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Kirsten's brain

Prologue

"W e're going all the way down."

The pathologist is ahead, walking down the basement stairs, which are cast in concrete. Under the ground, the university's cleaning staff are sorting out the trolleys after the morning round. A yellow sweeper drives past and disappears around a corner ahead.

We walk down a long, grey corridor. The pathologist stops suddenly at a door.

"Here it is," he says, and tells the photographer not to take a picture of the door number.

Then he unlocks it.

Plasticspande

White cabinets line a bare room. Their shelves hold white plastic buckets, and each bucket has been numbered with a black marker. 4, 89, 490, 3788.

Ventilation pipes wrapped in silver paper snake across the ceiling. There is a basement-like smell of wet earth, but there's also another more pungent smell of chemicals.

The pathologist slowly turns the handle of one of the cabinets.

"What did you say, number 738?"

"She should be here."

1. The change

T his story is about a family ghost. My grandmother wouldn't approve of me saying it like that, but in my mind, Kirsten Abildtrup has been a kind of ghost, and for far too long.

Kirsten is my grandmother's little sister. She suffered from schizophrenia and died in a mental institution in 1951, at the age of 24.

I don't remember who told me about Kirsten, but it wasn't my grandmother. Maybe it was my mother.

I do remember lying in my grandmother's bed when she was babysitting me and my siblings, trying to take an afternoon nap, while thoughts of Kirsten whirled around my head.

Who was this Kirsten who I never met? What happened in that hospital?

A photo of Kirsten as a little girl hung on the living room wall at my grandparents' farm. It was there alongside photos of my great-grandparents and my grandmother's five older brothers, and showed a smiling, barefooted, summery girl in shorts and a vest, with narrow eyes and round cheeks peeking out from underneath a sun hat. She held a parasol behind her back.

Kirsten som lille

When I woke up from my nap, Kirsten was looking at me from her photograph on the wall. I looked back at her and felt a chill.

My grandmother is 95 now. She was 94 when I visited her last year at a nursing home in Haderslev, where we're from, and I decided to ask her about Kirsten for the very first time. Before then, we had never talked about her.

Lise og farmor
My grandmother, Inger Abildtrup Søgaard, and me at her nursing home in Haderslev.

At the time, I couldn't have imagined where it would lead. That the question would occupy most of my waking hours and send me all over Denmark, from Bornholm across southern Zealand and into the heart of vibrant Copenhagen.

That the question would take me far into the history of psychiatry, as well as into the future. I had no idea how close I would get to Kirsten.

She knows I'm coming to see her, but she must have fallen asleep, because I make her jump when I knock on the glass door. But then she lights up. She grips the handle of her walker and moves slowly to open the door.

Her hair, once thick and dark brown, is white and wispy. Veins run like small blue rivers under the thin skin of her arms. I make some coffee and sit down by her armchair. We talk about my siblings and my children. Then she opens a box of old childhood photos she's been going through. I know one of them very well. I gather my courage:

"Grandma, will you tell me about Kirsten?"

She takes a deep breath. Then she says:

"For a long time, I couldn't stand to look at photos of her. It hurt so much."

I reach into my bag and pull out my diary. There are five blank pages at the back.

"Kirsten was born on the 24th May 1927 in Rønne," my grandmother begins.

"There were complications at birth. I shot out like a bullet, but Kirsten, she didn't come so easily."

Kirsten was my great-grandparents' seventh child. Five boys and two girls; my grandmother and Kirsten. With just 16 months between them, they would have been called pseudo-twins today.

Familiefoto af familien Abildtrup i 1930'erne
The Abildtrup family at the photographer's studio in the early 1930s. The five older brothers, in sailor suits, stand at the back. Kirsten and my grandmother, Inger, are in the front row, about four and five years old. My great-grandmother, Anna, holds Kirsten's hand.

My grandmother's parents came from church-going families in Jutland and moved to the island Bornholm because my great-grandfather, who had been apprenticed as a merchant in Copenhagen, got a job in a clothing store, which he later took over. They weren't pious, but they were still deeply religious, and became involved in the community of Rønne Church. My great-grandfather always ended his letters with: "Our God in heaven bless and protect you!"

The family lived in a villa on Haslevej, a few hundred metres from the beach. If they'd had fewer children, they might have been considered well-off by the standards of the day, but they had seven children who needed to go to the seamstress and be properly dressed. However, they could afford a nanny and a cook, as well as a camera, which my great-grandmother made good use of.

Familietur til borgruinen Lilleborg i Almindingen på Bornholm
Family trip to the ruined Lilleborg Castle in Almindingen on Bornholm. Kirsten sits on top of the ruin, and my grandmother is on the left.

When I see photos of the family’s life in the 1920s and 30s, it looks like they could ‘afford’ to have fun. The seven children play and joke, they don't sit rigidly and neatly like you usually see children doing in photographs from the time. Children and adults play boccia and Carrom in the garden and go on excursions on Bornholm, to the North Forest and the forests of Almindingen.

"We always dressed the same," my grandmother says, pointing to a picture of her and Kirsten taken in 1932 when they were five and six. They're eating tomatoes.

"People often thought we were twins. We were close, but we were also very different."

According to my grandmother, Kirsten was much cleverer than her; by far the best in her class. The family used to talk about how funny it was that the youngest child was smarter than all her older siblings. However, it wasn't so easy socially.

"I guess I've always been very outgoing and had lots of friends. But Kirsten found it hard to make friends. She couldn't hold on to them."

As the only two girls in the family, my grandmother and Kirsten shared a room from a very young age. Their beds were beside each other, separated by a small table. After their evening prayers, they lay there and whispered to each other.

It was in the girls' bedroom that what my grandmother calls "the change" became clear. It was in the early years of the war. The girls had reached puberty and had been confirmed. Kirsten's confirmation was in 1941 in Rønne Church.

Kirsten ved sin konfirmation i 1941
Kirsten at her confirmation in 1941, surrounded by her parents.

My grandmother remembers that Kirsten had questions – lots of questions – for the priest, and that it was something her parents talked about. At home, before they went to sleep, Kirsten would drill deeply and insistently into a single question:

"'I don't understand, Inger, how people have children?' That's what she would say, and you couldn't get her away from the topic."

"Finally I said, 'well, I can tell you if you really want to know.' But when it came down to it, she didn't want to hear it after all."

Suddenly, Kirsten could no longer keep up her high standards at school. The doctor started coming to the house in Rønne more often. Kirsten couldn't sit her middle school exam. There used to be just one school year between Kirsten and my grandmother, but now there were two.

"She changed," my grandmother says, looking at me with furrowed brows.

"She heard voices. Once she became angry with me out of the blue. She had one of those pens with a nib, which she jabbed into my back. That scared me. I told my mother, 'I don't dare sleep with her if she's doing things like that.'"

"So, my mother moved into our room with her instead, and I got Mum's place next to Dad. He didn't like that, but that's how it was."

In the summer of 1942, my grandmother and Kirsten were invited on a long summer holiday with family in Herning, Jutland. In one photo, Kirsten is standing tall and smiling in the garden, while my grandmother seems strangely anxious. They are 15 and 16 years old.

Kirsten og min farmor på besøg hos noget familie i Herning i 1942
Kirsten and my grandmother visiting family in Herning in 1942. Kirsten is on the left and my grandmother is on the right.

Autumn arrived, and the darkness increased. So, did the doctor's visits to Haslevej.

"She cried a lot," says my grandmother.

It would have been Christmas Day or Boxing Day, she says, in 1942. Kirsten was lying in the living room, staring at nothing, when my great-grandmother asked the other six children to take a bus to see some other family on Bornholm.

"Father and mother told me afterwards that when they were alone in the house with Kirsten, she sat up in bed and sort of gave up. 'I can't do it anymore,' she said. When we got home, she was gone."

There's a knock on the door of the room where we're sitting and someone opens it.

"Hello, Mrs. Søgaard," says a woman in white clogs.

She hands my grandmother a glass of thick red juice and a small shot glass with pills in it. They exchange a few words and laugh.

"Dinner will be at 5:30," the woman says before closing the door and leaving.

My grandmother turns her head towards me again. I can see she's getting tired.

"Did Kirsten go to the hospital?", I ask.

"Yes," says my grandmother.

Kirsten was 15 the first time she was hospitalised for her mental illness.

"The hospital on Bornholm. We went to visit her, Johs and I."

Their brother Johannes was closest in age to my grandmother and Kirsten. I remember him as being cheerful.

"We had been told she was in a shared room, but when we arrived, she wasn't. The staff said she had been on a ward with some other people, but that she had thrown a glass of water at a nurse. Which of course wasn't allowed."

"We were taken down to the basement, to a door with a round window in it. Through it we could see that she was lying down, strapped in with a belt. She was screaming and wanted to get out."

"Seeing that, Lise . . . We couldn't help her."

Seng med læderremme

It stirs me up when my grandmother tells me about Kirsten and the belt. My grandmother can't, but if I look in the right places I might be able to find out more about what happened to Kirsten while she was under the doctors' care.

When I say goodbye to my grandmother that afternoon, there's a sadness in her eyes that makes me feel guilty. Why did I upset her by bringing up the past like that?

I clutch the diary with my notes in it. The years and names of the psychiatric hospitals where Kirsten was admitted, which my grandmother tried to remember as best she could.

