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Excerpt for The Living Cage (translated from Norwegian by Stephen Collett) by , available in its entirety at Smashwords

The Living Cage
Life beyond stroke





by Per Løvhaug

Copyright © 2018 Per Løvhaug

Smashwords Edition

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Table of Contents

Preface

A Nightmare

The new everyman disease

Dream replaces reality

The wallet that disappeared

Home in dreams

The intensive care ward

A psychedelic dream

Birdsong was alarm

Crowded at night

Are you comfortable?

From passive to active

The brass wire in my face

Food through gastric feeding tube

Kongsgårdheimen

Trouble upon trouble

The dreams change character

A special day

We do adult education

Hemorrhage number two

An accessible home

A uridome of bother

Time is relative

Visits for joy and wonder

Alerting our municipality

Left to one’s own resources

Just as confused

A need for psychiatric help?

Individual Plan

The municipality administrationhelper or opponent?

Reorganization

User-directed assistance (BPA)

Hard training

Lonesome at the Day Hospital

The elderly wave”

A quiet mass murder

Good helpers

Missing the hospital

Look up and onward

Epilogue

A note on the author

Preface

A cerebral stroke strikes the patient directly, but those who are nearest, particularly a spouse, also have their lives changed. And around the nearest circle are the helpers – the health professionals. So there is always the three P´s: patient, persons near, and personnel. Each of these needs to find his/her place on a scale of emotions, from despair at one end to hope at the other. It is not uncommon for emotions to swing between these outer points.

The remedy is treatment, in the acute phase, and it is vitally important that it begin as soon as possible and that it is effective. There follows the intermediate period of care and gradual mobilization, and then the extended phase of therapy and rehabilitation. This final phase continues without end, in part because one can always improve, and in part to assure that achievements are not lost. The goal is the mastering of the disability and of life itself. Mastering is not the perfect “as I was before”. Mastering is in persevering, in continued training and in keeping hope alive: We will not ever give up, and not even then.

It is critical that the three-P´s understand what has happened, and they need to understand it with both reason and feelings. To achieve this we need to hear the stories of those affected, namely the patients and persons near them. Per Løvhaug is a journalist and writer. He manages to put words to his experience and emotions, so we can learn from him. He explains how it feels in a manner that we grasp and are ourselves gripped by the telling. He shows us how emotions swing throughout the scale, but still lead towards hope for a livable life. He shows us what love means when catastrophe strikes.

I hope that many will read this little book and be gripped by it as I was. There is hope in the midst of despair, and we must grasp that hope. Gallows humor is often good help: Seize the day, or you can call it a night!


Peter F. Hjort

Professor Emeritus, University of Tromsø

A Nightmare

Imagine that you awaken in your bed, unable to move any part of your body. Your arms lie slack and heavy by your sides, your legs won´t budge. You have lost speech, and your hearing is reduced to a deep rumbling. Through blurry eyes, you look out into a foreign world where everything is double.

You realize that you have lost control of your bodily functions, and you lie there a wreck, robbed of all dignity. You want to close your eyes and glide back into a compassionate sleep, only to discover that nightmares await you there that are worse even than those in what we call reality.

Not even unconsciousness can appease your painful awareness.

The cage was made of finger-thick, smooth bars, woven in an intricate pattern. The bars were rust-red and could have been of iron, but they glided in and out between themselves with the greatest suppleness. They were warm, but they gave no sound.

The cage was alive.

The naked man´s body inside the cage twisted in pain. Sweat ran from it, but no sound escaped his distorted mouth. The bars enveloped his body as he strained to get loose. The more he struggled, the harder the grip was tightened. Not before he resigned himself and relaxed did the cage´s grasp soften.

Slowly and watchfully the bars slid from each other, only to tighten at the least movement. Only when his body had completely submitted did the cage ease its hold.

This was one of many nightmares, as I lay unconscious in the intensive care ward of Flekkefjord Hospital. I had been admitted with cerebral stroke and though my nightmares varied they each reflected my condition: a naked, vulnerable man-person abandoned to forces outside his control, unable to move. The feeling of powerlessness was unbounded, and despair over my paralysis was bottomless.

In one form or another this theme revisited me repeatedly through the three weeks I lay unconscious. But I was not completely senseless. I had a rich dream life that also incorporated parts of what was going on around me. As I began to return to myself the dreams became more nuanced and colored by my surroundings.

It was the third of March, 2007 at eight o´clock in the evening that the stroke hit me, ruthlessly and painlessly. We were to eat dinner at the home of friends in Spind, and were about to have an aperitif of white wine before going to the table. Then it happened. I perceived two blood red stripes that ran parallel down a grey-white glass wall and disappeared into my body. For a moment I tried to follow the stripes with my fingers, without real success.

Berit, our hostess, asked me whether I was frightened, and I said yes. That was the last thing I said for many weeks. In truth, I was more amazed than afraid and observed almost amused the way my left leg began to kick uncontrollably in all directions. I tried to steady it with my left hand, but the hand wouldn´t listen. You have had a stroke, I remember thinking.

In the distance, I heard our host, Stephen, say decisively that we needed to call an ambulance. The next I knew two red-clothed men carried me on a stretcher and put me into the ambulance. I heard my wife Astrid say, distantly, “I am coming with you.”

