18 December 2023

a christmas tale

I have never written about what I am going to remember here and I have only ever told this story to one man, my husband. But over the years, I have told it to several women, friends, doctors and even to strange women in those special moments of sudden intimacy, when we can exchange true stories and know why. An empty waiting room, an endless train journey, outside the cinema after a film that has awakened memories. 

In a roundabout way, this post also explains why I blog in English, at least it does that to me. But more about this another time.

To begin, a warning, this is long and it deals mainly with issues of gynaecology.

Thirty years ago, in the weeks before Christmas, something was done to me. I can't find any other words to describe it. Something was done to me while I was having surgery under general anaesthetic for the first time in my life. It was not a botched job on the operating table. I was 36 years old and after lengthy examinations, discussions and even a second opinion I was promised minor surgery to reposition my uterus.

We had postponed any attempt to get pregnant for a second time long before. Miscarriages are painful, physically and mentally, and the ones I had experienced had been exhausting. While I had no problem getting pregnant, I could no longer carry a foetus to term and I wanted to know why. My first pregnancy was easy but our daughter was born suddenly eight weeks before her due date. So when we moved to Germany in the early 1990s and finally had reliable and affordable health care, I found out what the problem was and that there was a way to remedy it. It wasn't necessarily our plan to have a second child, but the idea that it might still be possible and that my other nagging abdominal problems would disappear at the same time was a relief. We were even a little excited and thought that something good was coming, for me, for us, maybe even for us as a family.

About ten years later, I came across the term PTSD for the first time. I had been commissioned to translate a review paper for a scientific journal, comparing research data on the effects of war trauma. It made me think of my mother a lot, but there was also this list of typical symptoms that are part of the diagnosis of PTSD: nightmares/recurrent dreams, flashbacks caused by triggers such as smell, taste or touch, and feelings of guilt. I remember that I reassured myself over and over that I certainly never experienced any war trauma.

When R dropped me at the hospital that December thirty years ago, we found everything very impressive. It was one of the university's teaching hospitals and lots of young doctors in white coats were scurrying through the corridors. In the afternoon, when all procedures had been explained, all papers signed, I was allowed to go for a walk in the park, it was starting to snow. The night nurse helped me get into the surgery outfit and around midnight, gave me a sedative. Routine, she said, so that you can sleep well and not be nervous in the morning. My surgery was scheduled for 6:30 a.m. I was the first one that day.

I've had this dream for thirty years, sometimes several times a week, sometimes not for months. It's not really a nightmare in the strictest sense. I am in a tiled basement room, lying on a hospital bed. I can see a payphone on the opposite wall and I know I have to get up and phone R, he needs to come and get me out of here. But I'm so tired and somehow tied to the bed, I can't get up. When I try to call for help, I have no voice. Sometimes in the dream, there are lots of other people on beds in the room, sometimes I'm alone.

When I woke up and for the first 24 hours after surgery, I kept vomiting, which I was told was a typical reaction to a specific anaesthetic gas. On the second day after surgery, the young trainee nurse who had brought me the medication for the day came back and apologised because she had accidentally added this hormone tablet. But you don't need that any more, she said with a laugh, no more monthly periods, that's actually great, isn't it?

The ward doctor, who eventually responded to my incessant pressing of the alarm button, read to me from my patient file: successful hysterectomy.

I still remember this: we were five women in that room, with various gynaecological diagnoses, cancer, miscarriage, pregnancy complications and me. It was the week of the Rhine flood, the great Christmas flood, the flood of the century, and at night we were lying in our beds watching live on TV as the historic center of Cologne flooded and people tried to get into the cordoned-off alleyways at the last minute to move their cars. I remember my friend Y furiously kicking the ward doors when she heard. When I was asked if I wanted to contribute a nice song or a favourite poem to the upcoming Christmas party,  I walked into the doctor's office, pulling the iv stand behind me and told her to remove all the tubes, while R packed my bag. I had to sign something I didn't even read, nobody said goodbye to me. In the car I leaned against the window and looked down onto the floodplains below the motorway bridge, water everywhere. The next day was Christmas day. We told R's father on the phone, he started to cry.