The guard at the entrance to the research room at the National Archives in Copenhagen looks at me from her chair in the glass cage. Her narrow lips are painted with a dark lipstick.

"You can't bring the pen," she says, reaching a flat hand underneath the glass that separates us.

She opens my calendar and shakes it. A brown photograph falls out. When all my things have been checked, the guard presses a button and opens a door for me.

A few weeks have passed since I visited my grandmother at the nursing home, and I've come to the National Archives for the first time to begin my investigation. It's completely silent. I go to another desk and show an archivist the email I've received. In a whisper, she tells me to fill in a piece of paper with my order number and wait in a seat.

I've been searching and searching on my computer for traces of Kirsten. I started by Googling her name, but all the Kirstens I found were alive. Then I remembered that my grandmother told me about "Oringe", the psychiatric hospital where Kirsten died. I'd unlocked a door.

2. “Cured”

I t's a peaceful Tuesday morning in the research room at the National Archives in Copenhagen, but my heart is pounding. I sit down in the seat I've been directed to. Next to me sits an older gentleman turning fragile sheets of paper in a large brown book. He periodically looks at me through the side of his glasses.

I'm here because I've been granted access to the medical records of my grandmother's younger sister, Kirsten, from her time at Oringe, the psychiatric hospital in Vordingborg in southern Zealand. That is where she died – in 1951, aged just 24. The archive material I'm waiting for will most likely tell me how that happened.

An older woman approaches with a file in her hand. She places the file on my desk. I open it carefully. Inside is . . . nothing. Just an empty cover.

"Obs. for Schizophrenia," it says in typewritten letters on the front.

Kirsten was first admitted to Oringe on 8th November 1945 and was discharged on 12th May 1946, I see. She was 18 at that point.

There is very little information on the cover: Under the heading "Physical Complications", dates for "Pentazol shock" (at six kroner) are listed. On the bottom corner, under "Discharge Status" it says:

"Cured."

Journalomslag

That seems a strange thing to write, I think. She was never cured of her illness. Rather the opposite.

At the top, someone has written:

"Back in on 26/6, 1949. Journal moved to no. 16735."

The thin piece of cardboard in my hands feels completely insignificant and yet very valuable at the same time. I open an email I received from someone at the archives. It says that, in addition to the empty cover, the National Archives found a note.

"Journals remaining at Oringe, women," the note says. Below is Kirsten's name and file number. Next to her date of death it says:

"Def. discharged."

Definitively discharged, yes. Yet this note must mean that there's more.

A small grey box of index cards has also arrived for me at the National Archives. It's part of the index of patients at the Filadelfia Centre, somewhere my grandmother said Kirsten was admitted several times. I flip through it, and find what I'm looking for under "A" for Abildtrup.

 Filadelfia set fra oven
Filadelfia from above. There's no psychiatric ward these days, but when Kirsten lived there, there was a large one.

Kirsten was hospitalised for the first time at Christmas in 1942, at Bornholm County Hospital. Five months later, at the age of 16, she was transferred to an independent psychiatric treatment centre in central Zealand, Filadelfia.

As you drive to Filadelfia, beech forests stretch across the road, creating a green canopy. The hospital is now mostly an epilepsy hospital. That was also the case when Kirsten was there, but it also had a large psychiatric ward.

On the index card I found at the National Archives, it says that Kirsten had a total of three admissions to Filadelfia during the 1940s, at eight kroner a day – paid for by Bornholm's Health Insurance Fund.

kartotekskort fra Dianalund

Altogether, Kirsten spent more than two years of her youth here. Meanwhile, my grandmother was at school. She was a girl scout, and in 1944 when she was 18, my great-grandmother sent her to Slagelse, near Filadelfia, to help out a cousin who was having a baby.

My grandmother remembers visiting Kirsten twice during that time.

"One of the times she was sort of . . . shut down. I couldn't reach her at all. They let me in, but she didn't say anything. She was just dark and sad," my grandmother remembers.

The second time, however, Kirsten seemed happier and wanted to go out.

"So, we ran down the country road holding hands. 'Let's run away,' I said to her. She laughed, but then she said, 'I have to go back.'"

Tavle fra Dianalund

In the grounds at Filadelfia, 85-year-old Bent Gaardbo waits for me next to a yellow building. He is a deacon and has worked here for 40 years. He retired in the 1990s and helped set up the centre's small museum. He is battling cancer in his back, but he still volunteers at the museum as much as he can.

Bent Gaardbo talks about a special "spirit" at Filadelfia.

"The treatment is probably similar to what they do in many other places, but there's always been this idea of treating people well. Speaking to them with respect. They've come here because they need help," he says.

Filadelfia was founded in 1897 by a private doctor, Adolph Sell. The story goes, says Bent Gaardbo, that the doctor walked past a man lying in the street in Copenhagen. Adolph Sell assumed the man was drunk, but saw that he was cramping in a strange way. So he took him home. It turned out that the man suffered from epilepsy.

Mindekirken vd Filadelfia
The Filadelfia Centre was built on Christian principles of work and worship, and has its own church.

The doctor set up Filadelfia based on the American model. A miniature village with its own church, chapel, vegetable plots and patient housing, spread across extensive grounds. From the very beginning the place was run with a Christian ethos, with a focus on worship and work, explains Bent Gaardbo.

He shows me the diary of an older female patient who was admitted to Filadelfia with depression in the early 1940s. The woman was from Rønne on Bornholm, just like Kirsten. I flip through it and quickly give up trying to find any trace of her.

Life at Filadelfia is described in an incredibly monotonous way: The woman wakes up, works and eats at set times. One day it's rye porridge, the next a vitamin-rich soup with carrots, and apricot purée for dessert. Then she goes to bed.

On Sundays she goes to church.

Many old items are displayed in the small museum. The founder's desk and a special epileptic bed. In one of the rooms is a glass case full of lots of shiny tools.

"Autopsy tools," says Bent Gaardbo.

"When people died here they were autopsied, just like they did at all the other hospitals back then."

At the top of the display is a real human skull, browned with age and with an iron frame around it. Next to it is a stainless-steel bone saw.

Bent Gaardbo says he can't help me with records of Kirsten's stay. However, he can show me where he thinks Kirsten may have lived when she was here.

We drive along the compound's narrow winding roads, me in my car, following Bent Gaardbo on his electric bike. We stop at a beautiful yellow villa.

"'Peaceful Home for Mentally Disturbed Women.' That's what it was called," says Bent Gaardbo.

The building from 1904 was designed by Martin Nyrop, the architect responsible for Copenhagen City Hall. It's now for sale.

"It's not in use anymore," says Bent Gaardbo.

Den gulmalede villa

In Kirsten's time, there would have been between 800 and 1,000 patients. Now there are probably about 200, he says. Psychiatry is not practised here at all anymore. The centre mainly treats epilepsy patients, but it also has a brain injury centre, a hospice and a neurophysiology department.

I walk around the house, through the garden to the porch, and imagine Kirsten standing there looking out at everything. At the leaves rustling in the wind, a bird jumping across fresh snow.

What was it like to live here? Boring, probably. But according to my grandmother, Kirsten was happy at Filadelfia, as happy as she could be:

"Then, when the doctors thought she was better, she went home to our parents. She went back to her piano lessons. I remember her teacher being impressed that she could just pick up where she'd left off after so many months," my grandmother told me.

"But then, Lise, it got worse and worse. They couldn't fix it at Filadelfia."

Kirsten in 1944, at the age of 17.

Among the photos of old soldier friends is a pile of love letters, all kept in a large cardboard box. The things in the box are my grandfather's, and we packed them up and put the box in our summerhouse when he died last year.

The love letters were written by my grandmother and grandfather. They met in Zealand while my grandfather was training to be a farmer in Eskilstrup and my grandmother was a maid at a house in Slagelse.

In the letters, my grandmother writes about Kirsten several times. She calls her "Kis", a nickname I've never heard her use.

My parents are at the summerhouse with us as I go through the letters. I read aloud to my mother a few passages of a letter my grandmother wrote in 1948:

"Apart from that, Kirsten is well. Better than I expected. She's lost a bit of weight, but it suits her. She's very easy to talk to, and reasonable too. We will cycle to Hasle together tomorrow afternoon. Tomorrow morning we're going to church."

My grandmother had mentioned her weight to me, too: that Kirsten gained weight because of the medication she was given. That her slender body changed.

In a letter from 1949, my grandmother longs for my grandfather. She's feeling forgetful – "I think it's fair to say that I'm lost in thoughts of marriage". Yet she also writes about her "worries".

My grandmother and grandfather. The photo was taken in the late 1940s when they were dating. They were married in 1949.

"Yesterday I spent a quiet day at home with mother and father. We went to a church service with pastor Viggo Nielsen. In the afternoon I cycled to the hospital to visit Kis. She's still lying there, waiting to be moved. She doesn't talk at all, even though she's awake, and it's strange to stand next to my sister and see her so lethargic. I don't remember whether I told you that there's no room at Filadelfia, and that she has to go to Oringe."

"Waiting to be moved" – so Kirsten must be at the hospital in Bornholm. I fold the letter and put it back in the envelope.

My mother tells me that my grandmother came around for dinner recently. She talked a lot about Kirsten. I say I've been feeling guilty about reopening a wound from the past, but my mother doesn't think I should feel bad about it.

