Sunday 31 March 2019

7) From My Side - funny that (c)

The challenge with C and K, the speech therapists, is to control the giggling.  It's tricky to talk when you are laughing.  Today Liz was to have a video fluroscopic swallowing examination (VFSE) to observe her swallow, and help the therapists decide how safe it might be for Liz to begin to drink water and eat.  They went into the X-ray booth with Liz under strict instructions not to laugh.  Liz was trying hard to keep a straight face, but then K appeared wearing a camouflaged lead lined jacket with Dr AHMED written across it.  The absurdity was too overpowering.  We mused that for the therapist, this situation is completely normal.  For others it is a strange comic world.

Elizabeth was sent about 80 cards over four months.  These wonderful offerings of love and affection where hung by Joanna on strings around her bed, like washing on a line.  When Minal called in to see Liz, she saw the cards and said, "Oh, I should of brought a card."  Liz replied "I wouldn't bother- look I've got loads."

In the evening Elizabeth's nurse came round the ward doing the observations.  It is part of the ritual on every ward.  The nurse asked Liz if it was a convenient time to take her blood pressure.  Liz said "Sorry, not now, can't you see I'm busy."  (She was playing Candie-Crush on her friends tablet.)

Liz was finally told she could move from pureed food to 'soft solids'.  This meant rice, and and exploration of the Caribbean menu.  Liz found that the Caribbean menu and Kosher menu were superior to other menus.  The chicken came with (shock, horror) a bone.  Behind Elizabeth's bed was a sign stating what Liz could eat.  For some strange reason the sign said 'no soaked bread'. That sign didn't last long however.

When Elizabeth arrived in Leicester she had a number of fittings from Sheffield attached to her.  A trachy, and her PEG feed.  These were viewed with great caution by the Leicester staff.  While on ICU in Leicester, Elizabeth's chest infection resulted in such a strong cough that she coughed out the trachy in the night.  It was with a great sense of relief that the doctors removed the Sheffield trachy and fitted a good standard Leicester job.   They had found fitting Leicester equipment to the Sheffield interface very stressful, and pipes regularly came adrift.  The Peg too presented it's own challenge.  Liz had to have an endoscope so that the doctors could see what had been fitted into her stomach.  It was a fine day when she was at last free of all appendages.

Being one of the constants on Bay 2, the staff relied quite heavily on Liz's eagle eyes.  Liz knew which of her elderly compatriots on the ward had had their medication.  She challenged M when she tried to get out of bed without nursing help.  Liz pointed out that she was now part of Baywatch.

Pooja came to visit Liz.  She said to Liz that she couldn't wait to tell her some of her gross stories for working in Primark.  Liz said 'I've got lots of gross stories too, there are mostly to do with poo.  Pooja said "same! my stories are to do with poo too."

Saturday 30 March 2019

6) From My Side - Funny That (b)

On a warm autumn morning, we sat with Elizabeth on the patio at the back of the ward.  This area was developed long ago to ensure patients receive a lot of fresh air, a curative I still support.  A nurse but her head of of the door and asked is any of us had seen 'M'.  M was the most able patient on BIU, and was able to walk around on his own.  He sometimes came out onto the patio to smoke, but always accompanied by a nurse.  Elizabeth had seen M come out and said 'he went that'a way'.  The nurse hurried in and a second later five nurses rushed out.  On of them called security.  There all headed off in different directions.  As we guessed, M was on probation, though this was supposed to be confidential information.

On Elizabeth's last day on ICU, a good friend and her two daughters visited in the evening.  The younger daughter was not feeling too well, and after a while asked to leave.  I went with her out to find some fresh air as she was feeling faint.  The the corridor she fell to her knees and slumped on the floor.  She explained that she didn't like hospitals and was feeling light headed.  A nurse noticed and within seconds they had jumped into action.  She was ushered into a side room and obs were made (blood pressure, temperature, heart rate.) She received excellent nursing care that evening- couldn't have been in a better place.

As Christmas approached on BIU, there was great excitement about the growing generous prises on offer in the Christmas ward raffle.  We, and other visitors bought our tickets.  One time we visited Elizabeth we had to wait while a nurse helped her with a bed pan.  The curtains were drawn and the nurse carried out a brimming bowel of warm urine.  "Why not put it in the raffle?" Elizabeth called out.

