A Love Story

Instagram story posted from the Cardiac ICU, Pittsburgh, USA on 12 May 2023.

[7:44am] Looking forward to a better future.

[10:07am] There is hope. Praying it all works out.

I waited 29 years for a heart.

For the heart of a man who is 8 years older than me.

I wouldn't say it was love at first sight. In fact, it was definitely not love at first sight. We've never met before; we've been match-made in the most unlikely of places - the hospital. I expected it, and I've been mentally preparing myself for weeks. But when the proposal came, I still said, "Give me a day to think about it." Eventually, after much personal thinking and discussion with my family, I did accept the offer, the heart of a man who was, very honestly, far from my dreams; but reality is never fairytale like, anyway, so here I am to tell this story.

By all accounts, I wasn't meant to live. My face turned blue as soon as I made my first cry, for my tiny lungs couldn't suck in enough air. When I took my first steps, I fainted, because my heart couldn't pump blood fast enough to support my walk. At 7, my first year of elementary school, I underwent my first surgery, a temporary fix for my tiny heart. At 14, I constantly skipped school because my heart skipped beats. At 16, when all my friends went to boarding school, I studied in the hospital because my heart electrical functions stopped completely, and the doctors put in a pacemaker. At 18, I repeated my freshman year of college because my heart valves elongated and caused backflow of blood. At 22, I was reduced to only eating plain porridge and smoothies - nothing with any tinge of oil or salt. At 25, the year I was to begin my PhD, my pacemaker broke down from overuse, and I deferred graduate school to have a pacemaker replacement surgery. While I was preparing for my PhD thesis proposal and qualifying examinations, my heart decided that after fighting for 29 years, it was time to rest. My heart went into aflutter, a type of heart attack that is deadly within seconds.

So by all accounts I wasn't supposed to live. I had been revived by a defibillator at least 4 times in my conscious memory, lived on an artificial heartbeat for 15 years, and survived 49 days more of heart attack that I should have. My heart, the vital organ that gives the body life, has failed, time and time again.

Yet by all accounts, I lived.

To say it was a miracle would give too much credit to a supernatural force, and too little credit to a child's mind of resilience and hope. As a child, I knew I was different, so I was determined to turn my illness into my superpower. I became the cool kid who got out of weekly school family dance time and monthly fire drills, and could take elevators around school. I prided myself on finding the shortest, most efficient walking route for my ailing heart. Although I could not play catch at the playground, I sat at the bench and wrote a little gossip column about all the kids and sold them for a few cents.

Just like that, I grew up. I learnt to drive. I learnt to drink alcohol, and to dance till midnight at a pub, to date and to laugh, just like any kid would - all while watching the time to head home like Cinderella in order to eat my heart medications on time, before I had to clutch my heart in pain and crawl home, aided. But the inevitable still dawned upon me. It was the day where I could no longer eat most foods without my heart swelling up, no longer drink alcohol without severe palpitations, and no longer drive without my eyes blurring.

When a body is dying, all resources go to the upper part of the body to conserve it; I decided that despite my ailing body, I still had my brain. I enrolled in a PhD program, making use of whatever little I had left. My family, friends and especially my doctors protested fervently when I decided to move countries to begin an intense PhD program in 2021, at the height of the coronavirus pandemic. I did it anyway, hoping I could make my little mark on the world in the way I knew how to.

Little did I know that I was to have a lot more to life.

In the Spring of 2023, my fate changed. As my heart was debating whether to give up, a surgeon came into my ward and made me an offer of a man. He had offered me his heart. It was a perfect match, immunologically, but it was slightly too big for my body, and he had taken drugs before. I mentally listed the pros and cons, but eventually accepted the offer and underwent a heart transplant. The medical team prepared me for a year of hospitalisation and rehabilitation, but that childlike hope got me out of the hospital in a two month record time.

After 3 decades of being a subhuman and 48 hours of being heartless, I was so excited to be a normal human. I squealed when I first peed and pooped naturally without needing medications. Remember what it is like to be constipated, and then the flush everything out with diarrhea? That was my life of excretion: the constipation window made me bloated and breathless, while the medication induces long hours of peeing and pooping, along with some light-headedness.

My face produced oil, my skin stopped cracking. With that, came fingerprints that worked. Pre-transplant, fingerprints were almost non-existent. With my skin being too dry, regardless of how much I dab it with water, the fingerprints never come out. So every time I go to Disney World and require a fingerprint authentication to sign in, I could never get in without asking for a cast member to physically authenticate myself. Post-transplant, I was amazed how easily my fingerprints were captured by an airport scanner! I had a silly smile on my face when the fingerprint sensor turned green - it was the first time in my life my fingerprint had been successfully read!

Oh - my nails were no longer white as they had been since I was 17; they were in the pink of health. When my nails grew, my mum bought me a nail cutter. I was so excited to cut my finger and toe nails for the first time in my life; although, first, I had to consult TikTok on "how to cut nails with a nail cutter". Yes, it was a tool I had never needed. I finally understood what it meant to cry - to cry in pain, to cry in happiness, and to cry at a touching moment in front of the television - for I finally had tears.

I was so excited to live, once again. The doctors told me that I'd be in bed for at least 3 months recuperating. But as you can guess by now, I definitely did not heed their advice. I overcame the excruciating pain after two weeks of the heart transplant surgery and wanted to try something I could never before -- climb a flight of steps. Then I wanted to walk to the Starbucks down the street. Then I wanted to lift a carton of milk. And I wanted to run, and ski, and white water raft -- all the activities that I have not been able to do for three decades of my life.

Three months later, I took a flight from Pittsburgh to Los Angeles to visit the breathtaking Griffin observatory. This observatory is a place I wanted to go as a child. I wanted to wish upon one of the many stars in the sky, and have my dreams come true. That evening, I leaned over the ledge of the skydeck of the Observatory, watching the sun set and the stars appear. In my heart, I hoped for a shooting star. I quietly sung the Disney lyrics, "When you wish upon a star/ Makes no difference who you are / Anything your heart desires / Will come to you". For many years, I had one wish: to be a normal kid.

That night, as I leaned over the wall of the observatory's skydeck and admired the stars twinkling above me, as I had the rare chance to look into the 12-inch Zeiss telescope, I came to the realisation that my dream had already come true. I am normal. I am normal.

I AM NORMAL!