Last December I started telling a story. A story that began with a diagnosis on a day in November 2018. So far it has become nineteen chapters, an attempt to write down what has happened since that day. This is now the twentieth part. And it is the last.
The Scissors at Mnemosyne’s Tangled Thread1
To this day I can vividly picture that almost completely dark room. September, the thirtieth. Morning, shortly after six. One year ago. Just before I was wheeled into the preparation room for the operation. The preparation room was very bright. The glow streaming through the open door bathed the anteroom, where I lay waiting, in a strange light.
The light dazzled me a little when, minutes later, I was lying in the preparation room. Machines next to me. It is the last memory of the “before”. I no longer know what words the doctor said then. Whether I answered.
The first memory of the “after” is the low sun in a hazy-looking sky while I was lying in the intensive care unit. A moment of which, to this day, I don’t know from my own memory whether it was one or two days later.2 Whether the haze was in my head or really in the air.
Both moments frame an “in between” of which I have no memory. Over the past year I tried to fill this gap. Without much success.3
The Gap That Cannot Be Filled
By now I have managed to piece together a few fragments. But none of them are my memories. I took them from the reports, the invoices, the accounts of the people around me. They are borrowed memories. In place of real ones.
In the year since the operation I have picked up the reports several times. To find something new that I might not have noticed before. To give the gap at least a structure, if it cannot be filled. But also as a contrast to today, to see how far I have actually come in this “after”. I have given up on that by now; there is nothing left to be drawn out of them.
I had to be very careful that other people’s memories did not become mine. That images seen in videos or found on websites did not suddenly get built into my own remembering, because the mind tries to close a gap and grabs everything it can get hold of.4 Nature abhors a vacuum; the brain, apparently, abhors memoryless blanks.
My own memories of this “in between” are irretrievably gone. No, they never came into being. And that has affected me more over the past year than almost anything else. The number of conscious days is finite, and I am missing two … or maybe three.5
Of course I know that this gap was caused by the anaesthetic drugs. That this gap is even a desirable effect of anaesthesia. In this context, one doesn’t need to remember everything. But that doesn’t make the gap any easier to accept.
The irony is that, at the same time, there is at least one memory I am glad not to have. Extubation after the operation is described as very unpleasant. That may be. I don’t know. Because I can’t remember. Even a year later, no memory of it has taken me by surprise. And for this one gap I am grateful.
After
My memories of the first days after the operation are patchy. I still remember a whole group of doctors suddenly standing at my ICU bed. The moment I learned about the hemiarch. I know this is my memory because I had a speaking part in it. I said a few words. My memories only really become complete again one or two days later. But maybe I simply slept through the rest of the time.
This “after” is not easy. Perhaps because this time began with a catastrophe for another person.6 But: for the second time in twelve months, I saw what medicine is capable of. And, just like the first time, I am grateful for it.7
My own path was winding enough as it was. Looking back, the year can be divided into four sections. Each about three months long. Each with its own heading. The first three months were the time of physical healing, of rehab, of being unable to work.
The next three months were a phase of grasping that the operation was now actually behind me. I had also given myself these three months to get back into the rhythm of my work. With that, the plan I had made in the weeks before the operation was fulfilled.
But then I spent another three months in a valley that opened up as surprisingly as it was predictable. Surprising, because after the operation and a completely unremarkable follow-up examination, I hadn’t expected it. Predictable, because grappling with such an existential situation cannot leave no trace. And those traces come to light exactly when they are no longer covered by the burden of the preceding months. I had no plan for this time, because I didn’t think I would need one.
You can see this interim high followed by the valley very clearly on this blog. The first three months of this year were marked by an almost – but really only borderline almost – manic output. I couldn’t sleep at the time and had many waking hours. In the next three months it became very quiet here on the blog. I was more occupied with myself, and with functioning at work at the level I primarily expected of myself, than with the blog. Or with the rest of life.
If I may give one last piece of advice in this series: give yourself time after an operation like this. It is unrealistic to simply dance lightly through the world again after such an experience. It is unrealistic to think: “Three months of healing, three months of reintegration, and then everything will be okay again”. No. It won’t. You need time to process and understand all of this. The dance through life is a slow one at first. It only gets faster with time. My head took that time, whether I wanted it to or not. Don’t be too surprised if yours demands the same.
The last three months were finally the hoped-for and now tangible departure into this new time. I took a long vacation in August, and only at the end did I really notice how necessary it had been.