Six weeks would pass before I found out where I had been taken.

Astrid told later how the ambulance driver asked whether they should drive to Kristiansand or to Flekkefjord, as Spind, where Berit and Stephen lived, lay fairly equidistant from these two hospitals. She inquired as to what would be best for me, and the driver responded that if it was a blood clot in the brain, seconds could matter.

“So drive to Flekkefjord,” said Astrid.

In Flekkefjord everything was laid ready when the ambulance arrived. Within twenty minutes it was clear that the problem was a cerebral hemorrhage. It had occurred in the lower brain stem at the juncture with the spine, where the nerve bands are so dense that operating was not an option. I could either die or be paralyzed from the neck down by the least collateral damage.

The new everyman disease

Cerebral stroke is often called the new everyman disease. 16,000 Norwegians are given that diagnosis each year, and the number is expected to rise to 25,000 in the next twelve to fourteen years. Four out of five of us experience a blood clot to the brain, and the patients are increasingly younger. It is crucial that treatment begin immediately, and that rehabilitation begin as early as possible. This is decisive if the patient is to be brought back into employment, or in the least to a worthwhile life. There are examples of people coming back to their jobs and working through to retirement age. Some have perhaps had to work on partial leave, but have nevertheless saved society huge expenses for their care.

The rise in the number of strokes corresponds also with the aging of our society. This puts large demands on the capacities of municipalities to provide rehabilitation. It is unacceptable that patients released from hospitals should simply go home without assistance for rehabilitation. Without help, stroke victims can soon end up in nursing homes. This result is prohibitively expensive for municipalities.

Flekkefjord Hospital is the western-most general hospital Southern and Eastern Norway Regional Health Authority. It serves the western part of the County of Vest-Agder and two populous municipalities in Rogaland County. The hospital has a medical ward with 30 beds, of which four or five are reserved for acute treatment and rehabilitation of stroke patients. In addition, there is the Farsund Geriatric Day Hospital, an administratively independent unit under medical supervision from Flekkefjord. The hospital in Flekkefjord also has a surgical ward with 26 beds and a maternity ward with 12.

Not least in importance for the district is the emergency ward. This is often a patient´s first contact with the hospital. The emergency ward employs thirteen nurses and can call on specialists from all fields of medicine in the hospital. Finally, there is the intensive care unit with 16 beds.

The hospital opened in 1942 and is – both in location and esteem - the virtual heart of the city. It is built on a cliff in the center of town, as to remind one of the Potala monasteries in Tibet´s capital Lhasa. If it isn´t as symmetrically constructed, like the Potala it appears as if the hospital buildings have grown out of the rock they are built on.

Dream replaces reality

I dreamed I was in the hospital in Kristiansand. There I was received by a young Swedish doctor who installed me in a room full of mirrors and glass cabinets. He let me keep my clothes on, and gave me some hope of an early dismissal.

I was longing for a cup of coffee, but I would have to fetch one myself in the cafeteria, I was told. How, he did not say. There was something terribly wrong with my legs. I found an alter, a sort of tall ambulator to support one in walking, and somehow managed to hoist myself onto it. But I couldn´t get out to the cafeteria, where the coffee machine was.

There was a young female physician, and she had not the least confidence in the Swedish doctor. He is HIV positive, she confided, and now he was trying to sneak blood from healthy patients for himself. He hoped this would cure him.

I told her that he had gotten a little blood from me for the promise of a free ride home in the medical helicopter.

“I will give you a free ride home”, answered the young female doctor angrily, and wrote something on a scrap of paper.

At that moment I heard the sound of rotor blades from a helicopter landing behind the hospital. Instantly I found myself outside in the room where people were waiting for the helicopter. One by one those who were traveling departed, while I was left lying alone. I tried to cry for help, but no sound came. In the next room I could hear the ambulance team knocking around, but the hope that they would find me gradually faded. The anxiety of loneliness gripped me. Far off I heard the doors being closed and the helicopter fading in the darkness. Then I understood that all was lost.

Speech was gone and mobility had vanished.

It is said that rehabilitation is more than learning to walk again. It is a matter primarily of regaining dignity. You eventually discover that you have lost the capacity to communicate and to move about. The dignity which you have associated with your position in your career or social life is now meaningless. It vanishes as you sense the stink of urine and defecation rising from the bedclothes.

From deep in my subconscious arose a sentence I had heard somewhere: Love is a lonely thing. The phrase seemed more and more meaningless the further down I felt myself to be. Before me was a door into a dark, empty room, and over the door was written in gold letters: Death is the loneliest. It struck me that the one who had written that love is a lonely thing must have been a young person who was suffering from love rejected. True loneliness lay in the absence of love, absence of feelings.

At the same time, the empty room tempted with the peace and absolute rest it offered. When the door closed, everything would be shut out, also suffering, defeat, loss of dignity. The open door lured me, but then in the dream, I saw Astrid sitting among some solemn men. It was obvious they sat gathered around my bed. Astrid flung her hand out towards me, and the door closed suddenly on its own. That was when I realized how much I love her, and that death withdraws when it meets two-someness or several-someness.

That was not the only time I was lured by that open door. But from this point, I turned to an exploration of the hospital where in my dream I had been admitted.

