Dealing with the Silence

Alright, so you go through some terrible, awful, huge event in your life. It upends everything about the way you were living and those you live with, for months. For some people it might be years. For me it was emergency heart surgery, into months of hospital appointments. Yeah, it's another post about heart surgery.

You make it through that. By some grace of fate, you are part of that percentage that comes up when you google “things that is wrong with me” survival rate. You’re grateful and always will be. That part won’t ever diminish. The people caring for you both in the hospital and at home have helped you get through hopefully the worst thing you’ll ever experience on a physical level. After months of rehab, daily exercise, building your body back to a shadow of what it was a year ago, you get strong enough to go back to how things almost were before. This is the thing that you wanted, living that same life of going to work, playing video games, eating bad food. I don’t remember much about the days post-surgery. But one thing I do remember was crying to a nurse, and begging someone to let me be normal. It was all I wanted at that moment, and here we are, something resembling normal. Great!

But it doesn’t feel right anymore. It feels a little pointless, to go about your day-to-day life like this didn’t happen to you. They fixed the physical you up as best they could, but there remain scars deep within that won’t go. There are moments of great silence where you are left with nothing. Just what feels like a complete void within yourself. It wasn’t something I noticed straight away, but as I got physically stronger, the silence got louder.

I’ve tried filling this gasping pit for the last couple of months by just doing something whenever I can. Meeting up with people, playing games, doing extra stuff at work, going on long walks, doing hobbies new and old, and lots of coding. It helps while I’m doing it. But once I stop, and sit silently for a moment, I feel it again. The void.

I get deeply frustrated at this. I survived, it’s over. Why am I getting annoyed at work because there isn’t anything to do for an afternoon. Why do I want to spend all day walking until the sun has gone down, just so I don’t need to stand still for a moment. It’s exhausting.

I keep thinking about this; imagine you got told you had a 50% chance to survive today. You flip a coin, if it’s tails, that’s it. What would you do differently if you won that coin flip? What if it was a 10% chance. What is the cut-off point that you would start making changes in your life? Would it be higher, would you make the changes at 85% survival?

Given that chance a year ago, I don’t know what I would do differently. Today, I also don’t know. I spoke about it before, about there being no big revelation after having something so major happen. But this has been something new to deal with outside the physical. Some numbers which didn't mean anything me, now suddenly have meaning in everything I do.

There are numbers millions of people going through healthcare will grapple with. We boil a person down, a real-life actual human being, to the thousandth of a percentage point of the population. And they actually tell you that number at the hospital. Then you get told you’re lucky for being on the winning side of that percentage. It doesn't feel lucky! This next statement I’m about to say is not remotely true at all for most people, but it’s how it feels; people come out the other side of their numbers and live. Not just survive, live.

I’ve been given a chance that 90% of people in my situation wouldn’t have, and am I doing something worthwhile with it. Am I living? The answer to me is no, not really, but it's hard. I’m trying to be fine with that answer, whilst also exploring what it means to live as a survivor of a major heart explosion. I don’t feel guilty about being a survivor. I didn’t choose this, it’s something that happened to me. But that doesn't mean I can't try and do better.

I’ve been trying out new things around music or particular areas of programming, getting more stuck into the things I really love doing like photography, trying to see more people when I can. These are all things I’ve been bad at keeping on top of so far in my life. I have very few real friends living close to me, so I’ve been making more of an effort with this. I didn’t mind at the time, and still don't really, but when I was in the hospital post-surgery I only had 1 non-family person visit me. And after being released, for the next 4 months I only had 2 people visit me. It’s been weirdly lonely. I don’t think I want to be lonely like that if it happens again, just in case.

Part of me wishes I could do something radically different. Move to a different country, change jobs, switch lives. But it’s just impractical. I often read stories of cancer survivors, because cancer affects so many more people than an aortic dissection ever will (and of course fuck cancer). They do amazing things with their lives after, it’s inspiring. I understand it's not reflective of everyones experience, but I can only imagine most survivors read these stories and feel something like this Silence.

Maybe I’ll get there one day, and you’ll be reading another blog post about how I’m now living in the New Zealand countryside tending sheep. Or maybe I will have done something worthwhile for somebody. Maybe I won’t.

I often don’t know why I write these posts. I think it’s just so I can put down feelings that I don't like to say out loud, and as I’ve said maybe someone else finds it useful to see someone else's thoughts. Often I make things for nobody but myself. I don’t share my art or music with anyone, it feels too personal, and it’s only for me. But bizarrely with this stuff, I find a lot of value in sharing out into the internet. I promise the next time you are unfortunate to click on a blog post of mine, it won’t be so negative.

There is a bit in the Action Button review of Doom which made me quit my job at the start of 2021. It’s a really great video anyway that is totally worth watching, and it made me cry multiple times. Something about it from its humorous presentation to touching stories of growing up makes it probably my favourite long-form video on YouTube. But there’s a specific part of it, an honest interlude where the presenter says he cares about what he's doing, and wants to just make something good and worthwhile.

I want that too.