My hooding ceremony was on 10 May 2026. The problem was, I was going to do a procedure on 13 May, three days later. As part of this procedure, the doctors would need to slow my heart rate down, to a rate of 50 or thereabouts, or what I call my pre-transplant rate. This started with medications two days before the hooding ceremony and I already started feeling all the Déjà vu of my past life: for the first time in years, I felt breathless climbing up to my bedroom. I felt that I couldn’t concentrate and by 9pm, I was fast asleep.

The night before the ceremony, I packed my gown in five minutes. Then, I packed my medicine and my back-up medicines for in case something happened. I spent over an hour going through in my head every possible scenario: dizziness, blurred vision so I wouldn’t be able to see the steps to the stage or my advisor to where I was standing, low energy because my heart rate was slower, or short of breath following the line of friends who were graduating together. Then, I realised I needed painkillers and museli bars to keep up.

I don’t want to go; I will have the diploma nonetheless. But perhaps this is the last hurdle I need to scale.

The day of the ceremony, I had no appetite. Everyone told me that I had to eat, because they would announce our names and theses one by one, and would even give a one minute summary of our theses. There were over 200 of us, so the ceremony would be expected to last four hours, across lunch.

I found my seat early, and while my fellow graduates were happily taking pre-graduation photos, I collapsed in my seat. The walk from the car to the hall was merely five minutes, the weather was neither hot nor cold, and I was holding nothing but my survival kit; yet, I was exhausted.

How am I going to make it through?

At every turn of the ceremony, I kept checking my blood pressure and my oxygen levels. My department was near the last, so I was tenth to the last graduate. Which means I needed to hang on till the end. I found back my niche for daydreaming again, which frequently happened when my body was weak and my eyes couldn’t focus, so I didn’t know which of my friends were on stage nor could I take their pictures and be proud of them. My body wanted to sleep badly, but my brain was aggressively fighting that urge and willing myself to stay awake.

When it was time for me to begin walking to the hallway to queue for my turn on stage, I stood up with jitters, mentally running through if I have everything to survive the wait. With each step I took closer to the stage, my breathing laboured.

my turn came and I was ushered to the stage. I looked to the crowd to find my tribe, but the lights blinded me. I tried to keep a tight posture as I walked up, head tall and body straight. I mentally counted the steps in my head, telling myself just a few more, just a few more. I don’t know what the Dean was announcing, or whether he was reading my name correctly, or whether he was even reading the correct thesis statement out loud. I stood straight and heard my advisor whisper to me, “a very good job”, before she placed the hood on me. I didn’t know what to do next; actually, I just wanted to lay down. In the midst of the cheers, the lights and the photos, I was pushed off stage, from usher to usher, all while trying to keep my calm.

I finally reached my seat again. I attempted to calm myself and tried to snack a little. But two more graduates later, my body was crashing. I passed my diploma certificate to Alisha, the department’s administrative staff who was sitting just behind me. I whispered, “I need the bathroom”. She nodded, as if she knew what I meant.

I graduated. Then I went to the hospital.

Thank you for developing me as a musician, and for showing me how to teach.

I have been sick my entire life. Each day as I shower, I scrub the scars that prove my illness is very real. At first it begun only with a little puncture mark from the right heart catherization at my left thigh when I was seven. Then, the constellations of perforations from my arms from years of blood draws, the raised line on my left chest where the pacemaker sits beneath the skin and the dent just beside it that you can feel if you press in the right place. These scars never fade, because my body was actively destroying itself, not healing itself.

But none of that is visible when I walk into a room.

What is visible, is that I look fine. That I can hold a conversation and make people laugh, that I can banter with witty answers to difficult questions, and that, most of the time, I passed my examinations near the top of my class. I am, by every outward measure, a bright and functioning little girl, who does not look like she is dying.

That, is the problem. I am dying but my body looks perfectly fine.

I learnt early in life that intelligence is a double-edged sword when one is sick. This was especially true in a society like Singapore which valued the education of her next generation and meritocracy more than anything else.

Primary school begun with my illness being visible enough that many teachers reluctantly made accommodations. My very first year of primary school saw me carted off to the hospital for my very first right heart catherization. I was blessed to have Mrs. Thomas as my form teacher. She, an elderly lady, had seen her fair share of illnesses and deaths to know that I was a child that need somewhat special attention. However, as the Chinese goes, 姜还是老的辣 (old ginger is more spicy), Mrs. Thomas gave me the needed extra time, but never the extra attention.

That’s okay, I did not want to be more visible.

As I grew older, my body and my mind fell into a grim equilibrium. My symptoms were managed, not fixed. Fainting in school became less often because I simply skipped school under the guise of “doctor’s appointment”. When walking, I learnt to pace myself so expertly that the most dangerous moments took place in private. I took frequent bathroom breaks not to pee — for I couldn’t pee by myself without medicine — but to catch my breath, to pant, and to clutch my chest in pain and cry out loud. In those little moments, I allowed myself just a second of self-pity before heading out in public again.

While it was so difficult for me to pass through life, it was a breeze for me to pass my examinations. I moved through the academic machinery of Singapore with the smooth efficiency of a savant, passing my Primary School Leaving Examinations with flying colours, then entering an elite high school, and easily obtaining Edusave Scholarships to support the cost of my education.

“You can’t be that sick. Look at your results,” people would begin to comment. As if illness and intelligence were a zero-sum game, where a body in crisis could not also house a mind in full flight. But these two things can co-exist in the same person, yet no one seemed to read that particular evidence.

The loneliness of this all is not the loneliness of being physically alone. I always had people around me: classmates, family, friends. The dining table was never empty, the classroom was always full. But it is the loneliness that my mind is raging with what-if’s, and my body violently sustaining life, yet having no one to chatter away when I witness every warning sign and every new organ deteriorate. Each time I tried to tell someone about my illness, I was quickly silenced with disbelief. My brain that compensated for everything my body could not do, that carried me through examinations made me too functional, too composed, and also too capable for anyone to believe that beneath it was a heart that was slowly failing.

And a girl that was trying to live.

Some days, some really scary days, when my cells were actively dying, the sense of loneliness cuts deeper. It is this unexplainable feeling that my body and brain understood and my soul nodded along. And all I could do was hold onto the trust that I would make it to the other side. I would outwardly beg the universe that I wasn’t done in this experience. I had more to give.

And intertwined with the desire to stay alive, a pure and utter fear of death.

I was busy writing a 200 page thesis document and another 200 page academic trade book.

For those who want to read about my thesis: https://quarbby.github.io/research/thesis.html

It comes with a postcard below. If you want a signed postcard, DM me and we can work something out (i.e. shipping costs).

I’ll get back to my life story once my mind recharges.

For now,

Take care and see you guys soon.

Signing off,

Dr Lynnette Ng, PhD.

Two years ago, I would have never imagined this life. I was struggling to even breathe when the breathing tube was plucked out from my lungs. I then had to struggle with aspiration pneumonia over the holiday season, and was constantly coughing up blood. I questioned myself if it was worth it to trade one life for another life, but 2025 proved that it was the right choice.

Just like that, I woke up one day in March 2025 and telephoned a driving center. I wanted to learn how to drive again, at least just for emergencies. I don’t know how I managed to find the courage to sit in the driver’s seat and drive through the winding roads of Schenley Park while a stranger was breathing down my neck about how I turned the wheels.

A month later, I agreed to go hiking along Schenley Park to watch baby owls grow up. For some reason, the prospect of seeing baby owls overpowered my fear and pain of waddling in the snow (yes, it snows in April in Pittsburgh) and I made my way through to the vantage point. I did that not once, not twice, but almost five times. Each time I waddled faster and faster, wore lesser layers of clothing and carried more photography equipment. Each time, my body screams no but somehow my mind did not give in.

In June, I bravely decided to join the Pittsburgh Philharmonic summer concert, knowing that I just got comfortable with playing the high notes on the E string of the violin. In July, I attended Furry Convention and walked until my legs were sore, but my heart was still pumping strong. In August, I went to Renaissance Faire; in September, I went to Lassen Volcanic Park; in October, I did some hikes around the Great Smokey Mountains; in November, I went on a camping trip; in December, I attended Christmas parties almost every day and ate till I was full but I did not vomit.

While I might never shed the skin of myself having had a heart issue, and all the memories of it, this year showed me how beautiful life can be, and allowed me, even if it were just for a tiny bit, to live.

I’m sorry I haven’t been writing here. I’ve been writing my thesis. But my story isn’t finished, and rest assured, I’ll never give up telling this story.

This weekend I met Amy at a hiking trip. We shared an AirBnB. She’s an amazing person. She can cook delicious food. She cooked venison vegetable soup, and for a long time since, I had a second servings. I usually don’t get second servings because Old Me would take a few bites and would feel so bloated. My intestines would be pushed tight together and my stomach would feel like an over inflated balloon, with its skin stretched so thin, just waiting for a needle to prick it deflated. She washes up all the dishes after dinner and wipes the table. She does the bedsheets and cleans up the place.