I find the smell of latex gloves hard to bear, the colour of the red rubber tubing used on ventilators in the 1990s makes me nauseous, only briefly but so severely that I have to leave quickly, and if I touch a balloon or a rubber band I get a splitting headache. Sometimes I think, maybe it's always been like this, you just didn't realise it, don't make an issue of it. But I think I know when it started.

In the months that followed, I functioned surprisingly well, the operation was a complete success, I was told.  My gynaecologist was delighted with how neat everything was healing and what an excellent outcome, really, for me as a woman because after all, only the uterus was gone, everything else still there, he said triumphantly.

Then I got sick, small things at first, herpes blisters, bursitis, UTIs, conjunctivitis. One after the other. Then pneumonia. No end to it.

At some point during those feverish months, I wrote a letter to my gynaecologist, the hospital, the head doctor whose team had operated on me and the ward doctor. I kept a copy of this letter for a long time. It wasn't until this summer that I finally tore it up, because every time I read it, it felt more foolish, much too emotional. My gynaecologist replied immediately banning me from his practice. The hospital sent me my an incomplete version of my patient file only after I had transferred an excessive amount of money for copying and postage. I don't remember when I threw all of that in the bin. I never received a reply from the doctors at the hospital.

To this day, there are times when I am convinced in my heart of hearts that I brought this all on myself, that I knew or should have known what was going to happen, that I was simply too lazy to get out of that bed and walk away. That I was fed up with painful periods and that perhaps deep down I didn't want to have a second child anyway. That I am just making all this crap up because I want attention. And that I certainly never had any traumatic experience but would have liked to have had one because, oh, the melodrama. Stop acting like a helpless ninny, says a voice in my head, it wasn't anything really. Other people experience real trauma. Not you. The voice sounds like my mother's.

I don't remember how or when, but one day I was sitting in front of a doctor I didn't know. I had yet another UTI and needed a sick note for work while our family doctor was on holiday. She asked me the usual one or two questions and somehow I started talking. I know I was very calm, determined to tell all this once and for all and then never again. She stood up, walked round the desk, took my hands in hers and held them for a while. Without asking, she called a lawyer and made an appointment for me, then she called her friend, an older gynaecologist, and made another appointment for me.

The lawyer didn't give me any hope, but the older gynaecologist was my doctor for many years afterwards, and now I'm seeing her successor. 

All that was a long time ago. It has become a chapter in the long story of my life, our lives. A lot has happened since then that made and continues to make me, us, happy and content. I also make sure whenever possible that any doctor I need to consult is a woman.

Some years ago during a routine ultrasound check-up, I was shown how my colon had begun to shift into the space where so many years ago my body had grown a baby and two months ago, I was told that in its new place, this bit of the colon has developed a twist that may need to be treated surgically. I was told that the eventual surgery was easy and that there was no reason to believe I would not recover rapidly.

Since then, I've been dreaming this dream more often. It does not surprise me. I am not afraid of surgery, but I am still not able to forgive myself for not getting off that bed and run from that basement room.


 



14 comments:

  1. First, I am grateful that you blog in English, making it possible for me and other English speakers thousands of miles away to experience the stories from your life, especially this one. That said, my gut feeling is that something on the level of war trauma happened to you or you would not have had a dream like that for 30 years. You couldn't get off that bed. No one could. I have my own recurring dreams. Sending love to you and all of us who can't get off that bed. Not yet. But I know the time will come.

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  2. It's unfortunate that you can't sue the bastards.

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  3. I'm glad you blog in english, otherwise I would not know you.

    I'm horrified for you. did they not tell you they were going to do a hysterectomy or was the surgeon confused as to which patient was on the table? as my husband says...you know what they call the person who graduated at the bottom of their class in medical school? doctor.

    I think I would be very concerned about this upcoming surgery considering what happened in the past. I'd have to have several serious conversations with the doctor prior, might even write on my abdomen the procedure I was there for.

