Me and My Heart
When I was young I used to play hockey like every Canadian kid did.
Once I grew to the age where checking and other forms of contact became encouraged, I dropped out. I was roughly a foot taller (and a fair bit heavier) than other kids I played with and I hated the idea of hurting them - it was already something that happened enough accidentally on its own. To this day I still can’t see the justification of violence in hockey, but that’s not what this story is about.
To fill the void in my winter schedule I played indoor soccer, since I had already been playing outdoor soccer as long as I had been playing hockey. I quickly grew to love it. To me, indoor soccer is like playing outdoor soccer if you took out all of the boring bits like running to fetch an out of bounds ball one player was overzealously passing to their teammate, and it was far less competitive too. I usually try to be humble about things, but soccer was one thing I know I was very good at.
During a match when I was 15 I was on defense. Just like any other game I was running a lot. But suddenly I started to feel funny - the lights felt too bright, I was having trouble breathing and even standing proved difficult. I kept playing for a little while longer not really wanting to slow down the game or inconvenience anyone, but eventually it became too much. I returned to the bench.
I remember thinking, “I wonder if I’m dying?”. I wasn’t even particularly worried; I was so light-headed and elated that it didn’t seem like much of an issue if I did. Everything felt fuzzy and, though I’ve never fainted before, I was likely feeling exactly what it’s probably like before you did faint. The owner of the arena, my coach, and my mother all came to check on me and I told them I was fine - again, not wanting to inconvenience anyone. I sat a while longer but the feeling persisted on and on. I watched the rest of the game through a tired haze before going home and passing out like a light.
My mom was worried, as was I, so she took me to the doctor who then directed me to a specialist within the week. They both took blood from me, hooked me up to ECGs (Electrocardiogram machines - or those nifty things that graph your heartbeats) and asked me questions to make sure I wasn’t dying anytime soon.
Neither one of them saw anything unusual and nothing else had happened at all since the occurrence so I was starting to wonder if I had been overreacting, or even just imagined it all. Just to be sure, the specialist gave me a heart monitor to wear for a week - a big, clunky device with thick wires I had to tote around with me for days - and told me to go about my business. If anything felt unusual, I was to press a button and write a status report on a piece of paper.
The week passed without incident: I played indoor soccer just fine, went to gym class, and even sat through a few tests at school, but everything was hunky-dory. I returned the monitor for them to analyse and began to worry that I was wasting everyone’s time. ‘Someone else could’ve used that monitor who actually needed it’, was all I could think to myself.
That is, until my next specialist appointment. He asked what I was doing on Wednesday around noon, I told him I was having lunch with my friends.
“We noticed your heartbeat go up to 250 beats-per-minute”, he told me.
“Oh.”, was my dry response, not entirely sure what that meant and not really wanting to ask.
I think he could tell, “Anything above 200 beats-per-minute resting heart rate can be life-threatening.”
That scared me, now they knew something was wrong.
He told me what he thought it was likely to be: Wolff-Parkinson-White Syndrome, a tediously named condition where someone is essentially born with an extra wire in their heart messing its natural workings up. He also informed me it has a small chance of being lethal and that I had three options: take drugs every day, undergo one procedure to fix it, or just keep living with it and maybe I’ll be okay. Pragmatically, I wanted it dealt with, so I opted for the procedure. They scheduled me in for just after New Years a few months later.
In those months, I started noticing my condition’s presence more and more, as well as the symptoms that came along with it. There were some I was familiar with already: the fuzzy vision, light-headedness, heavy beating of my chest, elation. But there were new ones too: I would be very tired after it was over - so much so that I started sleeping in and getting to school late frequently. I struggled to make myself move sometimes, I would zone out until it was over while trying my best to act casual. I told only my close friends and family about it, powering through it at my fast food job (which, in retrospect, was a horrible idea). Eventually I had to stop playing soccer for my own safety - I could always go back to it after my procedure.
I had never had any kind of operation before, so the structure was new to me. The specialist sat me down to talk me through what would happen: the plan was to make cuts in veins in my neck and groin and insert tiny cameras which would be pushed in me towards my heart. Following this, they would repeatedly shock my heart to force it to beat sporadically to identify the problem and then zap the wire that caused me problems.
I was told the plan months before but now it was hitting me just how scary that all was; I watched the wall melt away behind him as he spoke, missing most of what he said out of fright. I didn’t want to do it anymore, but I had come too far now to back down.
I changed into the hospital gown, lay in bed and got all IV’d up and started to feel much better as I talked to my sister. One of the nurses was a great conversationalist and he helped keep me distracted through the whole ordeal too. They wheeled me into an operating room with multiple CRT televisions along one wall, removed my robe and applied bright pink disinfectant to my groin and neck (lavish amounts of it, but I’ll come back to that). Then the specialist came in, made sure I was okay and froze the incision areas.
They laid me on my side and began about their work, talking about incisions as I felt a bead of blood trickle down the front of my neck, which the nurse wiped up with a towel. I then felt small pressures before the CRTs I was facing began projecting images from inside my veins. It was only then that I started to wonder if I was, in fact, going to be conscious for this. I hadn’t thought to ask prior - I thought it was implied I would be put under.
I was wrong.
I watched as the specialist maneuvered the long cameras through my body. It was surreal, seeing the insides of my body pulse and move as I felt it. So strange that I forgot that it was even my body.