But Amy was sick. She had some brain surgery in the past, and till today, she can’t really pronounce words well. So when she wanted to read out the spices she wanted to put in the soup but forgot, she got her boyfriend to do it. When she told me, I immediately connected to her reservations on how we might have asked her to repeat the names of the spices again, of how we might not understand it, that might remind her of how she is different.

I know that place. I live there. Present tense.

Pre-transplant, I got Adrian to say that he had to finish work at home so I could leave a dinner early. I needed to get home about two hours after I ate any food that’s seasoned to either puke it out or take furosemide to because my body had started retaining water. And if I don’t, either I puke at the host’s house, or my heart gets so swollen I can’t breathe.

I would get Adrian to drive me to and fro from school, and we would blame the parking situation in school. It’s too expensive, it’s too hard to find parking… No, the truth is, I don’t dare to drive. What if the seatbelt cuts into my pacemaker? What if my mind goes blank? What if my peripheral vision is still blocked?

And this fear of misgivings never end.

Now, post-transplant, Adrian still drives me to school. He drives me to my orchestra practices. He drives me to my blood tests and wait at the roundabout for me. Adrian says he cares for me, and he loves driving me to and fro, because that’s one of the few times that I will yap continuously about my day, my dreams, and my hopes. But hidden behind this is also the truth:

I still don’t dare to take to the wheel.

Adrian still carries my bag for me. In fact, this weekend, one of the guys on the hike, Dave, heard Adrian telling me he would carry my bag, and said, “Wow! Can you carry mine for me too?” Adrian does it not because I physically cannot, but because we mentally fear that I cannot. Some days are good days that I am very strong and I power through; and some days, I would walk a little bit and my mental psyche breaks down.

No, Dave, you don’t know what it’s like when I give up and throw a tantrum. It’ll be worse than a kid.

But some days, like today, after I chatted with Amy a lot more, I gave in to these mental demons. I told Amy things that I’ve been there. I told her how I appreciated her bacon egg and cheese breakfast this morning but the bacon was too greasy for me. That Old Me wouldn’t have eaten it.

But New Me did. I ate it, and got the calories I needed for the hike.

There’s a space between silence and surrender. Between the weight of a story you haven’t told and the moment you finally let it spill across the page. Telling my story to a friend, to you, my reader, makes a piece of my heart tangible. It’s as if I took a part of me out for you to hold and to protect. For the world to see.

And for me to finally stop being scared of being misunderstood for mysterious things.

I wiped myself after peeing out another 250g of fluid, and was frustrated that only 250g came out. If I did the math right, that means I would need to pee at least 80 times. And since I only managed, thus far, to pee 4 times on average, that means I’ll need 20 days to get rid of the 20kg of fluid. That is, if my body doesn’t gain more fluid during the process. Which means I can only get out of this place in about a month, and that means the entire of my lovely June summer would be gone.

Dr K. came into the room just as I tied my gown up. He sat down and folded his hands between his knees.

Uh oh.

He said, “Have you ever thought of a heart transplant?”

I raised my eyebrows. “What?”

No, I was brought up in an island state called Singapore, where humans are a commodity, so hearts are rare. I was brought up by doctors to think that I need a heart eventually, but I will never get one.

Dr. K explained to me that the team had evaluated my heart to be too weak to continue supporting my body, even if we successfully purge all the water. As he explained the medical reasons, my mind drifted off:

Am I dying?

Dr K. patted my hand and left the room, telling me to think about his proposal.

Okay, I will.

I don’t know if I responded to him or just said it out in my head, but I thought about his proposal way too much.

I ate my dinner in silence, processing the situation. I thought about the worst-case scenarios: that we couldn’t find a heart, that my heart gives up before we find a heart, that I die in surgery. I thought about how I might not see my family again, or how I might not complete my PhD course. I was terrified of the thought that even if I survived, my life would change too drastically. I know the doctors said it would change for the better, but what if I already got used to my sub-standard life? I don’t need to be able to run or drive; I only need to be able to read and use the computer. I don’t need to be able to wear high heels without my heart cramping and put on makeup without my face itching; I only need to be able to wear sneakers and walk to the bus stop. My dinner yoghurt sat beside the shape of my grief, untouched.

I shifted myself on the bed, held on to the rails with my hand, and heaved as I laid back down. The swan catheter in my neck starts to hurt again, but I will myself not to tug at it, because it is directly connected to my heart.

I let my thoughts drift, and I let my tears fall. As my thoughts churned, my tears started to fall. I remembered the days as a child that I ran carefree at the playground, only to stop a few seconds to catch my breath. Then I remembered how I could climb 4 stories of steps in my primary school days to get to class after flag raising. Then, I remembered how my legs swelled while I was doing my first year of my bachelors’ program at London, and I could no longer climb even a flight of stairs without panting. And I remembered how just a week ago, I couldn’t walk 50m from my apartment’s door to the elevator without panting. Maybe, it’s time, really, to rest.

Somewhere, deep in the spaces between heartbeats, where the world folds into something too vast for words, the world breathed back.

My dear heart, please just hang on for a short while, until we find you a replacement.

I drifted off to sleep while machines hummed quietly in the background. It was 3am in the morning, the room was pitch-black, except for a small ray of light creeping through the door.

Darkness only amplifies light, even in the darkest hour. I will survive.

As much as I enjoyed talking about my research for hours, this Summer Institute was my hardest yet. My legs and feet ached so badly from standing that long, but I was so thankful that they did not swell. I was mentally pleading them not to swell up and hold itself till my talks were done. They did, but my voice didn’t. Through the talks, I had to consciously tell myself to speak louder, because my vocals got tired easily. I could feel the paralysis setting in and I had to ignore it and keep going. I stuttered a lot, moving my tongue past the parts of my throat that would not move. My voice occasionally drifted low, trying to give my vocal cords a break, but my brain had to force it to keep going.

Today is the last day of the institute, and I came early just to be alone in this classroom. To hear the fire cackling underneath the coffee boiler, to savour in all that I envisioned I would be — a scientist and an educator.

To be completed. Because class started.

She asked if I can climb steps now, and I said yes. She asked if I can run, I said, no, I still cannot figure out how to do so. She smiled and said, at least you have a good quality of life.

I can’t figure out the muscles to move when running. I can’t figure out how to breathe properly and not pant. And I always stop prematurely when my heart rate gets too high, because I am afraid the pain will set in again.

She asks me if my nails were growing nicely and I showed my hand on the screen. She remembered how as a child, she had to cut my sister’s nails but was so puzzled she did not have to deal with my nails, for cutting a child’s nails can never be easy. She told me that I can paint my nails now, but I told her I like them natural, healthy pink. Besides, they are cute, since they are short and stubby. She laughed, “Didn’t you used to hate your short and stubby nails?”

I hated them because every high school girl was painting nails and I had no nails to paint.

She told me my breasts look fuller, and recalled how as a high school kid, I complained that everyone was wearing bras and I complained that I was still flat chested. I told her that I was young and naive then, and every kid was showing off the latest bras their parents bought for them and I had none. But this year alone, I bought different bras of different styles, wireless, sports, wired… I whined that all that new technology and advertisements just confuse me, and that now, I don’t have that group of teenage girls to choose them alongside me.

Same with sanitary pads and tampons. All I knew about the menstrual cycle was biology knowledge, but now I have to deal with selecting a type of pad for my monthlies. I told my mum the story of how Anthea brandished her first sanitary pad to Charis in class, showing off that her period had come and she’s now an adult. I complained that while I used to be the most emotionally stable person anyone ever knew, I now experience mood swings, where I get super upset over small little things, and I cry buckets. Where I naturally binge on chocolates to keep myself happy, and finally understood why my mum and my sister loved hoarding on chocolates when we all lived together.

We laughed as we mentioned that I am now going through puberty, something she missed with this first child two decades ago. She cheekily asked, “Are you growing taller too?” Well, I don’t know and I certainly don’t think so. I like my small height, because it gets me in and out of a crowd quickly and easily.

She ended the call with saying, “You’re not the same Lynnette I raised. You’re better.”

Yes, I am the same girl you raised. I changed my heart, but I still have the same heart for family, for people, for life.

“I’m Lynnette-upgraded.” I smiled as I hung up the call. I head out to the living room to make myself a cup of honey water to soothe my swollen throat and lips, and eat my medicine. Beneath the rituals, behind the new outdoors that I am enjoying, I am still the same Lynnette — the one that just wants to cuddle up with a book and read.

The routine surgery didn’t turn out all that routine after all.

The doctors changed my primary immunosuppressant medication from tacrolimus to cyclosporine because I was complaining so much about this unexplained rash that I had on my back for two whole years. The rash never goes away, it never expands, but it’s there. It sometimes flares up and gets more itchy, much like how one’s nose sneezes more often in the Spring when the flowers wake up. But cyclosporine has had its own troubles too. The first time I took it, I resisted the urge not to puke, because I didn’t want to waste the medicine. And I had to find ways to keep the medicine down, because my taste buds hate the smell and taste of the grey pill. My gums get a little more enlarged, which means that I cannot necessarily feel my food well. Thankfully, it is summer so there isn’t a need to eat hot food yet. On the bright side, it means I get a fuller lips which looks better on pictures.

