I went to see the quack this morning.  The snow had all but thawed, but the wet ice outside the surgery was treacherous.   Was this an opportunist way of creating new business by a new entrepreneurial NHS?   Anyway, Dr Watson agreed enthusiastically with my deductions and I now have a bottle or crimson and custard minibombs to assist my waving immune system, a caution against unwise excursions into the mountains and more concern that the stress may have aroused dormant histiocytes.  I get the blood tests back tonight.   

It’s amazing in a way how a non specific infection like flu can bring on the gamut of unexplained symptoms; the exhaustion, fatigue, depressing muscle ache, the anorexia and early satiety, the bowel aches and pains, shortness of breath, the lot.   It’s like the virus switches on a non specific pattern of illness not unlike that induced by trauma, grief or disappointment, the chronic loss of hope that erodes life force.  I didn’t hear from my daughters this Christmas.  Maybe that’s what’s got to me

I came across a lovely few lines by Emily Dickinson on hope

Hope is that thing with feathers,

that perches in the soul,

and sings a song with no words

and doesn’t stop at all.

Only that particular yellow bird had gone off to feed in another garden. 

Time to re-stock the feeders.

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I try to gain her attention.  ‘Hello mum.  Nice to see you.’  There is no response, then like a beast in a field, she gradually turns her head and stares into my eyes, a look of slow reproach tinged with confusion as if she knows she knows me but can’t quite work it out.  It’s like her slow memory of me doesn’t quite fit.  She has gone to another place; a place that I had put her, a place where I can’t follow. 

 With infinite sadness, she moves her head across, leans her head into the gap between my shoulder and neck.  I stroke her hair, silky grey,  washed and combed that morning.  She pulls away, looks at me for longer  – mum was always good at the long looks.  I meet her gaze, hold it, will myself to energise the connection  -   but her battery is low, the circuits  slow, faltering, missing.  Then a glimmer in the hooded eyes, a recognition.  A flash of panic.  ‘Too much, too much.  She looks down, puts a hand up to her face as if to weep, but buries her nose in it instead,  as if hiding from an intolerable reality.   After a while, she looks up again, makes as if to speak.  Perhaps, even now, there will be a meaningful comment, something I can console myself with, when her body has gone and the formalities complete.  I put my ear to her lips. 

‘I want to go to the toilet.’

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Mum is lying in a padded space, more like an open coffin than a bed.  Her bed clothes are down by her ankles, her best  dress that she created so carefully in happier times, is up around her waist revealing a loin cloth of  padded paper soaked in urine.  She crosses and recrosses her bare legs in a parody of orgasm.  She tears at her buttons.  Her eyes are wide with terror. 

I lean over her, kiss her forehead, look into her unfocussed eyes and say ‘Hello Mum.’  At that she turns and glares, reaches out with a claw and pinches my arm hard.  At 94, she can still hurt.  The litany pauses and changes,  ‘Please, please, please. Oh Nick, oh Nick, oh Nick. Unkind, unkind.’ It  breaks my heart to see her like this.  Hadn’t I promised never to let her go into a home?     

They bring her supper in and I try to spoon some soup into her mouth.  She swallows a few sips and then pushes my hand away as terror fills her eyes.  ‘No, no, no!’  I tear a morcel of egg sandwich and place it on her lips.  She opens her mouth and chews then spits the masticated pulp into my hand.  She takes a few sips of juice and then glares at me again.  No,no,no! 

A young nurse comes in, leans over her bed and asks me what she should do.  As if I knew!  Just be calm and keep trying.  At that mum reaches out and grabs the scarf she wears around her head and pulls.  ‘No, mum, let go.’, I say sternly but she just holds more tightly and tries to pull the poor girl into her coffin.  I distract her with more drink and she releases her grip. 

