A post about life, post death

So I’ve had some thoughts, 6 months after surgery to repair a type A aortic dissection. I’m mainly posting this to get thoughts down to paper, so don’t worry about reading all the depressing stuff. I promise I’ll put something positive at the end

You’re better now

One of the strangest things 6 months after open heart surgery is people thinking it’s over. And I guess it is? They fixed what was wrong, my aorta might not actively try and explode for the time being. And I get it. I have known people who have survived cancer, and they are getting on day to day just like anyone else. It’s easy to think it’s over, that they’re fine.

I suppose until you experience it yourself, or someone you’re incredibly close with, you can’t appreciate the changes in how you live. Or how it changes the person they are. Every single time I have woken up for the last 6 months I have thought “I might die today”. Not just in a slight anxiety way, in a very real way. Whenever my heart feels a bit weird (which is quite a few times a day) I just have this weird intrusive thought of like “Oh fuck, this is it”.

And you’re aware of it constantly. My heart ticks nonstop, I can feel it beating in my chest all the time. It’s not a feeling you’re supposed to have, this is not the human experience I signed up for at birth. I have a constant reminder that I need to be careful because life doesn’t last forever.

That anxiety is not necessarily unfounded too. The onset of all of this happened to me in a split second. I got lucky multiple times over to be alive and writing this post. I don’t know if I will be lucky again, at some point my luck has to run out. It does for everyone. I can only imagine that this is how other people think too.

You come out the other side of this scarred in ways you weren’t prepared for. I’ve spoken a lot about what the surgery was, and you know, how the recovery is gone. But I can’t find the words to describe what it was actually like. To distill it down into real sentences is beyond me. I envy someone able to arrange words to describe having your insides rearranged to let you live, to let you survive. To fix one of the core fundamental things almost all creatures on this planet have. Memories of hospital tubes and wires like they happened to someone else. It’s a horrible fucking waking nightmare which creeps up on me at random points of the day. I’ll be out on a walk and suddenly just start crying because I am remembering something I wish never happened. I hate that this happened to me.

I won’t ever be the same person. Sure, there are lots of physical changes and things I won’t ever be able to do again. Changes have occurred, and the patch notes are pretty grim (hey they did disconnect my heart and replace something). I suppose I should have regrets about the things that I never did, but I don’t think I do. Oh no, I can’t try out bouldering, how will the tech bro in me survive! I’m just more grateful to be alive.

But once the surgery is done, you’re left to your own devices for a life in which you no longer quite fit. The way I would describe it is I’m a cylinder person trying to fit into a square life. It’s a bit like that TikTok of the woman getting upset over all the puzzle pieces going into the square hole. I still make it through technically, but I don’t feel good about it.

Man, it’s lonely out here

The impetus for this post was Hank Green’s video about life after cancer. When I first dissected my Aorta back in April of last year, I spent like a month being generally unwell. When I started to get by with the feeling of weird heart-ness, he publicly announced he had cancer. I don’t follow vlogbrothers, I saw a thread for his announcement on a lovely forum I frequent. But having felt unwell for a little while and like something was wrong, it was kind of nice to have this person’s journey be public. Cancer is awful, and it affects so many. What I had is also awful, but affects so few. So, I’ve been holding onto whatever scraps of similar experience I can.

I’m not brave enough to go out and find other aortic dissection survivors around my age, or even cardiac survivors under the age of like 40. Not yet. So I’ll take a random YouTube person until I am brave enough.

The support network around me is relatively small. It’s not something I felt like I needed beforehand. Generally, my life has gone well without needing to fall back on anyone, and I have been so incredibly fortunate that has been the case. But what network I do have has been vital for me, and I wish I had made it bigger beforehand. You don’t know when you’re going to need something. I hope you never experience heart surgery (it wasn’t great) or anything like this. But if you do, having people there is such a weight off. If you ever want to talk about it, I’ll always be available.

There were no near-death revelations (for me)

Maybe it’s a dumb thing to expect, some Hollywood-style revelation that would change my life. Maybe I would dedicate my life to something meaningful. Something I found, where my true passion lies, and I could find a new me in. Just become the sickest skateboarder on the planet or something.

Man, it sucks out here in the real world. There was no revelation, no fundamental shift in who I am. I still do mostly the same things I was doing before. I got scammed and I can’t even go back.

In reality, this is a testament to how amazing medicine is, that something so major can happen and my life can continue the same as it was before. My job is still writing code. I still play video games and like taking photos. I still /do/ the same as before, even if I’m not the same.

I just wish there was something, you know? I wonder if it would make it easier if there was something to push forward to. Some new goals in my new life to strive towards. But I don’t have any right now, I’m kind of just existing. Progress and recovery are slow for a surgery like mine, so maybe it will come one day. I’ll be out one day on a walk and find the thing I want for the rest of my life.

Sometimes life is a weird little indie film

Just a more positive note to end on. So since the last blog post, I’ve gone through phase 3 cardiac rehab, and I’ve started stage 4. I am still the only person I’ve met who has had an aortic dissection. In general, cardiac issues trend towards older people, and mainly men.

If we demographic my rehab groups, they hit the statistical nail on the head. Almost everyone is male. Every single one has been at least 50+, and generally they are 60-70 years old. They talk about music from the 1970’s like they were there, because they were.

I’m only fucking 30, and here I am doing beginner Jane Fonda with some auld lads at a sports centre twice a week. Honest to god it just reminds me of some mid-2000’s indie film, where someone younger joins a group of older people for a community group or something.

Last week they were questioning my childhood because I knew a lot of the answers to video game trivia questions. I love it.