"Who says you have to be happy all the time just because you're old?"

My mother has been a psychiatric nurse most of her working life. She asks how my "detective work" is going. I tell her about the visits to the National Archives and the missing journal. About how my image of Kirsten is a little unclear. Then she suddenly says:

"Maybe they kept her brain?"

My mother tells me that for many years, the brains of psychiatric patients were kept when they died and stored in a collection. She remembers that the brain collection was highlighted in the media a few years ago when it was moved from the psychiatric hospital in Risskov, Aarhus, as part of its merger with another hospital.

"There was something about them wanting to throw the brains away. I have no idea if it's still there," she says.

The next day I think about what she said. If they did take Kirsten's brain out when she died, is it out there somewhere?

3. Oringe

B einta Eriksen tilts her head and looks at me through glasses with a thin grey frame.

"If you have any bad thoughts, we should talk about them now," says the nurse.

The syringe sitting in a metal bowl on the windowsill is bigger than any other syringe I've seen in my life. Yet that's not what's making me feel dizzy. It's the square, radio-like box by the window.

Was that what killed Kirsten?

I am in a disused ward at the old psychiatric hospital in Vordingborg, popularly known as Oringe.

It was here that my grandmother's younger sister, Kirsten, was hospitalised on two occasions, first from 1945 to 1946, and then from 1949 until her death at the age of just 24 in 1951.

"Journals remaining at Oringe" was written above Kirsten's name on a photo of a scrap of paper I'd seen at the National Archives a few weeks earlier. When I Googled "Oringe", I found that the hospital is still there today, but on a much smaller scale. I also found a small museum about the history of the hospital. The museum is open one day a month for two hours. So I decided to call and make an appointment.

Beinta Eriksen answered the phone. She was a psychiatric nurse at Oringe for 34 years, but has now retired. Now she spends her time as a grandmother and as a volunteer manager at the small museum.

She told me that the old medical records that pre-dated CPR numbers had been moved to the National Archives.

"There's a cabinet too," she said.

"I think there's a cabinet with some of the old records. Let me check that before I see you."

The hospital is located on a peninsula outside the market town of Vordingborg, a large, beautiful, yellow-brick complex of buildings surrounded by a large green park. The park is surrounded by water on all sides.

Halvøen ved Vordingborg, Oringe, set fra oven
The peninsula in Vordingborg, Oringe, from above. There's still a psychiatric hospital on the site now, but on a much smaller scale than before.

Oringe was built in 1857 as a new psychiatric hospital for Zealand and its islands. Based on what was considered to be beneficial for sick people back then, it had to be located somewhere scenic and in peaceful surroundings, with plenty of access to fresh air. The Vordingborg peninsula was perfect. The architect Gottlieb Bindesbøll planned the prestigious project.

"It has been interpreted as trying to send these people far away, to a remote island. But there are other reasons that the hospital is where it is," says Beinta Eriksen when she greets me in her small office.

Beinta Eriksen
Beinta Eriksen, manager of the small psychiatric history museum at Oringe. She used to be a nurse here

The museum is on the top floor of one of the old hospital buildings. The rooms used to be a ward for male psychiatric patients.

Shaking sounds are coming from the floor below us. The ward downstairs is being renovated and will become a day centre for people with autism.

The psychiatric hospital has fewer than 70 beds today, but when Kirsten was admitted, there were around 800 or 900.

When Beinta Eriksen arrived as a nursing student in the 1970s, there were still many beds. She had patients who knew no other home than this, and who she saw buried here. During the 1970s and 1980s, there were significant shifts in thought about psychiatry. District psychiatry was introduced, promoting the importance of trying to help patients in their own homes. They should remain a part of society to the greatest extent possible, not be removed from it.

Beinta Eriksen spent many years driving around in her little car, visiting patients as a district nurse. But she also remembers a time when things were done very differently to today.

"I'm not trying to excuse anything that happened," says Beinta Eriksen sharply.

"But it was done with the best of intentions."

Beinta Eriksen

I found out by chance that the poet Tove Ditlevsen was hospitalised at Oringe at the same time as Kirsten.

In one of the last chapters of her 1971 memoir, Dependency, Tove Ditlevsen describes her stay. It began in the autumn of 1949 and continued until the spring of 1950. It is difficult to discern exactly why she was there, but she was in the midst of a severe drug addiction, and in the book, it seems like she was there for some kind of rehabilitation.

Omslag til bogen 'Gift' af Tove Ditlevsen

It begins with the poet waking up, disoriented.

"I am fastened to the bed by a leather belt that cuts around my waist and makes it difficult to turn around. They don't even take it off when they change the sheet under me, which is always covered in my waste," she writes.

"It's five minutes to three. At three o'clock they will come and give me the injection. How can five minutes feel like five years? The clock ticks in my ear in time with my racing heartbeat. Perhaps the clock is wrong, although they set it for me incessantly; perhaps they have forgotten me; perhaps they are busy with the other patients whose cries and shouts reach me from the unknown world outside the door of my room."

Shortly after the injection is administered, Dr Borberg turns up. According to Tove Ditlevsen, he is "a tall blonde man in his mid-thirties with a round, boyish face and wise, kind eyes."

Later in that chapter of Dependency, Tove Ditlevsen is freed from the belt and is allowed to go to the bathroom, supported by a nurse:

"Outside my room there was a large hall in which the beds were so close together that only a narrow passage separated them. Most of the patients were in belts, and some had large mittens on their hands. They stared at me with empty, glassy eyes."

Tove Ditlevsen is given an insulin treatment, which she receives every morning. "I felt a wild hunger, I shook and black dots flickered before my eyes," she writes.

Shortly afterwards, she begins to recover and is so comfortable on the closed ward that she doesn't want to be moved, but she is permitted to leave to go for walks "in the beautiful grounds, where I sometimes chatted to other patients who were out walking", she writes.

Perhaps Kirsten and Tove Ditlevsen met on the paths at Oringe?

Oringe park
The park around Oringe. Today, many of Vordingborg's citizens use this area for walks.

When I Googled Kirsten's name, I found only one page of interest: a scan of a tax and address book from Vordingborg from 1950. Very few male and female patients from Oringe are listed in it. Tove Ditlevsen is not listed in the address book, but "Miss Kirsten Abildtrup" is – along with "Ward Doctor Allan Borberg" and the chief physician at Oringe at the time, Vagn Askgaard, among others.

The chief physician's portrait is printed on one of the pages of another book I read, "The History of Psychiatry in Denmark". In one of its chapters, historian Jesper Vaczy Kragh describes how Vagn Askgaard advocated a number of experimental shock treatments at Oringe during his years as chief psychiatrist from 1937 to 1954.

The idea of a physical shock as a cure for psychological problems dates back a long way; as far as ancient Greece, according to some sources. In nineteenth-century Germany, cold water shock was used for psychiatric patients, and by the 1930s, medically administered shocks and the accompanying convulsions and unconsciousness were thought to have a positive effect on the mind.

Portræt af Vagn Askgaard
Vagn Askgaard, head physician at the Psychiatric Hospital in Vordingborg from 1937–1954. From 1941–1944 he was Chairman of the Danish Psychiatric Society.

Vagn Askgaard advocated a three-month course of six insulin shocks per week, given every morning at 7am.

Insulin is a hormone produced in the pancreas, and artificially produced insulin is vital for patients with diabetes. However, at Oringe in the 1940s and 1950s, it was used for something completely different.

Patients were injected with insulin and placed on their sides and secured in bed to stop them choking on their own saliva. They had violent, epileptic-like seizures. They entered a coma-like state, and remained like this until noon. Then they were woken up and given sugar water in a tube.

"Pentazol shock", it says on the cover of Kirsten's journal. Shocks induced by injecting heart medication, pentazol or cardiazol, were also commonly used in treatments at Oringe at the time.

The treatment was described by the head physician as "a safe method" and was mainly used on patients with schizophrenia. Yet despite Vagn Askgaard's assurances, the treatment also resulted in some deaths. In addition, the convulsions were so severe that about 10% of those who received shock treatment with heart medication suffered serious injuries, including broken vertebrae.

Treatment with the heart medication cardiazol at an American hospital in the 1930s. Patients suffered from very severe cramps as a result of the treatment.

Patients have described the treatment as extremely painful: One male patient in the late 1930s described it as being "burned by invisible fire". One doctor wrote in his memoirs that patients often feared the treatments.

"Often four of us had to quell the patient's resistance by force – only to spend the next few minutes soothing her agonising fear before the seizure was triggered."

The journal cover from Oringe implies that Kirsten received two courses of pentazol shocks lasting about three weeks each during her hospitalisation in 1945–1946. Given every day, without anaesthetic.

At the end of his chapter in "The History of Psychiatry in Denmark", Jesper Vaczy Kragh describes how self-confidence grew among psychiatrists in the 1940s.

This is reflected in a report on psychiatry from 1947, addressed to politicians at Christiansborg, the Danish parliament:

"While treatment at psychiatric hospitals used to involve placing patients who require lifelong care for incurable illnesses in environments specially adapted to their conditions for occupational therapy and recreation (i.e. a rather passive method of treatment), other more active forms of treatment have been introduced in recent times," it says.

