Apart from my faulty, offbeat heart, my life as a 23-year-old college student is pretty normal. I go to class, sell shoes at a mall on the weekends and occasionally spend my nights sitting in an ER.
That’s been my reality for the past 10 years, but I’m still learning how to adapt to the feeling of helplessness that comes along with illness. I’m still trying to connect with the strong girl I was before my condition arose, and I’m still trying to make space for her in this new normal I live in today.
Eat, sleep, and breathe soccer
When I was six my parents enrolled me in soccer. I fell in love with it. My room became a shrine of all soccer memorabilia. Jerseys and posters of all the greats covered the walls of my lime green bedroom. By the time I turned seven, I had already convinced myself I was going to be the next Mia Hamm.
As I grew older, soccer continued to shape my identity. I became consumed with training, dieting, tournaments, and being the best. It was becoming less of a hobby and more of a job. But I didn’t mind.
I prided myself on putting in the extra work and being disciplined. I believed that if I continued on this trajectory, it’d be my face plastered on some kid’s wall one day.
During the week, I played on three soccer teams, while on weekends, I faced off against my brother in the backyard. We played thousands of one-on-one scrimmages in hopes of gaining my dads approval. I was invincible and in control of my own future. I was an eighth-grader with a ton of friends, and I’d just been voted captain of my soccer team and scouted for another. Life was good.
When I wasn’t scrapping with the boys and covered in grass stains, I was helping my mom in the garden. For me, gardening provided a sense of balance amidst my chaotic soccer schedules.
It gave me control back when I felt like I had none. It relaxed me, and I became fascinated by how a tiny seed could grow and adapt into a fully ripe vegetable. I enjoyed the process of tending to something — being patient then seeing the reward.
Although gardening and soccer started off as hobbies, looking back, the life lessons they instilled prepared me for the roller-coaster life can often feel like.
As important as the upswings are in your life, I believe it’s your downfalls that have a more significant impact on shaping you.
Fall 2011: why me?
I was 14 on the scariest day of my life to date. I was rushed to the emergency room after almost fainting on the soccer field. I was grey, weak, and it felt like my heart was beating a million beats per minute. At the hospital, the doctors ran some tests and pumped me full of adenosine.
The medicine they injected made me feel like an elephant was sitting on my chest for the longest 30 seconds of my life. It quickly slowed my heart rate back to normal and I began to feel better. They sent me on my way with a follow-up scheduled for a few weeks later.
After this ER visit, I knew I wasn’t the same; I was stripped of the identity I had worked so hard to create. I was no longer the strong, healthy 14-year-old. My soccer career was put on hiatus and my eighth-grade social status plummeted.
Word spread like wildfire around school, and suddenly I was the sick kid with a heart defect. I didn’t know what was scarier to lose: my physical health or my identity.
A few weeks passed and I found myself at the Variety Children’s Heart Centre after my scare waiting for my ECG results. I don’t remember what children’s show was playing on
“Alyssa?” the nurse shouted.
For a quick second, my eyes darted to the nearest exit. I took a deep breath and braced myself while the nurse escorted my mom and me into the doctor’s office.
“Well, there’s no easy way to say this; it seems as though you have Supraventricular tachycardia (SVT),” he paused. “You have an irregular heartbeat.”
As I processed his words, I felt my dangling legs go numb and my chest tighten.
My fears were confirmed; I wasn’t me anymore. Becoming detached from your identity can feel jarring to anyone. But at 14, you don’t realize how malleable your identity really is. You don’t realize how quickly things can change.
I was a confident and disciplined kid. My plan of action was to make it big. And the one thing that I relied on the most was slipping through the cracks. My body was failing me. Who am I without soccer? What do I enjoy doing? Who are my friends? These were questions I was forced to ask myself.
The doctor proceeded to tell me that this heart condition wasn’t life-threatening, but it did need to be treated right away. I was given two options: take medication for the rest of my life and keep monitoring my episodes or fly to Edmonton for
In just a matter of weeks, I was being wheeled into the operating room. The cold metal table felt exactly like how it sounds. Trying to comfort me, the doctor asked who my favourite soccer players were. It distracted me for a moment until a slight chill from the cold table tickled up my spine.
He instructed me to countdown from 10 with him. 10, nine, eight — lights out. Hours later, I woke up feeling less fearful and more optimistic. I felt the weight of all my stress and insecurities lift off my shoulders. My doctor said the chances of this happening again was nearly impossible, and I should never have any reason to contact him again.
So, what is SVT?
Mayo Clinic defines SVT as an “abnormally fast heartbeat.” My doctor explained that I was born with the condition and that isn’t uncommon for a condition such as this one to present itself around the age of 14.