From university tutorials to 'Communication Group' - what are contrast.  When Liz began to be able to speak again a number of people asked if she was Welsh?, or French.  In the group Liz was told of for giggling too much.  She found that she was surrounded by people with serious brain injuries, but unlike her, these had affected memory.

With the date of the BIU Christmas party drawing close, the pressure was on to sell as many raffle tickets, and 'guess the name of the dog' tickets as possible.  Liz went with J into the canteen where they touted for business.  Liz called out "Guess the name of the dog......guess my name."  It all became very confused.

Our friend James visited Elizabeth on the day she moved from BIU to NRU.  The staff made a guard of honour by the door, and Elizabeth left in her wheelchair with James pushing her.  She got a warm welcome at NRU.  She was offered a cup of tea by the housekeeper, which was very kind, except she was still 'nil by mouth', being PEG fed.

Nearly all of Elizabeth's therapists were excellent.  One that stood out as not that spent nearly all of her allotted time with Liz trying to work out how to put the breaks 'on' on her wheelchair.  This was extraordinary for someone who works with disabled people everyday.   In the end she did a youtube search for a demonstration video.






Sunday 24 March 2019

5) From my Side - Funny that (a)

Elizabeth had to, once again, get to grips with control over her bladder.  This time it was by herself.   One day on BIU she was having to spend ages on the bed pan.  The curtains were drawn.  Quietly she waited.  Then Charlotte her speech and Language therapist put her head round the curtain and asked if they could do a session.  After fifteen minutes, she left.  All that time Liz had been on the bed pan.

One day after some patient waiting, Liz gave up.  We came back into the room to be with her.  I had a large parcel from Auntie Mary in America to open.  Inside were 'T' Shirts for all of us with 'Team Elizabeth' on them.  We laughed with delight, ...and Elizabeth was able to pee.  Shame bed pan was not there this time.

Elizabeth remembered all the strange sounds from Sheffield NCC.  When she was able to speak she gave us a noise sample from the ward, including her neighbour's loving husband B calling out to his wife, and singing songs.  "M, can you hear me M.  It's B here by love."

On the 31st of October, J, one of the nurses on BIU who shared Elizabeth desire for fun, took a hospital sheet and cut eye holes in it.  She put it over Elizabeth and they set off at break neck speed around the hospital with Elizabeth going "Boo", in a gentle, 'cork popping' voice.  C, Liz's Speech Therapist, said Boo was a good sound to make.  Very therapeutic.

When Elizabeth moved from Intensive care to BIU we discovered one thing was left behind.  In Sheffield Liz had been given her diary, which staff, visitor and family had filled in every day.  One on had told us that there is a protocol that comes with the diary.  As the record contains 'traumatic events', it is classed as a medical record, and can only be given to a patient after counselling has also been offered.  We understood this, it sounded like a caring and protective approach.  However I think for the staff , this was unknown territory.  We were their first family to use a diary (being from Sheffield).  When Margaret and I went to Intensive care, we waited 30 minutes, then we were ushered into 'the bereavement room'.  This room is nicely decorated in complete contrast to the normal waiting room.  I wondered if we were to be told that the diary had died.  But no.  I thin the ward sister was concerned that we would be upset that we could not have the dairy.  Once the rationale was explained we understood immediately and there was no problem.  We all breathed a big sign of relief.

When Elizabeth started to breath independently from the ventilator, she was able to have a cap fitted over the traccy valve.  A big sneeze could send this cap flying across the room.  Elizabeth was also able to start to discover what was left of her voice.  Up to this point we were using a letter chart to spell out words and converse.  Elizabeth said something that was clearly very important, but we could not just get it.  After a number of frustrating attempts, we reverted to the letter chart.  The word was "wahoo".







Saturday 23 March 2019

"Putrid"

Thérèse Raquin

Described as 'putrid' by Le Figaro in 1868, this is my take on Emile Zola's story.

Beautiful orphan, Therese, a pawn, 
Trapped, embittered, imprisoned, lovelorn.

Laurent, self-seeking, cankerous, stultified
Fatal attraction, evil - personified.