"These include . . . shock treatment using insulin, cardiazol or electric shocks, and more recently, surgical interventions in the brain (leucotomy). Work is now under way across the world to find additional means of combating mental illness."

Leucotomy and lobotomy are the medical terms for a brain operation that was also popularly known as a "white cut" in Denmark.

According to my grandmother, Kirsten underwent that procedure.

The treatment was invented by a Portuguese doctor in the 1930s and involved, in short, severing the connection between the frontal lobe and the rest of the brain.

Doing so led to an immediate improvement in anxious, depressed, self-destructive and aggressive patients, it seemed. Maybe they could be cured by simply using a scalpel?

My grandmother remembers my great-grandmother and great-grandfather having to decide whether to allow the operation to go ahead, and the way they talked about it sounded as though there was a hope that Kirsten would get better. It was my great-grandmother who travelled to Rigshospitalet in Copenhagen with Kirsten, where the lobotomy was performed.

"My father wasn't strong enough for that, not at all," my grandmother says.

My grandmother and grandfather were married in 1949. My grandmother doesn't remember whether Kirsten had the brain surgery before or after the wedding. She does, however, remember the speech my great-grandfather gave:

"My father began his speech by saying something like: 'Inger, today we are celebrating because you are beginning your new life with your husband. We have also led Kirsten to the life she will lead. She will not experience life the same way you will.' I don't really remember crying at my wedding. But that made me weep."

Bryllupsbillede
My grandmother and grandfather at their wedding in 1949.

In a letter I find from the autumn of 1950, my great-grandmother and great-grandfather congratulate their daughter on her first wedding anniversary. My great-grandmother writes from Rønne that the sea is "rough and turbulent" again, as it was for the wedding, when many of the guests apparently "struggled" when crossing.

"It is a celebration we remember with joy. I almost wrote untempered joy, but that is not true, for there was a longing in all of us."

It almost sounds as though Kirsten had already died – but she didn't die until almost a year later.

From the library, I borrow another of Jesper Vaczy Kragh's books. In “Lobotomy Nation – The History of Psychosurgery and Psychiatry” published in Danish in 2010 and in English in 2021, he describes, with the help of records from Oringe, how Denmark was one of the countries that performed the most lobotomies relative to population size. Approximately 4,500 Danish patients received the now highly controversial treatment.

More than half of the patients at Oringe who were lobotomised in the 1940s and 1950s had schizophrenia, but a wide range of patients of all ages were referred for the operation: Some based on the justification that they were violent, disturbing or "unclean". Others because they were "insecure", "restless" or "distressed". Some were operated on after spending decades in psychiatric hospitals, while others had been hospitalised for just a few months.

 Behandling med hjertemedicinen cardiazol
Preparing to perform the lobotomy on a patient in a Swedish hospital in the 1940s. The photo was taken by celebrated Swedish photographer Lennart Nilsson.

Some patients underwent the operation without consent – neither from themselves nor their families. However, some were also operated on at the express wish of either themselves or their families, in the hope of living a normal life and being able to work afterwards.

The operations were performed at Rigshospitalet's neurosurgical department on Tagensvej in Copenhagen. They were done in several different ways. This is one of the methods:

The patient had their hair shaved off and local anaesthetic and adrenaline were administered to prevent bleeding. Two incisions were made in the skin above the skull, one from temple to temple, and one perpendicular to that, in the middle and towards the forehead. The skin was then pulled aside and the skull was exposed so that two holes the size of a coin could be drilled on either side of the midline. A thin scalpel was inserted, cutting across the "white matter" that contains the nerve pathways between the frontal lobes and the centres of the midbrain. The "white cut" was named after this matter.

Illustration showing how a lobotomy was performed at the Department of Neurosurgery, Rigshospitalet, where Kirsten was operated on. The illustration is from 1957.

My grandmother remembers my great-grandmother being thrilled shortly after Kirsten had her brain surgery.

"My mother told me that Kirsten seemed normal to her after the surgery. It seemed as if the old Kirsten was back. However, she changed rapidly. She became much worse than she had been before."

The lobotomy wasn't the miracle cure that they had hoped for. The mortality rate was high: officially around 6%, but it was probably much higher. Many patients subsequently suffered from epileptic seizures. Many were not cured at all, but became significantly worse than they had been. Some became even more aggressive and violent; some started urinating and defecating in their trousers.

Even before Kirsten died, there was strong criticism of the treatment in medical circles, but Denmark was one of the countries that stuck to the treatment most stubbornly: While it was banned in the Soviet Union in the 1950s, lobotomies were performed in Denmark until the 1980s.

It wasn't until 1982 that the operations were discontinued, after the Parliamentary Ombudsman pressured a group of psychiatrists to conduct a study that showed that 37% of those operated on deteriorated after the procedure.

During her years as a nursing student at Oringe, Beinta Eriksen helped patients who had returned from Rigshospitalet after being lobotomised. She nursed their wounds and made sure they didn't suddenly become sick.

"The idea was to supress patients' impulses. But they became zombie-like. Inactive. Lethargic. Everything we usually want for people, that was taken away from them," she says.

She shows me around the museum while she talks. One of the rooms houses portraits of all the chief physicians over the years, including one of Vagn Askgaard. We're standing by an old bed with brown leather belts when I spot something by the window that makes me start.

I walk over to the white box that looks like a radio. A small sign says "do not touch the exhibits", but Beinta Eriksen takes hold of the two black handles connected to the box and puts them to her temple.

"This is what they did," she says.

The "radio" is an old electroshock device. In Kirsten's time, treatments were carried out on the wards, so shocks were given in front of all the other patients. The electroshock device was wheeled around on a small table from one patient to another. They were not anaesthetised beforehand.

I ask when the device is from. Beinta Eriksen says: "Around the 1940s", and tells me that the device was in use at the hospital well into the 1950s. I have trouble holding on to the pen I'm using to take notes.

Kirsten died at Oringe on 23rd August 1951. My grandmother thinks it happened during an electroshock treatment, but she was never given details of her death. She remembers, however, that Kirsten was afraid of the shocks.

"She was so scared when she had to have it," my grandmother said.

Beinta Eriksen gives me a look that is at both strong and caring when I tell her this. Then she says:

“I'm not a doctor. I don't know what could have happened. But you don't just die from electroshock. That happened very, very rarely. In fact, I've only heard of it happening with older patients."

"She was lobotomised, right?"

I nod.

"Yes, she was'."

"The electroshock makes you have convulsions, and then your blood pressure goes through the roof. She could have had a brain haemorrhage," says Beinta Eriksen.

We walk outside into the sun and say goodbye in the parking lot. Beinta Eriksen wanted to show me the chapel and the autopsy room, but someone has changed the lock and we can't get in. We agree that I will come back another day.

What about the journal? She checked with the person in charge at the hospital and has disappointing news. The cabinet she remembered was emptied long ago. All pre-CPR records were transferred to the National Archives in 2012, where I have already looked with no success.

"So we have nothing left here," she says, shaking her head.

Later, I write an email to Jesper Vaczy Kragh. I explain Kirsten's story to him. Can it be true that all official traces of Kirsten in the system have just disappeared? Will it be impossible to find out how she died?

The same evening, the psychiatric historian replies:

"I think I actually remember that case," he says.

4. The shock

M arie Nørby Madsen shivers a little in her light hoodie. It's raining lightly in Landbohøjskolens Garden in Frederiksberg, where we sit on a bench set back into some evergreen bushes.

"Did your grandmother's sister die from electroshocks?" she asks.

"We don't know for sure, but yes, probably," I say.

"Hmm," she says.

"I had it about 15 times while I was hospitalised."

"The problem with me was that it was hard to find any medication that worked. I was given so many different things. I was given anti-anxiety, mood-stabilising and anti-psychotic medication. Something to help me sleep. After I had been in hospital for six months, the doctors said: Now we're going to try electroshock therapy."

"I don't know if that's what's helped me," she says, hesitating a little.

"One treatment I had still gives me anxiety."

Marie Nørby Madsen

Marie Nørby Madsen is 31 years old and has schizotypy. It's a newer diagnosis than schizophrenia, and manifests differently in different people. However, it is like schizophrenia in that the symptoms of psychosis are similar.

I found Marie Nørby Madsen through an acquaintance who was admitted to a psychiatric ward some years ago. We meet because I want to know more about what it was like to be Kirsten.

It has now been many months since I first spoke to my grandmother about her younger sister who had schizophrenia, and subsequently began to look for traces of her in "the system". So far, I've found very little. I've also come to the conclusion that if I do find anything, it will only be the doctors' words. What would Kirsten herself say if I could ask her?

When I told my grandmother that I was going to look for Kirsten's medical records, she said sharply:

"Do you think you'll find the truth?"

The box of old photographs and pictures in our summerhouse contained only one letter from Kirsten.

It's a letter she sent to my grandmother in 1946. In the letter, Kirsten seems like a happy young woman. She writes about her brothers, about the family in Jutland, about how she and a cousin looked after a two-year-old while the child's parents attended a silver wedding anniversary. Things didn't go according to plan, and the child was still awake when the parents got home from the party.

"Take care, dear sister," ends the letter, which is fastened on the back by a sticker of the Danish flag.

Nothing in Kirsten's letter gives the impression of someone who has a serious mental illness. My grandmother has told me that Kirsten was well for long periods, she returned to her parents in Rønne, had piano lessons and was her normal self. Until she relapsed and had to be hospitalised.

