Self-healing text
When this text appears on my blog, it will probably still have a few rough edges – many mistakes and perhaps a few unfortunate phrasings. That is simply part of how it came to be. Parts of this text were written at times when concentration was barely possible. But don’t worry, that will change! Just as I have undergone healing over the last few months and as this healing will continue, this text will improve over time. Maybe it won’t lose all of its rough edges – after all, they belong to it just as mine belong to my personality. But the mistakes and unfortunate phrasings will disappear over time. It is a text that heals over time.
The text is long. It could be more focused. But I was not focused at that time. The text could concentrate. But I was not concentrated at that time. This text is me. From that time.
An important note: I am a medical layperson. I have just lived with my illness for a long time. I may have misunderstood or misrepresented any of the medical information here. Every piece of information reproduced in this text is potentially taken out of context, wrong or incomplete. Listen to your doctor! The mistakes are mine, not those of my doctors. My experiences are anecdotal. Your experiences may be different.
Preface
This text is very personal. It tells of a journey that began on 26 November 2018. That day is now a little more than seven years in the past, but over those years it has strongly determined my life. Originally I wanted to publish this text on 26 November 2025. But unfortunately it didn’t quite work out. I simply couldn’t get it finished. Here a statement that was still missing. There a point that, after all, seemed too private to me. But the text is finished now, even if I will probably keep writing on the relevant section every morning before publication over the next twelve days.
In other places too much had been written, so that conclusions about other people’s journeys would have been possible. Those people will probably still recognise the point of intersection at which our paths crossed. I hope, however, that I have removed any identifiability. I write about my journey. Revealing other people’s journeys – even if only for a short stretch – is not for me to do. If someone who accompanied me on my journey recognises a discussion, then he or she can be sure that I thought about it for a long time and that the topic is very important to me and has accompanied me for a long time.
I thought for a long time about whether I should publish this post. It somehow feels as if I were bringing things that do not belong in public into precisely that light of the public. And, strictly speaking, that is somehow true. I understand that point of view.
What one can debate is the question of whether they belong in public. I don’t know. I have talked with people about this text. Someone even said I would be making myself vulnerable in some undefined future. Because the net never forgets. Ever.
On the other hand, there are some people who have poured their experiences with such a situation into books. I have read one of them. So it doesn’t seem to be completely off to talk about this topic. I don’t want to write a book, but with my blog I have another way to publish my experiences.
People don’t like to talk about money and illnesses. Except perhaps with family or closest friends. There is the view that with such texts one opens oneself up to the voyeurism of others and thereby shows weakness. As much as I understand this opinion, I do not share it.
Weakness
Weakness? That is an interesting topic. We tend to maintain a façade of invulnerability and invincibility. As if there were no battles we could not win. Possibly humans need this lie of life on the outside. For whatever reason. Few people show themselves vulnerable. Even fewer people show themselves hurt. Especially among men this seems to be a problem.
We don’t talk about the battles we fight behind closed doors. In our society today, strength and perfection are revered. On the outside a life appears perfect. On the outside it looks like strength that one projects. But perhaps this is a mistake. I believe that behind every closed door and every person we encounter, countless daily battles with the challenges of life take place. Battles that we don’t see, but that weigh on people. Cracks in the perfection, weaknesses in the façade of strength.
But if you don’t talk about it, the illusion easily arises that all other people have no problems in their lives. With others everything looks so easy. That they have no weaknesses. And don’t have to fight any battles. At least that’s how it sometimes seems to me.
You then believe that you yourself are the problem, because you know your own battles. You don’t see other people’s problems behind their doors and start to believe they don’t exist. Or not the way they do for you. Since your own problems are simply closer to you, they appear excessively large. Objects in the rear-view mirror appear closer than they are. And towers that stand next to you appear enormous and oppressive, while in the distance they are landmarks by which you orient yourself through life.
But here one is falling for a misconception. Everyone has their own problems, challenges and battles. Some topics are similar for many people, others are somewhat rarer. But I would claim that among eight billion people there is at least one person who has the same problems. Maybe with other names, maybe in other places. But otherwise astonishingly similar.
Moreover, it is not we who give ourselves this veneer of strength and perfection. Most of us are all too aware of our weaknesses and problems. It is a projection from the outside. Perhaps because we want to see in other people what we cannot see in ourselves.
I myself am guilty of maintaining this illusion. Too often I have answered “Fine” to the question of how I was doing, even though I was not doing well over the last seven years, because my thoughts were elsewhere. With the illness, with worries, with all kinds of things. If only because expressing such a thought seemed inappropriate in the situation, when after all you knew about other people’s worries.