With Madame Raquin, a trio met well,
Locked together in their own living hell.

A putrid, soulless, narrative plot,  
Echoes a voice "out, out, dam spot"

The consequence of evil is derangement we find,
With us, the reader following surely behind.





Tuesday 19 March 2019

4) From My Side - what the doctors said

Well, they haven't said a lot, which is probably the right thing to do.  I was impressed with Dr B, the neurologist over the first weekend at the Royal Hallamshire.  He was able to communicate well with Elizabeth.  He noted that she had been fully aware of what was happening to her when the haemorrhage occurred.  He was aware of all her ability, especially how she could communicate.  We noted how the doctors and nurses, even though Elizabeth seemed very unwell, directing their gaze and conversation to her, and not her parents.  Dr A, who was clearly a lovely man, did shout at Elizabeth, which was not necessary, because her hearing has been completely unaffected.  Dr H assessed Elizabeth's eye sight.  He noted that the muscles in her eyes were quite severely affected.

We understood that from the initial scans of Elizabeth's brain, that a bleed had occurred in the pontine area of the upper brain stem.  This is where a mass of neurological fibers travel to all parts of the brain.  Every muscle that has voluntary control via the brain was affected, but particularly on Elizabeth's left side.  Even in the early days though, Elizabeth's physios felt that they could detect vague movement in her left side, which was encouraging.

The conjecture was that there may have been a cavanova, or group of capillaries, in that part of the brain, where a slow build up of blood had been occurring, leading to a rupture.  We had some conversation about where Elizabeth's experience of the skin condition Coup de Sabre, facial scaring caused by a a manipulative autoimmune response, similar to psoriasis,  may relate to the haemorrhage.  Way it the course of the injury?  Was it a consequence of the injury, the bodies way of reacting to a problem it detects but can do nothing about?  Or the worst option, did the medication Elizabeth take to inhibit the Coup De Sabre scaring actually weaken her internal brain vessels?

The doctors we spoke to all felt that the last explanation was very unlikely.  The fact that Elizabeth has two very rare conditions did indicate that their might well be a connection between the two, but we do not know the causal link.

So the doctors say very little, and the nurses and therapists do all the work, and we are grateful, because they are all doing their jobs well.

Saturday 16 March 2019

3) From My Side - The first week

We were introduced to the Intensive Care 'diary'.  A charity called Neurocare provides each patient with a diary which can be used by staff and visitors to make a record of time in NCC.  The diary starts with H, and D, a student nurse, chatting about their care of Liz in the early days.  Margaret and I started writing on the 24th September.  We recorded the many visitors who began arriving.  On the Monday we realised that after the joy of seeing Elizabeth survive, and come out of sedation, there was still a long bumpy road ahead.  Elizabeth acquired a chest infection.  It was standard infections taking advantage of her weakness.  The secretions in her chest became intense.  Numerous times in the day a nurse was required to lower a suction pipe down into her chest to clear the phlegm.  Elizabeth became listless and lethargic.  She found it an effort to lift her right arm, and had her eyes closed most of the time, drifting in and out of consciousness.  We were also painfully aware of her discomfort.  Liz was unable to move nearly all the muscle that are controlled by conscious effort.  This included her tongue, and facial muscles.  She was thirsty, yet could not drink.

Elizabeth was visited by her grandmothers and aunts.  Her pastor from Sheffield, and ours from Leicester visited.  One of Elizabeth's closes friends Anna, was on her university year abroad, along with her two past flatmates, Tash and Mary.

Elizabeth's Leicester friends all came, something they have maintained.  The list is now at 158 different visitors.  many have visited Liz in Sheffield and Leicester too.

Our good friends Tom and Ellie fixed it for us for Joanna, Margaret and myself to lived in Ellie's parents house, which, when the traffic was calm, was only twenty minutes drive away from the hospital.  This was a wonderful gift, because it also came with the bonus of Ellie's Aunt, Pat.  Pat was very experienced in supporting traumatised families as she had been a Hillsborough volunteer, supporting a bereaved family after the tragic accident killed many Liverpool and Sheffield fans in April 1989.