The wallet that disappeared

I dreamed that the hospital ward was stretched in its length, and at the end of the corridor sat the Swedish doctor surrounded by a court of nurses. They listened with respectful expressions to everything he said, clearly in boundless admiration. I was very annoyed that Astrid climbed over the back of a chair to get closer where she could better hear the Swede. It was me who needed her attention now.

In my new room, I found out that the closet with my clothes didn´t have a back wall. Anyone could get in from behind and take what they pleased. I was most concerned for my wallet, where there were both money and credit cards. I wanted to make Astrid aware of my trivial worries. She just looked at me wonderingly, without seeming to follow a word of what I was trying to say. I formed the sentences as carefully as possible, convinced they were as lucid as those neon headline signs flashed on buildings that used to be so popular with the major European newspapers.

In the next instant, I was in a deep sleep, where this business with the wallet turned into a nightmare. The wallet had become the freedom I sought, while the lack of communication was the cage that held me. As much as I might try, I gained nothing. Not until I let all thoughts of the wallet go could I sleep in peace.

I continued the exploration of the hospital and its surroundings. The others were skiing while I was carried on a pair of planks. After crossing a large field, everyone went to rest in a big rockslide. From the rocks, we could see back up the field, which ended at a ridge. There lay our home. Nearby lay Torp farm on Lista, which was now taken over by Sigurd. So close, yet so far away was the object of my desires and dreams.

One by one the fittest began to go in the direction of our house. Astrid was helped to come along, but no one seemed to notice me. Neither could I make anyone aware of my existence, lying there alone until the darkness began to fall. Then, for the first time, I became aware of someone taking care of me.

“Of course you are coming with us”, said one of the white-clothed women.

After that, it was always a woman in white that saved me, if even at the last moment.

For years I have trained myself to remember my dreams. In the beginning, I tried to interpret them as well, but I only got the answer I wanted. You might ask why I am interpreting the dreams from the hospital, but it is more to find a connection between the various sequences. The dreams I had at the hospital were naturally as disconnected as most dreams. What can seem like a full evening´s performance was probably but a sequence of some seconds´ duration. I slept a lot and must have dreamed much of the time.

I remember only two waking moments from the intensive care ward. Both times members of my family were preparing to leave for the day. As they bid me goodbye, they held their glance on something above my head. It must have been the measures for my heart rate and oxygen intake that flickered over me continually. It annoyed me but lies so close to reality that it was unlikely a dream. It must have happened just before I was transferred to rehabilitation.

Meanwhile, there was a marked redirection in my dream world. Now I had landed in a kind of convalescent home in the highlands, though in reality, I was still in the hospital. Outside the windows were tall trees in the hills, but the only sound we heard was the flapping of the helicopter´s rotor blades, coming and going. I tried to catch a ride home again and again, but each time I was forgotten. Even though the pilot was informed that I was to come, there was no one to help me over that decisive small distance from the bed to the helicopter. I was lame and helpless.

Home – in dreams

I don´t know how, but by some means in my dreams, I had managed to come home. But things were different there now; all the rooms had been rebuilt. White tiles covered the floors, and the house had gained a second floor. There were doors and galleries so that one could look down into the parlor, and the ceiling was covered with grating that hid a ventilation system. It looked suspiciously like the hospital, and when I suggested this, Astrid and Sigurd looked at each other with secretive smiles. I suspected that they had made an arrangement with the hospital to put the house at its disposal as a convalescent home.

On top of the hill to the south of our home - Astrid´s and my retirement cottage - stood another building, and that appeared to be a new institution. I imagined that the National Health Association owned this building and the hospital where I was a patient. Now they had also rented our house to use. There was snow outside and people were skiing down the hill from the building to the south and past our house.

Suddenly a group of neighbors made an entry to say hello to me. I found this very pleasant and wished them all welcome. They streamed in from both west and east. I had nothing to offer them, but they brought five-liter plastic containers full of a colorless liquid that they drank quite contently. The pitch rose quickly, and someone began playing country music. Abruptly the doors to the garden flew open, and in stormed a horse with two riders. The horse was iron-shod so that the tiles shattered, and bits flew through the air like snowflakes. I wanted to try to stop the horse, but I couldn´t move. Again, I was chained there where I lay, and couldn´t escort out either the guests or the horse tramping around on the second floor.

So far that dream. What happened to the horse and all the visitors, I didn´t get answered, because next thing the family and I had gone to rest upstairs. A noisy group of kids from the house to the south of us had seated themselves around a piano down in the living room. They began to sing songs, obviously in the hope of driving us out. We answered by singing folk songs, and it became a competition for who could hold out longest. We knew some old ballads with unbelievably many verses and it ended with the neighbor kids leaving in the early morning, completely exhausted.

The next time I dreamed of home, guests came from near and far to say hello. Among them was my mother, Karen, over 90 years old but in good health. She still lives in Trøndelag, not far from where I grew up. In the dream, she fell asleep in my arms. After a while, I discovered that she was cold and stiff. The apparition was so like my mother, and it took a long time before I realized that it was made of plastic.

Then I understood that my mother really wanted to come to me, but couldn´t. She had therefore sent an image of herself. The case was different with my sister and her daughter, from Asker, both trained nurses. They saw to it that I lay comfortably and sat well, and did all that was right for me. But when it came to the unavoidable, defecation, they were long gone.