Even if it may sound that way, this was not a sudden process. Neither was everything bad in the months before, nor did everything suddenly become good out of the blue. You still have to walk out of the valley yourself, and it is still some way to the summit. But I can see it. In front of me. It feels almost within reach.
Consequences
All of this did not remain without effect on me. The difficulties and worries of this time led me all too often to the open fridge door. At some point I was at 134.6 kg.8
It took me until July of this year to find a way out. I thank Brendan Fraser for making me see which path I had taken. It was July 8th. That evening I watched the film “The Whale”.9 The next day, the weight loss began.
How necessary that was became clear to me when I picked up my new ID card in mid-August. Or, as I also call that little plastic card: the warning memorial. Seriously … I didn’t survive all of this just to eat myself into physical decline and subsequent death.
As always, I needed a kick in the backside to change something. In this case I needed a film to realise that what I was doing was essentially self-destructive.
My escape from this spiral has been successful so far. Again in my own particular way. Extreme. My first operation couldn’t just be an appendix. Or a broken bone. It had to be the aorta right away.10 The full toolkit of the medical arts. I couldn’t just cycle a bit. It had to be tens of thousands of kilometres in the years before my operation. And now I couldn’t just slowly reduce my weight. It had to be 20 kg in just under three months.
I am at 113.9 kg. There are still another 20 kg ahead of me. But if I keep going like this, I will probably be where I want to be just in time for the great Christmas feast11, of all things. Where I have been before, about ten months after that November 2018 in which I received the diagnosis.
Where I will be again.12
How Are You?
How am I doing one year after the operation? That is a difficult question if you want to answer it completely. Let me first answer it in summary: I am doing well. No other way to put it. At most a quiet whining at a very high level.
That part of the answer is easy. But it lacks some nuance. At the beginning of this series I wrote that I have a disease that others cannot see and that I cannot feel. The strange thing is: I had an operation and I don’t feel anything of that either. I am one of those people who have come through this operation very well so far. Not rare, but by no means a given.
Yes, of course I know rationally that I have a tube graft in my body. It is still the scar that reminds me of the operation every day, usually in the morning. In front of the mirror, brushing my teeth after showering. I know that this scar will remind me of this operation until the end. It may fade a little more, but it will remain.
But I hardly think about the fact that I now carry an implant card around with me. I actually don’t think about it at all – well, almost. After all, the graft doesn’t let me do anything more or less than before. I curse it as little as I praise it. Life simply goes on. It is there. Nothing more. And the fact that you now have a Dacron tube inside you is a thought so strange that I hardly have it. It resists being thought.13
Since my aortic valve is still an original part, there is no clicking to remind me of this operation either, no clicking that would keep bringing back those weeks in the autumn of last year. Click. You’ve had an operation. Click. You’ve had an operation. Click. I am grateful from the bottom of my heart that this cup has passed me by.
The operation has eliminated the risk of dying from a rupture. But you can’t touch risks; they are not tangible. They are vague. A threat for the future. I will probably no longer leave the stage before my time because of the aneurysm that was found in 2018. Damocles has packed up the sword, clocked out and gone on his way.
The operation is moving further and further into the background for me. And that is a good thing. Even if it feels odd that something so big suddenly takes up so little space in my thoughts. For seven years it lay inescapably in the future. Now it is in the past. Perhaps also because worries about other people have pushed their way into this place. But above all because something that took up a large part of my thinking for a long time is now already a year behind me, and I want to let go.
Change
But something must have changed, surely? Yes, it has. I have changed. Once again. I wrote that fear changed me between 2018 and 2025. That everything that happened in those years shaped me for a long time. Noticed more by others than by me. Not necessarily to my advantage, as some people had to find out. Those changes caused by fear are still there, still visible, but they are fading more and more, like the scar.
I will never again be the person I was before 2018. I suspected as much last December, when I started publishing the account of my personal journey. But today I know it for certain.
Because on the foundations of the old, someone new emerged and is emerging again. More aware of their own finiteness. But also with less fear, much less fear. With all the experiences of the last, now almost eight years since the diagnosis, some of which were very existential. I have gained perspective; some things have shrunk to a realistic size, others have now been given the place they should have had from the start.
It is the loss of the feeling of taking things for granted that changes you: that you can’t take anything for granted. Not even life itself. I exist in the fabric of my relationships with other people. I depend on them, even if I claim that I can get through the world perfectly well on my own.