My throat are back swelling, so talking gets difficult and painful. Thankfully it’s summer so school isn’t in session so I don’t have many people to talk to. Also thankfully I am in school, so I can be an extreme introvert, or an anti-social kid, and not talk to anyone should I wish not to. My red blood cell and iron count are low again, so I have to increase iron pills, deal with fatigue and irregular periods (which had just gotten regular).

Then, I’m back to the weekly blood draws. Before surgery (May 15, 2025), the medical team reduced the blood draws to a monthly routine, but now it’s back weekly. Which means I have to get up at 8am on that day, get to the hospital, get my blood drawn, then get home and rest. My body has started resisting these draws so if I don’t keep my arm straight for a good hour after the draw, an intense blood clot with form along the bend of the inner elbow, also called the antecubital fossa. Then I deal with the yellowish grayish blueish bruise for a good week, and hope it goes away before the next draw. After two painful rounds of that, I started going home straight after the draws and napping for a good hour. The scars still remain, but the bruise is gone. But the scars - they make the next draw harder, because the needle has to poke all through that hardened skin.

There’s so much tiredness and fatigue. The optometrist says my eyes are overstimulated. I get constant headaches. I try to sleep but I don’t. When I finally drift away and want to sleep in, I don’t - I have to wake up before 9am to eat my medication, like clockwork.

I try not to think that I am sick again. But I do. I check my body for signs every few days - that my nails are not broken, that my fingers don’t turn blue, that I am getting fat and not bloated. I even set calendar reminders to tell me to do so. My thoughts go missing. I forget things, I forget items, I leave things unanswered. My happy thoughts disappear into an abyss, waiting to be discovered by the courageous soul that will dig into the tunnel once again.

But I know that this is just a phase, and I will get through it because I have had a 100% success rate of getting through my bad months.

I promise I will write, when I find the will to, or the courage to. Because I know my community here are waiting for me.

Redoing this piece because now that I’m more recovered from surgery, I can write better.

Pre-transplant, the transplant surgeons will tell you that life after transplant is heaven. They tell you that you can do anything: swim, ride a bike, sit on roller coasters, eat salty food, enjoy restaurant foods, and walk to school. They tell you that your heart would no longer be defective, that you would no longer have to grapple with the swelling and the heart pains and the breathlessness that you have learnt to live with your entire life.

But the surgeons do not tell you that you will have many side effects that make life feel like hell: random ulcers in your mouth and butt, eczema rashes on your back and your arm, random bruises on your legs and arms… They do not tell you life after transplant is filled with decisions of selecting the medication that you can bear the side effects of better: ulcers or swollen lips.

Plus, they tell you that they do not know which drug is causing the side effects.

They do not tell you that the key immunosuppressant medication will make your eyes blur, so you can only drive on good days, or not at all. They do not tell you that you have to deal with hand tremors that come on during random times of the day, while you are doing random activities, that sometimes you cannot even safely lift your drinking cup. They do not tell you that you cannot eat a whole list of foods until you begin to fight the post-transplant pain, and that you have to forgo your favourite pineapples and oranges too. They do not tell you that you will lose your hair, your appetite, and your weight.

And sometimes you will lose your sanity.

They do not tell you that they will see you again, and again, and again, because your heart will need yet another surgery, for something small, something minor, something simple that they will fix in an hour and let you bruise for an entire week. They do not tell you that you need IV drips semi-annually to boost your minerals, even though you have a great diet. They do not tell you that if you sit beside a coughing person for just ten minutes, that flu virus from their body will become a pneumonia in yours, and that will warrant your stay at the hospital, complete with IV antibiotics and CT scans.

It’s been 24 months since my transplant and I have showed up at 7am for somewhere around 15 invasive surgical procedures. In these procedures, the surgeons put a catheter through a vein or an artery to look at my heart, sometimes grab a few pieces of the heart. If there are any collapsed veins or arteries, they would put a stent into the heart there and then.

And each time, I sign a form acknowledging that there is a possibility of death. Death, the monster that I have fought hard to avoid.

The surgeons only tell you the rosy part of post-transplant life before you sign the agreement to a transplant: the carefree life where I no longer have to plan my steps and my rest areas and time my food to my medicine and sleep cycles.

But neither do the surgeons tell you that when you have that next surgery, they will be there, ready to fix you, ready to save you, and all you need to do is to trust them.

I just need to fall asleep under their knife and let them catch my worries.

It took me 15 surgeries post-transplant to calm my thoughts when I lie on the narrow green operating table. On the 15th surgery, I could finally enter the room filled with surgical instruments, machines and scrubs that are ready and waiting for me, and decide to sleep. I smiled at the surgical tech and told her, hold my hand for a minute, I’m drifting away.

I stilled my body and my thoughts, ceding control to the surgeon’s mind and hands. In the moment of perfect stillness, I understood something about absence: it has texture, weight and dimension. The absence of fear fills the space differently than presence does. The absence contained a potent magic through the simple act of hope, bottled in the laughter of the surgical team in the room, shuffling from table to table, passing their plan for me from one instrument to another. The stillness My heart, wrapped in the comfort of this hope, began to hum, and the surgeon’s catheters slipped through my arteries to tickle my heart.

Did you retrieve a good piece of my heart? Keep it in that little vial and make sure it knows that I love him.

Stillness isn’t the absence of movement, but the presence of possibility. Stillness is the moment between inhalation and exhalation, that momentarily pause that I have to hold my breath, and watch the team hold their breath along with me. Stillness is that one second between the extraction of the catheter and the pressure gauze, that one minute of deep applied pressure to stop the blood, that few moments to smile at the surgeon and hear his deep voice say, “well done, you.”

Well done, YOU, sir. You have brought me out from another surgery.

When the stillness breaks, the hustle and bustle begins again. The nurses clean your wound with cold chlorhexidine sticks, they gauze it up and they carry you from the operating table to your bed. They wheel you out for post-op recovery, then they feed you some snacks and force you to drink some fluids. I know that in a few hours, my bleeding will stop, and I’ll go home and bruise for a week and all I can do is really just sleep and more sleep.

I’ve done so many surgeries I know the routine by now. I update the surgeons on my life, and learn about theirs. I learnt that Dr. Lee recently lost his dog and is still grieving for him. I learnt that Dr. Keebler’s son is going to college soon and she thinks the college just a mile away is too close for comfort. I know the nurses, the nurses know me. They know where I like my IV stuck, that I shiver during the first lidocaine injection, that I’m allergic to boredom, and that I will demand for my peanut butter & jelly sandwich in recovery. Surgery has become another routine in my post-transplant life; although in most lives, the two words “routine surgery” occurring together sends shivers.

The surgeons tell you about your bright future after each surgery, but they do not tell you that even though they’ve seen your case so many times, they will once again study your case file from back to front for hours, hold extensive discussions with each other, debate strategies with themselves and practice the personalised surgical strokes over and over again. They have projected for the best, but have also planned for worst. More than that, they will make sure one of them will hold your hand as they make that first incision on your very scarred body, whether you are awake or asleep. And they will do it for you, no matter how many times you need it.

Routine surgery is now like a chance for me to catch up with old friends and make new ones. For me to say hello, I’m back, but I will get out again, because you’ve seen me do it before, and I will do it again.

School just ended. I got through another semester.

I had another surgery. I got through another one.

The transplant surgeons will tell you that life after transplant is heaven.

But they do not tell you that you will have many side effects that make life feel like hell: random ulcers in your mouth and butt, eczema rashes on your back and your arm, random bruises on your legs and arms… They do not tell you life after transplant is filled with decisions of selecting the medication that you can bear the side effects of better: ulcers or swollen lips. They do not tell you that the key immunosuppressant medication will make your eyes blur, so you can only drive on good days, or not at all. They do not tell you that you will lose your hair, your appetite and your sanity.

They do not tell you that they will see you again, and again, and again, because your heart will need yet another surgery, for something small, something minor, something simple that they will fix in an hour and let you bruise for an entire week. They do not tell you that you need IV drips semi-annually to boost your minerals, even though you have a great diet. They do not tell you that if you sit beside a coughing person for just ten minutes, that flu virus from their body will become a pneumonia in yours, and that will warrant your stay at the hospital.

But neither do they tell you that when you have that next surgery, they will be there, ready to fix you, ready to save you, and all you need to do is to fall asleep under their knife. They have studied your case file from back to front for hours, held extensive discussions with each other, debated strategies with themselves, and practiced their surgical strokes over and over again. They have planned for the best, and also for the worst, and they will make sure one of them will hold your hand as they make that first incision on your very scarred body, whether you are awake or asleep. And they will do it for you, no matter how many times you need it.

(To be completed. I am drifting in and out of sleep because of the surgery and sedation.)