Mum has needed round- the- clock care for about a year.  It has worked well for most of the time.  She has been able to stay at home, she could eat, go to the toilet by herself, walk with a frame and she has slept for a bit most nights.  Things were stable, though she had occasional bouts of aggression in which she scratched and bit the carers.  Then her two main carers became ill.  Overnight, she refused to collaborate.   She insisted in going to the toilet unsupervised.  The inevitable happened.  She fell, lost confidence, wouldn’t walk, got a chest infection and ended up in hospital (see The Averted Face of Care, 5^th September).  By the end of the week in St Benedict’s, she was started to walk again, she was dry, feeding herself and ready to go.  But she could not be assessed to go home for another week and besides it was the weekend again and she needed a hoist so the carers could cope.   There was no alternative but a nursing home.  With a sinking heart, I reluctantly agreed. 

Perhaps I should have checked Silverdale out, but it was the one used by St Benedict’s and as I indicated to the sister, the plan was for a week’s further mobilisation and then back home.   Besides, this home was one of the most expensive in Sheffield, so, I reasoned that she would have the best chance of getting back home quickly.   But I was wrong. First impressions were that the home seemed crowded,  understaffed and functional.  There were thick carpets on the floor and that pervasive ferrety odour.  Mum was asleep when I arrived and when I came back later, she was being bathed.  I asked the nurse how she was settling in.  ‘Oh fine,’  was the answer.  Why is it that when people say fine, you just know it’s not.  What does FINE stand for?  Frightened, Insecure, Neurotic and Enraged.  Yes truly, mum was fine.      

So many people, including those who should know better like doctors, nurses and carers  make the mistake of thinking that just because a person cannot seem to think and express themselves, they don’t feeling anything.  No sense, no feeling, they say.   It’s not true.  Our cognition tames and makes sense of our feelings.  If we have lost our cognition, then we cannot deal with our feelings and we are left with the terror with no reassurances to calm it.   

I can only think that for mum it must be like being shut up in her own personal Gulag, deprived not only of  freedom but also of personal contact, suspicious of everything and everybody, terrified of what they might do to her,  subjected to sensory deprivation, extreme physical discomfort and the most degrading indignities every minute of the day.  Guantanamo was never as bad as this and yet old people are condemned to this every day in our own towns and cities.  No wonder they decline so alarmingly.  What makes it seem worse is that mum is such a private person,  so nervous of other people.   She and those like her, must feel the sheer terror, and yet there is nothing that she or anybody else can do about it.  She suddenly plummets to the next tier of system of care.  Some may ‘settle’, but the majority, I fear, never get over it. 

Don’t think I am complaining about any particular home or any staff.  I think most really do their best.  It’s the system, which seems to encourage a policy of organised neglect rather then care and rehabilitation.  I just feel the system is more concerned with insurance and health and safety regulations that are more about fear of litigation than compassion and care.  Elderly people have experienced rich, diverse, interesting lives. They are a rich resource of history and wisdom, not just a bit of old crumble waiting to die. They deserve more than to be institutionalised and subjected to such trauma.  People would be outraged if this happened to children.  And they would never, ever treat a dog like this.

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I went through to the bedroom.  Mum was half lying, half sitting on pillows, wild eyed, without teeth, without hearing aids or glasses.  I was shocked.  I put her teeth and hearing aids in, put her glasses on and asked Rosina to help me get her up.  She looked scared and refused.  ‘I’m not allowed.’  So I manoeuvred mum out of bed onto the wheelchair and wheeled her into the sitting room and danced with her onto the sofa,  where we settled down and thumbed through old photos of Bristol.  When the next carer arrived, I asked if they would change her pad.  Rosina looked doubtful but Joanne said ‘of course.’    Afterwards, as she was going, Rosina told me there was faeces in it and they weren’t allowed to deal with solids. 

Later,  Cheryl rang from the office and told me she had talked to the rapid response dementia team, the district nurse, the physiotherapist and they were all of the opinion that mum had to go into hospital.  ‘It takes two carers to help Doris onto the commode or to change a pad.  And they cannot deal with solid matter’. 