For me, SVT felt like my heart was running a race it was never going to win. My doctor said many people aren’t aware that SVT can develop from other heart issues and medications. But it most commonly occurs around puberty.
SVT occurs when malfunctioning electrical connections in the heart or abnormal areas of electrical activity stimulate an atypical heartbeat says the Mayo Clinic. They also explain how when the heart beats too quickly it doesn’t give enough time for it fill and contract again.
A normal resting heart rate beats from 60 to 100 beats per minute but for a person with SVT it’s over 100. This is widely referred to as “an episode” by doctors and patients.
C.S. Mott Children’s Hospital Michigan Medicine reports that SVT is said to occur in up to one in 2,500 children. Although the condition isn’t
May 2020: Why not me?
I had just finished my first year of college, I was feeling a little run down and overwhelmed from the year behind me. Between managing deadlines, projects, and the COVID-19 crisis that emerged, heart palpitations and fatigue seemed something of a norm for a student, so I thought.
As my summer continued, the heart palpitations grew to be much worse. I was feeling lethargic and lightheaded. This was similar to what I experienced with SVT but the episodes came in waves and weren’t as drastic. My heart wasn’t beating abnormally fast, nor was I turning grey. Something just felt off.
My mind wandered to a million reasons why I was feeling this way. Maybe I need more sleep, exercise, water? I thought to myself. Nothing worked — I was feeling out of control.
I knew I’d eventually have to see my doctor. But between COVID-19 anxiety and my denial, it took a few extra weeks to finally work up the courage.
Two weeks later — masked up with sanitizer in hand — I walked into my doctor’s office. Although I’ve been through this routine a thousand times, the office’s overall vibe had changed drastically.
Every chair was placed six feet apart. Masks and sanitizer were in all corners of the room. Despite this radical change in scenery, it still felt like clockwork to me. Chat with the doctor, take my blood, and hook me up to an ECG monitor. And that’s exactly what happened.
It took two weeks for me to finally receive my results. At this point I was feeling more anxious by the day. I knew it probably wasn’t SVT because of the high success rate, and my symptoms seemed milder. But something didn’t feel right.
As I waited for my doctor, time felt slow. Framed degrees, family vacation photos, and a few water-skiing medals hung on the wall. He finally entered.
“So, want to hear the good news or bad news first?” I picked the bad news.
“We think you have Lown–Ganong–Levine syndrome (LGL) — the good news is that it’s not life-threatening,” he said.
I felt 14 again.
My doctor proceeded to explain my new condition while I listened in disbelief. He flipped on the TV hanging in the corner of the room and brought up my ECG results. Rows and rows of jagged lines that symbolized my fluttering heartbeat filled the screen. I couldn’t decide if I was angry or feeling sorry for myself.
I felt my identity slip away yet again. I held back tears as he tried to assure me that I was going to be OK. He explained my options: medication or another catheter ablation. For the duration of my appointment, the medical jargon went through one ear and out the other.
I cried in the car all the way home. I walked in the door and threw my keys in the bowl. Before I could make it to my room, something caught my eye out of the big window that looks out at our backyard. I walked over and stared out the window for a minute. The memories of soccer scrimmages and tackling my brother in the grass came flooding back like a supercut reel. But what caught my eye was the remains of our old garden. I started to think back to how beautiful it was and how it made me feel.
A sense of warmth and comfort came over me. Something I haven’t felt in a long time. I wanted that feeling back. And it was at this moment when I knew I could learn something from that garden. I just didn’t know what yet.
So, what is LGL?
LGL is similar to SVT. They are both considered a pre-excitation syndrome. This means electrical a pulse arrives too early to the heart and creates a fluttering palpitation feeling. The difference between the two is that LGL symptoms don’t always include a rapid heart rate like you’ll feel with SVT, but other symptoms can overlap.
The analogy that best describes LGL is needing 30 gallons to fill a bathtub and for some reason it keeps draining at the 29th gallon. The 30 gallons acts as your regular heartbeat and the 29th gallon acts as your electrical pulse. That’s what LGL is like. The heartbeat is always coming up a tad short. This malfunction is what causes symptoms like dizziness, fatigue, and shortness of breath.
According to a case study done in 2015 by EP Lab Digest, “the average age of onset LGL is 33.5 years, and females make up 70.9
Managing my condition during this pandemic still has its days. My reality has been altered, just like everyone else’s. Having to do school over video calls, quit my job, and put my extracurriculars on hold has been nothing short of difficult. On top of these inconveniences, my condition makes it harder to do normal day-to-day things like getting out of bed and running errands.
Due to COVID-19 my doctors’ appointments have been few and far between. I am still in the early stages of figuring out if medication or surgery is best.
When it comes to people with heart conditions, they often develop chest infections when they catch viruses like the flu. The European Society of Cardiology (ESC) says that health officials aren’t yet sure if COVID-19 adds risk to these people for developing infections, but it’s likely.