When I visited the old psychiatric hospital at Oringe, I asked the museum director Beinta Eriksen about the nature of schizophrenia.

"I don't know what it is," she said at first, shaking her head.

She stressed that there are certain characteristics of the condition and that the diagnosis is relatively clear-cut, but also said that in her work as a nurse, she met so many different patients with schizophrenia that she finds it difficult to identify common features.

"It manifests differently in each person. What frightens me doesn't frighten you, and vice versa."

She told me what she had learned: that people with schizophrenia can often have difficulty deciphering others' cues in social settings. They may have obsessions or strong beliefs that don't match with reality, hear voices and see things – threats or connections – that aren't there.

"Then there's the depression and anxiety. It's very strong in many of these patients," she said.

Kirsten Abildtrup about 14–15 years old. There are few pictures of her from the following years when she was hospitalised.

Marie Nørby Madsen smiles when I show her a picture of Kirsten and tell her what I know: that she was the family's clever and thoughtful daughter, who didn't make friends easily.

"That reminds me of me. I was a child who worked best in a very safe environment, and I cried a lot when I had to be dropped off at nursery. I thought about things a lot, like what was the purpose of my life here on earth. When I was diagnosed, my mother said many things fell into place for her. When she read about schizotypy, she thought, 'that's Marie!'"

Marie Nørby Madsen became ill in her early 20s. At the time, she was studying at Copenhagen Business School, getting good grades and living in a nice flat in Østerbro.

"But I lived this double life, where half the time I was a student who was on top of everything and getting good grades, and the other half I just felt really, really bad," she says.

When Marie Nørby Madsen was at her most psychotic, for example, she felt that her empty flat was full of people who wanted to hurt her. She was only safe from their gazes when she sat in a certain place on her sofa.

On her bike, she would speed through the traffic lights in Copenhagen just before they turned red in order to lose her pursuers. She would press her back against walls, feeling it was the only thing she could do to keep them from falling on her. She called her mother in the middle of the night because she thought a man was standing in her doorway.

"I couldn't take public transport because I felt my thoughts might fly out of my head for others to see," she says.

However, it's the depression that she remembers as being worst.

"I had some very low lows."

Marie Nørby Madsen kept a diary of her feelings during the period when she was ill.

Marie Nørby Madsen was admitted to Bispebjerg Hospital in Copenhagen when she was 23. Her hospitalisation lasted almost a year. Electroshock was brought up when she didn't seem to be getting significantly better from the medication she was on.

"I had heard of it, but I didn't realise it was still in use. I had an idea of what it was like in the old days, maybe from a film."

I ask what actually happened in practice.

"You have to fast from 10pm in the evening. Then you wake up in the morning and wait for a porter to take you down for treatment by transporting your hospital bed. I always thought that was a bit weird, so I insisted on sitting up in my bed."

"The treatments take place in the basement. You're wheeled down a corridor into the basement. There are pipes for heating and water on the ceiling. You go into a room without any windows and the bed is secured in position. On the walls there are pictures of outdoor scenery and there's some music playing, which I think is supposed to be soothing."

"It seems like the smallest room in the world, full of people. There are maybe eight people around you. One takes your blood pressure, one measures your heart rate, one attaches electrodes to your temple. There are maybe six or eight electrodes in total, and you also have them on your chest and ankles. They apply them with this gel that makes you all sticky afterwards."

"The doctors ask you lots of questions, like your name and your social security number. Then the anaesthetist comes and gives you anaesthetic in a syringe and says, 'think of something nice.' Then you fall asleep."

Marie Nørby Madsen takes a deep breath.

"You wake up in a completely different place. The first time, I had to throw up. Your jaws are completely tense. You're a bit confused, and red from the electrodes. They aren't burns, but they feel a bit like that."

Marie Nørby Madsen received 15 electroshock treatments during her hospitalisation.

"I started my treatment at the same time as another patient who only had three or four treatments. She felt that she was getting much better quickly. But it wasn't like that for me. After 15 treatments, they decided to stop because it wasn't having any effect."

One of the last times, Marie Nørby Madsen received the electroshock treatment, something went wrong with the anaesthetic.

"I was given the anaesthetic and I felt my body relax, but my head wasn't asleep. I could feel them putting the bite block in my mouth. They usually wait until you're sedated to do that. One of them said, 'we're ready.' It was only then that I lost consciousness."

"It was like one of those dreams where something is happening that you don't want to happen, but you can't shout. I couldn't shout, 'wait, wait, wait!'"

The electroshock treatments were stopped, partly because Marie Nørby Madsen developed anxiety about sedation. She finds it difficult to judge whether any good came of it. Then she went back on some medication that hadn't had any effect before the electroshocks. This time it started to work.

"In a few weeks, maybe a month, I became a completely different person and suddenly I felt some hope."

At the same time, she was undergoing a good course of cognitive therapy with a psychologist. She was discharged, but later the depression hit her again.

"I guess I was pretty stuck with the idea of myself as a patient, and I had a hard time seeing any point in my life if I wasn't going to be that anymore."

Marie's story also includes a suicide attempt. One night while half-asleep, she went to the bathroom, emptied all her pill jars, and got out a suicide note she had kept in a drawer. It was her mother who found her after trying to phone countless times.

"I was told that the police collected all the jars, and that some of them were about half empty. I had to have my stomach pumped, and I had a short stay on a cardiac ward afterwards. My heart was not sound."

Some time later, something seemed to brighten. Marie Nørby Madsen ended her course of treatment. Now she sees a psychiatrist who can write prescriptions for the antidepressants she takes.

"If you ask me today, I'm well," she says, adding that she probably has a different concept of "well" than some other people.

"I can live a meaningful life with the diagnosis I have. I'm also very aware of how much pressure I can handle. For example, I know that one of the things I need is alone time. So I have to set up my life so that I can have that."

One of the things she is most proud of is becoming a mother. She had her daughter, who is now two and a half years old, by herself with the help of a donor, and it's going well. Sometimes she feels too much pressure, but she is careful and asks for help.

Marie Nørby Madsen with her daughter Esther.

Her parents also help out when she has trouble making it to pick up her daughter from nursery, because Marie Nørby Madsen has started working almost full-time at the psychiatric ward at Frederiksberg Hospital. She's a recovery mentor, helping others with mental illness. Her parents and brother have also received help to cope with her illness in the form of psychological counselling and support groups for relatives.

"My illness has been difficult for my brother. I think he needed my mother quite a lot, and we have a good relationship today, but we were very far apart during the times when I felt worst," she says.

I think to myself that that sounds almost exactly like my grandmother and Kirsten. Imagine if someone had talked to my grandmother and great-grandmother about it at the time and helped them?

"One of the best things I've done is involve my family. That makes a big difference to people's ability to recover. The illness is never just about the individual, is it?"

To overcome the anxiety caused by the electroshocks, Marie Nørby Madsen recently attended an electroshock treatment given to a female patient. It came about through her work. She watched the patient receive the anaesthetic, have the bite block inserted, and cramp up before her muscles relaxed.

"It was actually good for me. The whole thing was over in a few seconds. Afterwards I could tell her that it had actually been quite peaceful."

She smiles and looks out across the park, where couples are pushing prams around. A toddler on a balance bicycle shoots past on the path in front of us.

I tell Marie Nørby Madsen that I've read a bit about the causes of schizophrenia, but that I haven't learned much. It's something to do with some neurotransmitters in the brain, but there's also a "genetic component" that may only be triggered by "environmental stress". I ask her what she thinks: is there something in her brain that hasn't been put together correctly?

"I like to think of it this way," she says.

"We know that the brain has a certain capacity, and that my brain might have a bit too much capacity in some areas. Sometimes that can spill over into psychosis. The brain just understanding that bit more."

"I haven't met a single person in psychiatry who isn't intelligent. There are so many people who are creative and deeply intelligent in their way of thinking about the world. Sometimes that intelligence reaches a level where you can't be in the world. That's when you get become ill."

One of the drawings Marie did when she was ill.

A few weeks later, I finally make another appointment with museum director Beinta Eriksen at the former Oringe psychiatric hospital. We meet at the museum and walk over to the cemetery that is connected to the hospital.

The cemetery itself is just a lawn. Around 1,000 people are buried here, but their graves are hidden because they were marked with wooden crosses that have now rotted away. At the highest point of the cemetery, some of the chief physicians are buried under large granite stones.

In the chapel, rows of chairs have been placed in front of a small altar. It smells damp, like an unheated church. Beinta Eriksen unlocks the door and moves over towards the autopsy room to let us in. Among all the old psychiatric hospitals that have been preserved, this room is the only one of its kind left.

The sun shines through the windows, warm and yellow, brightening up the cold steel table in the middle of the room.

Cobwebs hang from the ceiling. Beinta Eriksen apologises.

"This place needs a good clean, but we're the ones who have to do it. And it's not a room you want to spend too much time in, is it?"

This is where patients at Oringe were autopsied when they died. So many people have been on the autopsy table here. Kirsten was here.

At one end of the steel table is a drain that leads down to the terrazzo floor, drawing a river of white limescale towards a grate. At the other end is a wooden block, painted white and with an indent to fit a human head. There are small but long saw marks in it.

