What are you supposed to write about for an aortaversary?

It is my 2-year “aortaversary”. A funny word that is supposed to signify 2 years since they stopped my heart and fixed it.

I write these blog posts a week or two in advance before I actually post them. It’s nice to just mull it over, think about what I am saying is what I actually want to say. I’m not a good writer. But it does make what I want to say clearer to me, firmer in direction. More accurate. For this one, there have been 5 different drafts over the last couple of months. They all take a variety of routes through the last year, covering a variety of different parts of what has happened and who it happened to, what has changed. And I dunno, I don’t think I liked any of them. What am I supposed to write for being surviving 2 years?

So today I scraped them all, and I am writing this the evening before the 2-year anniversary. There’s no theme, no editing. I won’t mull this post over. I am going to vomit a bunch of things at you, which I apologise for. But you know, it is my fucking blog.

Numbers, and goals for the next 18 years

From the first moment I knew what was going on, I was pretty obsessed with the numbers involved with my body. You get told a <10% chance of making it to the surgery, an 85% chance of surviving the heart surgery to replace your ascending aorta, how lucky you are. And then you’re surrounded by numbers. You’re hooked up to a machine that tells you your heart rate every bloody beat. Still have no idea why it needs to beep so much.

Then you get discharged, and you’re still surrounded by numbers. At the cardiac rehab, they frequently go around the room and test you and all your geriatric friends' heart rate to make sure you’re being good. If you’re being bad, you get put on the naughty step to calm down. I wish that were a joke.

I was wearing an Apple Watch casually before all this anyway, but since then, I don’t really go a day without it. It has recorded my heartbeat pretty much non-stop since then. Because my heart is so loud, I generally know what my heart rate is all the time. At a cool 60bpm it’s like clockwork, at 180bpm it’s a car engine with a screw loose. And I always know what it is. But it’s also nice to have a cold device tell me what my heart rate is anyway.

In November last year, I had a meeting with one of my cardiologists (I don’t mean to brag that I have multiple, my heart is that much of a problem). I spoke about wanting to run, and I had tried to get information from the cardiac nurses about whether I was allowed to or not. He said that as long as my blood pressure was generally 120/80 or lower. If I do raise it, it should be controlled and rise slowly. Then, sure, why not go for a run? Surprisingly to me, he did not care about my heart rate. Apparently that was never the problem, despite me fixating on it for all god damn year.

So I started recording my blood pressure multiple times a day for about 5 months. I got really fixated on it because I really wanted to run. I wanted to show that if something did go wrong, it wasn’t my blood pressure, or that I wasn’t trying to follow the advice of the specialists. I was trying really hard. And you know what? It was good pretty much every single time I measured it. My blood pressure is the model of average.

There’s been another overarching number, which is more static. The survival rate for people in my cohort is roughly 50% make it to 20 years. A coin flip. Heads you live to 50, tails you don’t.

I have now done 2 years of these years. I kind of imagine from now, I have a guaranteed 18 years left on the planet to do something.

This is where I think my goals will come from. What will I want to have achieved and tried by 2043. How can I enrich my life and have it be as full as I can make it. How can I do as much as possible, have fun, and also enrich others' lives, hopefully. I don’t want to die having not done the things that I can do, or having regrets.

My goal last year was to run. I have smashed that goal. I am running 5k’s a couple of times a week. It is liberating. I signed up for another 10k in a month's time.

So for the last couple of months, I have been thinking about some base goals that I can have over the next 18 years. They aren’t set in stone. They will get added to, or removed. They should be fluid. The only thing we can be sure about is that things will change. And also, a few of them are a bit childish. But whatever, it’s my life.

Be a parent

This is probably my greatest goal. I think I would just be great at it. I have so much energy for this, so much will to be put into something wholly good that it would be the greatest achievement I could have. Leaving a positive mark on someone else’s life permanently, helping shape who they are.

Perform something

The rest of the goals are a bit less formed. When I was a kid growing up, I enjoyed performing. I was part of a local theatre group doing a couple of things, and I rocked the school plays.

I kind of want to experience something like that again, now I am older and I know who I am more. It doesn’t have to be a play or anything like that. Just a performance of some kind. I really don’t know what that looks like right now. All I know is it will be pretty shit, and pretty amazing.

Make something

Years ago, I made a quick online game and put it out onto the internet based on that Pokémon card flipping thing, I forget what it’s called. It kind of sat there for a while, and a couple of years later someone messaged me on Twitter. They said thank you for making the game, and that they had been playing it on the bus during their commute. That rocked.

I want to do that, but for something original. Something which is a part of me, to leave behind. I don’t know what that looks like right now. It could be a game, a book, a movie, or an album. I hope it’s one of those things where it will come into focus as it gets closer. Once it’s in focus, I will know exactly what I want to do.

I just don’t want it to be a fucking website. I am done with making websites.

Get good at something

I have lamented in previous posts that I quite enjoy being bad at things. That is still so true, I am so bad at even the most basic things sometimes. Anyone who has to have a conversation with me knows I can mess up the basics of human interaction.

It would just be kind of nice to be really good at something. I am in my 30s, it’s a “never too late” kind of thing. It would have been easier to get good at something in my teenage years or even early 20s. But if there is a positive trait about myself from the last 2 years to take away, it is that I am persistent. I know I can do something well, so let’s do it.

Like the above though, I don’t quite know /what/ to get good at yet. Just as long as it’s not programming again, I am so done with that. Something creative. Music, painting, art, writing, who knows.

Learn a language properly

This is selfish really. Well, they all are. I just want to actually learn a language properly. It will probably be French. Who can blame me? France is a couple of trains away, and I already know some. I just right now can’t even imagine knowing another language fully enough to be comfortable speaking it and understanding it properly all day. I want to experience that.

