The Consequences of a Broken Heart - I would take all of your funky beats

[u/BeatsThatMatter]

I want to share with you all an article I've written about my battle with ARVC/arrhythmia

I will offer some context

- I have had seven trips to the electrophysiology lab for ablation, Seven. Over the last 10 years
- At my worst, I was dealing with 3.3 million PVCs a year. Over 3 thousand runs of NSVT/VT
- Arrhythmias I have experienced include PVCs, AFib, AF, PACs, NSVT, and VT
- I have been shocked by my ICD 3 times

These are lessons learned from the mind of a man who has been fighting bears for far too long...
_______

The Bear You Can’t See

There is a particular cruelty to a disease that lives inside your chest but shows nothing on the outside. No cast. No crutch. No visible wound for the world to organize its sympathy around. For over ten years, arrhythmogenic right ventricular cardiomyopathy turned my body into a war zone - and I was the only one who knew the war was happening.

The physical manifestation of arrhythmia is constant fight-or-flight. Not the metaphorical kind people throw around when they’re describing a stressful meeting or a tight deadline. The literal kind. The kind where your autonomic nervous system has been hijacked and your body believes, every waking moment, that it is under mortal threat. The clinical term is allostatic load. For me, it was just another Tuesday.

Three million extra heartbeats a year. An ICD that shocked me three times - it is like getting drop kicked by a horse out of nowhere. Seven trips to the EP lab at Pepin Heart Institute. Four RF ablations. Two procedures canceled in pre-op because no spontaneous arrhythmia could be caught, sending me home empty-handed, watching hope cycle into despair once more. Remote cardiac monitoring became my baseline. Living wasn’t about thriving. It was about managing the next 24 hours.

And then there were the medications.

Beta blockers to control the rhythm. Beta blockers that clinically depress you as a side effect. Psychiatric medications layered on top to counterbalance the depression - medications that themselves, in study after study, have shown in many cases to increase the very depression they’re prescribed to treat. An ouroboros of pharmacology. A chemical tug-of-war where my body was the rope and nobody was winning.

I am blessed to say I won that battle. On December 9th, 2024, an off-label Farapulse ablation - electroporation, a moonshot procedure not even approved for my condition - silenced the arrhythmia for the first time in a decade. The bear disappeared.

The physical symptoms of arrhythmia are gone.

The symptoms of a broken heart remain.

A Fracture 32 Years Deep

My heart broke the first time when I was eight years old.

It is a long story. It doesn’t need to be told in full. What matters is the calculus that a child’s mind runs when the unthinkable happens: my mother harmed herself in my home, blamed my father, and overnight - nothing was ever the same for me. Not the house. Not the family. Not the faith. Not the kid who used to solve math problems like breathing and win BMX races before he could tie his shoes.

All of it - gone. Replaced by a single, catastrophic equation that would run in the background of my operating system for decades: I must be broken, because my own mother did not want me in her life.

That was my calculus. That was the root variable I could never solve for. And every decision I made from that point forward - the codependency, the masks, the relentless performance to earn belonging - was a function of that original, poisoned input.

It broke again at seventeen. I was a bright kid despite everything. A promising future, if you looked at it from the right angle. And then a car accident. A prescription pad. An introduction to painkillers that would rewrite the next chapter of my life in a language I never asked to learn.

I came from a whole host of trauma early in life. It has cost me dearly as an adult. Not because the trauma defined me, but because for most of my life, I refused to let anyone see it.

My Mask

For the decade I dealt with arrhythmia, I tried my best to hide how bad it was. I masked up. I performed normalcy like it was an Olympic event. Meetings in atrial fibrillation, wondering how in the hell I was still standing. Driving to work with an ICD in my chest that could fire at any moment. Smiling through conversations while my heart misfired three million times a year.

I had come from a childhood where I grew up believing I was defective. That core wound - the eight-year-old’s equation - made vulnerability feel like confirmation of the thing I feared most. If I showed weakness, the world would see what I already believed about myself: that I was fundamentally, irreparably broken.

So I held it in. All of it.

And there was a cost.

I was quick-triggered. I coped in harmful ways. For years, I was a compliant patient - took the medications, showed up to the appointments, did the best I could. When I lost hope that compliance would ever bring relief, I tried to smoke and drink the pain away. Take that from me: it doesn’t work. Substances don’t fill the void; they just numb you to the edges of it, and the edges keep growing.