Even though the research is sparse, I have taken it upon myself to adjust my lifestyle as if I were at a higher risk. This means I’ve had to dial back on things like hanging out with friends and working out at the gym.
On the days where I don’t see the light at the end of the tunnel, I try to focus on the things I can control. Since last May, I have focused my efforts on eating healthy, exercising, and letting myself recharge when I know my body needs it. My lack of productivity this summer was a blessing in disguise. It provided clarity and allowed me to think in a different frame of mind.
The American Heart Association says within the last few years, doctors have seen a spike in younger women with heart conditions. They also say doctors have looked past women’s heart conditions because it’s been known as a disease more prevalent in men.
According to the American Heart Association the number of young people having heart attacks has risen from 21 per cent to 31 per cent. They also explain that young women are less likely than men to receive their necessary heart medications.
Although these statistics might seem a bit unsettling. For me, the break in the clouds has been being part of a community of young athletic women living with heart conditions. I’m truly proud to be a part of it.
Breanne suffers from arrhythmia resulting in atrial fibrillation or atrial flutter, which can be described as a faulty pathway in the heart causing it to beat rapidly which can only be treated through electrical shock (cardioversion). She says she first found out about her condition three years ago. She was rushed to the hospital after fainting while trying to get out of bed.
Being a physically active person her entire life the thing that changed the most was her inability to do physical activity without the increased burnout.
“I realized what a blessing it is to have a healthy body and how important it is to make conscious decisions that benefit your health mentally and physically every day,” said Breanne.
The cause of these episodes is still undetermined.
Breanne says she also struggles with anxiety.
“It’s added stress knowing I am potentially at a higher risk for a more serious illness (COVID-19) due to my heart condition,” said Breanne.
She believes society now lives in a constant state of stress and unease. She misses when everyone’s day-to-day routine wasn’t questioned, and human interaction was encouraged.
After recently graduating from architecture, Breanne feels hopeful for the future and is thankful she was able to find a job despite the economic climate.
While talking to my cardiologist over the summer I learned conditions like SVT, LGL, and atrial fibrillation are more common than I thought. Especially among younger women.
Olivia Roch, 24, works as a teacher in the River East Transcona School Division. When she’s not teaching via Zoom, she’s usually curled up with her favourite candle burning with a good book in her lap.
When Olivia was two years old, she developed a severe fainting problem. When she was seven, she was diagnosed with Neurocardiogenic Syncope, a severe vasovagal fainting disorder.
“I used pacemakers to regulate it from the age of seven to 15, but as the medicine has advanced, pacemakers are no longer used to treat my condition,” she said. “I now use beta-blockers medication to regulate my condition.”
Olivia was seven when she was finally allowed to play high-intensity sports such as hockey. But her friend’s parents often didn’t allow her to have playdates and she’d faint or have seizures during school or at hockey. She’d burn with embarrassment as paramedics stretchered her away.
“I never liked feeling like the spectacle and having everyone worry or feel sorry for me,” said Olivia.
She says she’s still working on acknowledging her fainting triggers and is doing her best to navigate the best ways to avoid them.
Even throughout the pandemic, Olivia tries to maintain an active lifestyle and healthy diet. She’s realized self-regulation is the most important so that she’s able to keep her blood sugar in check and doesn’t overexert herself.
Like Breanne and Olivia, having to live with a heart condition during the pandemic while also taking the extra precautions to feel safe has been taxing. When even a trip to the grocery store felt threatening to my health, I knew It was time to get creative.
I thought back to that day when the old garden caught my eye. I knew with all the spare time I was going to have I should make the most of it. I decided to grow my own garden. I grew tomatoes, cucumbers, carrots, and dill. Some flourished, and some, unfortunately, didn’t.
But like life, I couldn’t predict that. Besides learning that I don’t possess a green thumb, my garden did teach me a few lessons along the way.
It taught me how to be patient, how to prioritize, and how to adapt. And I’ve learned that I am not a victim. In a weird way, I’ve looked back at this summer as a silver lining. It provided me with a new perspective and a set of tools I never knew I had.
I’m not saying I have reached the pinnacle of self-discovery. I am only 23 and still have a whole lot of myself to chase. What I am saying is I’ve stopped viewing my heart conditions as downfalls and more like detours. I remind myself of the things that ground me rather than the things that consume me. I might have been forced off the beaten path, but it led me to something greater.
Today, I feel more centred than I’ve ever been. I have a newfound confidence. I no longer rely on a sport to build me up or shape me. I enjoy new hobbies like photography and cycling. But those are just hobbies — nothing more and nothing less. I am not a professional photographer, just like I am not my heart conditions. I am Alyssa.