For 49 years it worked quietly in the background, unannounced and unnoticed. If I even considered my heart, it was clinical – a piece of me I knew I had but relied on without further thought. Not separate to the whole me.

My heart witnessed my hours and my days, supporting me as I roller-skated in the church basement, went on my first date, flew around the world, met the man of my dreams and delivered a beautiful baby girl. Beating, uninterrupted, steady and true. But we didn’t have a relationship, my heart and I. Even if a doctor used a stethoscope and could hear its rhythm, for me it was silent.

 

Before least year I was most likely to mention my heart in idioms…doing something in a heartbeat, learning poetry by heart, crossing my heart (and even hoping to die?) to keep a secret. I talked about it, as we all do, on Valentine’s Day or when I felt broken-hearted. I would come across someone unexpectedly and say they nearly gave me a heart attack.

But all that changed twelve months ago. Since the Covid vaccine, and the lupus flare that resulted from that, my heart has been my constant companion. What started as a racing that tore me from my sleep when my immune system went on the attack, eventually has become background noise that alternates between a mild hum and rattling tambourine.

Early on in this new relationship I found its presence exhausting. In an ever-growing bid for attention, it started constantly skipping beats and then throwing in extra big ones to ensure it would not be ignored. I was frustrated, then scared by this disruption. In the hospital, wired to monitors, I could both feel and see my heart beating out of rhythm whenever I woke up from the exhaustion it created.

Doctors and nurses came by and asked me how it was feeling, and I didn’t have the right vocabulary to explain. Was it pounding? Fluttering? Pressure? Palpitations? I had no idea. In my struggle, I fell back on contemporary culture and called it a “glitch.” Vanellope from the Disney film Wreck-It Ralph became my new hero—a feisty racer who is a glitch in a buggy candy-themed computer game and learns that she can use her defect to her advantage.

 

Eventually the hospital team found the right medication to stop the constant bucking and my newfound cardiac superpower settled down. But my heart never – in all the months that have followed – has been fully quiet. I still don’t have the right words to describe how it feels but it makes itself known every minute of every day, reminding me of the work it is doing to keep me alive.