And why should one talk about it? People have their own problems that they have to solve. Dealing with other people’s challenges takes energy, thoughts and time that many people simply no longer have. You can’t demand that of anyone. Other people are not the emotional rubbish bin for the variety of worries you carry with you, not the therapist for coping with the challenges you face.
I will write here about one of my problems. I am not writing here in the hope of finding advice or receiving confirmation. As far as my problem is concerned, I am at the preliminary end of the journey. I have found a solution. And the fact that I can still write here tells me that the solution was certainly not perfect, but reasonably okay. So I have already navigated the rapids.
I am writing it in the hope that someone reads it whose problem is so similar that he or she can draw a benefit from having invested the time to read this text. Because somewhere among the eight billion people there must be someone who faced or is facing the same challenges.
So: in this article I will write about an illness and how I dealt with it. If someone construes a weakness from the fact that I speak so openly about this topic, then all I can say is: so be it! Or as Die Ärzte sang so well: “Lasse redn”. Let them talk.
Battle
Speaking of battle: I have learned that with many people it is frowned upon to speak of a battle when living with illnesses. Unfortunately, as you get older, you are confronted more and more often with the fact that somewhere in the family or circle of friends, among colleagues or acquaintances, very bad news is suddenly conveyed. “I wish you all the best and lots of strength in this battle against this illness.” That is a sentence that easily rolls off the tongue in situations in which you talk with someone about an illness. For lack of other words that first have to form in the head.
These words are in part not gladly heard or read. Because that would imply that one had simply not fought hard enough if one loses the battle in the end. And with that one would, as it were, put the ill person in a corner of weakness. I have heard this interpretation several times over the past years, when a well-meaning word didn’t go down so well.
I cannot follow this interpretation. I think one can dislike the term from other points of view, since it comes from a militarisation of language: “to fight”, “to tackle”. But with that we are already at the point of why I do not follow the interpretation that one would thereby imply weakness.
For that it is enough to reduce the word to its violent, militaristic meaning. History is full of lost battles in which the loser is not even remotely suspected of not having fought enough or of having been weak. At the Battle of Thermopylae the Greeks had hardly any chance from the outset. Nevertheless this battle has become part of the mythological edifice of European civilisation.
Sometimes the success of a battle lies not in winning, but in delaying the inevitable. Holding off the enemy until Athens has been evacuated. Sometimes the goal is not winning, but time.
I see it quite similarly with illnesses. Losing the battle is no sign of weakness. It only shows that the illness was overpowering. Winning the battle is no sign of strength that would set one apart from the people who do not survive an illness.
To die with an illness, from my point of view, takes even more courage, even more strength, than to live with it. Because to live with an illness means to live with it. To die with an illness means precisely no longer to live. Sounds obvious, is obvious. That life has an end is one of the great certainties of life, but also the greatest fear. And confronting this fear is something that takes just as much courage as getting through a treatment.
Too often luck (I don’t like the term), early detection and chance decide whether one has a chance against an illness. The chance of having found the right doctor. The chance that an illness arises shortly before the last check-up appointment and not shortly after, so that it has a lot of run-up to bring its destruction upon us. The chance that a doctor recognises that perhaps it is a zebra he or she is standing in front of after all.
One recognises incredible strength in people who precisely have no chance and have to come to terms with it. Merely enduring the moment in which you are told this, and not breaking down in the process, seems to me a sign of strength. Or a diagnosis of which even the layperson knows that perhaps one should slowly start to come to terms mentally with the fact that the light will one day go out for oneself and that this moment is no longer all too far away.
I hope that when this news is one day due for me, I will have even a fraction of the strength that I was allowed to observe in other people. But perhaps there too I simply did not see the moment of breaking down. Because one does not talk about it.
We are all getting older, and I harbour the suspicion that not everyone will be granted a death like my grandmother’s, who fell asleep peacefully. Lifestyle diseases, cancer and other illnesses will tear us out of life long before the powerlessness at the end of a long life puts an end to our existence. So this news will probably be in store for many of us. This assessment is pessimistic, certainly, but I believe realistic.
I would fight this battle against an illness as long as it is still possible, sensible and, above all, one with dignity. But every other approach is just as legitimate: fighting the battle for the hours until the last breath, just as much as seeking the end while the illness has not yet thrown one fully into suffering, while life is good.
Each of these paths is neither a sign of strength nor of weakness, but a consequence of the entirely personal decision about how one walks this last path at the end, and of the chances and options that the illness leaves one to walk that path which one always has to walk alone.
