing workshops with renowned, multi-awarded, and well-known writers, but you’re supposed to get over that in a few months or at most a year. You’re supposed to keep writing after that because that’s the point. I’ve joined and even organized not more than 10 writing workshops in my life. I’m always grateful for the critique I receive and I’m always excited to do my best again, but somehow, I just couldn’t then. I managed to edit some of my works that have been through the ringer at workshops, but they never are good enough. They don’t have that zing to it. I don’t know why I’m looking for a fucking zing either.

Last year, in August, I got into Korean popular music, or Kpop. Technically, I’d gotten into it in early May, during the hell-est of hell for a graduating student. It was the last stretch of the semester and I could only find comfort in watching performances of Blackpink. From there I branched out.

In August, I was introduced to the boy group Stray Kids. They are the love of my life now (sorry, Kyle! You’re my top 1, still). They’re the first boy group I’ve ever gotten serious on and really my bridge into Kpop.

Now, I’m not new to fandom. I’m a child of the internet and fandom is, quite frankly, all I know, so, in the same sense, I’m not a complete stranger to fanfiction. I love it. I’m an avid consumer of it. My friend calls me the “secgen” with how I organize my SKZ (shorthand for Stray Kids) fics recommendations into a meticulous list (actually, twitter thread) of fics per pairing/ship, complete with short summaries, tags, and links to each fanfic.

I’m not just good with words; I know how to love and appreciate them, too, hence the meticulous list of recommendations.

It wasn’t until I read the most perfect fanfiction of one of my favorite SKZ pairings (when we cross at intersections; seungjin) that I decided I would write fanfiction, too. For the first time in my life.

I’m not new to fanfiction but I am new to writing it. One psychometrician board exam passed and one oathtaking ceremony later, I managed to write a fic, with much, much encouragement from a friend, of course, who is also into Kpop and likes fanfiction. She had to deal with my overthinking and for that, I was grateful.

I posted that fic on January 2020 even when it was supposed to be a Christmas and New Year fic because my anxiety got the best of me and I took too long to finish it. I still did, anyway, which I consider a wondrous feat in itself for someone who hasn’t been writing creatively. As I said in my author’s note, it was my first time writing fanfiction and it had been 4 years since I last wrote fiction in general, not to mention it was my first time writing in third person, too, and in present tense.

I don’t think my fic is any good. I still find many things to hate about it. But I’ve posted it. I’ve received some comments and several kudos and it really lights up a fire that’s long been dead inside me. Fanfiction is nice in the way that there’s always an audience, a market, for it, so you’re always sure someone, at least one person, is going to appreciate the content you produce. I like that I write fanfiction. It’s fun and interesting and while I do still wish that I had the ease of practice of several of my favorite fanfiction writers, who have been writing for years, I still like to think that me writing fanfiction is a win.

I don’t think I’ll ever find a creativity that’s enough for me. A work of my own that I find good enough. I don’t even know my own writing style. I flit from one style to another, depending on whose work I’m reading. A panelist told me in one of the workshops that when you start out with writing, you always end up mimicking other writers’ voices before finding your own. I’ve been writing for years and I never found that voice. But I truthfully don’t think I’m in any place to stop searching now.

I got myself out of a dark place recently. I’ve managed to watch TV shows and continue where I left off from last year, and I’ve started writing again. Just recently. There’s a lot of hurt and anger from everything that’s happened to me that I haven’t processed yet—because I’m still too prideful to seek therapy but also self-aware enough to know I need it—but maybe, or at least, when I’m writing, the weight gets a little lighter to bear.

Always,

Claire

8th Lupus Birthday

I was born left-handed.

I am not entirely sure if that is something you are born with or something that you pick up from your surroundings so let’s just say I was born with it. I’ve lived my whole life with a left hand on my pen, on the ladle I use to cook, the spoon I use to eat, the chopsticks I learned to use, and the elastic that ties my hair. Even the foot I used to kick a ball during my brief stint of soccer-baseball in freshman year of high school was my left.

It was never really a problem. One of the times I remember it being annoying to me was when I’d bump my elbows with my right-handed seatmates—nearly the entire class—in Grades 1 to 2. By Grade 3, we already had separate armchairs. Another instance is whenever my mother would tease me while I’m cooking, saying I looked awkward holding whichever cooking utensil. It’s all just mundane memories and doesn’t really affect the way I live my life or how I see it.