It was not only close relatives who came to visit, many people had traveled all the way from my birthplace. I had known their grandparents, but now I had to recollect the names of their offspring. It struck me that family lineage in Trøndelag must still mean a lot when the offspring of long-dead neighbors would travel so far to make a sick call.

Who had cleaned up the excrement and given me new clothes, I never found out, as the dream was broken off before I got there.

Now the time had come to send invitations to the wake. It was to be jolly and to take place while I was still alive. A friend, Inga, became so enthusiastic about the idea that she started at once to organize a choir and musicians to practice their performance for the funeral. A little peeved, I asked her whether she couldn´t wait until I was dead before arranging the funeral ceremony, but she wouldn´t hear of it. Instead, she ordered a bus for the choir so that they could practice together with the musicians from Mandal.

While Inga was off in the night to rehearse merry songs, guests began to pile in. From Trøndelag there came aunts and uncles, cousins, old neighbors and their children and grandchildren. And from Sørlandet, old friends and colleagues. There wasn´t room enough in our house, so the gathering was to be held down in the meadow. Where they found food and drink wasn´t clear to me, but the guests ate and drank and enjoyed themselves splendidly, I was told. They sat in groups about the meadow clearly having a fine time, though I didn´t manage to greet all of them. Alas, I couldn´t move. Nonetheless, I did join my sister and brother-in-law when they prepared to leave.

At the barracks-like building, we stood and listened to a pretty jazz song wafting out the window. We couldn´t help but look in to see who was singing so lovely. It turned out to be a cousin, Åshild, who was the master of that song. I don´t remember any specific songs, but they were old standards that I knew well, though performed in a new, exciting mode. And that girl we had known for fifty years without recognizing her talents! We looked at each other, probably sharing the same thought: How little we know of each other.

We separated there outside the window, and we agreed that we would have to do this again.

How I came to be there, I don´t know, but I was “awakened” in a bed at the hospital by a bird singing crazily. I lay awhile thinking about which bird it could be, but I had to give that up. Nothing was in tune with the season of the year. There were high windows towards the backyard, but the big trees were naked. Outside it was cold and clear-skied. I drifted into sleep again, but couldn´t help worrying about my wallet since anyone could get into the closet from the back.

One way or another I must have tried to signal to my surroundings that I wanted to say something, this while I was still in the hospital´s intensive ward. From the speech therapist, Astrid got an alphabet board with the letters laid out in neat rows and lines. I tried to point at the letters but missed the whole board. Instead, Astrid began to point to lines and rows, and I was to nod if the letter was in that row. The problem was that it was difficult to signal double letters and spaces between words. Whenever Astrid thought she had figured out what word I was aiming at, she would begin pointing to letters she expected to hear in the next word. Thus we were led completely astray and ended in a wordless quarrel, and in anger I sought sleep again.

The alphabet board followed with me to the rehabilitation ward, and with it likewise the unsolved problem.

I slept a lot and seemed to dream most of the time. Now it was our home that drew me again. I knew it was out there somewhere but not how to get to it. Helicopter transport was clearly the best solution. I managed to get the proper documents in order and made everything ready for departure. When I showed these to the nurse who organized transport, he shook his head and said that I was too sick to be able to go home now. When I protested, he just said that I would have to get there on my own. Naturally, I couldn´t do that, so this attempt also was in vain.

On my next attempt, I succeeded in persuading the nurse to take my papers himself to the pilot, who said that I could just come along. I was trundled in my bed past the barriers and into the helicopter. Several wheelchairs were already there, and the two stretcher beds were occupied. I was wheeled out again as my bed took too much space. It blocked important instruments onboard. Once again I had to listen to the helicopter dissolving into the night.

The intensive care ward

I was in the intensive care ward for almost three weeks. There they got my heart beating regularly again and my breathing functioning. Large amounts of mucus that I couldn´t cough up were sucked up by means of an apparatus. It was a struggle for life or death.

In all, it was three times that I turned my back on that empty room, although the open door tempted. It was as though it invited to peace and quiet. But each time I would see someone dear to me sitting by my bed. That was enough for me to turn my back on the door.

One afternoon, several months later, I was sitting in my wheelchair and enjoying the late sun together with Astrid outside the main entrance to Flekkefjord Hospital when along came a group of women. Astrid immediately grabbed for her handkerchief. Some of the women also began to weep and came over to hug me. There I was being caressed by women I didn´t remember seeing before. I didn´t understand a thing before my wife later explained that these were half of the intensive ward staff on their way to a meeting. They were so glad to see me alive again and beginning to function.

The second wake in my dream world must have taken place while I was still sure that I was going to die. This one was no less grandiose than the first. My brother-in-law had rented a place so that we could be indoors. There was a plate of stew for each, but as usual, there was a problem with the drinks. I had been brought there by ambulance, so this time I was independent of a helicopter.