I sighed, ‘Health and safety.’ 

‘Nick you would not believe how many regulations there are these days.’ 

‘I would, Cheryl, I would.  But the bottom line is that if mum goes into hospital, she will die, and I don’t want her to go like that.’ 

I had visions of her waiting around behind a curtain in Casualty for hours and then being going  to a crowded and noisy admissions ward.  So I announced: ‘Why don’t I be on call, Cheryl.  I can call in twice a day to lift her.’  

‘But, Nick, you will need to be in all the time –  even through the night.  You will not get any sleep.  And how are you going to deal with her if she is incontinent of faeces?’

‘Well, I will just have to be less squeamish.  Can’t we at least try it?’ 

Mum had rallied with me there that afternoon and I didn’t want to abandon her now.

‘No Nick, I really think we have come to the end of the line.’

It had all started after the fall.  The carer had left her alone in the bathroom and gone into the kitchen to make breakfast when she heard a crash.  The doctor decided she hadn’t broken anything, but thought she had a chest infection.  He prescribed oral morphine, which I withheld because I felt it would hasten a slide into hospital. 

But now there seemed no alternative, so I telephoned the GP and arranged for mum to be admitted to a private hospital over the weekend.  Four hours later and the ambulance still hadn’t arrived.  ‘Oh, it’s Friday night and they will be out on 999 calls.’  Mum was exhausted and sinking, so I dialled  999. 

‘Oh no, squire’, said the paramedic, who was built like a rugby player.  ’Our rules are we have to take her to casualty at the Northern General and then they can take her to St Benedict’s after that.’ 

‘But she’s already got a bed in St Benedict’s.’ 

Eventually he agreed as a favour, but explained how much trouble he would get into if his supervisors knew.  ‘It’s not me squire.  It’s the regulations. You’ve just got to be so careful these days. But she’ll like it here.  They’ve got shower gel!    

St Benedict’s was quiet and peaceful.  Mum settled into a comfortable bed and went to sleep. 

The next day, they phoned me at 8.30am and requested a deposit of £2500.  I gave my credit card details and then asked to be put through to the ward. I was connected to the consultant, who explained with great grace that they had taken an Xray and would begin to mobilise her if there was not a fracture. 

But when I arrived, she was fast asleep and unresponsive.   They had not got her out of bed.  She had been incontinent overnight and she was not swallowing water.  

I talked to the sister. ‘We’re a busy ward.  There are surgical patients and children.  Your mum needs a lot of attention and it’s the weekend. I don’t have the staff.’ 

Can nobody help care for mum?  I have encouraged them to put up a drip and give IV fluids, they have catheterised her.  I know when meal times are and will go and try to get some of that delicious cottage pie down her. 

I suspect their attitude is to let her die with dignity.  That’s fine, but although she is 94,  mum’s heart is healthy and she is physically quite strong.  She needs the kind of 24 hour one on one attention the carers were giving her at home, but she will never get that in hospital.    In the meantime, they give her lovely food but she can’t feed herself,  they provide drink but she won’t drink it,  they prescribe mobilisation but the physio looks after the whole ward and doesn’t have the time to get her up on her feet and mum is too frightened. 

She’s now been in St Benedict’s for three days and there’s a change.  It’s like she has lost hold of her life.  When I arrived yesterday, she was slumped in a chair, desperate, pleading, ‘Oh please, oh, please Nick, pulling at the sheets on the bed, plucking at her drip, trying to sit up.  I put her hearing aid in and tried to communicate but when she responded, it was with half a sentence.  ‘I want to go …. Get me out ….. Nurses…… Toilet’ .   She recognised me, stared at me desperately before her eyes seemed to cloud and look away. 

I phoned the consultant.  ‘It will be a long haul to get her back to where she was before she came in, if she ever gets back.  Over the next few days, we will get her over the infection and try to encourage her to feed herself and walk, but I suspect this will take more time than we have got.   You will need to get her in to a nursing home.  