Up until the hospitalizations, of course.

I’ve been hospitalized enough and have been through enough pulsing therapy (chemotherapy) to know that it’s standard protocol for hospitals to create the IV insertion site on your non-dominant hand. This makes sense, of course. It helps you navigate your surroundings despite being attached to a dextrose. But I’ve also been hospitalized enough to know that my right hand has the thinnest veins. There have been many times, especially in the past two years, that they’ve had to insert into a vein in my left hand.

This paralyzes me, especially when trapped in a hospital room and having to rely on my mother to bring me to the restroom or to bathe me or to change my clothes for me. I’ve felt helpless countless of times—it tends to happen when you carry an autoimmune illness—but nothing compares to the helplessness I feel whenever my left hand is out of commission.

Some days ago I was making gyoza for the first time. One small dumpling involves so much prep. I chopped vegetables for over an hour, to the point that the spots on my hands where my joints are have turned pinkish or red. They kinda hurt, too. The worst was the actual dumpling. Pleating the dumpling wrapper was already hard in itself but pleating with your left hand especially when most tutorials showed right-handed individuals was an entirely different bridge to cross. I even remarked to another left-handed friend that day, “We really live in a right-handed world.”

There’s a disconnect there from the rest of the world. A computer mouse is placed on the right side so I grew up using my right hand to navigate the web. The knobs that turn on stovetops are turned to the left. When left-handed people use their left hand to turn that switch, we’ll look weird and our shoulders will make all kinds of funky shapes just trying to turn one burner on.

There’s a disconnect from the rest of the world. An asymptomatic lupus patient navigates the world on the same pavements that healthy people do, looking normal, living normal, and yet there is a disconnect.

I definitely can run, but not as much as others do. I can stay out in the sun, but only briefly. I went through the motions of school and college and lived my life as a student as normally as I could, but it never played out the way others’ did. At one point, I was an officer and member of six student organizations in college just to compensate for this. I always lived my life trying to do what I want whenever I could and even sometimes beyond my limits, because I could never know if I would be able to do them again.

I was asymptomatic for a long time. It was easy to ignore my limits when I couldn’t see them. I pretended not to have them. I pretended so much that I almost died from it, in 2018. Now, two years later, I’m still spending the majority of my days recovering. But that’s a different story and it’s a story I’ve already told.

Today, May 21, I celebrate my 8^th lupus birthday. It’s been 8 years since my official diagnosis. I only remember this because I’m a serial documenter. A year after I was diagnosed, I found my 14-year-old self’s journal and I had written about the diagnosis. I don’t remember what I wrote (or I’ve repressed it), but I remember the date. Since then, I’ve always considered my diagnosis my second birthday.

I don’t always write a post during my lupus birthdays. I think I’ve only written one once before this. But every year, if my schedule permits, I go out to eat alone. Pesto buttered porkchops from The Brown Cup is my go-to but there were other places before I decided it was my permanent lupus birthday meal.

My parents first didn’t agree with this concept. I think they found out on my 4th lupus birthday, when I was well into college. I think it made them sad so I understood that. My sister and I explained to them the rationale behind it—it’s just me celebrating surviving another year.

A few days ago, when I announced my lupus birthday was near, my mother and my brother asked me why I don’t celebrate it with them, like you would a normal birthday.

In truth, I like celebrating it alone, treating myself to a meal alone, because it is still a lupus birthday. I don’t want the real birthday fanfare over celebrating my diagnosis with an illness that I’m still not sure I can be truly okay about. It’s already the 8^th year and the anger I feel still feels like it’s the first.

It’s a truth that’s hard to swallow. Every day is different for me. I never get to know what happens. This makes it harder to accept and each time something unexpected happens because of the lupus, I feel angry all over again. I never get to plan out my day ahead of time because once my kidneys decide out of nowhere that they’re tired and want to go to bed, I have to go to bed, too. This is particularly frustrating for me as someone who needs plans, as someone who’s so detailed with the way I spend my day. But I got to work around it, especially in college. I learned to take each day at a time, learned to troubleshoot whatever came. I even learned to schedule my rest.

