Micro-blogs as we approach 1 year

Alt title: real world thoughts of the On-X Aortic Prosthesis after 11 months

Content warning for this post: Suicide and self-harm.

I’ve had a lot of thoughts over the last 11 months. They’ve been leaving a trail on my notes apps as I write them down whilst on a walk or something. I don’t know why, but I thought I would share some of them here, make each into a bunch of micro-blogs. This is mainly for me to look back on in a few years, so feel free to give it a miss! I’m writing these for myself. But again, maybe someone out there in the future is going through the same thing, and this helps.

I wish I had done more drugs, smoking and drinking

Dionysus probably looks down on me with disappointment. I will preface this by saying not doing these things to the extreme has definitely helped save my life. And I know, this is really fucking lame. But man, I do kind of wish I had fucked my life up a bit more, when doing it wouldn’t have actually just straight killed me (probably).

Nothing major, I don’t want to completely destroy my body. But I do kind of wish I had spent my lunch breaks looking really cool smoking rolled up cigarettes outside a local Tesco. Or when I was a student and full of annoying youthful energy, I definitely should have destroyed my body more then. At least a little bit, as a treat. That’s my advice to the youth of today: smoke, drink and do drugs fuck it you might die at 29 anyway.

Now when I have 3 pints, I have to deal with the anti-coagulation people asking why my blood is so thin in the bi-weekly tests, worrying that a scratch is going to cause my to bleed out on the floor.

I have thought about killing myself more in the last year than the rest of my life combined

I’m not going to kill myself, and I’m not depressed. Apparently they replaced my any thoughts of depression with /just/ trauma. I’ve dabbled, as you do, with suicidal thoughts and self-harm when I was younger. This feels very different, and I wouldn’t waste both my life, or the efforts of everyone who has helped in the last 11 months. I’m here for the long term. Just wanted to make that clear.

I think about it because imagining this happening again is exhausting. The thought of waking up in the hospital ward, tubes in your chest, beeping machines, another year of rehab, recovery, needles. And just awful food. It feels long, longer than any one person should have to deal with. And I want to at least imagine I have the agency for an exit plan, if I one day need it.

It might be a life long disease marketing problem. You’re told you have to spend the rest of your life looking after your blood pressure, or looking out for lumps, or doing this and that. I’ve glanced some articles and papers online which show attempts of suicide are higher in those diagnosed with cancer before the age of 45. I wish we could all just forget about our ailments, but I understand the reality of it. All I really want is to eat McDonalds and watch Better Call Saul.

Everyones so fucking old

I think this every appointment I go to at the hospital: Why do I have to be the one young person this happened to (at least locally). Everyone around me, in the waiting rooms, on the wards, they’re all retired and a billion years old (medicine has come a long way). I just don’t feel a connection to anyone. There’s no one to talk to. I’ve spoken to the UK aortic dissection charities and they also feel ill equipped to deal with someone my age.

I’m not even that young. I’m 30. But I haven’t met another aortic dissection patient at all. All the other geriatric heart fuck ups are lovely, they really are. But god, I wish there was just someone near me who was at least within a decade of my age.

I think I want to die in hospital

This was kind of a revelation for me. While in hospital, I’ve seen people I don’t know pass away in front of me in the last 11 months. It sounds strange, but it feels almost right. Your family are there, witness to your final moments. You’re surrounded by healthcare professionals to make your passage as painless as they can. It’s clean, dignified, and honestly just less work for everyone else once you pass away. I think I want to be less work.

I wish it counted as a disability (give me my drugs for free)

This is just a trivial point, but man, give me something here. I have something that has changed my physical state forever. I can’t go back to the life I had before. At least give me my prescriptions (which are unfortunately required to keep me alive) for free.

Can’t have shit out here.

I don’t really care about people seeing my body anymore

Probably the greatest gift I got, is that I don’t really give a shit about my body being on display anymore. You spend years growing up with body image problems. A major surgery later and it’s all gone. Catch me at the beach in my budgie smugglers.

Also an extra point. I have two big and lots of small scars from the heart surgery. But you know what people find stranger/are more curious about? The fact I have no belly button.

People don’t like talking about things which have gone wrong

In one of my rehab sessions with my geriatric besties, I was speaking to one of the other patients. My patter is piss poor (I don’t know if the kids call that rizz), but it was just about the weather, what they did before they retired, all normal stuff and it was a pleasant conversation. Then I asked what was wrong with them to end up here. She did not take kindly to that.

What happened to me is grimly fascinating. I will speak about it to anyone who will listen. I’m writing these weirdly personal blog posts about it in public, so clearly I don’t really mind that much. That’s not to say you shouldn’t be private about what’s up with you, it’s your life, and I respect that. I am privileged to have an issue which is relatively well hidden besides the noise. I just struggle to relate, because I love any weird potential shared experience between us all. I find it so "human". It’s just I’ve found that most people don’t really like to talk about it.

If you’re ever curious about anything, just ask me! I will sure as shit ask you about the weird shit going on with your body if I get the chance.

Scrubs

I spend a lot of time looking at others who have had heart problems. I dunno, I guess that’s a form of coping. Anyway, there’s an episode of Scrubs I like called “My Butterfly”. It’s about fate and small changes making big differences, and potentially saving peoples lives. It shows two different timelines depending on who a butterfly lands on. One of the patients in this episode has an undiagnosed aortic dissection.

He dies in both timelines in the episode.

Every second counts

I liked The Bear season 2. I resonated a lot with an unfortunate number of the plotlines.

Normally TV shows or books with a particular phrase, I kind of forget about them. But “Every second counts” specifically from this show hit me hard. I am not making every second count. It feels hard to. I wish I could retire, make every second count for me, my wife. Make every second count so that there is less chance I’m forgotten when I do pass away.

Andor Season 2

The third media based microblog. I really am just waiting for Andor Season 2 to come out. Season 1 gave me something I didn’t know I needed: closure to Star Wars. I’ve grown up with it since I was born. My Dad was mega into it, and I was born at the right time for the Phantom Menace to be enjoyed as it should be: a kids film. Giving Star Wars relevancy to current culture, with high budget casting and set dressing, mwah. Exactly what I needed to close the book on it. I look forward to opening the book again when I have kids, to start the cycle again.