I guess mum had been on the brink for some time,  kept going by the constant round the clock attention of her carers.  It would only take a moment’s neglect; a fall plus the rigid application of  regulations and she was suddenly in a place where they couldn’t help.   I sense her terror.  I hold her and she quietens a little but as soon as I let go, she’s back in her own version of hell.   And what now?  She certainly can’t go back.  She will go to a nursing home.  They will keep her body alive , they will feed her, give her drinks, turn her, manage pressure sores.  I can only pray that her mind has  long gone by then,  she has released her fierce grip on life and resigned to oblivion.  

People say that the British have the best care system in the world.  It’s not true.  The boost in NHS funds may have enhanced the efficiency of health provision, but it has not improved care.  Care requires flexibility and compassion.  It takes human understanding to know how to work within the rules to provide what a patient needs.  All too often regulations lead to restriction and a withholding of care.    

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Maybe it was the tiredness.  Maybe my body was physiologically in a state of conservation and repair.  I’d stopped fighting or thinking.  I was just existing.   With the first few bouts of fever, the sensitivity of my scalp, the persistent headache, the shivering, induced a state of despair.  I was  delirious and repeating, ‘ Oh my God, Oh my God, Oh my God’, worryingly reminiscent of my mother’s  anxiety dementia.  But then I seemed to give up and accept whatever would happen. 

 Such states of body and mind correspond to Hans Selye’s  General Adaptation Syndrome (1936),  in which he documented a stereotypical responses to stressors of all kinds, physiological, medical and psychological.   They all, he concluded, tap into the same mechanism. 

The first response to a stressor is to fight it with the sympathetic nervous system; hence the anxiety, the pain, the shivering  but this gives way to a state of sweating and sleep; a state of conservation  dominated by the parasympathetic nervous system.  You see the same response in animals, whose ultimate response to overwhelming stress is to curl up in the corner of their cage and ‘play possum’.   But both people and animals vary according to whether or how quickly they exhibit which response.     

Post Traumatic Amnesia is a kind of dissociation.  It is a response to overwhelming trauma and could be thought of as a mechanism that protects the individual from the knowledge that would destroy their sense of self, like risk of death, abuse, or the collapse of a key relationship.   It is often associated with other aspects of the post-traumatic stress reaction, such as nightmares, bodily weakness, and a variety of somatic symptoms.   If you cannot remember or deal with what has happened, then nightmares and somatic symptoms often remain to express the trauma in coded form. 

So what is the mechanism?  But what is the mechanism?   The stress response not only involves the autonomic nervous system (sympathetic and parasympathetic), it also includes the hypothalamo-pituitary adrenal (HPA) system, which releases a cascade of transmitters and hormones (CRF, ACTH, cortisol, aldosterone) as a compensatory mechanism to offset the damaging effects of excessive and sustained  sympathetic arousal on the body.  The HPA system maintains the function of the organism in the face of overwhelming stress, maintaining energy supplies, damping down the immune system, suppressing inflammation and pain and blocking memory.  

So can it all be explained by activation of the HPA axis.   If so, why are Chronic Fatigue Syndrome and Alexithymia (the disconnection of the emotional and rational expression), which may both coexist as part of the post traumatic reaction, associated with diminished cortisol responses.   Does this represent a state of exhaustion or switching off.  There is never an easy response to anything. 

With a days of the Malaria being treated, the tiredness disappeared is.    I became frustrated with  being in hospital and although still weak began, to devise strategies for discharge.  The will to live had reasserted itself; what would have been the point of remembering what it was like?

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Cut into its surface.   A red black pulp like raspberry jelly oozes out and between the pulp are islands of white tissue, called Malpighian tubercles. 