I applied for a person with disability (PWD) ID card in the 7^th year. Just last year, a few months after turning 21. It’s a testament of my denial of it. But I see my ID as a symbol of me finally processing things and truly confronting what the lupus is to me: I have lupus. It is not just a mere nuisance in my life, no matter how much I try to separate myself from it or deny it.

But I am Claire Obejas.

In many ways, just like my PWD ID, my lupus birthday is just a symbol. Something I can look forward to for the first half of a year. I can at least look forward to my actual birthday in the second half.

The lupus birthday doesn’t really mean anything. It’s a made-up thing.

I still feel giddy anyway. Labels and names must mean something for someone like me, whose major love language is words of affirmation.

I need to celebrate as many things as I can while I am still able to. Even this entire write-up feels like something I should be doing for the 10^th year, but with lupus, I never get to guess if I’ll get there. I’ll just have to get there.

***

For my “birthday” wish, a tutorial on pleating gyoza would be nice.

Always,

Claire

The world made small.
Anda, Bohol. April 2017.

[Also found on Medium.]

Loneliness and Aloneness

The other night, I had dinner with my brother, his girlfriend, his 2 friends, and my boyfriend.

It wasn't a formal sit-down or anything. The indignation protest against the illegal arrest of 5 activists in Tacloban City, Leyte had just ended and I was in UP Cebu when my brother texted for me to eat at home because his friend, a culinary graduate, is cooking dinner at the house. It was also just timely that my boyfriend was also coming over that night. He had only met my brother's 2 friends once before, around the early months of our relationship nearly 3 years ago.

We had chicken stir fry, by the way. It was really good and we enjoyed toasted sesame seeds, leftover chocolate lava cake, and leche flan amid all the banter and light conversation.

Later, when my boyfriend and I retreated to my bed (I share a room with my brother and his girlfriend), I explained to him, in relation to our conversation over dinner, that this was what I grew up with: my brother's best friends coming over, them cooking (one of them just lazing around choosing a movie), playing on the PlayStation (back then we had a secondhand PS2; now they play on a PS4), and having sleepovers. I distinctly remember one summer when they stayed at our house for weeks and only going home at times to their respective houses. 

Our house then (in Bulacao) wasn't even necessarily a big house. It had two stories, but the upstairs space was mostly taken up by the master's bedroom so they really only had the combined living room and kitchen area to move around in. And even then, they still gravitated towards our house no matter what. And we lived in a different city, too, (i.e. not anywhere near downtown) and distance still wasn't a concern to them.

After explaining all this to my boyfriend, he, as perceptive as he is, said, "Is this why you always want people to come over to your house? Because you grew up seeing that with your brother and his friends?"

I was silent for a moment. It was true. Back in Bulacao, I always tried to invite friends to come over. When we transferred to Lahug, I always presented to hang out at my place after a night of dinner or drinking with my friends. I never related it to seeing my brother's friends a lot growing up, though, because I had long accepted that my brother, as a known "cool kid," would always have the livelier social life than me.

That night, I had come from intense emotional turmoil stemming from a round of arguments with my parents after news broke of the 5 activists—people I know personally and can therefore attest to not being terrorists, criminals, nor armed—getting arrested so I was being pensive and somewhat melancholic when I replied to my boyfriend with "Is it obvious how lonely I am?"

 

"Noooo, don't say that," he said before hugging me. Well, hugging into me as he basically ground himself into my shoulder.

I hadn't thought about being lonely in a long time.

I grew up convincing myself that I wasn't lonely, as lonely was a feeling. I preferred to anchor how I viewed myself on objective data: I was just alone, but I wasn't lonely. So I never used the word 'lonely' to describe myself. I mean, I had friends and I understood they had lives of their own (in elementary school, this meant they were picked up earlier than me) so I didn't mind then if I ended up alone after a school day. You could say that I got used to it. 

I also did things alone. I still do things alone. I work better as a one-woman team. That makes it sound like I'm bad in a group, but up until 2018, I never learned how to properly delegate workload without slight micromanaging. I don't know how no one has cut off my head for that. I learned how to do most things so I would never feel the need to rely on other people and I suppose that's the irony, because I keep getting elected in leadership positions in organizations that need me to rely on other people.

In hindsight, being in leadership positions made people talk to me. I had always looked intimidating to people. Throughout elementary and high school, I was told I had a 'resting bitch face' so people were always scared by me and they didn't mince words telling me this, which I appreciated. And again, weird, because as soon as I entered college, people would tell me I had a baby face and that I was 'so cute.'

