(Ein wichtiger Hinweis: Ich bin medizinischer Laie. Ich habe nur lange mit meiner Krankheit gelebt. Ich kann alles medizinische hier falsch verstanden oder falsch wiedergegeben haben. Jede in diesem Text wiedergegebene Information ist potentiell aus dem Zusammenhang gerissen, falsch, unvollständig. Hört auf Euren Arzt! Fehler sind meine Fehler, nicht die meiner Ärzte.Meine Erfahrungen sind anekdotisch. Eure Erfahrungen können anders sein.)
Decision
So in August I was facing the decision of whether to have the operation or not. Even if medicine makes clear statements here, it’s up to you yourself to lie down on the operating table. Or not. After all, no one forces you to. Such an operation is a major procedure. Nevertheless I decided quickly. I had the recommendation from the MRI examination, I knew that I’d reached the guideline value.
In the end it was actually even an easy decision, because I’d basically already been on the way to making this decision beforehand, independently of any measured values. The thought of the operation was already there before. Ever since my appointment with the cardiologist in spring 2025.
Why not draw a line under it now? Tackle the problem. My next normal appointment with the cardiologist would have been in December. It was to be my first post-operative appointment with him. I’d have raised with him whether the operation couldn’t be tackled now. I couldn’t go on any longer, the façade was increasingly showing cracks.
The letter then only accelerated things and took the decision out of my hands. I even pushed a little for the operation date, because I wanted to have it behind me. As I said, I wanted the Jörg of 2018 back. Over six years of fear were simply enough.
At the time of the decision I knew that it would take some time until everything would be okay again. That even then my life wouldn’t be completely normal, the way everyone knows it, was clear to me. But it would be okay again. And okay was all I wanted. Or else I wouldn’t have survived the operation … and then it wouldn’t have interested me any more either.
Survivorship bias
When you inform yourself about such a situation, about such an operation, you’re confronted with an effect that seems very remote in normal life.
Since 2018 I’ve taken part, somewhat irregularly, in a forum where people talked about their experiences with major operations (the forum isn’t actually specifically for my condition, but people like me are also welcomed there and, so to speak, “tolerated”). To my knowledge there is, unfortunately, no explicit aneurysm forum. These forums consist partly of people who are afraid of what happens during the operation. They seek reassurance in these forums. They seek knowledge and experience in these forums. And of course there are people in this forum who have survived their operation and regularly report that they’ve survived the operation and that, although everything is strenuous and hard, they are still here.
Reading that gives confidence. If they survived it, then I will too! The forums are full of positive outcomes of this situation. A good feeling spreads. It can’t be that dangerous.
Until … yes … until you think about it once and the good feeling arising from it disappears all of a sudden. Suddenly the words “survivorship bias” flash there in neon colours. It may sound brutal, but those people for whom it didn’t turn out well, for whom the operation went wrong, who in the perioperative phase had major, insurmountable problems within the next 30 days, don’t write articles in a forum. They were mourned or are battling with the consequences of the operation and have far better things to do than to put an article in a forum.
This means forums have a considerable bias towards survival. Necessarily. Without this realisation it’s easier to approach such an operation and draw confidence from such forums. The question is: “Who no longer writes?” But does one take the trouble to check who announced their operation in a forum but then no longer writes afterwards? Should one, for the sake of one’s peace of mind, take that trouble? And which of them really had a problem? For whom have the forums merely lost their reassuring function, and have they left these behind?
Bumms – büst buten
Even before the letter from the hospital I’d been thinking along the lines that the operation would take place in the near future. Back then, however, I was thinking of sometime in 2026. But nevertheless it was clear to me that I didn’t want to, couldn’t, repeat one very important mistake from 2019. Back then I’d hardly arranged anything.
In 2019 I’d handed over my projects at the company. As if my job were the only thing that would be left behind. But privately? I’d written letters to my family, which I burned when I wasn’t operated on. It was important to me to still say a few things.
But many other things remained unarranged. I had no will worthy of the name. Yes, there was a kind of will. What this document contained more or less said: share everything of mine among yourselves. But don’t quarrel.
Much from my life was undocumented. Even if it was only about how to give the pellet heating a suitable kick up the backside in the event of failure.
I didn’t want to repeat that mistake in 2025. With the thought of an operation in 2026, I’d already started before August to prepare for an operation that lay somewhere in my future. I began early to arrange things.
This took up many thoughts, much time, many weekends this year. I had to give thought to how things would go on with my house. How things would go on with the bric-a-brac standing around at my place. Cups. Books. Electronics. Who knows what.
Actually that, too, was far too late. Not because in the end time got short. It did, but that’s not the problem. Rather because my effort to arrange everything in view of a soon-impending operation was a “I-have-to-arrange-this-NOW” fury driven by a particular event. Because these are actually things that ought to be arranged in good times too. And that’s exactly what I didn’t do, because the necessity for it still seemed very remote to me for a long time even after 2018.