The red pulp is composed of large blood spaces or sinuses lined with columns of cells.  The blood passes slowly though the sinuses and the cells filter it, destroying  bacteria, viruses, protozoa .  Similar arrangements of fixed macrophages exist in the sinuses of the liver (Kupffer Cells) and in the lymph nodes.  Together they comprise what is known as the body’s ‘reticulo-endothelial system’.  But the spleen also destroys tired red blood cells, worn out and dysfunctional after their 120 day journey round the vascular system,  recycling the haemoglobin to bile pigments and iron stores.   

The white nodules contain lymphoid follicles rich in B lymphocytes, which produce antibodies and sheaths of T lymphocytes, responsible for ‘hand to hand’ cellular conflict.  They are also major producers of monocytes, which are despatched to sites of injury where they transform into dendritic cells and macrophages and assist wound healing.  So both white and red components of the spleen are important parts of the immune system.  The same functions can be carried out in other parts of the body, but without a spleen, immunity is seriously compromised.      

In other mammals, the spleen is also an important reservoir of blood.  In the horse, 30% of the blood is stored in the spleen; in the dog 15%. Operate on a dog and you can see the spleen shrink before your eyes.  The spleen used to produce new red blood cells but loses that ability just before birth when that function is taken over by the bone marrow.   

Doctors have known about the spleen since ancient times.   It was, they thought, the origin of black humours, the source of melancholy (literally black bile) and hypochondria (below the ribs).   In the eighteenth century, women were often diagnosed as suffering from The Spleen when they were sad, bad tempered and out of sorts in mind, body and spirit.  Alternatively they might be said to be suffering from the Vapours (of the Spleen).   The term splenetic indicated that somebody was in a foul mood, though the same term in French meant sad and melancholic. 

So don’t ignore the spleen or provoke it, for if it ever gets ‘vented’, take cover immediately!

The little bastards that that bloody insect injected into me have swollen my spleen from 11cm to 15cm.  The insurance company seem to think it will explode in the low pressure environment of the aircraft cabin. It’s a solid organ, I insist!  Physics doesn’t work like that!  It’s enough to give anybody The Spleen!   

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But this illness was strange.   I know it’s cold here, but shivering that starts when you are sitting in  a warm room; the shaking that won’t stop despite going to bed in a balaclava and polar gear and covering yourself in layers of blankets; that’s not right.  And the headache, not so much a tension that twangs the muscles at the back of your neck or the throbbing nauseous pounding above the temples, but a persistent dull ache that makes your scalp so sensitive you can’t bear anyone to touch it. Then the sweating starts, the covers come off, and you have to get up in the middle of the night and wring out your cotton top and put it on the soapstone stove to dry.  

I’d been ski-ing the previous day.   A lot of falling over, frustration and swearing, but it’s a steep learning curve.  Did I really expect it to be any different on the first day?  I got very cold but lit the stove and put the heater on in the sauna.  Ah, what bliss to sit in the hot moist heat up until the temperature  was unbearable and then run outside, roll in the snow and then pick up handfuls and scrub down before returning to the hot room.   But is that what started it?  Did the exhausting day travelling, the frustrations and cold of learning to ski and the physiologic stresses of the sauna,  light up some lurking infection?  I was already harbouring a crop of cold sores.  Had something else lit up? 

It was still snowing when we awoke, light powder, blown by the wind into sharp edged slopes.  I cleared the veranda, relit the fire and generally tidied up before settling down to write.  Eero had cleared the tracks but it didn’t look inviting enough to go ski-ing.  Then about 11 o’clock, I started to shiver.  It was warm enough in the house, but my body felt cold.  The only thing to do was to get into bed.  The sweating came later that evening.  By the middle of the night my top was soaked.  What is going on.  There is nothing obvious to explain it. 

The next day I felt better enough to go ski-ing again.  I accomplished the push and glide movement and was even able to go downhill without falling over.  I skied down to the hut in the woods – such a special place.  Eero had skidooed a track along the river but the water was coming through in places.  Ice got into the ski clasps.  More delays.  I cooled down, but a simmer in  the sauna followed by a roll in the snow and another spell in the sauna  did the trick. 