Now I wonder what my life would have been like if I didn't have leadership positions, if people didn't see me as a responsible person or groupmate. Would people have talked to me? Would they have made friends with me?

I'm just at that point of my life where I'm finding it hard to believe that there are people who truly enjoy my presence or that there are people who genuinely like to talk to me or hear what I say. That throughout my life, people were just scared of me.

At the height of friendship problems when I was 16, I once tweeted, "Loneliness is a hollow pit in the stomach that cannot be filled." If you ask me if I still feel that way, I'll tell you honestly that yes. I do. I have operated alone for most of my life. As a child, I didn't have friends. We kept transferring, too. And I didn't know how to make friends in new schools at the age of 7. But people talked to me anyway. Ended up getting elected as class secretary from Grade 1 to Grade 10 for some reason. I just don't have a measure of whether they actually like my presence or not and it's probably better that I don't because then I'd spiral and feel bad about myself. 

Since being told I was scary or intimidating, I have always tried my best to become a comforting presence. To be a presence people liked to be around. I wanted to make them feel comfortable with me, no matter how long we've known each other. But even now at 21 years old, I still make people anxious and more often than not I end up berating myself for it. Maybe I should just go on and accept that I'll never be as sociable as my older siblings and so I'll never be as likable. (Because of this, I also try my best not to feel bad when my friends go out and they forget to invite me. I try not to mind because I do understand I'm not the most fun person to be around.)

But this is probably overthinking. I have friends. I have many good friends, in fact, who love me and care for me, and even strangers on the internet who I have made friends with have expressed care and concern for me. My siblings, in their oddest ways, have always shown they love me. Even when they move out of country. 

I still do nearly everything alone now, especially after graduating and most of my friends either staying at home in the province or having work in the daytime. My 'aloneness' becomes more salient when I encounter emotional turmoil, like that episode 2 days ago, when I realize I have no one to run to. I don't want to keep running to the same person (in this case, my boyfriend) for fear of suffocating them. In the same sense, I don't want to burden my friends.

But these moments are often fleeting and as someone in her early 20s, there's more intense versions of this feeling coming for me.

I hope an entire two decades of loneliness and aloneness has prepared me for it.

 

Always,
Claire

P.S. This is obviously not the best thing I've written, but I wanted to get it out there. I know I can write about loneliness better than this, but maybe when I do, it wouldn't be on this blog that has become a dump site for word vomit. Forgive me, if anyone still reads this.

P.P.S. There's much to tackle about the illegal arrest of the 5 activists that I could not really incorporate as well as I should have in this blog post. But you can read several statements here: College Editors Guild of the Philippines Cebu (CEGP Cebu) | Altermidya - People's Alternative Media Network | International Association of Women in Radio and Television - Philippines | Rural Missionaries of the Philippines | Karapatan Alliance Philippines | When the Storm Fades | Katipunan ng mga Sangguniang Mag-aaral sa UP (KASAMA sa UP)

These human rights defenders can only ever plead 'guilty' to the crime of serving the people.

Some notes on being 'red'

(This personal statement was posted on my personal Facebook account on April 4, 2019 at 11:12pm. What is in Facebook is also what is found here.)

I'll be honest, I didn't want to have to make this post. But I realized that this is my last semester as a student and, after I graduate, I'll be focused on a different sector anyway.

Before I begin, I'd like to say I don't hope to answer all the questions regarding the issue with this personal statement alone. It's likely that whatever questions you have have already been answered by the Tug-ani statement, which can be found here.

This personal statement has felt necessary after the Union of Progressive Students (UPS) publicly questioned the integrity of Tug-ani, the student publication that I am an editor of. I am name-dropped in their statement and, while I am not privy to their private conversations, I can only assume I am name-dropped there as well, even those conversations instigated by their Carolinian friends.

You can check out both our statements if you'd like. However, I'd like to raise this discussion beyond the issue at hand since I feel that this is the underlying concern here.

It's no secret that Tug-ani, along with several other student publications throughout the UP system, has always been tagged as "red-leaning." One of the worst things that have been said about Tug-ani in particular is that we are the "mouthpiece of Nagkahiusang Kusog sa Estudyante (NKE)."