A few days ago I read in a patient forum about a woman who also had a major operation ahead of her: “What’s to become of my children if it goes wrong?” That’s a good question. And one that goes far beyond what such operations are concerned with.
When you talk about good documentation in professional life (whether technical docs or project docs), the example likes to come up: “And if you now go out and walk in front of the bus – does it carry on?” People usually laugh, because it sounds so absurd. People still think about it, though, once they’ve left the meeting. At least it’s often that way for me. Even if precisely this scenario seems very hypothetical to one.
But that’s exactly what happened in Lüneburg, with different outcomes, within the last few weeks. A man died after an accident at the bus station in hospital, after it only succeeded after a long time to get him out from under the bus. Just last week a female cyclist was severely injured after she collided with a bus when turning (or the bus collided with her).
I believe one should become aware that something can happen at any time. My parents like to sum this up very Low-German-style with “Bumms – büst buten” [Bang – you’re out]. It doesn’t take much to be out of the game called life. A second of inattention. A wrong decision. A wrong step on a slope. The thought: “Oh, why should I go to the check-up every year.” There are said to be people who barely survived setting up their satellite dish. I remembered a story that, near my old home, a pair of parents went out together on Christmas Eve (or immediately beforehand) to do some last Christmas shopping and on the way back were involved in an accident on the A28. Both died in this accident. They left their children behind. Bam – you’re out. And everything changes.
If life is so fragile, then there arises – especially if you bear responsibility for other people – the urgent necessity to arrange things in such a way that your own death ends in grief, but not necessarily in catastrophe. Who looks after the children? Who looks after the dog? Who looks after the house?
This time I’d arranged it better. I didn’t have to look after any children, but I had all sorts of other things to clarify.
Much of it took a very long time and needed a lot of time. A will. Of course. Somehow you have to settle your estate anyway. Settle what happens to the things you accumulate over the course of life. Who is to deal with all the Starbucks mugs I’ve accumulated? Who is to get all my books? My will before the operation was thus a little more elaborated than in 2019.
I wrote a list of people who were to be informed in case something went wrong. A considerably shorter list of people who were to be informed about a positive outcome. The list was shorter for the reason that I hadn’t informed many people that I would be operated on. I didn’t want to have to tell many people again, as last time: “I wasn’t operated on after all,” because something similar to 2019 happened.
Those people whom I didn’t inform in advance, I wanted to inform about it at some point later – if the occasion were suitable. That I’d been operated on. But that I’d obviously survived it quite well.
I asked my father to inform two colleagues about the outcome of the operation. At the same time I wanted to open the communication channel to the company that way, in case my family should need anything from the company, in the event that something went wrong.
I wrote down a list of passwords. I wanted to prevent those who have to deal with my estate from standing in front of locked computers. I’ve read more than once that this became a big problem. And to make the standard joke: yes … I also deleted the history and cookies ;) On all my computers. However, in order to end any authentication.
All of this came to me fairly quickly. What took up the most time, interestingly, was filling out the advance healthcare directive and the healthcare power of attorney. I had to expend the most thought here. And by that I was actually quite surprised.
At first I thought too: well, how long can it take? You just make a few crosses. End of the story. Far from it. Behind these two documents lie fundamental questions. You may wonder why I wrote of a fight at the beginning. With the advance directive it’s about setting limits to the fight for your own life, or not. Waging the fight as long as it’s possible, sensible and worthy of a human being. But not beyond that. Or indeed beyond that, if you absolutely want to. It’s about giving the relatives entitled to decide a guide as to how they should proceed, so that they don’t later mentally destroy themselves over whether they made the right decision. I’d find an “you decide what you think is right in the situation” inadequate, because it offers much potential to put the deciding person before a great dilemma. So you say exactly what you want in these situations. And there’s the problem: what do you actually want? You probably have a kind of diffuse set of thoughts, but now it’s about that set solidifying so far that it can migrate onto a sheet of paper.
The advance directive wants nothing else. Yes, on the one hand to give the relatives a guide, but also to ensure that you consider what you actually want.
Of course you’re inclined to say: “Hey, do everything possible to keep me alive.” Machine medicine, until the body finally says: “Now it’s over.” But in saying that you probably have in mind the life you’re currently leading and don’t want to give up. Despite all the difficulties, life is rather nice, after all. And as I explained earlier, for me that didn’t differ all that much from normality. And of course you then want top-class medical care “with everything.”
But at some point, in the thought process, it comes up that this isn’t the life you’re leading when the directive comes into effect. In that case you’re so much on the border between death and life that you yourself can no longer make this decision. It’s a completely different life that you’re leading in that moment. And it’s precisely this state that you have to have in mind during the deliberation. Unfortunately, the necessity of putting yourself into this state is precisely the problem that makes the decision so difficult. Because it’s hard to put yourself into this state. At least for me.