Eventually (and perhaps erroneously), the nurse put a towel over my head so I couldn’t see the screen anymore. I didn’t mind - it was starting to make me uncomfortable. Then the specialist went about inducing shocks to my heart, warning me beforehand. I felt my body tense up with each pulse he gave me and after four of them the nurse leaned in, saying, “Alright Devon, we’re going to give you a tiny dose of anesthetic”.
That also freaked me out - I had been thinking that I was under some light anesthesia. I know now that is was just saline that was in me up to that point.
The shocking process continued several more times until I finally lost consciousness from the anesthesia. The latter half of my procedure was a blur, but I recall hearing the nurses comedically struggle to transfer my lanky mass to a separate stretcher as they wheeled me to my recovery room.
When I came to hours later I was surrounded by my family who had come to visit, my girlfriend of the time included (though I insisted her not to because, once again, it was inconveniencing others). It felt great to be doted on by the people I loved and, possibly because of the drugs, I’ll remember those moments graciously for all my life.
Then the specialist returned with bad news - it wasn’t what he suspected it was. In fact, he didn’t really know what it was since he was fairly sure it had been Wolff-Parkinson-White syndrome. The whole procedure only proved it wasn’t and he offered two courses of action - more heart tests that could take months or years to determine a cause, or leave it alone. I chose to leave it. I had to stay for eight hours (most of which I slept in and out of and apologized to the nurses and my family) and then went home to eat my weight in chicken nuggets.
The following three days were spent in constant, burning pain from my...well, my testicles. I stayed up late the first night wondering what the hell went wrong. Eventually we called a nurse helpline which claimed I had a reaction to the disinfectant. I needed to ice it constantly for a few days to alleviate the pain and eventually the pain subsided.
Sleeping is hard with burned testicles.
As a result of my new diagnosis, I couldn’t play soccer or any high-intensity sport anymore. Exercise is good for one’s heart, obviously, but without a game behind it I no longer have much of a motivator.
One thing about having a ‘bummed heart’ (which is what I call it to those inquiring so I don’t need to explain) is that you become acutely aware of your body, as I imagine others with conditions experience too. It almost sounds strange, but my condition makes my heart really feel like it’s a separate part of me - like it's just a creature that decided my chest cavity was a good spot to set up shop for a while. When I forget to breath it feels like my heart is greedy for oxygen and I need to inhale it all through my mouth like a whale devouring invisible krill. Same goes for running, walking, or even just talking to others casually. I also notice that if my heart feels particularly vulnerable, it often means I’m overstressed, overtired or getting sick, which actually can feel like quite the superpower since my chest tells when I’m getting sick sooner than the rest of me does. Drinking sugar or caffeine is something I try to avoid too, since my heart is always extra hyperactive after a can of pop or a chocolate bar, but being a college student this can feel nearly impossible sometimes. Coffee would probably just kill me, I haven’t risked that.
I learned a few tactics to deal with my newly diagnosed “Tachycardia” (which is doctor talk for ‘generic faster-than-average heartbeat’).
First, sitting down helps. Always. Lying down is great too. Next, lift your feet up if you’re not in public, close your nose and mouth tight and clench “like your trying to poop” - doctor’s words, not mine. That helps keep it in line, but usually for me I find I just have to wait for it to calm down. Sometimes this takes a few seconds, other times it might take several minutes. It’s not usually fatal, but there’s always a chance, which is enough to make you constantly consider your choices. My friend also suffers from tachycardia and I’ve had to escort her to the hospital a few times so they can treat it for her when it gets bad. It doesn’t take too long, but it’s very inconvenient for her, so I’m fortunate I’m not quite as bad off as some people are.
Dealing with my condition socially is something I struggle with the most. It’s one thing to have your body affect your functioning, but when it affects my relations with others it can feel like too much sometimes. When people ask about my aversion to caffeine/sugar it’s usually easier to dismiss it as, “It’s not good for you” than it is to explain the whole story. When people ask, “Why don’t you exercise more?” it’s easier to say, “I don’t have the time” than it is to explain how I feel like a walking corpse when I go for a jog.
I also struggle to bring it up in day-to-day life for making others feel put out. Just the other day I felt an episode coming on at the end of one of my classes. Instead of explaining to another student awaiting my seat that I needed it just a bit longer because I was having a moment and needed to sit down to help it go away, I just forced myself up and stood outside in the hall for a while to recuperate. It’s difficult to exposition your condition when your body is punishing you and someone needs to learn how to rig a 3D model. It will often pop up at inconvenient times which just force you to power through it as well, which can be more exhausting. My favourite examples of this are during presentations (watching or delivering) and meeting people for the first time. Try to not feel self-conscious when your body is screaming for you to lie down with your feet up while you’re at a networking event.
The worst I have ever felt from my condition, however, was my trip to Canada’s Wonderland over the summer. Having not been to an amusement park for years, I was stoked. I met with my friends who brought their friends along and we went early in the morning.
I went on one small ride to test my mettle, had an episode with slight pain (a surefire sign I had to stop immediately) which resulted in me tagging along awkwardly with the rest of them to watch as they went on ride after adrenaline-inducing ride. I didn’t feel bad about missing out on rides - I did feel horrible they kept trying to check and make sure that I wasn’t feeling left out.
Don’t ever think this means I don’t enjoy talking about my condition or that it makes me uncomfortable to do so. I love helping people better understand it (and by extension, me) better and this is no exception. If you’re ever curious about it just ask me, I’ll be glad to talk.
If you read this far, all I can say is thank you. Thanks for listening to someone’s weird perspective and boring, droning stories about some random thing that affects my life. I appreciate it immensely. And if you started reading down here at the bottom - scroll up, you missed like, four pages worth of words, you dingus.