I have been a member of Tug-ani since 2015, since my first semester as a UP student. At this time, I was still a centrist. I still believed in shit like "Violence will not solve violence." and other related sentiments. I would run away from walkouts, not realizing the importance of such demonstrations. But joining the student publication pushed me out of my comfort zones. The first press conference I covered was about the Kidapawan massacre. Carrying that much knowledge and anger for the perpetrators of the massacre is a weight I carry to this day. The first protest I covered was against the vetoing of the SSS Pension Hike. And since then, I only went up—I covered more protests, more press conferences, more people's issues.

The longer you cover people's issues, the more you understand the need to struggle. The need to fight. The need to take up a stance that seeks peace based on justice.

And for this analysis of issues, they have called us "red." But what does it mean to be "red"? Is it calling to junk STS instead of reforming it because any form of tuition collection is still a manifestation of the lack of free education? Is it going to the communities, learning about the lives of the basic masses? Is it integrating with farmers, living with them for a day, and learning how they do their daily work? Is it going to demolished communities and reporting about their current state because no mainstream media outlet would give the marginalized airtime? Is it organizing educational discussions about sociopolitical issues and organizing protests to show great dissent? Is it covering protests outside of school, knowing it is one of the only ways we can get in touch with what the masses are calling for? Is it calling for an end to contractualization that continually puts the lives of workers at risks? Is it joining in workers' strikes not only for documentation but also for support, because you know that the workers need warm bodies in a time of strike?

What does it really mean to be "red"? Because this is the work that we do in Tug-ani: as alternative media, we chronicle the story of the students and the people. Not only that, by raising the discourse, we join the struggle. As a publication built by the students and for the students, the only bias we can have is towards them, towards their calls and concerns about the basic masses, towards the threads of life that move them.

And as an organizer, this is the work that I do. ANYONE, even those who have questioned my integrity as a student journalist, can attest to the fact that I have been active all-year round. I have invited all of you to the integrations, gatherings, EDs, and protests that I am invited to. Sometimes, I am not given a response. Sometimes, not even a "seen" and yet I continue to drop messages in your inboxes, post invites in our groups, hoping that one day, through ceaseless and tireless persuasion, you'll join the struggle because I know that, in the final analysis, you are not a class enemy and I have no business isolating you.

But if this is what it means to be "red", if being one with the struggle of the masses is what it means to be "red", if finding myself among the workers, peasants, drivers, the urban poor is what it means to be "red", then what does that make you? How and where do you stand? What do you stand for?

When you have an answer, come find me.

All 4 years in this, I have found myself among the people, have tried to bring their stories to the students of UP Cebu and to everyone that our Facebook page may reach. Even you, those who question my integrity, would attest to this. You know where I've been. You know what I've done. And you'll know where I'm going.

Come find me among the workers, peasants, and the basic masses—when you're ready.

"Doon sa mundo ng mga gutom - doon tayo mag-diskusyon."

LINK: On Medium

What About Recovery? A year-ender account about almost dying

I'm still in recovery, but I owe myself this story.

October 2018 at Pundok Katitikan: Conversations about Creative Writing

When 2018 started, I almost died. I wish it was an exaggeration or an effort to make this story more dramatic than it really is—even the realization only came months after I came out—but after spending the first three days at the hospital surviving on nothing but the dextrose bag, it places things into perspective.

On my brother's 23rd birthday, I was rushed to the hospital because my stomach was hurting, similar to the pain you feel during a hyperacidity episode. Except we later found out it wasn't hyperacidity because the usual "sit up straight so the acid goes down" didn't help ease the pain. My parents and my brother had dropped me off at our condo and they had actually already reached our house in a different city when I called and asked to be brought to the hospital. I had puked my entire dinner—sushi, tempura, and miso soup—and I left the sink smelling like vinegar.

I could barely stand from the pain. Curling up didn't actually help it, but I didn't know what else to do. I wanted to poop as well, but nothing would come out. The pain just kept on coming in waves.

I think I spent 5 hours in the emergency room. I was placed in reverse isolation because of my lupus. I couldn't be placed anywhere near anyone who was carrying any type of illness. Even the simplest fever was already contagious for my immunocompromised self and, given that it was late night in January and the New Year blues was starting to roll in, sick people arrived in groups.