It was not a good night.  My headache wouldn’t clear and I had a had to get up several times. In the morning, the shivering returned, followed by sweating.  It was late afternoon by the time the headache and fever receded, but I felt very tired.  So what was going on?  Why did the fevers seem to be coming every other day.  My God; it couldn’t be Malaria, could it?   The periodicity of the illness would fit and I didn’t taking the Malarone all the time in Indochina. I put the thought to the back of my mind and carried on.

I felt better the next morning and the outside temperature had dipped to minus 10.  The skis ran well though I was a little clumsy and fell a few times.  Upon reaching the Russian border, the headache and shivers returned.  I could not get back so phoned for a skidoo.

The paramedics were perplexed but agreed it might be Malaria, but it was Easter, I wasn’t unconscious and they wouldn’t get tests and treatment in north eastern Finland.  They left a bag of Paracetamol and advised me to drink plenty of fluid.  My urine was a very strange colour – fluorescent orange. 

Another sleepless night with headache and fever and I’d had enough.  At Kajaani District Hospital, they plated out a blood film and confirmed the diagnosis, but had to send me further across the country to Oulu University Hospital for treatment.

But Malaria? How?  I came back from South East Asia six weeks ago.  Why did I not get it out there?  Why has it come on now?   And how did I get it when I was taking prophylactics.  The last is easiest to answer.   I had agreed with the practice nurse that I only needed to take Malarone in the high risk zone and since it was not the rainy season, this was Laos.  But I also went to the jungle in Cambodia – down near the coast in the Cardamom Hills.  And there I know the buggers got me!   So was I just too fit and eager for them to get a hold then?  Did they lurk in wait somewhere in my reticulo-endothelial system until that unique Finnish combination of exhaustion and physiological stressors made them sit up.  ‘Hey, guys, it’s the sauna again.  Now’s our chance!’    

What did I know of Malaria before this?   I had learnt about it during the medical students course on Tropical Medicine I took at the London School in Keppel Street, but that’s book learning – absolutely no substitute for the real thing.  And then there are all those films where the hero, crossing Africa, gets Malaria but is saved by the care of the local tribes.  Mind you, travellers in Africa were given a concoction of Senna, Cascara and Julap, called Livingstone’s Rousers , to take for ‘everything’.  This was commonly acknowledged to be the source of the term, ‘The White Man’s Burden’.  But Malaria isn’t a romantic or even a humorous condition.  It’s a multi-system disease.  The little bastards get everywhere.   They invade the blood cells then explode them.  This releases haemoglobin which can clog up the counter current system in the kidneys and encourage the platelets to aggregate in the blood.  These mini-clots can then lodge in small blood vessels particularly in the brain where they can cause oedema, tiredness, psychosis, dementia and coma.   The parasites invade the spleen, the liver the gut, the lungs and everywhere they and their destructive debris lodge they set up inflammation.  So Malaria can result in multi-organ failure.  They used to say that a normal healthy person could stand only five bouts of fever before systems would decompensate, mechanisms run down.  That’s why I became so anxious when on my fourth bout, they kept me waiting in Oulu Triage for 7 hours before seeing a doctor.     

It might seem strange that for one of the most serious diseases, we are still using traditional treatments.   Quinine, in various derivative forms,  is still the classic treatment for Malaria.   It comes from the bark of the Cinchona tree, which grows in the Andes of South America and is named after the Duchess of Cinchon, the wife of the governor of Peru, who became ill with malaria 350 years ago, but who, after drinking a sample of infusion of drink of tree bark in water, made a full recovery.  The Jesuits spread the name of Cinchona’s healing properties throughout the tropical world, but it affected the ears causing slight deafness and tinnitus – the song of the Jesuit.   The Indians used to take quinine as tonic water.  Englishmen still enjoy a G&T on hot summer evenings. 