I knew I was dying. I was in a predome phase, where my body was hit with a cocktail of weird symptoms: randomly broken nails, blurry eyes, blue frozen toes in the morning, puffy eyelids, extreme loss of appetite, spurts of vomiting, yellowed teeth, bouts of dizziness… My body was trying to speak in code, activating symptom after symptom to turn on the hazard lights.

Dr Carley asked if we should wait for a few weeks to see if I will get better. “No, I don’t think so. ” I responded. I offered to return Dr Carley the expenses incurred. The conference was a top tier conference that she attended every year, and this time, she found me academically fit enough to attend alongside with her. Except that I was physically unfit. My body refused to keep any food in, throwing up or pooping even with the simplest porridge dish — rice and water. There was no salt, no seasoning, no proteins added. My eyes couldn’t see straight because the eyes were bulging with huge pressure, and I had to mentally shift my frame of reference so that I would walk in a straight line.

A few weeks later, I told Dr Carley that I wanted to present my thesis proposal if possible, to at least tell people the scientific work that I had been working on for the past two and a half years. My suggestion would make the thesis proposal too early for the typical PhD program timeline. I may not pass the exam, but at least I would have tried. She was skeptical, and questioned, “You don’t think you would get better in the Fall?”

I firmly said no.

I wouldn’t get better; I would get worse. I don’t know. Life is a mess now.

I could tell her that no, but what I could not explain was how breathing itself had also become laborious. How waking up each morning required negotiations and motivations with myself that grew more desperate. Over time, these negotiations grew more futile, and became a losing game. Just two years prior, I woke up consistently at 7:30am every morning, ready to jump out of bed and start writing code. Slowly, I needed to sleep until 8am, then 9am, then 10am, in order to feel fully recharged for the day, although I still consistently went to bed by 10pm.

I could not explain how the time each day between waking and sleeping was a battlefield of its own, where I fought the same war over and over, losing ground with each victory. I used to be able to walk from my apartment door to the elevator on the other end of the building, but months later I found I could only walk from my apartment door to the elevator, then months later I could only walk from my apartment door to the next apartment door. My victory walk became shorter and shorter, until it was only 50 meters long. I was constantly breathless, constantly counting my steps, constantly regulating my breathing. When I walked, I was oblivious to my surroundings, because I was fully concentrated on trying not to let my body collapse. I was repeatedly looking out for safe spots and preparing myself to run into them should my body give up and faint.

I wrote that I was in pain. But I could not explain how my pain was not just a symptom or a condition, but it was the climate that I lived in. The pain was pervasive and horrifying. I no longer remembered when the pain begun to accurately answer the doctors’ questions, nor did I believe the pain will ever end. The moment I woke up and brushed my teeth, my hands will turn blue from touching the water, even though it was a warm spring temperature. My swollen throat was so enlarged that it hurt from swallowing my morning medicines and eating my hard boiled egg — probably the only protein I would be able to digest for the day. Typing code on the keyboard made my fingers ache so much that the bones felt like they were being cracked and twisted just like a tasty barbecue chicken wing. Walking 3 meters from the bedroom to the study room made the sole of my feet hurt from the weight of my swollen body, and my ankles twist in instability of the warped sense of gravity. I existed as a vessel, moving from chore to chore, hoping people will not forget me when I pass.

My pain ate me from the inside out.

Pain had rewritten my past and swallowed my future. I could not see a way forward. I always had a bad sense of direction, even with modern map technology on smartphones. This time, I lost my map, and my sense of navigation. I did not know what my future would look like.

I did not know if I even had a future.

I wanted to propose my thesis then and there, because to me, my future had entirely collapsed. Each path forward, each new change of medication, each blood test, each imaging test, led to the same destination of continued chaos. I tried to contain this chaos within myself, staying at home mostly, and working by myself. I drank Naked smoothies when I was extremely hungry but I knew that my body would reject food. I walked whenever I could, bore the pain of the breathlessness, because I fear the day that I would lose my ability to walk would come sooner than I wished it to be.

Each day’s survival seemed to be a mistake, because it only purchased the next day’s struggle at an ever increasing price.

I knew I was dying, and dying quickly, but I also knew that I wouldn’t die so fast.

The years of extreme chaos lasted for three years, where I repeatedly told my cardiologists that the distance I could tolerate walking was decreasing at a rapid speed. During this time, as my pacemaker pumped beats through my body, a sharp pain cut through the body, a pain I shivered in fear from initially, and a pain that I grew to accept as a reminder that I was still alive.

I stayed alive each day because I had come to far to watch myself fade into the footnote of the story I was meant to finish. And the story I am now telling you.

This one’s for Xinlin. Thank you for forcing your way to stay with us, and for forcing us to confront our emotions.

Emotional therapy after transplant was a very confusing time. Social workers came to talk to me in a time when my vocal cords would not make sounds. Volunteers came to tell me stories in a time I wanted to be left alone in the seemingly big ward, chained to my bed by IV tubes. I couldn’t answer any questions, nor was I lucid enough to process their words of wisdom, so I simply nodded in respect of their time. To the nurses, I was an emotionally stable patient: I did not fight them over my medications and my IV plugs; I would do my daily trod when it was time for them to walk me; and other than that, I would sit quietly in my bed and watch a gazillion Netflix cooking shows while drinking my protein shakes.

After my discharge, my unstable emotions began to show. I started misinterpreting the smallest actions that Adrian did as an ignorance of my presence. I once threw my phone at him when he was on the phone trying to arrange my subsequent urgent specialist visits. I would lie on my comfortable bed and let my thoughts wander, and wonder why Adrian did not want to lie on the bed with me (he was playing video games). We fought for days, not because we were angry at each other, but we fought because we were processing our own emotional trauma.

If my emotions had been tangled before, now they were knotted beyond repair.

Xinlin, Adrian’s college friend, was living with us as my secondary care taker at that time. She witnessed these interactions and set us up for couples counselling. She believed that we were both acting out as coping mechanisms: myself, in adapting to home life with the pain of transplant, and Adrian, in adapting to his response to wanting to protect me after losing me by his side for months.

So we went for our first counselling session, in which we had to narrate our perspectives of the transplant season. That took us almost half the session because my transplant was not only one season; it was the culmination of decades of a heart that was crying out loud. But the key problem with narration was that my heart was an unreliable narrator. I had forgotten much of the things that happened, probably because of the medication that I was pumped with, or because I simply had pushed those details to the back corner of my mind. Adrian too, could not remember the whole sequence of events, except that he had to cope with each event as they arose.

“So, what is one bad thing about this week?” the Counsellor asked.

Adrian and I looked at each other, then back at the Counsellor.

The silence stretched between us, heavy and thick, as if the air had frozen in place, although it was only early summer. Suddenly, Adrian reached his hand around my shoulder and pulled me close to him. This action, a gesture so simple, so familiar, that it nearly shattered me. The warmth of it arose something deep inside, something I hadn’t realised was still aching, buried deep under my months of struggles in the hospital wards.

We forgot about us in the midst of the chaos.

I snuggled into his arm and tilted my head up to smile at Adrian. He is a whole feet taller than I am so I needed to tilt my head up quite a bit, and my raw chest wound started to hurt. My smile quickly turned into a grimace as I clutched my chest in response.

“Nothing’s bad this week. Everything’s bad has passed,” I said to the Counsellor. The counsellor tilted her head and raised her eyebrows in skepticism, before scribbling notes on her notepad.

In the next few counselling sessions, The Counsellor got us to express our answers to her questions through art. She asked us to draw a map of the transplant season, a house with weeds (bad things) and flowers (good things), boats of worries that we imagined ourselves tossing into the sea… and after four sessions, she released us from the counselling duties. She signed off that we had figured ourselves out from those dark days and were ready to live our lives in the light again.

The healing and battles that brought me here, that brought us here, only made our relationship stronger, not weaker. At the same time, it taught us that we were not facing our situations alone and we had each other. We learnt to confront our emotions, to cry in each other’s embrace and to throw our pillows at each other. And we learnt that we had friends like Xinlin who would watch us fight but still make us avocado egg toast and bak chor mee.

We were ready to face the world once again, this time hand in hand.

This one’s for Barbara, Beth and Martha. Who questioned me about my faith, but the truth is, I still struggle with it.

As a child, I went to church with my parents. Every Sunday morning, my parents would pull my sister and I out of bed, don us in our Sunday dresses, brush our hair and shuttle off to Sunday school. At Sunday school, we learnt about the Christian faith. We sang slow hymns and fast modern songs. We listened to tales and watched puppet shows of Bible stories. We memorized Bible verses and quizzed each other on them.

Despite my Sunday routines and the fun children’s Sunday school, I struggled a lot with my faith. I could not reconcile the promises in the Bible with my sickly self. When the other kids were jumping and dancing during the Protestant style worship sessions, I stood at the corner, knowing that just one jump would send me breathless. When the other kids were allowed a “Sunday special food” day to dip their fingers into McDonalds sauce or splatter their mouths with the black sauce from the Char Kway Teow (stir fried noodles), I ate plain white porridge with some shredded chicken. The canteen uncle was always so puzzled at my order, along with my insistence of no seasoning, that he charged me only 50c for the meal. My meal was so bland that during lunch time, the kids would not sit with me, because my food was “yucky!”