On another table behind the autopsy table are some brown boxes. Beinta Eriksen unlocks one of them with a small key and shows me a white plastic bucket before closing the lid again. PIX (hjerneforsendelse skilt)

"Brain shipment", reads the sign hanging beside the key.

5. Bucket number 738

T hursday is brain collection day for pathologist Martin Wirenfeldt Nielsen.

It's not every Thursday that he goes all the way down to the basement underneath the University of Southern Denmark in Odense, but he does so quite often. He might need to check something. Some buckets might need to be moved back after being taken out of the row, or a drawer in a filing cabinet might be stuck.

Sometimes he needs to discuss something with Mie Kristine Just Pedersen, a PhD student at Aarhus University. She's actually here today, down in the basement. She sits at a steel table at the very back of the room, studying microscope images on her laptop. All alone, with 9,479 well-preserved human brains.

Now the heavy door to the hallway opens: a journalist, a photographer and a pathologist walk in.

This is the third time I've visited pathologist and brain collection manager Martin Wirenfeldt Nielsen at the University in Odense in my quest to find out why and how my grandmother's sister Kirsten died at the age of just 24 in 1951. The first time we met was just after my mother, a nurse, happened to mention that "they might have kept Kirsten's brain".

Patologen og
          hjernesamlingsbestyreren Martin Wirenfeldt Nielsen
Martin Wirenfeldt Nielsen is a doctor and associate professor of clinical pathology at the University of Southern Denmark. He is responsible for the collection of brains.

I wasn't allowed to visit the collection, so we sat and talked in an atrium or on a sofa at the grey concrete university the first few times.

"It's very likely that it's there," said Martin Wirenfeldt Nielsen, when I asked whether Kirsten's brain was under our feet, down in the basement.

"There are a lot of brains from patients with schizophrenia."

However, he feared it would be difficult to confirm. We left the question for a while, and Martin Wirenfeldt Nielsen started to talk.

The story behind the brain collection begins in 1945, during the last years of the Second World War and the German occupation of Denmark. A new chief physician, Erik Strömgren, was hired at the psychiatric hospital in Risskov near Aarhus. Along with an Icelandic researcher from Aarhus University Hospital, Lárus Einarson, he had an idea: to collect human brains.

Icelandic anatomy professor Lárus Einarson. Photo: Aarhus University

The Brain Pathology Institute was founded in 1945 by Strömgren and Einarson, and in a room underneath the hospital in Risskov, the first bucket containing a human brain was soon placed on a dark brown wooden shelf. Then another, and another. Before long, the two scientists had collected hundreds of human brains. They came from all the psychiatric hospitals across the country, and therefore from many, many different patients. People with dementia, depression, schizophrenia, as well as people with illnesses of a more physical nature, such as Parkinson's disease. Brains were collected until 1982 and the collection became the largest of its kind in the world, with 9,479 brains.

This kind of project would not have been possible today, Martin Wirenfeldt Nielsen tells me.

"Doctors perform far, far fewer autopsies than we used to. Partly because the cause of death is often quite clear. We now have scanning techniques that we didn't have back then, and these give us a much better insight into the body."

"However, it is also partly due to a radical change in thinking about individual rights."

"In the old days, autopsies were accepted as a natural part of dying in a hospital. Today, we think of the individual as inviolable. We want to determine everything, or at least most, of what happens to us. At that time, neither the patients themselves nor their relatives had to be asked for permission before an autopsy. It was just done," he said.

While autopsies today are often done for the sake of the relatives – typically if there is uncertainty about the cause of death – when Kirsten died, they were done for other reasons.

"They had a completely different view regarding death than we have today, and that's the whole foundation of the brain collection. An autopsy wasn't performed for the sake of the relatives, but for the doctors. So that they could learn."

The brain collection wasn't just for science geeks, though. It was also an attempt to solve a problem that was in everyone's interest to solve, Martin Wirenfeldt Nielsen stresses.

"There was a group of citizens in Denmark who it was difficult to help and who had illnesses with origins nobody really understood. There was a sense of desperation about mental illness that had been there for a long time."

"Something happened to people that just wasn't understood. That's one of the reasons that they started taking their brains out and examining them. The idea behind the brain collection was that the brains were saved so that they could be examined again at a later date, when we had more knowledge about the illnesses and new and better scientific techniques."

I asked Martin Wirenfeldt Nielsen how the brains were actually removed. He told me that it had to be done within the first 24 hours of death.

"Now we can only perform an autopsy at the time of what we call late and certain signs of death: death spots, rigor mortis or putrefaction. But we know that when the brains were removed, sometimes that happened no more than six hours after death."

If Kirsten's brain had been taken out in the autopsy room at Oringe, she would hardly have been cold before it happened. Martin Wirenfeldt Nielsen explains how to take out a brain.

"First, you cut open the skin. You do it from the back, so that it can be folded over to the forehead. Then you take a saw and cut off the top of the skull, the calvaria."

He touches an index finger behind his right ear where the saw would be inserted, runs it around the back of his head, up to his left ear, around the front, and ends the circle back at his right ear.

Then he holds out his hands as if grasping an invisible round shape.

Kranie
Skull with a severed calvaria and tools used for autopsies.

"Then you can lift the brain out. It has a consistency a bit like a pudding. It's very soft. You will be able to see if there are any obvious signs of the cause of death. A tumour or a major haemorrhage, for example."

"Then you put the skull cap back on, fold the skin back over and sew it up."

Kasser

Lying on another table behind the autopsy table in a ward of the psychiatric hospital in Oringe were some brown boxes with white buckets inside. These were the original "brain boxes", where the soft brains were placed the moment they were removed. The bucket contained a fixing fluid that made it easier to cut the brains into slices.

The boxes were shipped to Risskov by ordinary mail. They were usually kept there for a few weeks before the brains were removed, cut into slices and placed in the final solution of formaldehyde. Areas of particular interest were coated in paraffin, placed on small wooden blocks and stored separately.

More and more brains were added. Especially in the 1950s and 1960s, many were collected. They only stopped being collected in 1982 for financial reasons.

Everything was recorded in what Martin Wirenfeldt Nielsen calls "the black books"; a kind of protocol kept by researchers at the Brain Pathology Institute.

My mother mentioned that she had read in the news a few years ago that the collection had "almost been thrown out". That's basically true, says Martin Wirenfeldt Nielsen.

When the psychiatric hospital in Risskov closed in 2017, there was a debate about the relevance of the collection.

It had actually been going on for some years. Kristeligt Dagblad, among others, has previously contributed to the debate on whether the brains deserve a proper burial.

The brain collection debate was featured on the front of Kristeligt Dagblad in December 2005. The Minister of Health at the time, Lars Løkke Rasmussen, and the Ethics Council later became involved.

How ethical is it to keep human remains in this way? During the first decades of the collection's existence, the brains were taken without consent from relatives, and the brains' owners probably did not imagine that part of their body would be preserved in this way.

The matter has been raised several times to the Ethics Council in Denmark, where the concerns of relatives have been discussed at length. Should the relatives of the people whose brains were taken out be traced? Should they be told? In the end, the Council decided that it would be wrong to launch a big operation. One aspect of the decision was that there were fewer and fewer relatives left – the vast majority would now be well over 100 years old.

However, it wasn't so much the ethical concerns that were discussed in 2017 when the collection was last "at risk", but practical considerations and finances, says Martin Wirenfeldt Nielsen. Finally, after an appeal from brain researchers in Denmark and abroad, it was decided that the brain collection should be retained, but in connection with Odense University Hospital. This is why they ended up here, in the basement of the University of Southern Denmark.

"The arguments against keeping the collection were very much about the resources. It's an expensive collection to maintain, but it's also important. We are still struggling to find enough resources to do it justice. One thing I spend the most time on is writing funding applications," he explains.

That reveals something about the prioritizing of mental illness research today, he adds.

"Imagine how progressive they actually were back then! The brain collection was a national prestigious project that was covered in the media. A high-profile thing, a bit like current campaigns about cancer and heart disease. They knew that mental illness was on people's minds. They knew that the solution had to be found in the brain. The fact that they took the time to study the brain at all is very progressive compared to the attention we give mental illness today."

You can't immediately tell the difference between the brain of a patient with schizophrenia and one without it, he explains.

"The brain is complex. We don't really know much about how it works. We know that one brain cell can send electrical signals to another, and this is one of the things that has been researched in relation to schizophrenia. They think that there is something different about the way in which the signals emitted by the brain work. However, there's a long way to go from that to understanding how it can affect a person's thoughts and feelings the way it does."

"The people who started the brain collection thought, 'we don't know much right now, but maybe in 50 years we'll see something different to what we see now.' I think that humility is pretty amazing. And we can actually see much more today. To give just a few examples, we have very advanced scanning techniques that allow us to examine certain areas of the brain. We also now have a much better opportunity to study things like genetics, the heredity of illnesses, e.g. by cleaning up DNA from the brains."

Icelandic researcher Lárus Einarsson teaches at Aarhus University. In 1945, he was one of the founders of the brain collection.

Martin Wirenfeldt Nielsen reiterated that it was very likely that Kirsten's brain was in the collection, given her history. He wasn't able to confirm it, though, because the various parts of the collection haven't yet been registered and made digitally searchable.

"Many of the brains have a "brain journal" attached to them. For example, being able to search for other information about the brain: e.g. age, gender, whether the person had other illnesses – that takes a huge amount of work."