 Artemesinin comes from a Chinese tree.  In the year 341 AD Mr T Heng published a book on the treatment of medical emergencies in which he recommended the use of the medical herb Qinghao  from annual or sweet Wormwood for the treatment of fevers.  But it wasn’t until 1972, when Chinese scientists extracted an active principle with considerable anti-malarial activity called Qinghaosu.   

In Northern Laos, they use the tuber of the Tarot plant.  They boil up the milky flesh and drink it.  At first, it tastes sweet but when the mouth starts to itch, they know the parasite is gone. 

Each to his own.  They gave me Quinine intravenously then switched it to Artemesininin, which seemed to do the trick.   

Today, the pieces of this puzzle fell into place.  The consultant arrived in some state of animation.  ‘We have the answer.  You have Vivax Malaria.  Plasmodium vivax can have an incubation period that can vary from 17 days up to as long as a year.   It is a milder disease than falciparum but cannot be completely eradicated.  It can lurk in the liver for years, though apart from a tendency to tiredness,  does not cause undue debility and any flare ups can be promptly treated.   The enlarged spleen is a bit of a risk but should go down.

Bloody ‘ell!

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It was like a metronome, every second.  Simon worked out that at this rate, she would say oh dear, 3600 times an hour,  up to 50,000 times a day,  15 million times a year.  But the mantra had some more intense variations;  ‘oh no,  oh no, oh no’ or just ‘no, no, no no’, and worse still, ‘oh please, oh please, oh please, oh please’ and then ‘oh Nick, oh Nick, oh Nick’  Anybody listening to this would be bound to think, ‘Whatever is he doing to that poor woman?’ 

Every so often she would stop and ask where we were going.

‘We going to Chatsworth mum. You know to my cottage’ and I’d make a motion with my hand as if to open the latch. 

‘Chatsworth.’, she’d say puzzled and then she would get it.

‘They brought the lambs in.’ 

‘Yes that’s right.’

‘What are we going there for?’

‘We’re going to have tea; turkey sandwiches, Christmas cake, mince pies.’

‘You going to leave me there.’

‘No, of course not.’

‘We’ll have tea and then take you back home.’

‘Home?’

‘Yes, to your flat.’

‘My flat?’

‘Yes, number 9 the Woodlands, Shore Lane.’

‘Do I live there?

‘Yes.’

‘And then you’re going to leave me to walk?’

‘No!’

And the litany would all start again, ‘oh no, oh no, please, oh please’.

It is all very tiring.  Although I am not doing anything awful to her, it feels like it.  The reality is that her life is dreadful. She has lost her identity.  She cannot remember anything from one moment to the next and so everything is alien to her, confusing. She  doesn’t know where she is or what is happening. 

And so a pleasant drive in the country is torture to her.  She has been taken out of her environment along roads she can barely remember to an unknown destination for no clear purpose.  And because she has never really been able to trust that things will be allright, she fears she will be abandoned and never find her way back.  It must be terrifying. 

When the Red Army invaded East Prussia in the winter of 1945, millions of people were forced by fear of murder and rape to flee their homes and join the columns of refugees escaping in sub zero temperatures towards the west.  That was their dreadful reality.  They didn’t know where they were going or why and many died on the way. Mum’s world must seem just as threatening.  She does not know where she is, she has no home and she sees confusion and danger everywhere.  Sometimes when I have to repeat the same facts to her for the twentieth time, it is important to realize that this an anchor point, however ephemeral, in a devastated world.

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If thou hast a heart

famed for tenderness and pity,

contemplate this spot.

In which are deposited

the remains of a young lady,

whose artless beauty, innocence

of mind and gentle manner

obtained her the esteem

of all who knew her.

But when nerves were

too delicately spun

to bear the rude shakes

and jostlings, which we meet

in this transitory world,

nature gave way.  She sank and died

a martyr to excessive sensibility.

Mrs Sarah Fletcher,

wife of Captain Fletcher,

who departed this life

at the village of Clifton

on the 7^th June, 1799

in the 29^th year of her age.

May her soul meet that peace

which this earth denied her.