The church leaders will remind me constantly of Jeremiah 30:17, “For I will restore health to you”, and Jeremiah 29:11, “For I know the plans I have for you”. Once in a while, a group of them will gather around me and lay hands on me, praying in a mixture of intelligible language and unintelligible tongues.

I learn and mutter prayers every night. They assure me God has a plan for me, which made me feel powerless against destiny. It made me feel that medical treatment would do me no good, because it might not fall into God’s plan.

Or maybe God’s plan was for me to die as an infant, and medicine had derailed his plan.

They told me that I need to be a good servant of God and serve in Church. I served as an usher, wondering how many more minutes I needed to be “good”. When I still was not healed, I saw serving as a chore, where I had to sacrifice 30 minutes of my sleep to reach before service started, precious sleep that could very well make the difference between pain and no pain for the day. I stood at the side and handed out the day’s booklets, because I did not want to walk people to their seats; too much walking and my feet would swell. They told me to offer Him whatever little I have for my allowance, because He will multiply whatever I put in the offering bag. Under peer pressure of both the leaders and the other kids, I would put whatever little I saved up for my medication into the bag, watching with dreadful eyes as the bag leaves the row.

Over time, I begin to lose hope. How long did I need to pray for? What if I died before my queue number to be healed was called? Or maybe God’s communication infrastructure was ancient so the prayer needed a long time to reach Him, which is entirely plausible, because He is ancient too.

Every Christmas, the churches host the Christmas Day service. The sermon tells of The Nativity story, which is the birth of Jesus Christ, the son of God. His birth signifies salvation. The story is also meant to share love, hope and joy. Every year, the Christmas sermons would end with a prayer and a call to the altar for two things: salvation and healing. When it was time to call for healing, the pastor would preach about the healing miracles that he had witnessed in other sermons: people being cancer-free, the mute being able to talk, people in wheelchairs being able to walk. Every year, as he preaches that segment of the sermon, a little fire will ignite in my heart, and after a great deal of hesitation, I will, once again, muster up some hope to head to the altar.

Please, God, make me normal.

Yet every year, no miracle happened. In fact, I only got weaker. My body began to surface more symptoms: I got breathless more easily, my nails got whiter and more brittle, I swelled up more and more frequently, and I could eat lesser. Every year, the hospital visits only got more frequent. Every year, when I was sick, I got lonelier escaping into my fantasy book world, while my friends were growing up, wearing heels and dresses, going for parties, traveling and raising children. In all my surgeries during my lifetime, only 5 friends and teachers had ever visited. So I faced many surgeries, and battled many dark thoughts praying for God to be real, because I actually needed a friend.

I am probably a blip in the complex system of the universe.

I begin to lose faith. Where was God when I needed Him to magically fix me at church? Will I ever be fixed? What was church for, if everyone there went for service and served in roles, and only participated in the fun social activities, but when I actually needed help, no one turned up?

The concept of faith as the “assurance of things hoped for, the conviction of things not seen” as taught in the book of Hebrews was too confusing and frustrating for my younger self. How could I be assured of a better life, when all I did was get weaker? How can I have conviction when the medical team in Singapore had even given up pursuing a cure, and was just sustaining my life?

*

For a good period of time as a college student, I left church. I hated being the last one walking from the cafeteria to the service hall, and being chased along by my church group mates. I really did try to walk as fast as I could, but they sniggered that I walked slower than another girl who was pregnant at that time. “She’s carrying 5kg of another human and she’s walking way faster than you!”

Yes, because I’m carrying 10kg of water.

I hated being questioned on the weeks that I went, on why I was missing the past few weeks.

I was sick, and none of you came to visit.

I hated having to leave service multiple times to head to the washroom because I was eating water pills and had to purge the fluid. I hated not being able to eat the food at the hawker center that the group went for lunch. I hated being chased around by the young toddlers my friends popped out, I had no energy to entertain them.

Most of all, it came a time that I just needed the rest on the weekends, to really, try and breathe. Getting up was a chore; in fact, taking my first breath in the morning was a chore too. I needed rest, so church was not it.

*

Today, when I go to church, I sit alone, in an aisle that no one is sitting in. Over the years, dealing with my illness alone has made me comfortable with myself. I sit in the silence and allow the glass shards that were stuck in my soul to work their way out. I remember the times that I mentally sang “And He will raise you up on eagles’ wings” while the anesthetic solution was being pushed through my IV. It was the first song that came to my mind when I told myself to sing a song as I was strapped to the operating theatre. I remember the day I woke up from my transplant, trying hard to cry from the pain, but thinking, “God, you really meant it when you said you will give me a new heart, huh” That verse from Ezekiel 36:26 had been quoted to me so many times by so many church leaders, but I’ve never believed it — where do you find a spare heart that suits me in Singapore?

Over the years, I’ve come to terms with my faith. I still believe miracles exist, the same way that children believe that tooth fairies exist. But miracles don’t always happen in a momentous moment in the biblical sense; rather they happen through sprinkling of answered prayers.

While everyone stands up with two palms opened up, I sit in silence and let it settle around me like the song that hasn’t started yet. Silence is the pause between the beats, the space between the lyrics, the breath before the chorus drops. It is the waiting, the stillness, the moment before something new begins. And when the music finally plays again, it feels different. Because I’m alive.

Angela, thank you for inspiring this piece with your great story on your fierce fight through junior college days. I greatly respect you, and I hope that one day I will be able to fight the world along with you.

As a child, my physical limitations were normal to me. They defined my world and I adapted around them. For 30 years, I learnt to deal with them and I learn to explain that I cannot join activities or eat foods because of my health. Even today I still do the same, “I can’t rock climb. I have a health problem.” I admit that sometimes I play the health card because I didn’t want to try a new activity without the comfort of my family, because it is hard to imagine someone being able to watch out for me as much as they do when I learn a new skill. It is hard to trust that a friend would tell me to grab a nearer rock because if I reach for the farther one, my chest scar might rip apart; it is hard to imagine that a friend would watch every move with eagle eyes and be ready to catch me when I fall, and if I do, catch me firmly.

These days though, as I grow into the thirties and try new skills with Adrian (who has tried all these skills as a young college boy), I start to learn about how unfair the world can be to other people. I hear stories from a lady I extremely respected about how she injured her wrist in her junior college days and felt that the world was crashing around her. I read messages from friends who have been diagnosed with cancer bemoaning that life is unfair. I see Instagram stories of friends whose kids have been diagnosed with one disease or another, and they groan at the world, at God, at life. They berate, “life is unfair”, making me wonder:

what is fair?

That one friend Nicole whose toddler has been diagnosed with leukemia texted me for comfort. After a few days, I hesitate to reply her with my experience when she asks for them, choosing to only respond cordially and provide words of affirmation. She belittles my experience, emphasising that I did not have life threatening cancer, but forgets that I have life-threatening heart issues. At least cancer is more common than my heart problem, and there is better medical infrastructure for pediatric treatment.

Nicole thinks I have it lucky, but I say her child has it lucky because she can afford the time and money to sit by her child’s side during every treatment, a luxury my mum could not afford me. She gave after school tuition to other kids and babysat other kids while I sat waiting for the doctors in the hospital, so that she can keep me alive. I didn’t tell her that there were so many times I wished she would spend that afternoon with me instead of the other kids, but I knew we needed the money.

Nicole says I don’t remember the scenes when I was a toddler, but I tell her I do, to her disbelief. I remember how Dr William would chase me out of the door to the playpen but I could still hear his deep voice telling my parents that he will waive his fees because my parents are struggling with money. I wanted to tell Nicole that she needed to stay calm for her kid and not fuss over too much, because a kid knows the emotional state of a parent more than you think they do. The kid will recover better with a happier parent and things to look forward to, so let their siblings play out in the playground and not limit play to home only. Home is no different from hospital, with all the medicines, syringes and measurements. The playground is. Nicole counters saying it is to keep the child free of germs, and prevent her siblings from bringing back germs from the outdoors.

I rather fall sick playing than fall sick being sick.

Nicole says that my suggestions of drinking a cranberry juice with dexamethasone is naught because it is tough to even get a toddler to drink anything, and I smile. I smile because silence is what is expected of me. Nicole was pushing aside my suggestions and wanted to wallow in her self-pity. I knew she had her preconceived biases and would not consider my words. I smiled because I knew that drug. I knew it inside out, I knew its side effects and I knew exactly how long it takes before the nausea kicks in. Or the loss of appetite. Or the fatigue. I knew how it tastes with plain water, with milk, with orange juice, with cranberry juice, with ginger ale… I knew it so well I could spell the complex word dexamethasone when I was just in secondary school. I do not have cancer, but I was a sick kid.

