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

What Do I Know?

“You ever wish you didn’t feel things so intensely sometimes?”

Now, there’s a question you don’t get asked often. Even worse, there’s a catch: it’s not something you can answer in one or two words.

Pretty easy to formulate it, though. You find a girl and you realize she cries over pictures of cute puppies or the thousandth rewatch of Love and Other Drugs. You discover she cried for 4 days out of the 6 that you were away on field work. You look back to that one fight you had and you realize how petty it was. How she’s a child. You’re 4 months in and then you realize maybe this isn’t what you signed up for. You knew she was sad, but you didn’t know just how much.

Funny how some sentiments resonate through the stories we tell of other people. “Hey, you know,” you started telling me while in the middle of discussing a friend’s failing relationship. “He knew she was sad. I mean, he said he expected this.” You paused after this. I realize now you were trying to find the next line’s least damaging form. “He just didn’t expect her to be this sad. You know what I mean?”

I do know.

Still, I can’t help but think that maybe the only time we mean what we say is when we’re not using words of our own. We write love letters and somewhere down that letter, there’s always a quote or an homage from a book you like or, at least, read out of boredom. We get into fights and write long, winded messages on the technological apparatus afforded us and, still, we find ways to use the words of other people. We write prose and still we quote Hemingway or Fitzgerald or Parker. Maybe, when we write, we’re not meant to make legacies of our own the way they have, because we only speak in borrowed words.

So. You ever wish you didn’t feel things so intensely sometimes?

The short answer is no. I wouldn’t know happiness otherwise. The long answer, however, is yes, because number one, to have a “long answer” is the only justification for an even longer explanation.

See, this girl, she cries watching Love and Other Drugs because, in the gritty reality, sick people are difficult to be with. This girl, she cries over puppies because they make her happy. Her temperament is melancholic. Her primary response is to cry. She would not know herself otherwise.

This girl, she’s emotional. She can’t make rational decisions when it’s her heart that carries all the weight and not her brains. For all her acclaimed smarts, she sure can be pretty stupid. You find a girl, you see something in her — only God knows what — and you decide that, hey, this doesn’t seem so bad. She doesn’t look that sad.

But five months down the road and you realize she is. You won’t allow her to put words in your mouth or put assumed regret somewhere in you, but she knows. You won’t say, but maybe at some point, it was what you were thinking.

See, this girl, she absorbs the sadness of other people. She breathes in the dark of other people and carries them as her own. It’s a black pit she keeps filling. She doesn’t tell. She doesn’t open up. Not as much as she used to, at least.

You give her power over you, this piece of shit we call love, and you know you’re only signing up for the sadness. So you do your best and ask her you ever wish you didn’t feel things so intensely sometimes? in an attempt to find the reason you’re involved in this madness.

She wishes she could control it. You find out that she can’t. You put up with it. You think she’s a child. You think she’ll grow up. But you’ll grow white hair and acquire a limp and she still won’t get past the six-year-old that thrives inside her. You give her attention and you’re only watering the seed of a child who won’t grow.

And then, one day, you won’t do any of this. You won’t ask, you won’t give her the time of the day. You’re tired and you just want to sleep.

But you get a poem. You find it in the mail.

She says she’s sorry.

Always,

Claire

On Medium.com

Building. Rebuilding.

This was the 3rd journal entry in my Literature 3 (Literature, the Individual, and Society) class. We were discussing solitude and our professor asked us to include the following lines from Khalil Gibran's Mirrors of the Soul in our journal and write a reflection from it. This was mine:
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Flying over San Francisco, California, July 3, 2016

"Your inner soul, my friend, is surrounded with solitude and seclusion.
Were it not for this solitude and this seclusion you would not be you and
I would not be I. If it were not for that solitude and seclusion, I would, if
I heard your voice, think myself to be speaking; yet, if I saw your face, i
would imagine that I were looking into a mirror."
- Khalil Gibran, Mirrors of the Soul

Khalil Gibran speaks of solitude as a friend and I believe this is the only proper approach to solitude. As something that seeks to help us rebuild ourselves, solitude is a friend that only wishes the best for us.

