Trigering World

Instagram Story on my Personal Instagram from the beginning of 2021

One of the fundamental things that people do not understand is how the world changes over the course of a non-able bodied person’s life. How it fundamentally changes the moment their body starts feeling the disease/disability’s symptoms. And then their body just keeps transforming into this thing that is them, was them but now they don’t entirely know it, trust it or feel like it is their own.

I think this instance happened sometime in January of 2021. By that time I had started speaking about my chronic illness, venturing into this unknown territory of showcasing my vulnerability and trying to ask for space, maybe even kindness. In the darkest crevices of myself, even a sort of validation. I had this external need to be told that I was normal, that I was still going to be seen as normal, human, as one of them and not as an other who didn’t particularly fit in with these normal people.

It was still the beginning of the semester. Some of my classmates and I had decided we would go to the beach, relax, have a day of fun before the humdrum of the final year project; very much like wild college kids I suppose. I was unsure, terrified.

One of the things about Achalasia was its unpredictability. I would be having a good day and then not. It was capricious: One minute I was laughing and thinking to myself “I am having a good day, my body is being so very kind,” the very next second I was puking onto the freshly cleaned floors because I was too slow to make the five step journey to the bathroom. Or hacking into my hand because the pain was terrible. Rummaging in my fridge because at times chewing on ice eased the pain, or yogurt, or chocolate, or something spicy -I could never completely tell, it was always a guessing game- for a few minutes, but still. It was a whole few minutes without debilitating oesophageal spasms.

During those days I would have given half my blood (all of it even) to not feel that pain day in and day out. It was a crushing kind of pain. A burning kind. It felt like someone was scraping my insides, setting fire to each freshly peeled layer. I was almost certain someone was sandpapering the crevices of my spine, the skin over my sternum felt tight, like pulled elastic. Fantom fingers circling my throat, pressing into it. Someone crushing my chest, spine, pushing them toward each other. Trying to fuse them, the cells tightly curling into one another. Simultaneously trying to rip them apart, through my skin. Sometimes I could imagine the bones rushing out, the skin shattering, blood spewing everywhere.

It hurt to talk, to think. A lot of me was incapable of seeing beyond my own pain. But I felt this need to be seen as someone who was more than this pain. I felt the desperate need to never use my pain- that was almost a constant companion- as an “excuse” for underperforming as a student, as a colleague, as a friend, as a daughter. I felt this compelling need to prove something to myself, to the world, to perhaps even god, even though I was deeply and still am, agnostic.

Because if I wasn’t able to do the most basic of “normal” things then was I even worth the air that I breathed?

I said yes, yes to the invitation, to the plan, to the whole thing. I said yes.

It was a weekday, one of our free days. We had decided to meet early, a little too early because it was a tourist attraction and nothing was open before 11am.

I got up early, tried eating but was unable to. I had noticed that there was gunk settling in the cap of my water bottle. Threw the big two litre bottle that had become my lifeline, believing I would pick up one on my way to the beach.

The exact details are a little blurry to me. I am not sure if I met one of my friends on the way there, maybe two of them. We had decided to meet half way and then go the complete way together. I am not sure. That part is a little hazy. What I do remember was asking one of my friends to pick up a sweet, non-carbonated drink for me because my chest was a little sensitive. I knew if I didn’t take care of myself a little more than normal then I would be hurtling into a flare up.

They got me this amazing drink and I loved them ever so much for it. I was looking for a 7/11 by then. The little half litre bottle I had carried temporarily wasn’t going to come in handy, especially if we were going to eat brunch together.

We all looked around. We were waiting for one specific friend who was late. They had eventually told us to go ahead and they would catch up, so we did. We entered this restaurant. I had tried the food there in 2018, with my parents. They had visited me when I first came to Singapore at 16, to pursue a diploma in fine art. It was a nice place, by Singaporean food standards that is.

Sat down at a big table. Ordered our food, deciding who would share what. I think I asked for a water bottle multiple times. I remember the water bottle not being marked in the little menu sheet that we needed to circle our order into. I had asked them to add the water bottle in again just before they left. It was cold when the water arrived. I wanted to curse at the world. What was I supposed to do with cold water? Cold water was akin to holding my hands in the air and confessing to my chronic illness at gun point.

What was worse was we had asked for three bottles of water, two of them were shared amongst the others, one half litre bottle was left for me. That would barely be enough for a few French fries I was forced to stick to.

I thought, well my friends got this really amazing drink, maybe I could drink that, cut down on my water consumption a little. It would not be a lot, however every drop I saved for later was still a drop contributing to the staving away of the oesophageal spams.

When I went to take a sip a waiter had come in and told me in a very rude voice that I wasn’t allowed to drink outside drinks in the establishment. Blood rushed into my face. My anger knew no bounds. I snidely asked if I could drink water not bought in the store. He looked around for a minute, his austere rude expression unflinching in the face of my attitude. He replied yes, matching my snide tone.

We had been talking about Singaporean aunties at that moment, how they were sensitive to everything. The Singaporean version of Karen I suppose.