I was that kid that you see when you look at your child. I was the kid that had a feeding tube down my nose. I was the kid that couldn’t go out to play because I was in the hospital. I was the kid that kept my hair short because I needed to go for surgery. I was the kid that had to find a way to eat my medicines. I was the kid that wouldn’t talk because I was processing the situation.

Nicole, along with many of my friends, did not understand that I was the kid who lived. I survived. What you are looking at is a survivorship bias, because you did not see my friends in the same pediatric ward that did not make it out to the sun. You see me, who wants to love the sun, the grass, the wind, for all it could not provide me. For most people, being healthy is a normal part of life. It is expected to be healthy, and it is not expected to come into any form of pain or injury or paralysis at a young age. Falling gravely ill is something to be dealt with at a ripe old age of maybe 50 or 60. So every diagnosis of a stomach illness, a cancer, a tumour, or a paralysed hand, is the world being unfair to a person.

People have often remarked that the world isn’t fair to me, they’ve often asked me if I felt life wasn’t fair. Truth is, I had my own fair share of berating God for making my defective body. But I have long learnt to shed the shell of unfairness. Maybe it is because I grew up being sub-normal, so by my standards, being normal is a glory. Maybe it is because I learnt to make my sub-normality my normal, and stop thinking of what I could be.

The thing about being sick is that the day continues to spin the way it has always done. People on the train still walk at blazing speeds; people at the hawker centers still scream the orders loud; the trees will keep growing, and the rain will keep falling. (Side note: it’s quite easy to see which season I wrote the piece huh.) So I needed to spin around with the world.

I wrote this piece in response to a few social media posts by my friends, and I wanted to say:

In peace, we find out who we want to be. In war, we find out who we really are.

You are fighting a war with your life. You are fighting a war with your thoughts and emotions. Come, hold my hand, as we win this war together.

Much thanks to Barbara Phillips for inspiring this piece. I told you I would draw inspiration from our conversations and respond in essays. I meant it.

Also thank you to Beth Jacks for your adamant rebuttal when I told you “I think my brain is the only good part of me.”

When your body is withering, it sends all its resources to its brain. My feet could be icy cold and purplish blue, my hands could be freezing cold, and my stomach would not be able to digest any food, but my face would be flushed pink and the cogs in my brain will churn fervently. The only way you could ever tell that I was suffering was that my lips were bluish-purple. Sometimes I wear a tinted lip gloss or a shiny lipstick so people would stop questioning about my abnormal appearance.

My earliest understanding that I was intelligent beyond my years was in primary 2 mathematics class when I was 8 years old. I was reading a book underneath my desk while my peers were working on their numbers workbook. The teacher caught me and berated me for not working on the sums, but in actual fact, I had finished the entire workbook. She did not hear my plea for more work, or harder work, and instead made me stand at the corner of the class without my literary entertainment for the rest of the lesson.

In primary 4, every student in class was given an orchid to plant and to care for. I had just read about cross-pollination of flowers, and I wanted to give my orchid a try. I wanted to pollinate two orchids of different colours and ecstatically waited for the orchid to bloom. Every recess time, I made a trudge down one storey of stairs to visit my orchid. I watered it and sat beside it, reading to it as my mum would read to me before bed. Needless to say, I only had the technique of a clumsy ten-year-old, and my orchid died. The science teacher gave me a harsh admonishment, and told me that I should have followed instructions for the orchids were expensive to procure.

I was just trying to have fun.

Although I was often missing class due to my hospital visits, I was always scoring near the top of my class for my examinations. I had a mini provision to leave school when main classes were done and not stay for enrichment sessions, because they ended at 6pm, which stretched my sickly body too much.

Naturally, the other children thought that I had special provisions. I was mocked for being the “teacher’s pet”, laughed at for getting the desired locker that was the nearest to the classroom, and ostracised because I had permission to enter the school via the back gate instead of the usual front so I did not need to waddle too much to get to my classroom.

At recess time, I stayed outside the classroom to eat my sandwich, and sometimes sat on my desk to read another book that I picked up from the library. The problem was, my classmates thought that I was secretly spending the time to study or work ahead in the workbooks. When I left the classroom, they would rummage my bag in an attempt to find the magical notes that scored me top marks. I don’t know if they ever found it, or what came of it, but I acted as if I did not notice my books were rearranged.

I had something they coveted: intelligence. Intelligence that burned brightly despite, or perhaps because of, adversity - much like how fever is the body’s intense response to a viral infection. Even more so, they assumed that my intelligence was sharpened through my time indoors, while I was being excused from physical activities.

It was difficult to make friends, because no one would talk to me about the history stories I loved, or the musical composers that I read about, or the space science that I wanted to pursue. I read Richard Feynman’s essays on quantum mechanics, not comprehending a word, but imagined floating in the vast multiverse, and yearned to take part in the mathematical computation in just one particular blip of time. But I was in school, and the inconspicuous thing would be to act as though I belonged there. I tried to sing along with the latest music and groove with the dance moves. I tried to gossip about teachers with my classmates (although at the time I rather despised many of my teachers for not challenging me, but looking back, I needed the normalcy). I tried tasting the foods they ate — sour snakes, popping gummy, fried seaweed chicken…

But the truth was, of course, that I did not belong.

I thought that secondary school would give me a respite from my primary school life. I tested into an elite high school in Singapore, NUS High School of Mathematics and Science, not by having a comprehensive tuition schedule or by burying my head in preparatory test questions. There are some high schools in Singapore that require specialised testing procedures for admissions. NUS High School arranged large scale testings in the examination halls of the parent university, NUS. Final year primary school students sit in long rows of tables, hunched over a paper, and the only noises one hear are paper shuffles and the clock ticking. Up to a thousand 12-year-olds battle for only 250 places in the particular high school, in hopes that the premium education of the high school would give them a better shot at university. The students are selected from a suite of tests: mathematics, chemistry, physics, biology. In the competitive Singapore society, tuition teachers and classes sprout up to help children place in these tests.

I enrolled myself for the admissions tests because everyone in my class was testing for some elite school or another. For this school, I passed the tests easily. When the other candidates exit the hall complaining about the difficulty of the tests, I smile:

The answers were all in the books.

Since I wasn’t a normal child that could play outdoors, I read my way from one end of the library to the other. I passed the physics test because I read about relative velocity in a Secondary 3 textbook. I could match the symbols of the compound elements to their names because they were listed in a Chemistry book. I could pass mathematics because I read books on algebra and graph theory. I won’t say I understood all the concepts as I read them, but I at least, remembered them.

As I grew older, my body pumped resources into my brain more and more aggressively. I breezed through college. I was accepted into a top computer science PhD program - at Carnegie Mellon University. I wrote my ideas into paper publications and won awards from them. Yet, as I do so, my body was withering, aggressively too.

Through my life, I knew I was intelligent. But I did not take it for granted. I wasn’t intelligent because I was a natural genius or a savant or a child prodigy. I was a genius because my body was trying not to die.

So I worked hard. I studied, I read, I wrote as fast as I could, before life even took that away from me. Yet the day would come that I would face the fact that I have potential brain damages due to the multiple surgeries, the anesthesia and the intense painkiller doses. I was afraid I would lose my shine.

My brain is the only good part of me. All my organs are failing one by one, and what’s left after, is only my brain.

Nothing ends poetically: not my childhood, not my educational days. They eventually end, as all things end, but I take the memories and turn them into poetry. The days I spent honing my craft on the hospital bed gave me the compassion to teach another person, that ignited my desire to teach. The days I spent alone in the library acquiring facts led me to want to lead a research group that shares knowledge and pushes the envelope of science together, in collaboration, not in competition. These days that I spent crying tears from my heart formed a personality that lasted beyond time, a personality that today, easily gained me an eclectic mixture of friendship, jealousy and admiration.

One day when I am gone, the snickering by my “friends” will fade, and my writings and my research will live on as my legacy.

We started off the day after exams ended with a late night bus ride to the train station. We rode train after train with our Eurostar pass, trying cuisine after cuisine, taking pictures after pictures of museums and historical buildings, throwing snowballs at each other as we ran along the streets, and laughing through the trip. We had a fully packed itinerary that went past us so fast, that I only remember a whirl of activities and a lot of movement.

Nonetheless, I did remember the evening where my body started showing signs of breaking down. We were at Vienna, just finished admiring a beautiful and enormous museum. We stopped at a Chinese buffet store for dinner. The buffet was rather cheap, and being starving and cold students, we needed food. Towards the end of the buffet, as I returned from the washroom, I realised that my legs were heavier than they should be. That evening, I took my boots off and realised that my ankles had ballooned.

Perhaps I sprained my ankle. But how?

I quickly deduced it wasn’t a sprained ankle because it did not hurt at the ankle point. Instead, my skin felt like bursting. The skin was stretched and pushed out, and I was having trouble fitting my feet into my boots.