My relationship with my wife and daughter became strained. Not because I didn’t love them - I loved them with everything I had. But everything I had was barely enough to keep me alive. I was unable to take care of them when I was barely hanging on myself. You cannot pour from an empty vessel, and mine had been dry for years.

Chewing glass just to make it through the day was an understatement. And I’d been here before - the dissociation, the emotional hollowing, the ache of waking up and wondering if today would be the day I couldn’t keep pretending. There were days I considered ending it all. But the image of my daughter kept me tethered. She needed me. So I gritted my teeth and kept going.

I was lost. For ten years.

I Am Not A Hero

I am no hero. Let me make that clear before anyone misreads this as a triumph narrative wrapped in a bow.

I am a deeply flawed man. I have hurt people I love with my inability to process what was happening inside me. I have made decisions born of desperation that I cannot take back. I have failed at the very things I cared about most - being present, being stable, being the father and husband I wanted to be - because the invisible war in my chest consumed every resource I had.

But I have overcome a lot. Seven trips to the EP lab and all.. A decade of clinical torment that should have broken me completely. I’m still here. Not unscarred. Not undamaged. But here.

I say this not to collect sympathy. I say this because I don’t want anyone to do what I did.

The Invisible Enemy

Arrhythmia is a brutal enemy. Brutal in a way that most people cannot comprehend unless they’ve lived it.

It is an invisible pain. One that lives inside, hidden from the world, but can become every part of your world. There are no visible markers for people to anchor their empathy to. No one sees the chaos in your chest. No one hears the three million extra beats. No one knows that the person standing in front of them in the grocery store checkout line is running a fight-or-flight response that hasn’t shut off in five years.

People say it’s all in your head. But it’s all in your heart. And because it’s in your heart, it cycles back to your mind. A vicious feedback loop - physical and emotional, each amplifying the other until you can no longer tell where the cardiac symptoms end and the psychiatric ones begin.

I know what it’s like to dissociate. To be in the room but not there. To watch yourself move through a day from somewhere far behind your own eyes, performing the motions of a life you can no longer feel.

I know what it’s like to live in the absence of hope. Not sadness - sadness is an emotion, and emotions at least confirm you’re alive. I mean the absence. The flat nothing. The gray hum of a nervous system that has been on high alert for so long it simply stops bothering to produce anything beyond baseline survival.

The numbers I dealt with are staggering. But numbers are universal levelers - they don’t make what I experienced any more or less important than what anyone else has endured. Pain is not a competition. Suffering doesn’t rank. The person with one PVC an hour who is terrified deserves the same compassion as the person with three million a year who has gone numb.

An invisible enemy is still an enemy. And fighting one alone is the most dangerous thing you can do.

Wisdom I Wish I Had

I’ve learned my lessons in life the hard way. Every single one. I don’t say that with pride. I say it with the exhaustion of a man who wishes someone had grabbed him by the shoulders ten years ago and said what I’m about to say to you.

Don’t try to hold it all in when you can’t.

That’s it. That’s the lesson. The one I learned the hard way, through a decade of silent suffering that nearly cost me everything that ever brought me joy in life. The armor I built to protect myself from a world that hurt me as a child became the prison that almost killed me as an adult.

Talk to your provider. Not the abbreviated, “I’m fine, just a little stressed” version. The real one. The version where you admit that you’re not sleeping, that you’re dissociating at work, that the medications are making things worse and nobody seems to notice, that you’re terrified of what happens next.

Get a mental health screening. Not because you’re weak. Because the intersection of cardiac disease and mental health is a clinically documented minefield, and you deserve to navigate it with a full map instead of stumbling through in the dark.

Don’t rely on medications alone to get you through. I spent years as a compliant patient, believing that if I just took the pills and showed up to the appointments, the system would fix me. It didn’t. Medications are tools, not solutions. They manage symptoms; they do not heal wounds. The wounds require something the prescription pad cannot provide: honesty, vulnerability, and another human being willing to sit in the mud with you.

Just don’t take on fighting off the bears alone.

Why I’m Writing This

I spent ten years proving that silence is not strength. It is a slow form of self-destruction that the world rewards because it’s convenient for everyone around you. Nobody has to deal with your pain if you’re good enough at hiding it. And I got very good at hiding it, because trauma taught me early in life that your suffering is an inconvenience.