Loxley became the place we were able to retire to in the evenings and relax.  I found that getting up early and walking in the nearby countryside was a great blessing.  I met local people and chatted with them, including Dhilar, an Iraqi Kurd, who owned a local corner shop. I enjoyed buying local produces like milk from 'Molly Cow', and oven bottom buns. See https://parentsguidetopets.blogspot.com/2018/10/learning-about-loxley.html for a description on our time in Loxley.  Also https://parentsguidetopets.blogspot.com/2018/10/the-names-of-most-charming-of-world-no.html for my thoughts on Thomas Haliday, a historical figure from the Loxley valley.

Helen and Nigel, the owners of the house we stayed in, were living in Scotland, having recently retired.  Nigel had worked as a GP in Sheffield for many years.  I enjoyed borrowing his A to Z map and noticing that he had ancient post-it notes saying things like, "26, Almond Cres.   Mrs Brown, chesty cough, week heart."    Nigel also taught at Sheffield University and represented GPs on the BM, visiting almost every country in the world.  Helen was a historian at Sheffield University.  Her sister Pat looked after us, but we were able to meet Helen just before our time in Sheffield came to an end.  We shared a meal at the Admiral Rodney, a local pub in Loxley.  Helen showed me some of the books she had written about local history, which were fascinating to read.

We developed a routine.  Both of our work places gave us great support and we were off until half term.  I woke early and went for a morning walk, exploring the edge of Sheffield as it heads into the Peak District.  Just before eleven am we headed off to the hospital, up the notorious Hagg Hill, a hill all Sheffield cyclists know well.  We were able to park in the hospital multi story car park most of the time, but there was a fierce completion for the spaces, which  also included parking next to pillars which required expert skills in parking and squeezing through tight spaces.  We were able to get a parking permit reducing the cost of parking considerably.  Sometimes we parked at a local pub called the Francis Newton.  From the car park we walked into the outpatient department, under the road and into the Hospital building, past the chapel, with it's open doors and empty enticing space.  From here we had the eleven stories to ascend.  Once the lifts must have been the pride of the building.  Twenty lifts, and a small tight staircase, there almost as an after thought.  Now the lifts were quite alarming, with only two or at the most three working.  Once when we were there, a lift stopped, the doors opened, and the door was four feet above the floor level.  We witnessed a strong man lift down a frail old lady with a stick.  We entered one lift as a roller from the doors fell off and crashed to the floor.  No one was hurt.  I reported it to a nurse and we completed an online risk assessment.  This evidently lead to an official apology from a weary handy man who had obviously been battling with these lifts for many years, and was resigned to failure.  I thought of a lion tamer at the zoo who's lions would not do what they were told.  See https://parentsguidetopets.blogspot.com/2018/10/story-on-stairs.html.

We realised that we would need to break up the days, and ensure that Liz got a rest from us.  Also Joanna took charge of making sure she received the right number of visitors to match her energy levels.   Liz was consistently lovely to her visitors.  The care Liz received was exemplary.

Friday 15 March 2019

Indeed - Candide

Voltaire, up for controversy, had a few spells in the Bastille before moving to Wandsworth, London.  He was feted by George I and met Jonathan Swift.  lived in the Prussian court of Frederic the Great. But he published Candide (or The optimist) when in Paris in 1759. 
This 'parabolic' journey through an imagined world is fascinating.  It reminded me of 'Swift' satirical writings.  It is cutting and brutal, full of wonder and coincidence.   Candide meets bonny Prince Charlie in Venice.  He ends up living a quiet (well, married) life in Istanbul.
Candide's journey around the world.
(He even speaks of traveling to China.)

Thank you for this public service.
 Pangloss- ever faithful to the doctrine of "This is the best of possible worlds", has his theories tested to the limit as events unfold, like the 'flap of a butterfly's wing' as fractured in Chaos theory.