Unfortunately, even at the current state of development of medicine, illnesses all too often find the Anopaia path, which makes the battle with the illness no longer winnable. That is an inseparably connected part of life, which, for all its beauty, unfortunately also offers these moments.
In my past I was allowed to observe some of these battles that did not end positively. Unfortunately. And none of these people was weak in my thoughts or did not fight enough. Not a single one. Not one.
Sometimes you simply cannot win the battle against an illness. You can only delay the end. For your own sake, to have more time. But also for the sake of other people: to be there for them a little longer, to observe how people develop, to accompany them in this development, to see that they are on a good path, even if you yourself cannot walk the path with them to the end.
Good night
There is the poem by Dylan Thomas which, I think, was brought into the consciousness of millions of people through Interstellar. I did not know it before Interstellar, but I like it. Because it touches me. Because it sums up the thoughts about my parents’ mortality so unerringly.
The poem seems to speak from the soul of many people, as often as people quote it when the end of a loved one is near.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
I have always understood these lines as a call to fight against the night, to hold the light up as long as possible and to keep the darkness at bay. Not to surrender to fate, but to rebel against it.
Perhaps that is also why I don’t want to let the word “to fight” be taken away from me in relation to illnesses, when I speak of living with an illness as a battle against it.
The dying of the light is in the end inevitable. The battle with life one inevitably loses in the end. Except in art and religion – whereby I consider religion, in all its variety of forms of expression, in part to be a kind of art in support of a claim to power – no one has ever won this battle. We have to come to terms with that. And in the end, when the lights fade, hopefully have fought well.
I was lucky
With the thought just now I have written myself into a corner I didn’t actually – yet – want to be in. It was one of the last sections I wrote, even though the part stands almost right at the beginning. When you read the coda at the end of the text (in part 13), however, you will understand how I got into this mental corner, where these thoughts come from.
Back to where I actually wanted to go. My battle of the last seven years was somewhat easier. Exhausting, but never hopeless. I was lucky: I am grateful that my illness, which I am writing about today, left me a chance. That the medical procedure was not just a delaying of the inevitable. My problem was solvable, even if the solution carried unmistakable and undeniable risks.
My illness was not a barely understood autoimmune disease. My illness was not an accumulation of cells that had got out of control and was preparing to kill the rest of me. My illness is also not a malformation or wear and tear in my body that constantly causes me pain.
My illness was a kind of mechanical problem. And mechanical problems are something today’s medicine is quite good at tackling. At least some of them. Moreover, in my case the illness was almost without symptoms until the operation. Almost – because there was one symptom: ever-present fear. Fear that changes you, because it may not be obvious, but is precisely a constant companion. A spilled bucket of water cannot do much to a stone, but the steady drop hollows it out.
Which illness I have is revealed in the further text. Whoever just wants to know what I had and doesn’t want to wait for how I wriggle towards this “revelation” in my text, in brief spoiler-avoiding shorthand: ICD I71.2. And the G variant at that. But I hope you stay with me, keep reading and don’t look up what it is. I would be glad.
The past
In the end I decided to publish this text because the illness is now part of my past. I have got through it well so far. I am just knocking on wood three times.
It is easier to write about something that lies in the past. That does not hinder me. Does not hold me back. Is no longer a relevant obstacle for the future. It could be removed. It was removed. It only demands a little more concern for myself in the future. A “taking care of myself” that would be appropriate anyway.
But also because this illness is not burdened with a real or felt stigma that makes it hard to talk about.
Public
Why do I put this text out in public? Why do I drop my trousers here like this? Good question. To get a lot of it off my own soul. Processing, for me, mainly means writing. That has always been the case. I am a write-it-off-your-soul writer. The text would then be a kind of coping exhibitionism. But it isn’t. I don’t have an exhibitionist streak. On that basis alone I would not put the text on my blog.
There is a second, longer (yes, even longer) encrypted version of this text, which I will not publish, in which all the details are – even if they are ever so boring – so that these records remind me of those six weeks in autumn and winter 2025, when I am no longer able to do so myself. A kind of diary. Because this path of the loss of memories too is an inevitable part of life. I just have to make sure that I then remember the passphrase. So this published text is also a written-down memory for which I will later need no passphrase. A brain backup, so to speak.
I could just as well have really only written the text into a diary and then stored it well locked away somewhere. Why didn’t I do that? For one thing, because I don’t like diaries. I like paper. I like fountain pens. I like writing on paper, because it connects me more with the text than the glow of the screen does. But paper does not encrypt.
Mainly, though, I write publicly because locking this text away would have rendered absurd the idea that is actually more important to me – the second idea – behind this text. Because this idea precisely needs the public.