They couldn't figure out what was wrong at first. I was given antacids, Gaviscon, but I'd puke it out. I was exhausted, but the pain kept me awake. It was difficult and everything was starting to look blurry. Pain like that really messes with your head. I don't even remember being brought to my hospital room. I only remember being in so much pain.

The pain didn't stop when I got to the hospital room, though. The warm compress they gave me helped a bit but not always. I tried to eat several of the soft food I was prescribed to eat, but I could only puke it out. I wasn't allowed to drink water, either, because it would mess with my stomach. I was so thirsty because all I did was puke. I'd look at the bottle of cold water on my bedside table and feel like crying. I was kept hydrated through the dextrose.

Never had I been so deprived of water before. I had never felt that much thirst before.

This went on for the first 3 days. No food nor water would come in, but I kept spontaneously defecating through my pants and my shorts as my stomach started healing. I kept puking. I couldn't control the defecating. For the very few times I did have a semblance of sleep, I remember wishing to die instead. I was so tired.

By the 4th day, I could bring down some of the food. I could take sips of water. Things were starting to look up, but of course, being a lupus patient, it didn't stop there. The shit my stomach went through caused a flare in the lupus and I was faced with the monster version of something I'd been suffering from for years: lupus nephritis.

My kidneys stopped doing their job. They got tired, like me. I couldn't filter and pee out any of the liquids I drank. The dextrose liquid went straight to my feet. Later, I was told it could've led to kidney failure.

My feet swollen from the edema, February 2018

I'll spare all the other gorey details, but here's what needs to be known: they transferred my IV insertion site three times. I cried for all of these three times. I got an endoscopy. My stomach had existing lesions because of the maintenance medication I'd been taking over the past 6 years and the sushi I ate, because of the vinegar in the rice, triggered a reaction and created a hole in the lining of my stomach. They had to sedate me for the endoscopy. I woke up in a different bed with no memory of what had happened. It was all so surreal.

The final diagnosis was acute gastritis with moderate dehydration, hiatal hernia, and, of course, lupus nephritis. I left the hospital with my entire body swelling from the edema. I was, essentially, a PWD. I couldn't walk without the help of my mother or anyone else. I had to take 14-17 tablets in a day because I had insisted on getting out of the hospital despite the fact that I hadn't fully recovered. I was desperate for any sense of normalcy. I wanted things to go back to the way they were.

But, of course, they couldn't. This was a flare so impairing that I had to go through chemotherapy again. For the first month out of the hospital, I had to limit my water intake to just a liter per day because my kidneys couldn't take the load. I'd sometimes wake up with a swollen face. I'd sometimes be shaken awake by late night arthritis attacks, like cramps that wouldn't stop. I couldn't walk properly and every time I sat down at a group meeting for a project, I had to elevate my feet. 

My anxiety worsened. I started to have panic attacks in the middle of doing homework at night. I'd snap at people I love. I'd yell at my parents and I'd fight with my boyfriend. I was being difficult and no one could understand the position I was in. I was just so angry. I was just so desperate for things to go back to the way they were.

Me with my brother, February 2018. My face is swelling here

I wanted things to be back to normal. I still went on with school as normal, only missing the first two weeks. I even wanted to go back to my org work (I was handling 4 organizations at that time), but between going to the hospital and handling my academics, I could only do so much. Still, I tried my best, anyway. I helped out with the student movement with small things like writing statements and creating pubmats. I helped out with the creative writing organization and the student publication especially because I have positions in both. I managed to stay on top of my academics as well. I even went on to do my internship. 

It was weird to do all this post-hospitalization. The time in the hospital really messed with my head. When I got out, I couldn't remember how I interacted with people. I couldn't remember what I was like. For somebody so self-aware, this felt like I was losing control of myself. I couldn't remember some names. It was all so weird. My boyfriend calls it being "unhinged" and I think that's the best word for it. I was unhinged.

[photo]

March 2018. I had cut my hair short because it was starting to fall off because of the flare (not the chemo).

Despite my best efforts at keeping everything the way they were, nothing could ever be the same. I was in denial. Some days I think I still am. I cried a lot. I couldn't grow hair. I think I didn't have armpit hair for 5 months. I couldn't accept that I had gained so much weight in so little time. I went from 46kg to 56kg in the span of a week. I had already had weight and image issues way before I even knew about the lupus so to have this happen to me was a huge blow to my self-esteem. It didn't help that, months before that, I had gone on online shops and looked for nice clothes and dresses, outfits that deviated from my usual shirt-and-jeans. I was consciously taking the step to be more confident in myself, but the lupus killed it instantly.

