At 6 years old, dying is something that happens to other people. Actually, it doesn’t happens at all, outside of funny (temporary) cartoon deaths and some distant relatives whose funerals you aren’t allowed to attend anyway. Aside from playing dead with your tongue hanging out oh-so-convincingly, you do know one thing for sure – that there’s no way you’re gonna die, ever.
So I wasn’t scared when they told me something was wrong with my heart.
Having a twin made my diagnosis easier. We were constantly compared, with me the less active twin, tiring quicker and underweight. She explored the world with fervour, I was the one who couldn’t be bothered if a toy was out of reach. She started walking first, stumbling until she got it right, while I watched for two months until I simply got up one day and wasting no time getting on with it.
These could have just been personality traits, but then the incidents started. The first was when I went swimming at Lilongwe’s Capital Hotel with my Dad and my sister. We returned home with my sister bouncing into the next exciting activity, but I felt exhausted. I told my Mum “I’ve got a headache.” Also, everything I saw was tinted blue, like I still had “swimming pool” in my eyes. What I didn’t know at the time was my temperature was 2 degrees below normal. But I completely recovered in about an hour.
The second time it happened at a friend’s house. I felt so ill that I was carried, again complaining of a headache, with low temperature. Mum took me to my grandparents, a doctor and a nurse, so when they panicked, so did my mother. They got me into a hot bath as soon as possible and I recovered.
The third time, I arrived home from school – headache, tired. This time my skin was grey, sweaty and clammy. Mum rushed me to the hospital and refused to let me sleep, no matter how much I complained how tired I was. She didn’t tell me she was worried I wouldn’t wake up…
It was malaria season and the waiting room was crowded with sick kids, but one look at my alien-grey tint and everyone let us through. The doctor ran some tests, but found nothing, and saw that I had recovered within an hour. His best guess was malaria. Mum said it couldn’t be, since the symptoms were so different. The doctor told us to come on a quieter day.
The next Sunday they did a full barrage of tests and sent us to Blantyre for an echocardiogram. That was when they found the hole. Large, but difficult to detect any other way, was an opening between the left and right atriums of my heart. For non-doctors, this meant oxygen-less blood was mixing with oxygenated blood and being pumped around the body. The effect was that the right side of my heart was pumping harder than it was meant to, making it enlarged.
When Mum explained the symptoms, the doctor said this type of defect exists from birth, almost never shows symptoms, until one day the heart simply fails from overwork. Many only get diagnosed post mortem. Unrelated, my name means “good luck”.
To get the surgery I had to go to a special heart hospital in South Africa. Mum booked almost a year in advance (when internet wasn’t yet a thing, which was a minor miracle). My parents took my twin and me to South Africa, leaving my baby brother with my grandparents. The day before surgery, we enjoyed ourselves at the Johannesburg Zoo blissfully unaware that we were the only black family there. In 1994, South Africa was freshly out of Apartheid but hadn’t quite kicked some of its habits.
I was checked into the ward on a Monday for a battery of tests. Mum stayed as my guardian, while Dad and my sister stayed at a relative’s house. Oh the stories she returned with! She had tasted something amazing called a double-dog, which was two hotdogs in a bun, while I was stuck getting poked and prodded when I felt perfectly fine, thank you very much!
Surgery has a way of making you feel a lot less fine though. In adulthood I had to be reminded about some of the details of that time, but I remembered surgery. Getting rolled into the operating theatre, watching my parents’ faces disappear while masked strangers stared at me. A friendly doctor telling me to count to 10 as they gave me a mask to match theirs, never getting past “3” and worried that I had failed the test…
Waking up… too weak to even open my eyes. Not knowing the time. Giving up and falling asleep again.
Waking up properly. Bright whiteness, plugged into tubes and pipes like a post-apocalyptic cyborg. In a cocoon of drapes and beddings, feeling like only this corner of the world existed. Mustering my raspy voice to ask for water, only thirst existed in this world. Sleeping, waking up, nausea, just awfulness. Mum by my side at some unknown time. I was coincidently put in the same ICU bed as my grandmother had been for a triple bypass 2 months earlier.
Later I was told that while I was asleep, my sister insisted on seeing me despite my parents discouraging her, and she got somewhat traumatised. Oops! As I was recovering, some of my relatives came to see me, including my fraternal grandmother and my uncle. When I was recovered enough to leave the ICU, I was given a choice to go to the cardiac recovery ward with all of the other “zipper cases”, or the children’s ward. Since most of the zippers where elderly folks, I picked the kids. Duh.
After some physiotherapy, the next stage was removing my stitches. I wouldn’t wish this experience on my worst enemy. The cruellest nurse I’ve ever met pulled them out – one by excruciating one. The more I cried, the more she would snap at me and pull harder. That experience counts as my first encounter with torture. When she overheard my mum telling my grandmother that she would report her, she started being nicer to me. But that wasn’t the memory which lingered for years.
Four days after my operation I was wheeled out of the hospital, and my dad and my sister met us on the foyer. She was grinning while carrying a big pink teddy bear. My dad was carrying an identical bear, which he handed to me. It was too heavy to carry so handed it to my sister almost immediately. I didn’t like teddy bears after that.
When I got home, everyone gave me a lot more attention that I was used to as the quiet twin. The most common question was “How are you feeling?” with a sympathetic expression. I felt like I was miscast in a play, where everyone treated me like a wretched soul while I was more concerned about what book I’d read next. When I asked mum why everyone was asking how I was feeling, she explained that I’d had a serious operation and they were worried.
So I knew exactly what to do. I wasn’t going to disappoint them, as I knew from an early age that the show must go on. So whenever anyone asked how I was, I was appropriately mournful and self-pitying, appearing sicker by the day! But when the enquiries weren’t ending, I asked Mum what I’m supposed to say since I felt fine and they expected me not to be. The conflict! Mum said, “If you’re fine, then tell them that.” Thank goodness. That was getting boring fast.
As I grew, the stitches fell off, the Scar became a part of me, and I rarely think about it. I learnt later, when I met two other people with the Scar, that this was a luxury. One woman with the Scar had follow up operations every year and was on meds for the rest of her life. There are really only four times I have given the Scar any complex thought.
During my adolescent growth spirt I slouched, which caused a curve in my spine. That curvature pinched a nerve which was somehow connected to my op, and caused unbearable pain trouble breathing. I had a month of physio to straighten it.
During university when I lived in a residence filled with med students. Gosh, I love med students, they’re so excited at the fascinating medical misfortunes of others. I’ll never forget the disappointment on a student’s face when he heard my “annoyingly” normal heartbeat on the stethoscope.
Then, whenever I go to the dentist, I have to take a round of antibiotics before any procedure as a precaution to prevent infections reaching my heart.
Finally, when the writing competition I’m trying to win asks me to write a non-fiction story about my childhood. And who wouldn’t use this one?
Click HERE to vote.