Leave it better than I found it

A lot of things suck for a lot of people. At the top, I highlight being a parent as doing positive things for a small group of small people. I kind of want to also have a positive impact on a larger group of people if I can. This feels unrealistic. I have my principles, which I think are good. But the thought of converting socialist and left-leaning views into actions for a group of people is overwhelming in a way that everything else in this list is not. The scope of this will change.

I have spent a lot of the last year being unhappy. I find happiness in a lot of places. But I think if I am to be fulfilled, I need to cultivate it in the places I already am, and enhance the things in my life with that. The goals above don’t really work if they don’t make me happy. I think they will.

Walking

I walk a lot. Most of my exercise is walking, and I go for daily walks. It kind of rocks that my hobby is walking. In the before times, I would sometimes not leave the house for a couple of days. Now, I feel like I need to make the most of my body and day, and keep moving.

There’s a spot in Sheffield I want to mention quickly, which I go by on my walk home from work.

In 2022, I was in my third job of the year, and my first in-person office job since the start of the pandemic. I wanted to make the most of being in town, so after my first day in the office, I decided to walk home.

I figured out the route as I went along. It involves going past the University and hospital, between Crookes Valley Park and the Ponderosa, up the hill towards Walkley, and then down the high street. Once you’ve made it all the way up and across, you start the descent down towards Hillsborough. You'll wind yourself through some houses and a thin path, and then as you go by the allotments on the hill, you have this view.

I was stunned the first time I saw this view. The weather was good, and you could see out into the Peak District, and also simultaneously see my house. I hadn’t really thought before about the closeness of the Peak District until that moment. It felt like it had waited there dormant for me to see it. And now it was noticed and could finally be appreciated.

Ever since then, whenever I am in the office, I always try to walk home. It takes about an hour, but it’s an hour I want to always make time for. As part of the routine, I take a photo in the exact same spot. I have nearly 200 photos taken over the last 3 years. One of my favourite places in the whole world is at the end of someone’s drive. Life is different when you walk through it.

Positively Exhausted

I am often negative in these posts. There is a reality to this, and I don’t know about other survivors of diseases like this, but I think about the negative aspects all the time. It’s just so present every day. It’s also just way easier to talk about the negatives than to enjoy the positives when they happen. You have not lived unless you have written a blog post on the internet about how shit something is. It was basically the whole reason to have a Tumblr.

But my positive takeaway from the last couple of years is that when something needs doing, I get on with doing it. Right from finding out I needed surgery, it was a “let’s do what needs to be done to keep living” mentality. It has changed everything about me.

3 months after the surgery, someone said to me, “If you hadn’t said, I wouldn’t have known you’d had heart surgery”. It’s a weird thing. I don't know if I like that. Why would you know about my heart without me telling you, other than if you heard the ticking (and I have been asked a few times now “What is that ticking noise?”. I love that please don’t hesitate to ask, it is funny) or saw my scarred chest. Overall, I think I play it off well. For whatever it’s worth, I “feel” I look “normal”. It’s a testament to how much I wanted to get through this. Beat it, whatever that means.

But, honestly? I think I have nailed almost dying.

This year I have seen and experienced so much more than in almost all my previous years. Shows, meeting and seeing people new and old, visiting places, just doing so much more. I have even been able to go running around some cities in Europe with a heart that pumps blood through a tube made of recycled t-shirts and Pepsi Max bottles, or something (editors note: he doesn’t know what the artificial aorta is made of).

This has been the positive of the last year. But I am also finding it exhausting. I am tired a lot of the time. Not just because of my physiological disadvantage. I accept the tiredness, because at least I am exhausted for the positive reason of “doing lots”.

There are still plenty of days when breathing is hard, feeling like the pipework inside me has shrunk overnight. Or when my ribs hurt for seemingly no reason. I am not complete, and I really do want a break from it. Some respite, a vacation in the sun. Mainly from the noise. Just for a bit, I would love to live in actual silence. But I can’t, and I won’t ever be able to. So, I will carry on using those bad days to make the good days even better.

The self

In a previous post, I said that I don’t really fear my body anymore. That acceptance, I think, has extended to my whole self. For the first time in my life, I can see the value I have as a person clearly, to myself and others. I’m not sure whether that’s related to the heart, or just getting older. Maybe we all just need time to see how we can fit into the world. I am jealous of those who know their value early.

Sometimes I worry that I ask too much of people and life. At least now, I know I can offer others something of value too, rather than just think I do. So that when I go and do stuff or meet up with someone, I am hopefully making the other side's days brighter too.

A week ago, I did a quick modelling photo shoot of myself with some leftover film. We're talking like "we have 4 minutes spare lets do what we can". I can’t post the images here. Mainly because I don’t need photos of me in my underwear available permanently on the internet. But it’s the first time I have ever done anything like that, and I don’t hate the result. I don't hate me. Which feels strange. Maybe I'll start doing life modelling (this is a joke).

Also, I even have a moustache now. Still undecided on whether I keep it. But while I am here, it's also just nice to have fun with your body for once. You know?

2 years

A thing I wanted to get out of year 2 was to be more positive. I lack purpose still. There has not been a revelation yet. I am just as naive and stupid as before. It has been a much more positive year. There is no better evidence of that truth than I have struggled to write this post for months, because the things I have to complain about are much more minor than my year 1 complaints. It’s hard to find something still worth writing about after writing about coming up with contingency plans to kill myself if something like this happened again.

You know, I did flip that coin a few months ago, when I first started thinking about being 2 years in. It landed on tails.

It is day 731. The pain is inevitable, suffering is optional.