I am active in forums, I have talked with people during follow-up rehabilitation. What struck me was that the worries and thoughts were actually always similar. And often there are only few answers from people who have already been through it. Answers along which you can feel your way through a difficult time.
This text is ultimately a report of how I dealt with this situation. How I dealt with diagnosis and operation. With a contextualisation, since the personal reaction to such situations is always also connected with one’s own past.
It is a text whose goal is also to describe how I dealt with the time between diagnosis and operation. A period that in my case spanned several years. How I dealt with the nights after the operation. And that in the end, at least for me, everything seems to turn out somehow quite okay.
For the reader who is facing this situation themselves, that is probably already valuable information in itself.
Because that is one of the worries you have before the operation: will it somehow be alright afterwards? It is one of the great uncertainties you have after the operation, when you don’t know what is normal. Whether the hurdles you meet somehow fit the path.
I can say for myself: “It turned out okay!” Despite all the obstacles. Despite a long prior history.
And: in preparing for my three-month journey in autumn and winter 2025, I engaged intensively with forums and online texts. These resources were incredibly helpful for me, and I want to return the favour by sharing my own insights and experiences here. I want to provide one more anecdotal data point.
My text makes no claim to correctness. I have probably already repressed a lot from that time, so that completeness too is probably not a property of this text. Many things I also cannot remember. But what is written here are my memories of that time. What I considered important. What I considered suitable for publication.
My text also describes the state about two to two and a half months after the operation. I don’t know what lies in the future. There may be twists that turn all of this around. But for the moment I cannot yet make them out. I allow myself here a certain optimism that is a little untypical for me.
Maybe it helps one or another that here, on my own blog, I “drop my trousers”. If what I have written here about the time with the illness helps even one person, then this text has fulfilled its purpose. Even if it is only the knowledge that some thoughts are not so unusual, that some crude thoughts are simply completely normal. Some strange, funny or painful experiences are simply part of the process.
With this text I also noticed that I needed time to process all of this. My concentration is slowly coming back, and I am already looking forward to my first day of work, because with it normality will finally return. But on some days over the last few months barely two lines came into being, because there was simply fog in the brain; on some other nights I wrote almost manically. In one sleepless night I wrote nearly 3,000 words like that. A single high outlier. In this version, though, there are maybe 500 words that were allowed to remain after a read-through following a night of proper sleep. The rest will stay in my draft poison cabinet. The lack of concentration turned the remaining two thousand five hundred words into a blurry, incoherent word-construct that I didn’t want to inflict on anyone.
And yes, I am aware that for some “blurry, incoherent word-construct” also describes this text well enough.
The last two weeks have lifted the fog, so that I was able to bring the text into a form in which I am happy to publish it. I have a good feeling that in another two weeks I will have the fog completely behind me. It looks good at the moment.
A warning
I would like to preface this text with a warning: it revolves around personal things, health-related things. It is not a report about a life with hay fever, even if that can be extremely burdensome. Instead it is about something that can only be removed invasively.
Whoever does not like to read personal things here, please stop reading here. Whoever is not entirely emotionally surefooted in the direction of “health problems” and falls into a mental hole after reading a text on this subject, please stop reading immediately. Whoever tends towards Morbus Kühnemann or Morbus Mohl, please do not read on. And yes, I know that those two names also say something about my age.
That said: if even one person is shaken up by this text, goes to the doc as a result and has an ultrasound done to determine whether everything is in order in that spot, and thereby learns of problems in time, then the text has likewise fulfilled its purpose. So: here we go.
Stop reading if you are not surefooted in health matters. 3 … 2 … 1 … You have been warned.
One more thing: this text came into being in summer and autumn/winter 2025. Some lines are taken over from earlier versions that I began in August 2025. The text grew over months. That will probably be noticeable in the text. It will probably lack the consistency, the crispness that a text gets when it comes into being in a short time in one concentrated effort.
In the early phase I even discarded and rewrote this blog entry several times, in the hope that something more consistent, something shorter would emerge from it. Didn’t work. The text always just got longer, only meandered more and more over time. At some point I surrendered to it. Whether my statements are more consistent, you will have to decide.
I was in different states at various points during the writing of this text. The thoughts and feelings ranged from anger and despair to confidence, courage and joy. That too will probably be noticeable in the text at times.
I would also like to note that temporal references in this text are not consistent. The basis is always the moment in which I wrote it. I have not aligned them, because the long period of creation is somehow also part of this report.
And with that, enough of the preface. I will probably publish another part tomorrow, which describes that moment at the beginning of August this year when all my plans were thrown overboard.