The way my friends were pacifying me and telling me that it was normal in touristy places. Trying to explain why touristy establishments had this rule. Trying to explain why I was the one in the wrong. Maybe not wrong per se. Mind you this is my iteration of the events, their tone was much nicer. To me, in that moment, it felt like I was being cornered. As if I wanted someone to stick up for me, fight this battle which I was constantly losing at. I wanted them to just understand without me needing to explain how much that drink meant to me in that moment.

In that moment, a part of me wondered if I was like them, like the Singaporean aunties. If I was one for being irritated by something as mild as not being able to take a few sips of that drink. Or if the people around me thought I was one.

I stuck to French fries. Swallowing became harder because of how aware I was of my lack of water. By that time I had developed an anxiety of not having enough water with me during meal times. I used to be obsessed with maintaining a minimum amount of water in my water bottles. Making sure the water was the correct temperature: sometimes room temperature, other times a skin peeling boiling hot. Going as far as to have three to four two litre bottles filled to the brim before I sat to eat.

Water helped me swallow. I needed to drink water after every bite of food I took in. It was like this pressure that forced the LES (Lower Esophageal Sphincter) open by that the food would enter the stomach.

I ate little, not enough to stave away the Oesophageal spams. We walked for a few kilo metres to reach the beach. I was exhausted. I was always exhausted. By then I had taken to using public transportation even though I was a walk everywhere kind of person. It never mattered how far away my destination was. I walked. Me giving into taking public transportation felt like another part of me that was chipped away.

We had snacks, drinks, everything a college picnic would need, apart from water.

I was desperate for water by the end of this trip. Desperate to have something in my stomach because then maybe, just maybe, I would get away with the flare up. Maybe my body would forgive me for the poor care I took of it.

I remember that we had settled into hammocks that were placed in one corner, trying to get away from the sun. I had picked up my drink, a little bit of water that was left in my tiny bottle and my book. I remember staring at the water, willing it to be more than it was in my desperation to avoid the pain. I remember being too scared of the pain I knew was coming to be able to concentrate on the book in my hand. A book by Rebecca Solnit. A chapter of the book having been introduced a semester before as suggested reading.

I remember moving over to someone else’s hammock, us talking about this new BDSM online test that was released. One of my friends having gotten into a new relationship. They were all giggly then, warm. All of me was very happy for them, deeply happy. Though the sex talk did make me a little uncomfortable.

I remember at one point being desperate for those last few drops of that sweet drink even though I had reached that point where I couldn’t drink any more of it without water and the water was over. I remember the others asking me for water and the drink. I remember feeling deeply betrayed, though I never objected or showed my emotions. I just smiled and said sure. One never denied a person water, I was taught that since early childhood. It was a cultural thing.

It took a hour more before we all dispersed. Before that I was too terrified of telling them that I wanted to leave. A part of me felt like I would become less of a person if I showed my desire to leave early to rest, try and take care, nurture my already abused body.

We left. The moment I was away from them I went into the nearest convenience store, bought myself a bottle of normal water, tried drinking a sip and cursed myself. The oesophageal spams had already begun, the trickling pain had moved into vibrant bursts of red beneath my skin, the tips of the raging fire reaching my closed eyelids.

I came home, immediately called my mom to tell her I was unable to drink water or have anything at all for what was six hours then. Her reply was, oh god, the closest she would ever come to cursing out loud. Told me to take a medicine which had not worked. Nothing worked for the next three days. My throat was locked to food, my chest ached, more accurately burned, my head ached, I was exhausted, in pain and so very angry.

It was maybe the first day when my status as the other had started to trickle into me. When I had begun to acknowledge and also deeply, viscerally deny my status as someone who needed things to be functional. Not the normal things, I mean something more. A world bending towards me kind of more.

I realised how the very world did not have a place for someone like me. Even if it did, it carved that place out with contempt in its eyes, hatred on its tongue and irritation in its hands.

I was certain that if I told that waiter that I had achalasia and needed that drink because it was the closest thing to medicine at that moment, he might have understood, maybe. Or he might have thought of me as a liar because of the absolute lack of awareness surrounding this rare disorder, or the fact that my disability didn’t show on me: I had no scars, nothing on my body that signified the pain that I went through on a daily basis. Or he might have thought of me as a terrible inconvenience. The latter two more likely than the prior.

I wondered if the fact that my disability was invisible was the reason why I needed to remind my friends a few times for the extra bottles of water, half of which we ended up sharing. I wondered if they would have left me a bottle of water, an entire bottle of it to myself if they understood the gravity of the pain, if they felt the depth of it and how very terrified I was of it.

I wondered about a lot of things.

However I also realised that I didn’t want to surrender my identity as an other, as someone who was/is not “normal.” It had become abundantly clear that I would eventually have to. Till then the daily things that are considered normal might be very triggering to me at times (example: dinner parties, they did end up becoming a trigger). As such the entire world was a trigger in its own way. The biggest trigger of all having to tell people when necessary, having to be vulnerable, beg for kindness and scraps of empathy. Having to beg for institutional concessions when needed. Having to endure micro-aggressions because able bodied people didn’t know better. Everything was going to be triggering. A perennial plight.