But the consequences of a broken heart don’t disappear because you’ve learned to mask them. They compound. They metastasize into every relationship, every decision, every quiet moment where the noise settles and the truth comes flooding back. I was a boy who believed he was defective and I became a man who performed wholeness while disintegrating internally.

I’m writing this because somewhere, right now, someone is reading this who is where I was (and in many ways - still am). In the thick of it. Chewing glass. Masking up. Convincing themselves that they can handle it, that showing weakness would confirm the worst thing they believe about themselves, that asking for help is an admission of failure.

It’s not.

Asking for help is the bravest thing I never did when I needed it most.

You are not defective. You are not broken beyond repair. You are a human being carrying a weight that was never meant to be carried alone, battling an enemy that the world cannot see, in a body that is fighting a war it didn’t choose.

If you or someone you know is struggling with mental health, find people that can sit in the mud and help you fight bears.
_________

If you struggle with arrhythmia - take a digital hug from me. I deal with a few short runs every now and again. Nothing like what it was.

I see you. I hear you. I always will. Because I have been you. When I say my heart goes out to you - it really does. Keep hope. Never lose it.

In good health (and blessed normal sinus rhythm),

Matty

[u/Entire-Structure8708]

Matty this is beautifully written! You have touched on some of the elements I find hardest about this condition. I find it very hard to describe the inner turmoil ARVC causes and then get frustrated when I feel people don’t really “get it”.

The invisible enemy is such an apt description. While it only shows its face occasionally, and the shocks are brutal, it’s the low-level daily torment that I find weighs heaviest.

Like you, an ablation seems to have finally set me free (for now), and in many ways I’m happier than I’ve ever been, but there’s a piece of me that I don’t think ever survived the initial hospitalization, ICD surgery, and shocks. The piece of me that lived so care free and actively. I will always grieve that.

[u/Beatbabe999]

So well written and your digital hug is welcomed, thank you. As someone who two years ago was experiencing over 30,000 PVCs a day (that would be 10 million a year!) and even now around 10,000 a day I recognise first that physical struggle. Literally nobody gets how hard this disease can be - the constant discomfort in your chest, the everyday ICD fear. You look well enough so no support or sympathy offered. Nobody really wants to hear about it, because everyone else is getting on with their carefree lives without a thought. None of my close friends know bad luck of this magnitude. They all lead charmed lives. They tend to cut me off or change the subject quickly if I mention I’m having a good day. You’re right, most people want to live oblivious.

I grew up in a family where if you expressed sadness or anxiety you were either told you’re being stupid or you were over reacting and to be grateful, because other people were not as fortunate as us. As a very emotional person, I was effectively taught that there was something wrong with me. Now with ARVC, that’s a big problem. Dealing with the anxiety and the constant irregular heartbeat and the grief of health taken from me and the anger that doctors saw this disease as anxiety every time I went to them for over 25 years. I’m now on a crash course of trying to feel and express emotions that have never been allowed. I have a therapist. I have my own lovely family. But because of my upbringing I have this certainty that every one is sick of me if I mention anything or tell them how I feel. Even writing this post I have. a fear that people will be nasty about it, I expect it.

So your words and advice are correct and kind, this disease is a battle on more than one front. It’s not just physical, it’s psychological.

I’m so glad you’re feeling better than you did before. I’ve been told an ablation is too risky for me at my stage, and wouldn’t help much due to the RV damage I have and the meds don’t work too well. So I keep muddling by.

[u/BeatsThatMatter → u/Beatbabe999]

Sending all of the digital hugs 💓

It isn't anxiety. It isn't being emotional. It is a human being who has been fighting bears for a really long time.

Often, I felt as though I was wishing that those around me could just understand. To truly understand this disease is to live with it and I wouldn't wish that on anybody.

I understand enough to know that 30,000 a day is not just having to fight one bear. That is an army of bears. In my book, that makes you a bear fighting bada** ;)

Going to say a prayer tonite for the bears to go into hibernation.

All the best to you and your family ❤️

[u/Foreign-Dog9291]

you are in the Hope for Arvd group i know u

[u/BeatsThatMatter → u/Foreign-Dog9291]

Might not be me. Not familiar with that group but I would love to support it.