I can testify to this. When I was in a relationship, we spent as much time together as we could. Every time we went out, we always enclosed ourselves in seclusion. We were better alone together. When he left me, I found it difficult to put myself back together. It was my first break-up (meaning: one that I did not initiate) and I did not expect that it would hurt that much.

The journey to self-recovery started with earphones. After spending a whole year sharing one pair of earphones in the jeepney while his music played, there was a kind of healing felt in being able to listen to music in the jeep alone, to be able to place both earbuds in my ear and feel the weight of all that had transpired. This propelled me to learn to spend time with myself and to get to know this version of myself after the break-up. A stronger, better, and much kinder me.

I think that is what solitude does. When once I only learned to build homes in other people with scraps for foundation, I have now realized that my strongest foundation is within me. I learned to build my home in my hands, my heart, my brain.

I am my own home.

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RELATED WORK: "Details" on Medium | "Details" on Blogspot

Andromeda's Time to Leave

I've always known what I wanted to do in life with anything that concerns family. I've always had everything mapped out for me. I am that kind of organized—even the future is already planned.

January 4, 2017
Basic masses integration (BMI) with the farming community of Brgy. Calsadahay, Tanauan, Leyte

While I still retain these characteristics, dreams and plans don't quite stay the same the older you get.

I'm not as consistent as I'd like to be as far as relationships with other people are concerned. But one thing I know I've always wanted is children. (Not now, of course. But at some point.)

By the time I was 12, I decided that I loved my then-6-year-old cousin so much that I wanted children of my own. A child I could care for and protect and love to the best of my being.

When I was 15, I decided that, if my first child was going to be a girl, she was going to be named Andromeda so that her nickname would be Andi (based on Diandra Xenia "Andi" Alpers from Jennifer Donnelly's Revolution). This was maintained for a long while. Almost all my friends knew this. Andromeda, though non-existent, became the symbol for my motherly aspirations.

In 2015, I found out that, because of the lupus, it would be hard for me to give birth if I wanted to in the future. It wouldn't be 100% safe.

And it could even cost me my life.

That took a while to sink in. I think there is always that fear at the back of every girl's head that giving birth is scary, not to mention extremely painful. But I was willing to go through all that if it meant I could have children of my own.

So when I was told it would be too risky, it fell heavy on me. This was something I was always so set about, something I knew I really wanted regardless of the consequences. And when I was told it couldn't be, it felt a lot like a rug being pulled out from under me.

Even then, I was still hopeful somehow, if the List of Names for Future Children I kept in my phone was any indicator. Another girl would be Valerie June (from June Carter-Cash, because I am a low-key Johnny Cash fan) and the first boy would be David Emile (from David Emile Durkheim, but for no particular reason; it just sounds good). I updated the list at some point, though. I renamed it.

"List of Names for Future Children (disregarding the fact that I can't have any)"

After more thought on it, I did understand the risk. I have lower pain tolerance compared to most people I know. I imagine childbirth to be something I'd be physically unable to do. There was also the consideration for the upbringing of the child.

The more I thought about it, and the more I dived deeper into my Personality class, the more it felt inevitable that I'd become an abusive parent at some point.

It hurts to think that this would be one of the foremost legacies of my parents, of most Filipino parents who don't realize the abuse, and it hurts more that it is all the more difficult to rectify this. It is already bordering wishful thinking to believe that this generation, my generation, could be the game changer.

"Why do you want children?" I don't know either. But I figured that if other children that aren't my own could make me so happy, what more could my own do? I've really considered it all: the caretaking, the diaper changes, the feeding, the eventual distance as they grow into adolescence. The inevitable reunion. The connection only felt with family.

Maybe, in a way, the want to have children stemmed from the need to rectify my parents' shortcomings.

I know, I am only turning 19 this year. It is too early to think about this. I don't even have a significant other. There's no certainty even with marriage. I am still recovering from the trauma of my previous relationship. There is still fear. There is still the anxiety that comes with it all.

But I am someone so organized that I plan ahead. I always plan ahead.

With that, I also crush my own dreams before anyone else could. I let go of plans that I've been set about before life decides to reject it for me.

This is a goodbye to the children I could never have.

Always,
Claire

[on medium.com]