Sarah committed suicide.  Her ghost was said to haunt the house where she lived. Her tomb is in Dorchester Abbey, Oxfordshire.

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When I was a physiologist,  I used to ponder the cause of the sensations I felt in my body, the reactions of my gut, what is was about feeling sick that made me yawn or sweat, why a headache made he muscles on the back of my neck sore.  I even thought of writing a book of such observations, but like so many of my grand ideas, it ran into the sand trap of time and was forgotten. 

Now the pain protecting the healing bones in my back offers a whole new insight on life.  What I originally took for granted, didn’t think about, is suddenly, painfully brought to mind.  I have to be careful how I walk.  Keep the back straight, let the feet do the work, keep the head up, swing the arms for momentum but not too vigorously.  It’s amazing how much we use the trunk, the back, to add fluidity to our walking; the constant balances and adjustments that occur at every step.  All of these are now forbidden.  The back has to be locked rigid, the damage protected in a rigid case.

Lead off up the stairs with the left food not the right.  Any sudden movement with the right foot, brings on a spasm of pain that makes me cry out.  Use both arms to support when sitting up.  Don’t bend the back; reach down for things by using the knees.  Keep the back straight at all times. 

Breathe deeply and evenly and try not to cough. Coughing is so painful. The sharp contraction of diaphragm and intercostals jerks the wound, dislodging the broken ends of bone and creates an anguish of spasm.  A chest infection is the most dreaded complication of broken ribs.  Secretions collect in bruised tissues and can easily become infected.  The cells lining the bronchioles and bronchi have a carpet of cilia, tiny hairs that beat in waves wafting the secretions upwards.  But this ciliary escalator can only get secretions as far as the trachea, if that.  There they collect, tickle and have to be coughed up.  Try to suppress the cough reflex, grunt to move the collection and move the phlegm into the pharynx, from where it can be swallowed. 

Just as you use the knees to reach down, let your colon do most of the work in defaecation.  Learn to relax and take your time.  Think, evacuation – a bit of self hypnosis.  Imagine your gut like the M1 with the traffic flowing evenly smoothly.  Breathe deeply, allow your colon to ease, squeeze the plug of waste down until it is in the firing position.  Allow the sensation to build until, almost like orgasm, it demands release.  And then just a small graded increase in abdominal pressure will hopefully expel it all in one shot. 

Sorry to go on about it so much, but if you’ve hurt your back, constipation can become a real torture.  Take plenty of fibre, fruit, drink syrup of figs or prune juice, take a dose of lactulose every night, add a senna – do what it necessary to keep the contents of your colon soft, but not too much that they are liquid and urgent – you don’t want to be caught short.  Remember you can’t hurry, even if your bowel wants to.  Adjust the dose so your faeces are soft and pliable, then you can relax and let peristalsis do most of the work.  So  take your time. Remember, laxative and relaxation have the same derivation.  The ancients knew it.  So should we! 

But there is one thing you cannot always prevent.  It sneaks up on you when you are relaxed, catching you off guard, tearing into your back and causing the most intense spasms of pain.  That is emotion!  Not any emotion, but the sudden surges of anger and laughter. 

Emotion takes over the control we exert on our lives.  It demands expression, satisfaction.  Grievance, loss, depression can make it impossible to think of anything else.  The chemicals flood the brain, controlling our thoughts and movements, distracting, preoccupying,  obsessing with the same insistent thoughts. There can be no escape.  

The same happens with acute spasms of emotion.  The quick floods of chemical catch you unawares.  An attack of frustration while climbing the stairs can cause you to forget, lead off on the wrong foot, unlock and leave you hanging on, wracked  with the most intense pain.

And laughter, the repetitive contractions of intercostals, the inescapable build up of tension as you try to stop laughing, is murder. You can die laughing or it seems so.  The ridiculous can stab you in the back.  Avoid it at all cost.  Turn your face and your back to stone – for the time being anyway..              

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