When we are at rock bottom, when we can’t even wash our own hands, when we can’t even form memories, when even the edge of the bed is a place we can only reclaim with help, it is other people who build us back up. Family, friends, nurses, therapists, colleagues, doctors. Not only knowing this rationally but experiencing it emotionally in this raw and existential way – that is the greatest change such a situation gives you. Yes, gives. Because it is a valuable experience.
Otherwise I am still Jörg; I still think far too much about some things. That was the case before the operation too. And it has stayed that way. After all, it was my aorta they operated on, not my head. My thoughts are just devoted to other things today.
And now? Where do I go from here? Also a good question. Onward! But that is material for those articles in which I will look back on the past year. I no longer feel that everything that follows needs a special place. Or should have one.
In the future I won’t have to see doctors so often. Once a year to the cardiologist for an ultrasound, every few years a CT scan at the hospital where I had the operation. To check that everything is still where it should be. No more working my way from ultrasound to MRI to ultrasound every year. Each time with the worry that it might be time now. My next appointment is actually not until next summer. Plenty of time until then without nagging thoughts. The feeling of living, to some extent, on borrowed time14 has passed.
And otherwise? I no longer accept every invitation to dance. Only those that truly carry meaning for me. Many other dances that once seemed big and important to me are trivial and small to me today.15 Under the same circumstances, I would no longer set out for Koblenz today.
The End of This Journey
When I received the diagnosis in November 2018, standing outside the hospital, I thought that everything was now over. Then my defiance awoke. The years until the operation were difficult; I was difficult.16 But it was also a time full of beautiful moments. The climax of the story was one year ago.
With everything that has happened, with everything that is today, with everything that was, it is even harder to keep one thing in mind.
That sentence my family doctor said: “You’re still here!” And in November 2018 I did not take that as a given. When this journey began. Outside the hospital in Koblenz.
Tolkien says through Bilbo: “It is a dangerous thing, Frodo, to step out of your door. You set foot on the road, and if you don’t watch your feet, there’s no knowing where they might carry you.”
No. There was no knowing. It’s just that, after all of this, the feeling set in that even a road like this holds beautiful and important things despite everything, and that by the end of the journey enough has happened to make it worth telling.
With this last text of this story, I now leave this journey behind me. To all of you who have read the whole series: thank you for accompanying me in this way. I will continue to celebrate September 30th in the years to come. But no longer the operation I survived; rather the joy that family and friends stood by me.
Another journey starts now. It can start.
Because I’m still here.
Afterword
Sigh, in the end I couldn’t quite keep my hands off this text. Perhaps that is normal for a text one has worked on, filed and polished for quite a long time.17 Because in the last text of a series you want to say everything right. Because thoughts are still fighting to make it into the text.
There are moments in films and series that touch you in a special way. In which you feel strangely understood. In which you hope that the writers are kindly disposed towards a fictional character. I had such a moment with “The Pitt”.18 I really like this series a lot.19
If you haven’t seen the series yet and don’t want to read spoilers about two side plots, you should stop reading now. I won’t give away the big things, though.
In the second season there is Duke, a patient and friend of Dr. “Robby” Robinavitch, who, as it turns out over the course of the episodes, has a thoracic aortic aneurysm.20 More or less my problem, then, except that mine was asymptomatic. Duke’s aneurysm has not been operated on by the end of the season. Even though I know, of course, that this is not a real case, I sometimes wonder how things will go on for this person in the next season.
I would wish that it doesn’t follow the typical TV clichés. The heroic operation by a receptionist who was actually a vascular surgeon back home in Poland. The dedicated doctor, the brilliant doctor, who in the end fail to save the patient. But rather what usually happens in the real world with an elective operation: a Duke who, after eight hours of surgery, lies in his bed a few days later eating ice cream.
I like to end texts with a reference to music. Music makes it possible to say things that you cannot or do not want to express yourself. The song the second season ends with21 is “Thousand” by Rosie Carney feat. Lisa Hannigan. It ends by saying that there are reasons to leave, but thousands to stay. Amen!22
The scene in which this piece is played is one of the most beautiful scenes I have seen in a series. Dr. Robby hears a child crying who was left behind by its mother. He takes over from the nurse, puts his phone, on which the song is playing, next to the child, picks it up and comforts it. With words that could just as well apply to himself. Among other things, he says: “Do you need to be swaddled again … yes it is … I wish somebody would swaddle me. Yes, i do” And when you have been through everything I have written about in the last twenty parts, you look at the TV, watch this wonderful scene and think: Yes, exactly. Sometimes, yes. Right now, for example.
