Scarless Scars

“… You know the thing that is the hardest to explain, it is how utterly hopeless, helpless and defeated I felt. …

… The most frustrating of all is how none of it showed: the pain, the exhaustion, the struggle, how none, absolutely none of it, showed. …”

- Snippets from Personal Diary (2021)

There are a few things that I relied on, parts of me that I trusted, irrevocably so. The first was my mind. There was nothing that I trusted more than my own brain: its span of attention and the depth of its memory, those two were the ones I relied on the most. Those were also the ones I held on the hardest to.

The second was my hands. I never truly, completely comprehended how it could do the things it did.

Giving up on my body was the easiest part of this disease. Giving up on my mind however, it reminded me that there was no floor to cushion my free fall, that there was still more depth to this bottomless hole.

When you don’t feel the symptoms, or get diagnosed, when you know the disease/disorder/disability superficially, you believe that there are limitations to what you will have to give up, what you will be forced to give up, what is snatched from beneath your feet, the loss you will remain in denial of. You think, well there must be a line that I will never cross, there must be a line I will hold against the disease.

In the beginning you have these one sided conversations in your mind; all of these things that you know in your gut you do not want to give up, you cannot give up, you refuse to give up. If you are forced to give up these things then you are no more you, your identity of yourself is in jeopardy. You know that, you feel that, and you try, desperately, to hold that line. For a few days, weeks, months, maybe even years, you think well that line is held, you give up a few things, parts of yourself, but the crux of you is still whole, the you that is your core is still whole and intact.

And then comes a day when the disease/disorder/disability slaps you across the face so hard that you cannot get off the floor, try as hard as you might. It’s gone, the you that you knew, that you desperately wanted to hold on to, it’s gone. There’s a shadow of that person left and you hate that shadow, absolutely despise it, grieve it, disdain it more, then you mourn it some more.

The first time I was slapped across my face was when I noticed that I could no more drink water without discomfort.

The second time was when I felt the pain of the food I had swallowed a second back gush out of a deeper part of my oesophagus, painfully shoving itself into my mouth, my lips not able to hold everything, the dash to the bathroom, the spittle that splashed back onto my face when I spat out the gruely mixture of chewed food and water and saliva into the commode.

The third time was when I coughed out food onto the table in front of a family friend. This was a half slap though, it had missed the mark, just by a hair’s breadth. It would be complete two months later when I would cough out food in front of classmates, hungry tired, desperate for food, ashamed of what my body was becoming, this time, it hit the mark.

The fourth slap was the unpredictability of the disorder. I had a workshop on that day. An exhaustion had taken over me. Chills in the blazing heat of Singapore. Pain, my joints ached, my fingers ached. It hurt. I had never taken a day off till then. I was forced into taking a day off, I was forced into talking to my module leader about my changing body which did not have a diagnosis yet. I was forced to look into their eyes and know that they did not understand, that they did not get my fear, more than anything, they just could not see it.

The fifth slap was when I finally got a diagnosis. When I realised that my doctors (I had two before I refused treatment in 2020, before I gave up) had falsely made me believe that Type - III Achalasia Cardia was curable. It was perhaps the hardest of slaps. Subsequently learning that doctors weren’t kind, that I would have to advocate for myself, tolerate micro and macro aggressions from doctors as well, hearing some of the most callous things I ever would, from them.

The sixth slap was when I was unable to do basic tasks on some days. Getting into spirals of exhaustion because of flareups. Not being able to eat anything at all for days, maybe even an entire week sometimes. Trying to do daily activities without making it known, and failing in a lot of instances, that I had raging oesophageal spams for days and nights on end.

The seventh slap was when oesophageal spams greeted me during a presentation. I got an A but the needing to work through the pain, think through the pain, it had cemented a new reality. Hammering the soft cement into the crevices that it did not seep into yet in the subsequent interactions of all sorts.

The eight one, my friends, my parents, my soul sister. It is the hardest to talk about, the hardest to live through. I lost people. The loss of the people isn’t the hardest. It is the pain of what they left me behind with. The knowledge that however hard I tried to be perfect, normal, I just wasn’t normal. That I would have to be beyond perfect to be granted the seat at the normal table. Even then I would have to tolerate some form of micro/macro aggressions for the rest of my life.

The ninth slap, the loss of my mind. I noticed it first in year 2, semester one. The fog, the forgetting things, the loss of my vast attention span. This time I was on the ground and my knees were crushed. I couldn’t get up. All the others, I got up, but this one, I couldn’t.

The last one, the last, finalising slap that was when my work ethic, my integrity, my hard work, perhaps the hardest of works were discredited. When I was told that I let them down when they were the ones who let me down. When my disorder was used as a convenient excuse to dump blame, I did not own or deserve, onto me.

I never- I didn’t—…

I didn’t know I would have to give so much, that I would… I didn’t know.

After my surgery I had asked a few of the people around me if I ever looked sick. If they ever could look at me and pick me out as someone who was physically struggling. All of their replies were no. I looked fatigued, like a normal student. That’s it.

The worst part was, all of these people were someone I talked to about my disorder. Sometimes going as far as to repeating the conversation four to five times over the course of a semester.