The next morning, I called my mum, and she called my cardiologist Dr. Edmund Wong based in Singapore. After an exchange of pictures and emails, Dr. Edmund and team deduced that it was water retention. He advised me to take rest, elevate my feet and try icing them. He wrote in the email, “we expected this to happen one day, but not so fast.”

Not so fast?! I know that your team once said they would have to treat me like a 60-year-old, but am I aging at a destructively fast rate?

My winter trip still had one more leg to go — Munich. I made it through the train to Munich and to the hostel, but beyond the shower and breakfast rooms, I never had the courage nor energy to leave the hostel. My friends would watch me eat a full breakfast in the morning, so that I could last the day without food, and sometimes would drop food off mid day if their adventures allowed them to cross paths with the hostel again.

I spent three miserable days reading books, watching dramas, and hobbling to the shower room. I constantly poked my belly and my arms, and squeezed my feet, hoping that my poking would alleviate the swell. I iced my feet regularly and put two pillows underneath my legs, hoping the swell will subside. It would remain and trap me in my hostel room.

Back in London, the first thing I did was not to return to my dorm room but to head to the hospital. After several medical tests and some hours of waiting, the doctors prescribed furosemide. That was to me my first, and almost forever, encounter with the water drug. The drug would help me pee out the excess water that my body was retaining, and the swell would go down in about a week.

I cannot pee on my own? Oh no.

For two weeks after, I stayed in my dorm room, eating the furosemide three times a day. I ate plain porridge cooked from a rice cooker in my room — rice, with lots of water, and a teaspoon of soy sauce to reduce the blandness. I struggled to shower, for I had to hobble three dorm rooms away to the shared shower space. My feet were “as swollen as pig trotters”, as my friend Ting would describe them. I winced at her description, because pig trotters, is an Asian delicacy, and the pig would be picked as the best pig to be slaughtered.

The pig was meant to be slaughtered.

A week later, I was up on my feet again and started heading back to school. Two weeks later, the swelling came back again. I visited the GP (General Practitioner) again. He looked at my feet, squeezed my ankles, and picked up his prescription pad. “I’m going to tell you to take the furosemide again.” This time, he prescribed a lower dose to be eaten once every two days.

For years, I dosed myself once every two days. As time passed, the side effects became worse. I felt light headed the moment I ate the drug, and I would pee for hours. Each time I felt the urge to pee, it felt as if a wave of water was forcefully pushed out of my body, pulling all life along with it.

Over the years, the dose of once every two days turned into once every day. I knew it was time to eat the water pills because my heart would ache, it would swell, and so would my throat. I would be gasping for air, trembling as I hold the cup of water, and try as might to swallow the medicine, then I willed myself to wait impatiently for sixty minutes for the medicine to take effect. I would plan my days according to my medicine timings, making sure I did not have any outdoor activities, or any activities that I needed any element of concentration, for at least four hours after my medicine dose. I would turn up to school or to work like a zombie, trudging through the morning and mentally willing myself not to snap at anyone — for I was bursting with vulnerability.

A dose of once a day, then once every eight hours, this time topped with the drug spironolactone to trigger the water release. My shoe size grew from size 6 to 7 to 8. My clothes size grew from an S to M to L. I became extremely self-conscious about my image. I felt fat all the time, and would wear baggy clothes to cover up my swelling body. People would comment that “you put on weight!”, “you look prosperous!”, or that “you should exercise more”, “you should eat healthily”, and I would politely say thank you.

I try to eat, but I will always throw up. I try to exercise but I can’t last more than 2 seconds on the treadmill. I’m trying, really, really, hard.

When I was still swelling badly, the furosemide dose turned to once every four hours. In February 2023, after 11 years of forcefully purging water, my body refused to dispel anymore. That winter, my body retained more than 20kg of water, and I was not reacting to the water drugs. To trigger my reactions, the doctors in Pittsburgh prescribed metolazone to be taken half hour earlier than furosemide, in order to better stimulate the water release. However, that was not to be. I was still not peeing. Neither was I eating.

Despite all the toll I had, my desperate fears lashed out: how has it come to be this way?

I was admitted for a heart catherisation procedure to check out my heart function. Seconds after the probe entered my heart, the lead surgeon called for help. A series of calls were made, and I was admitted into the CICU ward. There, I was pumped with bumex twice a day for an entire week, until I reached a steady state, where my body weight was 44kg.

But I was alive. I survived initially by accident in Vienna, then by habit of constantly eating water pills and watching my diet, then by tiny increments of will so small that was barely imperceptible. I couldn’t really tell how I really survived; all I knew was that I wasn’t ready to die.

All that changed on 22 March 2025, when a bunch of nurses from my pre-transplant days attended my violin chamber orchestra concert. It did indeed feel strange to see those nurses in the light of day, with all my movement intact. They felt strange to see me with no IV tubes attached that they have to avoid, no swollen body, and no need to hold me as I walk. I played the Symphony Singulière by Franz Berwald in the Violin II section, at second desk. That was a great accomplishment, because not only was the symphony rather difficult, but to make it to second desk less than 24 months post-transplant in an orchestra meant that my recovery was beyond imagination. At the drop of the baton, I put down my bow and heaved a sigh of relief, reeling in shock that my fingers could move so fast and I could control my bow so well.

As I smiled at the nurses seated in the second row of the audience, I had flashbacks of the times I begged them to help me braid my hair, asked them to open my yoghurt, or screamed at them in hunger for not helping me with my protein shakes. I remember those days in the white sheets and beige blankets that I sat on watching my hands tremble, struggling to press the right button. I looked down at my hands as I loosened my bow. My fingers are now slim, my finger nails are pink, and my hands are steady. Gone were the days I could not intonate my notes properly because my bloated fingers hit more string than necessary. Gone were the days that I didn’t dare to look at where my fingers were placed on the fingerboard because my fingernails were white, and while my hands still tremble, I am slowly gaining control of it.

*

At 25 years old, I signed myself up for violin lessons. I wanted to carry my music with me wherever I go. With my throat swelling and my breath getting short, I have not been able to sing. I don’t understand the term “singing in the shower”, because I was already struggling to untangle my hair and reach to my toes to clean them, it was nearly impossible to draw more breath to belt out melodies. It seemed like an old age to learn the violin, but I had learnt the piano when I was younger, and I thought I would be okay.

I would be able to read music and play the violin, except that my fingers were not precise enough because they were always suffering from water retention, nor were my shoulders flexible enough because the pacemaker was inhibiting the movement, nor was my eyes sharp enough to discern that the bow was straight and at the right contact points with the strings, nor was my arm strong enough to provide weight to the bow, nor was my ears sharp enough to listen to the subtle changes in pitches.

I would go to many lessons light-headed from the lasix I had eaten a few hours ago, hoping that the lesson would brighten up my day. I would frustrate over not being able to accurately pitch double stops, nor be strong enough to hold down both notes, thinking that the violin was too difficult. I wanted to give up on learning the violin just like I wanted to give up on my life. I would head home every tuesday evenings, my feet swollen from standing over an hour during lessons, and massage my feet.

Somehow, with the guidance of my teacher, I past the cut of the school’s orchestra auditions. For a semester, I muddled my way through the orchestra, but did not get a chance to play in the concert. I went for the last rehearsal a day before the concert, but knew something was very wrong. I decided to skip out on the concert, and went into the hospital the day after.

A few evenings later, I texted my violin teacher that I had to pause my lessons indefinitely because I was sick. I had paid for the entire semester’s lessons and I was still to have about 8 more lessons. She told me she would hold my lesson timings until I returned, and would refund me the money. But that was not to be. I went into the hospital, and only emerged months later. That was the end of my pre-transplant violin lessons, and the end of studying with that teacher, for she took a step back from teaching.

Post-transplant, Adrian encouraged me to touch the violin. I fluctuated between happy and sad days at home, oscillating between rejoicing at my newfound human abilities and crying over my potentially lost capabilities. I tried to hold my violin in one arm, as it should be held, but my arm let go and the violin dropped to the bed. I tried a few times and gave up in exasperation. Adrian would hold the violin up for me while I tried placing my fingers on it, fingers which took a great combination of willpower and strength to place them accurately. I had just learnt to stand up three weeks ago and I was still figuring out which muscles to activate to move each body part. My fingers trembled involuntarily as they descended on the strings, and would not hold steady on the strings. The sound I produced was an unsteady wail of scratches.

I still kept my dream of playing in the orchestra. I found a violin teacher not far from my house that was willing to take on the challenge — of bringing someone pounded by illness to perfection. I was worse than a student starting from a clean state; I knew what had gone before, and I had fears and doubts of any possibility of playing again.

Leah taught me just like any other student, but was always wary of my current physical limitations. As our lessons began, she saw my trembling hands and placed them on the fingerboard, holding them steady. She watched my hands grow in strength, and waited until the right time to get me to try double stops again, “I think your hands are strong enough now.” Double stops require a lot of hand strength and control. The left hand would place two fingers on two different strings, while the right hand bows both of those strings. If the fingers were not firmly on the strings, or the bow was not steady, the sound would whimper. Under her encouragement, I tried again and again. She watched me smile as I made a clear, firm and ringing sound as I pulled my bow across the strings.