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  4. OMG woman. I think I would have lost my mind. What a piece of shit surgeon and he thought he had done you a fucking favour. What that surgeon did was abuse and his bragging about what a good job he had done was gaslighting. He was/is a fucking narcissist and I am so angry. He took away your future children and he didn't even understand that.
    How long ago did the autoimmune disease show up? I'm guessing not long after. I'm so sorry sweetie.

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  5. Please, please, please know that you should feel NO guilt for what happened. You had absolutely nothing to do with how you were mistreated. I would hope for you that someday you will suffer less from that feeling of guilt. Anger and sadness- fine. Grief- fine. BUT YOU DESERVE NO GUILT!

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  6. First, I appreciate the courage it took to share your experience here...and in English where we could understand it. (from the US) Second, I love what the other comments have said to you. You will get many more supportive comments, I'm sure. But what I want to add is "You did the best you could at that time and place." Please say that to yourself, even out loud, even shout it! You did the BEST you COULD! Someday you may be able to forgive yourself for the feelings that you could have done something else. But for now, please realize the circumstances from then; you having been sedated at the time you were in the basement, and your own knowledge of the minimal information that was given to you. Nobody would fault you for that. Of course you have PTSD from it. It's like reliving it over and over. Maybe a good therapist could help break that cycle for you...only if you can trust her. I, for one, hope you can find a legal way to sew the doctor and hospital for performing the wrong procedure on you. Don't go under a knife again until you feel ready. Just a friendly suggestion...

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    1. Instead of sewing the doctor and hospital...thanks spell check, let's sue the pants off them!

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  7. I need to say something useful. And factual. As it happens I do know something about this area. But I need to re-read what you have written several times. And reflect. Later, then.

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  8. Holy shit, Sabine. That's shocking. Appalling. I wonder if the surgeon knew he'd made a mistake and was trying to cover for it by "selling" you this "happier" result after the fact? Or did he make a deliberate decision to perform a hysterectomy for some clinical reason, in which case he should CERTAINLY have cleared it with you first! In any case, I'm surprised you had no legal recourse.

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  9. What a heartbreaking and terrible life-changing experience you had at that hospital. I am so sorry you went through all of that. There are some moments in our lives when we wish we could go back in time and change things. (NewRobin13)

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  10. PP, my elder daughter (only a few years younger than you) is here to help me through Christmas and to take on some of the work of looking after my part-invalided wife. PP did five years as a hospital phlebotomist, then taught science at a secondary school. She read your post twice, plus the comments, commended the dispassionate style in which you've written, and reflected, "We need to trust the medical people who look after our health. Perhaps the worst thing that happened here was that it seriously risked undermining this essential trust, perhaps for a lfetime."

    I reflected back on my long life. Doctors were different in my youth (ie, the fifties) . They deliberately distanced themselves from their patients, witholding information, encouraging patients to think of them as remote gods. Not to be questioned. A complete contrast to the surgeons I started to meet in 2021; all well aware of the need to create a bond (Based on sympathy and explanation) which would then form part of the healing process.

    I wanted to be useful and factual but it was more of a hope than a prediction. I can only hope you are now in the hands of medical people who treat you as mine have treated me over the past two years. Even risking laughter - which I encouraged.

    I cannot know what you have gone through. I am a man. There's an uncrossable frontier. But I may also hope that telling this history has had some kind of purging effect, however slight.

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  11. OMG. Sabine, I am so sorry this happened to you. In my work in maternity care, I have been witness to stories like yours. It's never ok, never, what you have experienced. There is more transparency in medicine than there used to be but we, the clients, still need vigilance and caution. Mistakes are made. Grievous ones. Or decisions without permission of the client. The carelessness with which you were treated is abominable. Perhaps as has been stated here, you have a modicum of ease telling this story. Again, it is appalling and I am so sorry.

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  12. I don't have anything to add to all the support and wisdom and compassion you've gotten here. I'm so sorry that this happened to you and hope that in the telling you can feel some peace.

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