Then he remembered the "black books", the protocols from the Brain Pathology Institute, which are now administered by the National Archives in Viborg.

"Have you tried looking into them? If her brain was taken out, she'll be there. You'll be able to find the number of the bucket her brain is in," he says.

I ask whether Kirsten's brain, if it is there, could be used for research. Martin Wirenfeldt Nielsen tells me that they are in the process of finding out whether the older brains are in good enough condition to be used, but that he strongly expects they are.

"We know she had schizophrenia. For example, we could look at her DNA to see whether there are genetic changes in her genome that can be found in other patients. Another thing is that the older brains in the collection, like hers, have never had any influence from psychotropic drugs. We know that medication changes the brain if you take it for a long time. That's where the older brains in the collection are unique," he says.

I went home and sent an application to the National Archives. A few weeks later, I received a reply.

"738", it said in the left column, and beside it:

"Kirsten Abildtrup."

Hjernesamlingen

"I went to check last week, and the bucket is there," says Martin Wirenfeldt Nielsen, walking along the filing cabinets.

"400, 600, here we go."

I follow him. And then here I am, standing in front of it. A white plastic bucket with Kirsten's brain inside it and the number 738 on the outside. I ask if we can open it, but Martin Wirenfeldt Nielsen shakes his head.

"If we had a fume hood down here, we might be able to. That's one of the things we're working on."

He explains that inside the large white bucket is a smaller yellowish bucket, which Kirsten's brain was originally placed in. The additional white buckets are a necessity, as the formaldehyde is starting to penetrate the old plastic.

"It's strong stuff. Just opening the outer bucket can make you dizzy."

"You can take it out though," says Martin Wirenfeldt Nielsen.

I gently take hold of the bucket and place it on the floor. It feels no different to a bucket of paint I brought in from the workshop at home the other day. "Human tissue in 4% formaldehyde solution," it says on the lid.

Martin Wirenfeldt Nielsen walks a bit further away. That's when I suddenly feel like hugging the bucket. Stroking it and saying that it's going to be okay.

I slide my fingers over the dust on the lid and wrap my palms around the white plastic. In a strange way, the bucket feels like part of me, my matter. I pick it up and put it back in place between the other buckets.

I show Martin Wirenfeldt Nielsen the page from "the black books" that I received from the National Archives. I ask him whether he can tell from that how she died.

"'Seq. lobotomiae', it says. "That just means that she had a lobotomy," he says.

"Then it says 'status epileptica', which means an epileptic seizure, probably several."

"'Stasis et oedema acuta cerebri.' That means that when they examined the brain, they found a build-up of blood in the blood vessels and some kind of accumulation of fluid."

"If I were to guess, I'd say she had a seizure that caused her death. And you can see the consequences of that in the brain."

The pathologist is hurrying now; he has a meeting at the hospital and is already late. At the back of the room, the photographer talks to the PhD student Mie Kristine Just Pedersen.

Martin Wirenfeldt Nielsen makes arrangements with her to let us out. She'll be here a while anyway.

"As long as you promise not to cause any trouble," he says and leaves.

Mie Kristine Just Pedersen is a neurobiologist working on a PhD project on Parkinson's disease. She has to be in the basement because it's the brain records, which are in archive boxes down here, that she uses to see which brains she can include in her research.

The tissue Mie Kristine Just Pedersen uses consists of small pieces of brain that have been taken from patients with Parkinson's and coated in paraffin. On her smartphone, she shows me how they easily coat the brain fragments in fresh paraffin, and she shows me a holder that is suitable for modern laboratory work, on which very thin sections of brain tissue can be cut. The tissue is prepared for microscopy analysis and examined on a computer.

Brain tissue cut into ultra-thin slices and placed on a glass plate, where it is drenched with chemicals to induce a colour reaction. A microscope image clearly shows the signs of disease in the brain: the dark brown lumps and lines indicate the presence of a particular protein, alpha-synuclein, which is linked to Parkinson's. Microscopy: Kristina Bang Christensen

On her laptop, she shows me how certain areas of the tissue light up. She's looking for a specific protein that is thought to be linked to Parkinson's disease.

She is excited about the collection, and already has a follow-up research project in mind. It will involve some of the older brains in the collection; those that have been lobotomised. She wants to investigate a theory that the protein can "migrate" from one part of the brain to another, using brains in which the connection between the front and back has been severed.

Comparing these to brains that have not been lobotomised, she can – maybe – support the "migration theory". She says that another PhD student is about to start a research project on schizophrenia using the brain collection.

The photographer and I are heading for the exit when Mie Kristine Just Pedersen suddenly calls us from the back of the room:

"It was number 738 you said, wasn't it?"

She comes out into the corridor with a brown paper bag in her hands. She removes the little paperclip and tips out seven or eight small brownish-yellow blocks onto her steel table.

"There's a bit more of her down here," she says, smiling as we turn the blocks over in our hands.

She explains that the "special sections" taken from the brains and coated in paraffin can vary.

On each wooden block, Kirsten's number is printed alongside the part of the brain from which the tissue was taken. One says "thalamus", another says "polus front". The largest block says "hippocampus". Mie Kristine Just Pedersen points to a small brownish peanut-shaped spot in the brain tissue from the hippocampus.

"Right there," she says.

"That's where the memories are. Or that's where they're processed."

Hippocampus from Kirsten's brain. This part of the brain is essential for storing information; for memory.

When we get back outside, the sunlight hits our eyes. I think the time has come for me to talk to my grandmother again. How should I tell her what I've found?

6. Something you should know

T he door to Grandma's nursing home faces onto the garden. It's open. It has been more than a year since we first talked about her younger sister, Kirsten, who died at the age of 24. I'm visiting her now because I've decided to tell her what I've found: That Kirsten's brain still exists. That I've held it in my hands.

I've been practising the conversation in my head for days:

"Grandma, there's something I have to tell you." "Grandma, this is going to be uncomfortable." "Grandma, don't get scared."

I've discussed my worries with my Norwegian friend, who is a lawyer and writer. I think it seems like a bit of a leap to go from talking about memories of Kirsten to talking about her actual physical brain. What have I got myself into?

"You could also see it as telling your grandmother something she should know," was my friend's response.

"If she shouldn’t get that knowledge, who should?"

"Hi darling," my grandmother says as I knock on the window and poke my head inside.

I haven't been able to find an answer to exactly what happened when Kirsten died, but I have learned a lot.

Being mentally ill in the 1940s was no laughing matter. The doctors did things to Kirsten that we'd find horrific today. Yet I've also learned that it's too black-and-white to blame "the evil doctors". They did what they did with the best of intentions.

While psychiatry today is certainly not all rosy, two things seem to have improved markedly: attention to family members and helping patients become a meaningful part of society, with an acceptance of their illness.

Today, it's not normal for a person to die in "the system" the way that Kirsten did. The closest I've come to a conclusion, or to anyone taking responsibility for Kirsten's death, is something Jesper Vaczy Kragh told me.

Jesper Vaczy Kragh

He has written several books on the history of psychiatry and is a senior researcher at the University of Copenhagen's Centre for Humanistic Health Research. He put me on the trail of a state directorate that once controlled psychiatric hospitals. It was called The Directorate of State Hospitals.

The psychiatric historian told me that accidental deaths in hospitals were recorded. The cases were filed under the code "S8". "S" stands for suicide and accidents, he said.

At the National Archives, an archivist helped me to find an index of the cases, arranged by surname. I was given a small, rectangular box of cards, which I went through. Under A I found "Abildtrup, Kirsten".

Under her name, some numbers and codes told me what I think I already knew:

"Patient died 23rd Aug 1951. Shock treatment"

Kartotekskort

Under this information, someone had drawn a wavy line.

I decided to visit Jesper Vaczy Kragh at the University of Copenhagen. We found a library room where we could talk in peace.

He remembered Kirsten well from the journals he had researched.

"She died very young," he says.

I open my computer and show him the photo of what I found in the "black books", and he goes through the doctors' notes.

"My understanding is that she died from the effects of the lobotomy," he says.

So the lobotomy did, in fact, kill her.

"I've seen the same thing in several of the other lobotomised patients from Oringe. After the operation, scar tissue formed inside the brain, causing them to have very severe epileptic seizures. Some of them didn't survive."

He explains that he got hold of Kirsten's file, which has now disappeared, in connection with the book that he wrote in 2010 about lobotomies, and he made notes for a database. However, he can't talk about it, as permission for him to see the records at the time was given for research purposes. He can only speak in general terms.

"It can be hard for relatives to read the records, and you have to be aware that doctors sometimes wrote quite derogatory things about patients. Yet they are also important life stories. A journal like your grandmother's sister's would be about this thick," he says, measuring 10 centimetres with his fingers.

I already thought it was bad that the records from Oringe had disappeared, Kirsten's included. Then Jesper Vaczy Kragh says something that makes it even worse.

"They also contained all the patients' letters. If your grandmother's sister received letters from the family, they will be there. Sometimes they might have been confiscated if it was thought that patients would not benefit from reading them. But sometimes they got to see them too."

My grandmother told me that she and Kirsten wrote to each other, even during Kirsten's last stay at Oringe.

"I remember receiving a letter congratulating us on our little girl," she said.