December 2017. See? I was starting to wear cute clothes.

To this day, I'm still trying to lose all that weight and it's difficult to see the silver lining in everything until I do. I know, it's a shallow concern when compared to almost dying, but all my life I've been told that fat is bad, that fat is shameful. I grew up thinking I was fat when I wasn't and when I did get fat, I could only cry for that lost time.

July 2018

I was depressed. I think I still am, even worse now that the one year mark since I was brought to the hospital is nearing and I'm still far from recovering fully. On my boyfriend's birthday, I sent him a letter about how grateful I was for his existence and part of it included a confession: if not for him, I would've already killed myself by April.

(Of course, my family and my friends factored in my decision not to kill myself, but, hey, this was a letter for my boyfriend.)

This is what movies and books don't tell you: recovery is ugly. I hate every second of it. I'm not the type of person to have regrets, but, boy, do I regret eating sushi on my brother's birthday. I feel guilty that I can't seem to be happy that I'm alive and I'm surviving, but this incurable illness made me taste what it was like to be "normal" and then it took that from me all of a sudden. It was like standing on a rug and having it pulled from under me.

Most of all, and I only realized this recently, I hate myself. I am angry at myself. I blame myself greatly for almost dying. It was my fault in the end. Before that whole thing, I had been skipping meds, one of them I secretly stopped taking for a year, which contributed to my kidneys never getting better. I skipped meals. I pushed myself to my limit. I never knew what limits meant. I always just treated the lupus as a minor inconvenience, not something that should be handled with utmost care. I didn't want it to become a hindrance in my life. I guess I was in denial. Six years in and I was still in denial.

This is weight I still can't overcome. Some days I still imagine myself jumping from the balcony of our condo on the 14th floor. I never do it, of course, but I came close one time, just recently. I hurriedly booked an Angkas that night to go eat my favorite meal—pesto porkchops from The Brown Cup. I don't know what I was thinking. Probably a last meal of sorts. But I got to the coffee shop and found my brother and his girlfriend there. Somehow, it was the universe telling me something.

I've just finished my first semester as a graduating student. It was a tumultuous semester. I had thesis, a training subject, 6 organizations, chemotherapy, regular hospital visits, all my other subjects, going out with friends, and several family matters. But I'm proud of myself, anyway, for surviving. I became what I would call a "scheduling god." I'm still on regular status despite the lupus. My Psych professors wouldn't allow me to give up on myself. They did their best to help me, allowing me absences and considerations for their classes. It was kindness like this that would push me to continue.

Indignation protest for the killing of the 9 Sagay farmers

My mom was the most patient with me. She stuck with me throughout the first few months of my recovery, ugly moments and all, until she eventually had to go to Bohol to be with my dad. I try not to let her worry too much by taking care of myself. Her patience is helping me recover, too.

Somehow, I managed to accomplish a lot this semester. I became a mass leader and started speaking at protests. I still continue helping organize the national democratic movement in my city in between chemotherapy sessions and hospital visits. I couldn't let the lupus take me away from the important work of liberation. If I was having difficulty with my illness, imagine everyone in urban poor communities or in the countrysides who remain undiagnosed to this day. I am sick, but I'm still privileged.

December 2018

I did a lot, some beyond my limits, and maybe it's overcompensation or me making up for the lost time, but I now have tons of backstory to bring with me to the future. This post is already long enough as it is.

November 23, 2018. Commemoration of the 9th anniversary of the Ampatuan massacre

I tried my best to summarize this whole experience, but recovery can't be placed in a nutshell, especially when you have an incurable illness. Every day is different for us. So maybe this is a work in progress, like I am a work in progress. I'm happy and thankful for everyone who has continued to support and love me. I promise to do my best to do good by all of you. You all took part in helping me recover.

I hope 2019 brings itself more wonderful experiences. My strength was tested so much in 2018 that I don't think there's much left to test. I like to think my spirit is ten times more unbreakable now, living up to my self-proclaimed title of being an "Unsinkable Ship." I cry easily, but I always get back up.

The lupus couldn't bring me down.

Always,
Claire