Even if you are actually long past the swaddling age.
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The Moirai weren’t wearing their glasses and cut this tangled ribbon instead of my thread of life. Phew. Good thing, that. If you ask me. ↩
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The invoice for my hospital stay places me on the regular ward as early as October 1st, no longer in intensive care. I therefore assume it was one day after the operation and that it was the rising sun shining in my face. The direction would fit. Certain? I’m not certain. But I don’t think I was moved to the regular ward on the same day. ↩
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I just hope I didn’t say anything too embarrassing23 while waking up. ↩
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Since then I have wondered to what extent the accounts of “I can remember things that happened while I was in a coma” are not stories told by relatives that were integrated like one’s own memories. Just as I cannot say for sure whether memories of my earliest childhood are my memories or memories of my parents that became mine. ↩
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If you want to look at it positively – time travel is possible: you get an infusion. “Ta-da” … and you’re two days in the future. ↩
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It is a person close to me, not just a distant acquaintance. I don’t want to write more about it. It is not my story. ↩
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I stand by it: cancer is an asshole! Even if medicine can commute a death sentence into a life sentence: chronically ill, but alive. Even if it’s just for a while. I hope so much that it’s a longer while. My illness turned me into a lay expert on aortic problems. By now I know far too much about the cancer that changed that person’s life. Even more knowledge I never wanted to have. ↩
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Which, even size-corrected (Trefethen method), corresponded to a BMI of 34.26. And that was absolutely no longer sustainable. ↩
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An excellent film about a person whose life completely slips away from him after a stroke of fate. He falls into unrestrained eating. I don’t want to give away more. Emotionally utterly unsparing. A film you have to let yourself get into. Which is probably necessary if you want to understand why I reacted to it so strongly. ↩
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Although … I damn well didn’t choose this. ↩
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I will have earned that, though. Not because I want to reward myself. But because at this celebration I want to think of my family and friends. Of those people who carried me through this time. But under no circumstances about entering every last morsel into Kaloriendingens after all. ↩
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That time in which, despite the problem slumbering inside me, I felt more at ease in my body than ever before. If anyone can make sense of that, please explain it to me. I can’t. ↩
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I’m glad I don’t have to imagine that I had to be repaired with a medical version of a Tip Top puncture repair kit. With one of those black-red-orange patches. ↩
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I like the term “borrowed time”. I first saw it in the 80s as the title of the computer game “Borrowed Time”. When I held the game in my hands a few years after its release, I thought it was a great title for a detective story. But the older I get, the more meaning it takes on for me. ↩
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Yes, I have helped myself here, unabashedly and without any shame, to Reinhard Mey, a well-known german song writer. Some sentences are so right that there’s no need to reinvent them. ↩
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One of those people probably no longer reads my blog; another person never read it. We lost touch. Nevertheless, here – in case you ever stumble across this text: a deeply felt “I’m sorry!” ↩
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I checked in Git. Over 60 commits over almost a month on this text alone. In Word without Git it would now be called “part-20-final-final-final-reallyfinal-nowdoneforgoodwithchanges-correctedversion-finalcorrectionv3.docx”. Usually there are far fewer. And many commits bundle a whole series of changes. With this text I found it extremely hard to call it finished, leave it alone and simply let the automated process publish it on September 30th. ↩
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I have often read that it is ER 2.0. But that doesn’t do the series justice. Yes, Noah Wyle plays the head of the emergency department, Dr. Robby, here after playing Dr. Carter in ER. But in my view “The Pitt” is orders of magnitude better. ↩
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I believe everyone should have their own personal Dr. Abbott. ↩
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Somehow I had an inkling early on of where Duke’s story was headed. I was to be proven right. ↩
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Okay, okay, strictly speaking it’s “You Oughta Know” by Alanis Morissette. But that’s post-credits. That doesn’t really count. Somehow. ↩
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Forgive me this appropriation as an atheist. ↩
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Another one of those design flaws in humans. Apparently, during shutdown, the firewall for embarrassing anecdotes goes down first and only then the ability to communicate. But at least with little time in between. When booting, it’s the other way round. The startup of this firewall takes considerably longer. Maybe it’s just as well that one doesn’t remember anything. My nightly video library of the blunders, bad luck and mishaps of my life doesn’t need another tape. ↩