You really have to ask yourself what you want when this moment has come. Do I accept pain if it adds a few hours or days to my conscious life? Do I accept unconsciousness if it makes me pain-free for the last hours or days? Do I want to add a few more days to my life by having machines keep me alive? In the hope that something would still change decisively? That I would rise like a phoenix from the ashes of the coma? The sun always shines on TV. And on television the long-comatose patients eventually wake up again too and carry on with their normal life. Reality is a different matter.
Interestingly, these patients in fiction almost always wake up without any need for physiotherapy to compensate for the muscle loss of many weeks or months of coma. I simply lay in hospital for 17 days and already noticed that my musculature was going to the devil. And I could at least walk up and down in the hospital room. On television, patients who haven’t moved themselves for years simply stand up again. Walk. I consider that more unrealistic than ever.
The time afterwards, too, if you do contrary to expectations come back, should be included in your deliberations. What’s then left of me? Is what’s left still a life, the way I imagine it?
It’s a very personal decision. After very long reflection I found an answer to it for myself. Two days before the operation I was ready to sign the document. Months after I’d begun with it.
I could cope with losing body parts. Losing a sense would already be harder for me. But merely vegetating, dimly dazing away in a body that actually wanted to call it quits long ago, would be hard for me to imagine. And quite openly: in such situations I’m also in favour of assisted dying and would probably have wished for it. But that was a subject area I left out of my deliberations, because I wouldn’t have had this option.
At some point I’d decided that I didn’t want to wage the fight to the bitter, undignified end. Not to want to still do everything medically possible once the dying process has already begun. Just to perhaps postpone the moment of death by a few hours or days.
Before I arrived at these convictions, it was never really clear to me how difficult these decisions are. It’s easy, from the perspective of the observer, even of the family member, to say: “Now just fill it out.” To say: “You absolutely need an advance directive. It’s just filling it out,” is easy. It’s considerably harder when it’s about your own advance directive.
I can only recommend here taking care of this document considerably earlier than I did. Yes, you spoil a certain amount of time with these thoughts. You don’t want to think about what happens on the worst day of your life when life is actually totally great right now. Perhaps you should make these very thoughts precisely then, so that they don’t drag you down too much.
It’s your own voice that still speaks even when you’re standing on the border between life and death. And you shouldn’t deprive yourself of this voice by keeping this subject at arm’s length because you have too much to do, because the subject is too morbid, too depressing.
Otherwise it simply applies: “Now!” is the right time for an advance directive. You don’t know what will happen tomorrow. Whether you’ll come off the motorway. Whether you’ll lose your balance on a ladder. Or the bus will cross your path.
The decision about who was allowed to make decisions for me in the worst case was then relatively easy. Since I’m currently single, I transferred this responsibility to my parents and siblings. By age. And I let everyone know what I want. With that, everything was arranged in the end. I hadn’t reckoned with this simple form from the generator occupying my thoughts for so long.
The strange thing: with that came peace. I’d arranged everything in such a way that it could carry on without me, in order to concentrate on the fact that it precisely didn’t have to carry on without me.
To come back to the forum post I wrote about at the beginning of this article: before the operation it’s an important question, but a question asked too late. I believe you basically have to ask yourself this question constantly.
Of course an operation is an event that pushes this question to the foreground. But the danger of not coming home again is constantly there. The possibility that something happens at home is constantly there. The Cinemaxx once had an advert on the toilet walls: “Most accidents happen at home. Don’t be at home!” And that somehow captures it.
And as I know from my own experience: the possibility that something is slumbering inside you that you know nothing about but that can kill you … this possibility, too, is constantly present. Or makes you a nursing case. A former colleague from my time before Sun/Oracle had a stroke in the bathroom and had to fight her way back over the course of years and is probably still not, to this day, where she once was. Here too you have to consider who, in the meantime, arranges the things of life while you regain your life. That, too, occupied my thoughts for a very long time.
And therefore the thought “What happens if the operation goes wrong,” as the forum poster put it, is presumably too short-sighted, because especially with children the question actually has to be: “What actually happens if something in my life goes so wrong that I’m no longer here? If I no longer come home?” Once you’ve answered the general question, the operation is only a subset of the problem class “world without me.”
I sealed the envelope with all these deliberations for good on 28 September. Unlike in 2019, when I hadn’t made anywhere near as many deliberations, I didn’t destroy the envelope after my return. The envelope is still deposited in a safe place known to my family.
Failed at my own mantra
In the last chapter I wrote of that mantra I’d wished for the doctors. Along the lines of hope, luck, fear and failure. I myself failed at this standard.
Because I hoped that everything would go well on the day of the operation. I also knew that in the end chance, too (you may also call it luck, fate or karma), would decide how everything would proceed. Despite this mantra I was afraid of the operation. And I know that, even if a failure was unlikely, I’d decided to determine, with a small probability, that last day, indeterminate in a person’s life.
And with these thoughts I went into the hospital. Outwardly calm, but inwardly churned up. That’s what the next chapter is to be about.