Here they all came, both my relatives from the north and friends from Oslo and the south. I don´t remember much from the party, but it must have been tame compared to the first one. Some managed to organize rides home on their own, while others came to me and asked for help. What could I do, me who had been told that my ambulance would not be driving as far as I needed? Now I was again dependent on a helicopter. Thanks to my brother-in-law one had been secured, and it tried to land on the roof right above where I was sitting. This was a glass roof. I could see cracks spreading and bits of glass dropped like hail around us. I couldn´t move, but I got Johannes to climb up and tell the pilot. However, the damages were significant, and I began to think that I must owe my brother-in-law a lot of money for the whole unfortunate affair. When I brought this up long afterwards, my brother-in-law and my sister both looked at me and shook their heads. Like with so much else, this was just something I had dreamed.

For some reason, I was not carried back to the hospital, but to our small house up the hill. Here the house was full of people wanting to know how I was getting along. But I wanted them to leave as soon as possible, before they might smell that I had soiled myself. No one seemed to want to take responsibility for this when suddenly my daughter-in-law from Oslo stepped in. She came over wearing a plastic apron, and without saying a word rolled up her sleeves and tidied me up.

This impressed me greatly, as I knew that she looked skeptically upon nursing her father-in-law. Thus she rescued what small dignity I had left.

A psychedelic dream

If I had had strange dreams in the intensive care ward, things would be no less peculiar when I moved to rehabilitation. To begin with, my attention was focused on my new room. Among other things, there were several cartons of televisions with pictures of TV screens printed on their sides. They were not unpacked yet, so the contents were new and shiny. Johannes was to help me unpack the equipment in the box by my bed, but he just stood there beside it, seemingly unaware of what he was to do. Almost imperceptibly he merged with the wallpaper and slipped into the box. This now lost its three-dimensional form and became a flat poster on the wall. Johannes appeared on the stylized screen and had himself become a paper figure. When he turned his head in profile his nose was hooked, large and clearly caricatured. He resembled a cartoon figure performing on a television screen. What was strange was that in contrast to all the other bizarre dreams I had had, this one was not silent. I could clearly hear Johannes´ voice as he served up news bulletins in a professional manner.

I waited for him to return, but it took ages and the dream unraveled. This psychedelic experience had form, color, and sound, and this continued as I took in other objects in the room. One of the cartons had a drawing of a computer on its side and was evidently useful in sundry ways. Gradually the drawing altered its form to a robot figure with Johannes´ unmistakable features. The whole room was alive, and the cartons shifted from being pictures back to being the articles they contained. It seemed as though Johannes had something to do with most of it.

Exhausted I swooned into a dreamless sleep.

Rehabilitation had actually started in the intensive care unit. The nurses had done their discreet, almost unnoticeable work; the physical therapist had labored with his exercises; the speech therapist had done what she could to find out what was left of my speech. I have no memory of any of this.

What I cannot forget are some dreams that lie in that gray zone between the two wards. Once we were in a large room not far from the hospital. In this room, we played bingo. Here the Swedish doctor performed for the last time, in an important role. He produced something he called HOB and put the nurses to work selling this stuff. It was liquid, colorless and came in white plastic containers. It had the effect on those who drank it of rendering them helpless to move a limb of their body, while at the same time appearing excited and in good humor. In this way, the Swede was able to acquire fresh blood, with no one taking offense.

When we were ready to leave the room where we had been watching a sort of bingo game, the others were assisted going out. I was left lying there and tried desperately to call for the helpers´ attention.

No one seemed to take notice of my existence.

Birdsong was alarm

Chirp, chirp, chirp

Again I awoke with that piercing sound, but I could not discover where this bird chirping came from. I had agreed with myself that it must be a titmouse asserting its territory, but found that the noise was not coming from the big tree outside the window. It seemed instead that the noise came from the corridor, and in a while, I confirmed that it was the alarm clock ringing. Satisfied I went to sleep again.

While I slept around the clock for most of my time in the intensive unit, I now began to distinguish day from night. Astrid sat by my bed until late in the evening. After the speech therapist had struggled teaching me to speak, we continued the alphabet board game. Finally, I succeeded in spelling the word wallet. Excitedly, Astrid encouraged me to finish the sentence, but disappointment shown in her face as she realized that I just wanted to know what had become of the money and cards. She had hoped for something more soulful, maybe a declaration of love or something metaphysical. I had been at death´s door two or three times, and here I was absorbed by something so prosaic as my wallet.

That was not all that absorbed me. Time after time I had tried to find out where I was, but six weeks would pass before I got an answer. That did not happen until I had learned to speak again.

It came suddenly. I was never really without speech, but the organs that produce the sounds were paralyzed. All at once the words were flowing over my lips again. God, what an amazing experience! One cannot describe the power of the loss of speech. Having composed sentences ready that cannot be expressed is deeply discouraging. One has opinions about things, but no one hears what you want to say! To be unable to comment on what others said regarding my fate. Neither could I affirm when they decided something that was right for me. In short, I was a voiceless witness to decisions made on my behalf by other people.