Brev fra kirsten

In the summer of 1951, my grandmother and grandfather moved to a farm near Kjellerup in central Jutland. Money was tight. "We didn't have salt for an egg," as my grandmother says.

My grandmother remembers standing with my aunt in her arms as a taxi rolled into the courtyard. In the back seat were my great-grandparents.

She had wondered why. They were visiting their children in Jutland and had just been to see my grandmother and grandfather the day before and had actually gone by train to visit one of the older brothers, Johannes, in Silkeborg. They had planned a visit to Oringe on the way home. It was the first time my great-grandfather was going to visit Kirsten there.

"They told me that while staying with Johs, they had received a call from Oringe telling them that Kirsten had died during treatment. And then they drove back home."

My grandmother has a bit of a hazy memory of the next few days. The eldest brother and his wife went to Oringe to help my great-grandparents get Kirsten ready. Then she remembers that she and her closest brother, Johannes, found out that they had both dreamt about Kirsten the day before she died.

"I dreamt that she had died and that my mother stood up at the funeral and thanked God for taking her. Johannes had dreamt that Kirsten would come home to Bornholm with my mother and father."

Kirsten did: She wasn't buried at Oringe under a wooden cross, but at the cemetery in Rønne on 28th August 1951.

"My father found her a stone that was shaped like Bornholm."

Familiegravsted
Family grave in Rønne.

In the church records from Rønne Church the pastor, Viggo Nielsen, entered Kirsten at the bottom of a page under the heading "Dead women". In the column furthest to the right under "notes" it says, "status epilepticus post convulsiones artificiale": epileptic seizure after artificial convulsions. It also says "Scizophrenia for 10 years".

My great-grandmother died five years after Kirsten, in 1956, and my great-grandfather died in 1964. They were buried alongside Kirsten for many years, until the burial site was demolished around 2010. However, my grandmother took a few photographs of the grave in the 1990s, and these are in the box in the summerhouse. Kirsten's gravestone really does look like the island where she was born.

After Kirsten died, my grandmother and grandfather had some tough years, with many moves, young children and few resources. My grandmother was afraid for many years that she might be "infected" with the same illness as Kirsten. That she was the one of the seven siblings who would carry it on because they had lived so close together as children.

"I thought I must be the only one of us it would pass to. Maybe because I had been so close to her. Then when I met your grandfather, I said, 'there's something you should know'. He didn't pay much attention. That's what happens when you're in love."

When I visit my grandmother at the nursing home to talk about the brain, she asks me if I've found out more about Kirsten.

We talk a bit about how much I found out, about how there's still a lot that's unclear because the file from Oringe has disappeared. She has found another album of old photos from her childhood, from my great-grandmother's well-used camera.

Farmor og Lise kigger på billeder

Then I begin,

"I have something that I thought I should tell you, that I found out about Kirsten," I say.

"Go on," she says.

"It's one of those quite medical things that . . ."

"It's that after her death, she was autopsied. Back then, everyone who died in hospital was. In all hospitals."

"She was examined. And then what they did is they actually took her brain . . . out."

"No!"

"Yeah."

". . . and they kept it."

"No!"

"Yes. It's still there."

"Is it so they can find out more about the illness?" she asks.

I start to explain that it was normal practice at psychiatric hospitals at the time. That they took the brains out and put them in a preservative fluid. Sent them to Risskov. Examined them. Registered them.

"They actually have a collection of 9,000 brains from psychiatric patients in Denmark. For research purposes. To learn more about . . ."

"What it is," she says.

"Yes."

I explain that in the beginning, people thought they might be able to see some common features in the brains of people with schizophrenia, depression or dementia. In the same and somewhat mechanical way as when people thought they could cure the illnesses with an operation. That they also recognised that they knew nothing about the illnesses, but they might know more in the future – and that it would be good to have the brains.

"For example, you once thought it was contagious. Today, we know that it isn't," I say.

"But it's hereditary?" she asks.

"It's not based on genetic factors alone."

She sighs.

"In my youth, I felt that it was likely me, and not my brothers, who would inherit it. Now I know that's nonsense."

I explain that I've been to see the brain collection and talked a lot to the man who manages it about how there's a lot of potential for research in mental illness today.

"I must say you really went for it," she says dryly.

We laugh a little.

"I can't help but think about how they brought her home. When was she autopsied?" my grandmother asks.

"Within 24 hours of her death," I reply.

"Oh, well then that makes sense."

"And they could remove the brain without it being obvious?"

"They could, because they sewed her up."

Then she seems to gather herself a little.

"I can see why they wanted it at the time. To come closer to understanding. I think I can understand that."

A week later, I'm back at the nursing home. I've been thinking that it was a bit of a lecture I ended up giving my grandmother the last time we saw each other, and some weighty information as well. How has she been?

"Well," she says.

"I have been thinking about it."

She says that her friend Regnar visited the day after I had. She told him about Kirsten, about me and my writing. It was good to talk to him about everything," she says. What about the brain?

"I thought that was strange."

"As a research object, I can understand it . . . Regnar thinks it's good too. Yes, I'm sure it was the right thing to do."

I ask her what she finds strange.

"Well, it's just the thought. It was so many years ago. I didn't really know that you could do that. Or that people did it. I hadn't thought about it."

She also finds the idea that the brain was taken out so soon after Kirsten's death quite dramatic.

"It was right after she left us."

We talk a lot about the details. About how they administered the electric shock, how the brains are preserved, whether they are in alcohol, in jars, whether they can be used for anything. I explain to her what it's like down in the brain collection, where Kirsten's brain rests in a bucket full of formaldehyde.

My grandfather was cremated after we said goodbye to him in the hearse. Kirsten was buried, but her brain still exists. My grandmother and Kirsten grew up in a Christian home, and faith has been a big part of my grandmother's life ever since.

I ask my grandmother whether she thinks she'll meet any of them again.

"It's a hard question," she says.

"I believe something spiritual suddenly leaves the body as you die. That's the strange thing about the soul. Where does it go? It's a mystery. I'd like to believe that God takes care of it. But I don't know."

Epilogue

A long-haired man appears on the screen of my phone. It's Simon Anhøj, a doctor and PhD in neuropsychiatry at the University of Southern Denmark. Along with the pathologist from the brain collection, Martin Wirenfeldt Nielsen, and some other researchers, he has been working for some time on a major research project about schizophrenia, which will make use of the brains in the collection.

Basically, they are investigating whether schizophrenia is a much more biological brain disease than previously thought.

They will look at three different things: patients' very early development using models of brains in the foetal stage; their condition around the first psychoses, typically around the age of 20, and last but not least, the brains of deceased patients with schizophrenia.

This is being done to support a theory that has actually been around for a long time: that schizophrenia is really a kind of developmental disorder, partly determined at birth by our genes.

Simon Anhøj is a little reluctant to share too many details. This is because the project is still under development, and they're applying for funding. They want to be sure that they are doing everything right. They will meet with a major Danish foundation in early October 2021.

"I have to get a haircut first," he laughs.

He too has to go down to the basement under the University of Southern Denmark quite often to check on things. He stands there between the filing cabinets and the white bins, and can't really comprehend that he is surrounded by more than 9,000 human fates. However, he is also filled with a sense that the answer to the riddle of schizophrenia lies in this very room.

Mirkotom
A Microtome, used to cut ultra-thin sections of brain tissue so they can be scanned and analysed on a computer. Photo: Julie Due Sørensen

He says that a study is well underway to examine the older brains in the collection to see if they are in good enough condition to be used for research. He also has good news for me.

"We know that they can," he says.

"Schizophrenia has been called 'the graveyard of neuropathologists'. So many people have tried to solve the mystery without success – and it's not that I think there's a simple biological explanation. It might be a very complicated explanation. And here we are, thinking we can make a contribution. Yet that's why the brain collection can really come into play, because it is by far the largest 'sample' of brains from people with schizophrenia in the world. The brains in the collection are also very well-described."

I ask whether Kirsten's brain will be of use.

“Without a doubt.”

After the publication of ”Kirsten’s Brain” access was granted to a file, the S8-case, describing the course that led to Kirsten Abildtrup’s death.

According to the file Kirsten died after shock treatment with pentazol, heart medication, not electroshock.

Kirsten was lobotomised on June 9th 1950. Her condition hereafter was not good: she was depressive, wet herself, refused to eat, and had to be fed through a stomach tube. On the morning of August 23rd 1951 she was injected with pentazol “if possible to better the situation as the patient’s mother was supposed to visit on one of the following days,” the file states. Half an hour later, 11.40 am, she died.

Tak til Jesper Vaczy Kragh, Beinta Eriksen, Bent Gaardbo, Martin Wirenfeldt Nielsen, Marie Nørby Madsen, Mie Kristine Just Pedersen, Simon Anhøj og ”farmor”, Inger Abildtrup Søgaard. Til minde om Kirsten Abildtrup og Christian Edward Sogaard.

Credits

Text: Lise Søgaard

Produced by: Sara Gro Vagtholm, Mikkel Møller Jørgensen og Lise Søgaard

Photo: Mikkel Møller Jørgensen

Design and code: Sara Gro Vagtholm

Digital editor-in-chief: Stinne Andreasen

Other photos: Lennart//TT//Ritzau Scanpix, Roy Ooms/Ritzau Scanpix

Published on 30th September 2021