Leah watched me week after week as I shuffled my violin on my shoulder, finding the perfect spot for it to sit that would not annoy my fresh scars as I played. She gave suggestions and held my violin as I tested out new positions. She stayed by my side even as I changed my mind a few weeks later and wanted a new position or a new shoulder rest.

Unlike my past music teachers, she would never ask me to sing the pitches out loud, for she knew that my throat was suffering (my vocal cords were paralysed post-transplant). Instead, she would sing the pitches to me to help me find my notes. When I wanted to repeat a section, instead of humming the notes or describing the place in words, I would hastily play it on my violin. We communicated through music in the truest form.

In Leah’s house, the world stopped revolving and the tower of doctor’s diagnosis and advice crumbles. I couldn’t care less when I did not take my medicines just before class without a cup of water; I wanted to play (she would nag me and force me to drink a cup before letting me play). I couldn’t care if I woke up with my wounds aching, I would get dressed and head to her place. In her house, she held my hands as we stepped into the musical scenes we painted together.

Hand in hand, Leah and I discovered the flexibility of the human body. When I could wrap my arms around the violin to reach the highest position in an A major scale, she exclaimed, “That’s the first time I ever saw you do that!” We concluded that I was limited by my frozen shoulder, the shoulder that would not move because too much movement would make the muscles cut into my pacemaker. She allowed me to do the same scale a few times just so I can relish that moment. The next week, she made me repeat that scale again, just to be sure that the movement wasn’t a single lucky moment in time.

Leah stopped my playing as she heard the clanking sound of nails against the finger board. We examined my hands and determined that despite my then-weird looking fingers and hands, I had grew fingernails. We laughed as I bought my first nail clipper from Amazon. As time passed, we rejoiced together as my finger nails grew out and my nail bed cleaned itself up, and finally, as my nails turned from white to pink.

We tried vibrato. Vibrato is a technique where the violinist creates a fluctuation in pitch by rocking the left hand back and forth using the wrist or the arm. This creates a warmer tone and a more beautiful melody. For someone whose left shoulder had always been frozen, I struggled with vibrato pre-transplant. My shoulder would not relax sufficiently, and my muscles would tense up naturally to support the weight of the metal pacemaker that was keeping me alive. This time, we started from the beginning again.

Back and forth, back and forth.

I rocked my arm slowly, just like the first time I came into contact with this technique. I truly believed that I would never be able to play this technique, because my pre-transplant preconceptions told me that this notion was virtually impossible. As I played in the orchestra rehearsals, I watched in envy as the other musicians play vibrato so easily, so effortlessly, so melodically. Mine was a boorish rock, stunted by my mind’s push for the technique. A few months later, Leah asked if I wanted to try working on some vibrato. I said, “I want to show you my vibrato today.” I did produce some sort of vibration, some sort of warm tone fluctuation, that resembles an amateur vibrato, but Leah smiled widely. That was the beginning of me breaking the barriers of my prior limitations. Slowly, I learnt to express more vibrato, and complain about the tiredness of my arms when we do too much. Leah, too, pushed me gently, “I didn’t hear any vibrato in this section!”

Leah and I watched as my ears get more sensitive to the sounds and to be able to differentiate sounds that are barely a millimeter apart on the violin string. We celebrate as I first communicated through my bow, then my words, and one day, subconsciously through humming a phrase. We were both keeping our violins in our cases as I hummed the third movement of the Vivaldi Concerto in A minor for two violins. Without looking up, Leah said, “Yeah, we should do the third movement one day.” She caught herself as she said that, and we both looked at each other, mouths agape:

I could sing!

Under her guidance, I learnt to feel rather than to think. I stopped consciously thinking of where to place my fingers, how much strength to use, and mentally preparing myself for the next notes. I had to do that because my body and mind needed priming to get the passage right. I learnt to lean into the music, and breathed with it. I drew circles with my bow to express musical ideas and dragged my bow as I emphasised musical phrases. We played duets, we performed in recitals, we played for senior living homes, and we laughed together when either of us made mistakes.

We danced with our music. At the end of the concert, Leah was the first one to grab her coat and stand up. She was the first one to walk out of the audience, not towards the door, but to me. I saw her, and I walked briskly towards her, just like a kid running to her mum. She hugged me tight and said, “good job!” I hugged her tight back.

I couldn’t have done it without you believing that I would play in an orchestra from the first day of our lessons.

My arms were aching badly from putting all my heart in music, playing the last 30 bars in so much allegro and forte that one of my bow hair broke. As I packed my violin up in its lovely bright blue case, I reflected through all the moments that landed me on the second desk — the exasperation, the desperation, the frustration, and the joy, the excitement, the anticipation — of learning new pieces, new techniques, and playing. I played my best, as an appreciative tribute to the people in the audience who brought me to the stage: the nurses, my teacher and Adrian.

I know that one day I will wake up and the ache will not feel so heavy, and the mirror which I stand in front of to practice this instrument will someday reflect someone that I am proud of.

I have so much written in my Notes app, but school papers have caught me in an extremely unexpected way. So I will write when I can.

The doctors lied when they said that after my recovery phase, all my pain will go away. Some nights, like last night, I wake up in the middle of the night clutching my heart and wincing in pain, curling myself into a ball as I will myself back to sleep. After a restless sleep, I wake up again, this time in the morning, frustrated at the pain, and trodded sleepily out to the medicine trolley to pop two Tylenol pills before debating whether to lie back down on the bed.

At the left side of my chest, I can feel the weight of the pacemakers, the metallic touch of the devices that kept the bionic me alive for so long. I could trace the dent that the pacemakers made in my muscles, from the chest area to the side of my breasts, the dent that grew along with my body, reminding each year of the borrowed time I was living on.

I wrapped my hands around my chest, wishing the pain would go away. Pre-transplant, as my muscles grew around the pacemakers, they would start to ache. The metal began to cut into my flesh, the bump visible from my skin, more so than the scar that I so carefully covered with makeup powder. Each time I went into an afibrillation heart rhythm, the pacemakers would go into an overdrive, beating furiously in protest of my natural rhythm, doing their best to reel in my heart. As the pacemakers scream Stop! to the best of their mechanical voices, my body flinches with each beat and my mind screams Stop! too. Some nights, I get so tired of fighting that I fall asleep, in exhaustion, letting my mechanical heart fight my natural heart for hours. Finally, as dawn breaks, I wake up, barely able to breathe, but having just enough breath to heave a sigh of relief that I am still alive.

These days, post-transplant, I still wake up, gasping for breath, feeling the weariness of the fight. I complain to my doctors and they tell me that I’m still healing. They did echocardiogram and CT scans of the areas I complain about and confirmed that the muscle has just been depressed. They say that it takes about 3 years for all of that to go away, physically, or that it may never go away. I pound my fist in exasperation.

You said the pain would be gone.

Those nights I wake up, I would trod to school like a zombie, and where people ask about my current state, I’ll reply that I am tired.

I’m tired.

That simple phrase carries the weight of an exhaustion no sleep can touch. I couldn’t articulate that sleep can be a battlefield, where I fought the same war over and over again, where the enemies were the same ones who haunted me in my pre-transplant life, and I am afraid that I would never get away from them.

Those days I politely ask for rides to and fro school, hoping my friends will understand my state. I still don’t drive, even though the doctors have cleared me to do so, because I’m always tired from fighting demons at night, and my eyes can’t focus in the day time. Most of all, I still don’t drive because I still remember how the seatbelt from the driver’s seat cuts into the metallic pacemaker, the pacemaker that still makes a very big dent in my body. I still vividly remember the extreme pain as the seatbelt presses against the pacemaker, crushing my body like a block of bricks on my chest.

I tried sitting in the driver’s seat for hours, hands steady at the steering wheel, pushing the memory out of my head, telling myself that I’m a normal human and I can do this. But this forest of invisible trees still clouds my mind. The reflexes that solidified over the years kick in, and I freeze, in front of the steering wheel in my own car. The mirrors are set, the seat is adjusted, my foot is on the brake, yet my mind replays the past, and my hands do not take the leap.

I know that this pain should not exist; that this pain can be akin to a phantom pain, but I assure you, the pain is very very real. Pain, constant and quiet, has been woven into my body like a second heart. It is not new, nor is it out. It is simply there, the same way that the sky is blue. The pain keeps coming back no matter how much I try to ignore it, just as the seconds on the clock keeps ticking away. I learn to I move with it, most times around it, some times through it, because stopping is not an option.

The healing road to being human is not a straight road. It is the slow unraveling of knots you didn’t know your body had tied. It is the quiet mending of cracks in a heart that still beats even when it has been so broken, for so long. Being human is waking up each day even if I don’t want to, clutching my heart in pain while cursing and swearing. It is the silent will to whisper, I’ll try again, and kick away the covers to enjoy the cold still air.

Being human is gritting my teeth and telling myself that:-

One day, there will be no pain.