Though it was still difficult to talk, the rediscovery of language led to lively conversations between Astrid and myself. Among other topics, there arose inevitably the question of why this had happened to me. We did not have an answer outside of my proposal that the Lord wished to teach me patience in this life. That was something I had always lacked, and why He had used such drastic means

Crowded at night

I understood fairly soon that my room was a single. That is why I was so perplexed at how crowded it became at night. As soon as the lights were off, there began a padding about in the corners of the room behind me. I couldn´t tell what was going on until someone slung their feet up on the bars of my bedside. These were big military boots, iron soled and plugged with wooden pins. As a child, I had seen German soldiers equipped with this kind of boot. So it must have been a soldier sitting beside the bed. After a while, he climbed in, and it was impossible to free myself from the weight of his body. The soldier slept on top of me, almost suffocating me. After a while, I lost consciousness and woke to find the bed empty. One of my legs stuck out between the bars of the bed and had become wedged. After waiting a long time and calling for help, a night nurse finally came and freed me from the grip of the metal. By then I was dripping wet with sweat. In the first light of day, I saw the room was empty.

Something like this happened every night. As soon as it began to be dark there was padding about in the corners, and I had the feeling that the nurses were smuggling people into my room. Mostly soldiers, evidently from an exercise further north in the mountains. I got the idea that this was a charitable effort on the part of the nurses, for people who otherwise could not pay for their hospital stay. They only had minor injuries, like blisters and scratches.

The dream was so real to me that I asked the nurses where all of these people came from, but they just looked wonderingly at me. So I let the subject rest, as I began to understand that I was confusing dream with reality and that this might be such a case. Looking back, I can see this was the turning point in my convalescence, where I was moving from the dark unconscious to a consciousness in clearer daylight. But it also brought pain, both physical and psychological.

Still, I continued to dream about the room filling with illegal patients. Some sat on chairs over by the window. Others sat against the walls. Only the cheekiest crawled into my bed and caused me torment. I well remember the one who bent down over the bed and studied me closely. He stank of sour tobacco smoke. Later it has occurred to me that this was perhaps the night nurse who had snuck out for a smoke and then wanted to check that I slept well.

Are you comfortable?

Are you comfortable? Or as they say in southern Norway, are you lying okay? was a question I came to hate. A reply from me that I would only be able to answer in an hour was met with a blank stare. Two hands fluffed the pillow vigorously, and were followed by: Are you lying better now?

That was when I understood how useless it was to nuance the answer. Time would tell.

I don´t know how many nights I had the feeling that the room was filled with people, and there were many times I got the feeling that someone crawled into my bed. I struggled and fought to get rid of these intruders, but always in vain. It often ended with my right leg sticking through the bars of the bed and calls for help until a night nurse came.

The nurses eventually brought a cover that they lay over the guardrails of the bed each night. That kept me from getting my legs entangled. Thus, the dreams became milder with time.

My two eldest grandchildren, Peter and Aslak, often appeared towards the end in these dreams. They were very popular among these uninvited guests in the hospital room. Each morning when the nurses came to throw them out, Peter and Aslak stood in danger of being thrown out with them. Then the two boys would transform themselves to brushes of woven gold thread, and these were left alone by the staff. When the parents came to fetch the boys, they changed imperceptibly into children again.

Many weeks would pass before I understood that all of this was a dream. I described then what I experienced in the nighttime to one of the nurses, and she listened patiently to me. She asked some questions and finished by saying: “Well, you are to understand, Per, that no one comes into this room at night except the night nurse.”

Reluctantly I had to accept that the nurses were not trying to fool either the hospital or me by taking in free patients at night. In short, it was all a dream, though the suspicion that there lay some truth in it hung on for a long time.

From passive to active

In the intensive care ward, I had been a passive recipient of everything, from help for the removal of phlegm to the ingestion of nourishment. Now I began to play an active role in the daily routines of the rehabilitation ward. In the beginning, my nourishment was taken intravenously, later through a tube via the nose and to the stomach. This gave me the sensation that a plastic chest of drawers had been operated into my head, and the food was shoved into the top drawer. Naturally, this had a connection with the stroke having paralyzed parts of the musculature in my head. And so I needed to see that the food passed through the right drawers and down to my stomach. This concern was related to the challenge of drinking. It took so little for the drink to go the wrong way and catch in my throat. There was also discomfort connected to these drawers in my head, especially in the throat.

The tube irritated both the nasal passages and the throat, something that had been ameliorated in the intensive unit by the placement of a gastric feeding tube directly into my stomach. Through that, I took nutrition, drink, and medicine for many weeks thereafter, even long after coming to the rehab unit.

That my sight was severely altered, I didn´t discover until some time had gone. It was not just that my hand was without steering when I tried to point at the letters Astrid held up for me. I actually saw them double. Nor did it help that my glasses had been lost. Both Astrid and the nurses searched for days without finding them.

It was around the same time that I realized I had tinnitus. Not just your pleasant rush of wind, but the sound of jet engines revving up. It was as though two Boing 737s stood behind the hospital, clear for takeoff. Doctor Rita sounded the alarm as soon as she heard this and wrote a referral to the Ear-Nose-Throat Clinic in Kristiansand. Even though it is within the same hospital, I was notified that I was not seen as a priority case, but that I could apply for the same services elsewhere, if I did not get an appointment at the Kristiansand clinic within six months. I took it in stride and thought I might as well wait, as I was soon turning seventy. Astrid was enraged, saying that no one should be told that they are not prioritized, regardless of age. It must certainly be possible to find a different language, at any rate, she stormed.

Life in the rehabilitation unit began to take a form that I felt myself to be a part of. The day began with the night nurses checking whether I was lying “okay”. If anything needed changing, they did that. Then came the occupational therapist and a nurse to undertake the morning care. The occupational therapist, Laila, did things in ways that made me participate. I had to wring out the washcloth, for example, and wash my hands and face myself. The nurse did what she could to help me, while the occupational therapist challenged me to do what I could for myself. I soon learned to differentiate the different categories of staff from each other. There were those in white with short jackets on the one side, who were my friends and helpers. On the other side stood those with blue smocks. They were occupational and physical therapists. They were my opponents, who made life difficult for me. Above them stood those in the long, white coats and stethoscope, who gave orders about what was to be done. I understood in time that without those in blue there would be no progress, but without those in white life would be unbearable.

After the morning care, which in the beginning was carried out in bed, it was the physical therapist. By the time I was aware that we were doing therapy, she had been working for a long while with a person more unconscious than participatory, and her work consisted of keeping me alive and functioning. Now I began to take part in what was going on. In time I was hoisted out of bed in a “sail”, a contraption that brought me over into a wheelchair. And in that, I was rolled to the physical therapist and her exercises. It was asserted that I was so motivated it actually motivated them in their work. I was unaware of this but had a vague feeling that things were moving forward. This also gave me an unrealistic hope that I would soon be back where I was before the stroke. On the other hand, no one was giving me a realistic picture of the situation. No one but I, myself, was creating these expectations, though when the unavoidable reaction came, Karen, the physiotherapist, said that she had expected it. But by now, she said, I had given them so much motivation that it was time those around me gave some payback. That gave me something to think about, a stimulus to not give up hope.

The brass wire in my face

As consciousness awakened, so also woke vanity. Astrid had to assure me time after time that I had not gone crooked in the face, even though the left side was paralyzed. She assured me that everything was fairly unaltered, but I felt that my face was divided in two parts.

“But certainly it needs a surgeon?” I asked.

“A surgeon for what?” Astrid wanted to know.

“To remove the brass wire in my face that I am sewn up with,” I answered.

Astrid laughed and fetched a mirror. She held it in front of me and asked me to point to the brass wire.

I feel them,” I answered, but avoided looking in the mirror.

Astrid patiently tried to explain that even though I had a sensation of scars, my face was unchanged. I have accepted this, but still feel scars in my face to this day.

The occupational therapist had her own devious devices. To begin with she operated with a stick game that I was to play. The object was to remove all the wooden pins that were set in holes on a wooden board. The rules were clear enough, the problem was to get the pins to stay on the board or the table beside it. When I got stuck, we usually counted the pins on the floor instead of those left in the holes. It was a win when the number of pins that had to be picked up from the floor went steadily down.

Another exercise whose purpose I could not understand at first was the folding of clothes. The occupational therapist, Laila with the long blond hair, brought in a basket of newly washed clothes that needed to be smoothed and folded. I accused her of exploiting me for her domestic chores and then offered to do it for others around the hospital. For pay, of course! Laila was in on the joke, as we had a light and humorous tone between us.

Playful also was the tone between myself and the rest of the personnel. There was overall a relaxed atmosphere among the staff of the rehabilitation ward. Calls and laughter sounded in the hallways. I accused especially the older nurses of being obsessed with pee and poop. I had come so far as to being brought out of bed to do my business on a commode chair, something that was a significant step in the recovery of my dignity.

It began with me remembering my childhood traumas. I was a bed wetter until I was eight or nine years old, and perceived this as something shameful and sick. Now I felt something similar. In my half-conscious state, I asked Astrid whether she could wash me and take away the mess and wet clothes. She went to the nurse on duty and asked whether that would be OK.

“No,” answered the head nurse, Reidun. “Leave that to us. We are the professionals.”

So Astrid did as she said and I never asked again.

In time it had become pleasant having enemas and clothes changed in bed, but the nurses advanced things in their fashion. Now I was hoisted out of my bed in a “sail” –a sling- and put down on the commode chair. I got the whole sheet around me, which hid both the toilet and me –only my red-flushed head sticking out. I managed with great effort to hold myself up, clinging to the armrests. And it came!

In a little while, the nurses’ assistant Ane Marie came in to check on me. She peeked under the sheet and cried out: “Oh, Per, what a clever boy!” Then she pulled out the bedpan and held it up. “Look what you have managed!” She ran into the hallway with the bedpan. “Look, see what Per has done!”

So in this way she lifted some of my lost dignity, even if it stunk a little. That I wasn´t offended owes to my great sense of appreciation for Ane Marie and her manner of expression. Of her coming and going while I was on the toilet, for example, she would say “it´s just like on the big highways”. She had altogether many pertinent phrases in her Americanized Kvinesdal dialect.

And then there was Sissel. She was particularly concerned that things were in order regarding my urine. When she pulled up the bottle with 150 ml yellow-brown liquid, she would crow with pleasure and give me a thumbs-up while holding the bottle to the light. In this way, Sissel confirmed that there was progress with the control of that bodily function as well.

It was the white-clothed nurses that gave life to the monotony of the days. They were always making things happen. First, it was the morning care. Then while the ergo-therapist used a brush to find where I still had feeling and where I was lame, the nurses did other things for me. They saw to it that I got clean clothes, and one of my own shirts. At night I had worn one of the hospital shirts, but now I had on something of my own, familiar clothes. They saw to it that my hair was combed and teeth brushed. They saw to it that I got food through my stomach valve, and was ready to meet a new workday.

Food through gastric feeding tube

Despondent, I looked up at the colorful bag hanging from a hook over my bed. Nutrison was written on it in gay letters. From the bag, a thin plastic tube descended to the valve in my stomach. At the top was a glass bulb where one could see how many drops fell per minute. The glass showed the contents to be a brown-grey soup that was on its way down to my stomach. At the lower end of the stomach, I had read somewhere, there is a muscle called the pylorus. This regulates how much of that soup my intestines would be getting at any given time. Luckily it does not have taste buds.

I came to think of a place in France called Puylaurens. It was the count of Barcelona who in his time built a fortress there. It commanded two valleys and saw to it that only a reasonably small number of Frenchmen could slip into Spain at a time. In the 1200s this became one of the last refuges for the Cathars. I saw this splendid edifice with my inner eye and recalled the hiking tours we had in Languedoc. In view of the feeding bag hanging over me, it was seductive to turn my mind to those fabulous meals I had experienced. Entranced, I set about composing a dream meal of the best I had tasted down there.

For appetizer, there was a giant platter of oysters from the lagoons of Leutate, south of Narbonne. Fresh and salty because of the high salt content of those waters. The main course was to be whole baked quail like we had been served by Anne in the loft of the old schoolhouse in the village of Comus. There the quails had flown up around our legs as we crossed the poor pastures coming down to the village. As in Norway, there are many abandoned farms in France, the fields barely used. For dessert, we would have Flan, a caramel pudding made in small, round forms, named after its place of origin in France or Spain. One type is called Flan du Cathar, another Flan de Cathalan. Lovely and golden with candied sugar on top.

So there I lay and dreamed while the brown-grey soup dripped down to my stomach.

Placed in a wheelchair I sat like a schoolboy with his hair wet-combed, ready to face the challenges of Åse the speech therapist. She was a woman in her best years, with an adult´s patience and tolerance. She was so happy when she had gotten me to count to five. I can still remember the triumph it was when I could name the months of the year. She had her own technique of chilling my lips and cheeks with teaspoons cooled in glasses of ice. Finally, she would press down my tongue with a teaspoon, and by the reaction tell how the progress was coming along. She also had a mirror in which I could view my own face and my expressions as I repeated the phrases she gave me. She made me aware that there is a close correspondence between speaking and eating.

Speech therapist Åse gave me a general awareness of my body that I had not had earlier. She gave me short pieces on local history to read aloud but did not correct me if I read wrongly. Instead, she would point out that I had lifted a shoulder or clenched my fists in particular situations. Gradually she got me to relax while I read a text. In time she had me retell and did not interrupt as I performed what I had to say. Instead, she would comment on all of it when I was finished. In this way, she gave coherence to each lesson.

From Åse I would be wheeled over to Karen, the physical therapist. She had a long list of exercises I had to go through, the most important of which was surely the training in balance. That was sadly unhinged by the stroke. My head had a tendency to fall to one side, and I literally could not tell up from down. I was lame on my left side, but could after a fashion pull myself up to stand on my left foot. The important thing now was to learn how to move my body using the limbs that were intact. To begin with, I could hardly make out the contours of the surrounding landscape through the windows, but as I began to see better, I learned to focus my sight on a house or another object in the panorama outside. On occasion Karen got me to straddle a round plastic sausage while she sat behind and shoved, this way and that, for me to train my balance. The goal was always self-help, but for the meantime, I had to have help for everything.

Every Wednesday morning, we had an hour that was dedicated to practical adventures. These consisted of things like baking rolls, pastries and “cinnamon in the curves”. We made waffles and cooked tomato soup, and one day we were put to painting silk scarves.

“We´re having fun now, eh Per?” said Jakob. We two were the only men in the ward. I hung in as well as I could with all of this, but could not help noticing how we lived largely in a society of women, as everything was shaved of manly pursuits. I requested a plank, a hammer, and a fistful of four-inch nails, but I never got them. They were probably afraid I would knock my fingernails blue.

After two months I had come so far with Karen that I began to exercise in the “walkway”. There were two poles as railings, and I attempted to advance between them like a normally walking person. My feet went a little bit here and there as though they had their own life, but it was enough to impress the physical therapist. Now she thought I was ready for bigger challenges.

She resolutely applied for my admittance to Kongsgårdheimen, the district hospital´s rehabilitation center in Kristiansand. There, it seems, they had a walking machine that could help me further. Representatives from Kongsgårdheimen came to Flekkefjord, inspected me and found me worthy. And two weeks later I was on my way there, to finally learn to walk again.

Kongsgårdheimen

I have never sat as much as I did those two weeks at Kongsgårdheimen. To begin with, I was put on a physical therapy bench, where my task was to balance without support. In time I learned to stretch my arms out in all directions, and still hold my balance. I felt like a dog undergoing obedience training.

The physical therapist was pleasant enough and made the decision after one walking tour that I was not ready for this. Instead, I was tasked to pull myself up from my wheelchair and grab the railing on the “walkway” to get support. The problem was that the physical therapist stood too near me so that I was hindered by those large breasts of hers. Several times when I was trying to stand, my head would butt into her beneficent largess.


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