The moral - (if there is one) - is to live as a farmer in an imperfect world with the ones you are faithful to, (even when the gloss has worn off).  For more listen to In our Time with Melvin Bragg 



Wednesday 13 March 2019

2) From My Side- Royal Hallamshire

The following day Liz was given a place in the Neuro Critical Care ward on the 11th floor of the Royal Hallamshire Building close to the Sheffield University site.  The nurse told us that Elizabeth would be taken by ambulance between the two Sheffield Hospitals.  He reassured us that the journey had been assessed as safe for Liz.  When we go to the Neuro Critical Care ward, we discovered that there was a room with our name on the door, set aside for families in shock.  This was a ward where most visitors are vulnerable and upset.  This was part of the skill of the staff, to care for families, friends and patients.

Elizabeth came round from the sedation and we went in to see her.  I will never forget our first contact.  Liz could was pleased to see us.  She could move her right arm and pointed with it to her left side.  There was such a look of despair.  Her eyes said it all.  "Look what's happened to my left side- I can move it at all."

Liz was in a high tech bed.  She had a bank of monitors measuring her breathing, heart rate and blood pressure.  The beeps became a familiar  accompaniment to the ward atmosphere, which was otherwise calm and subdued.  The peace might be broken by someone in the neighbouring bed trying to pull out canulars or feeding tubes triggering a riot of noise.  This was a mark of the confusion faced by people with brain injuries.  Elizabeth was not in this position, though she was put in a 'boxing glove' over night occasionally to prevent her for pulling out a tube.

Elizabeth initially was interbated with a breathing tube.  The sophisticated machinery ensured that Elizabeth was able to use her lungs to breath, but supplied the right volume of oxygen.  The challenge for the body is that if the machine did all the breathing, the body would say "thanks, very happy for you to do it", and the diaphragm would thin and weaken as a consequence.  No easy life on NCC.

Liz also had a number of canulars fitted.  On in her neck was positioned in case the need of  an emergency injection to start the heart.  She also had a nasal gastric tube feeding her though the night straight into the stomach.

On the first Sunday Elizabeth seemed to have a surprising amount of energy.  She could not speak, but we were able to communicate with thumbs up and down.  She even attempted to write with right hand.  The letters were indistinct but eventually we made out the word Jesus.  When we got it right there was a sense of relief all round.  Later Elizabeth explain how she had decided that she had wanted to write 'There is a balm in Gilead.'  Where were not going to get it.  It was a song on her mind at that time and 'Jesus' was what she was on about.  She was not showing any fear, and waved up off when we eventually had to leave that evening at 7pm.  What a day.  Elizabeth was settling into life with one-to one nursing and intensive medical support.

Tuesday 12 March 2019

1) From My Side - What happened on the 22nd of September

Elizabeth went up to Sheffield University a week early to help welcome International Students.  Before her, her last year of an English Literature BA.  Dorothy, Min and Elizabeth had planned events with something called 'International Cafe', which aimed to provide a fun social club for international students at Sheffield University. Margaret and I had helped move her into her new student house in Steelbanks with her good friend Adam, and two other students who they recruited through an advert.  Elise had just spent a year in South Korean, studying the language, and Alex was an aeronautical engineer from Portugal.

Meanwhile in Leicester, Joanna was preparing to start at Royal Holloway College, London University.  Margaret was to take Joanna to her accommodation as I had a prior commitment to prepare a charity fund raising walk in the Quantocks with my Godparents.  The Watsan Walk for Water will take place in June 2019.  The weekend of the 22nd of September was an extremely wet weekend, but we walk in the rain anyway, like true Brits.

The Quantock are a secret part of rural England which I knew from a childhood scripture union camp.  As a 12 year old, I did not stay at Greatwood, the centre Watsan will use, but my sister Frances has done so a few times in her youth. I knew that Greatwood is a small gem in Somerset, surrounded by forests, hills and high moorland.  It is also isolated from any mobile phone signal.  The first inkling I was to to get that something was wrong for Elizabeth was on late Saturday afternoon.  Our walking party pulled into the rented cottage we were staying in.  Ian, my Godfather, had just been off to collect his car which had been left in a car park nearby.  On the way he accidentally strayed into mobile phone reception and picked up a What-sap message from his son Jonney.  The message said that Frances had contacted him to say Andrew was to make an urgent call to Margaret as Elizabeth was critically ill in hospital.  I asked at a neighbouring house whether I could use their landline.  I got through to Joanna, who was with Margaret.  They had received a call from Elizabeth's flatmates to say that Elizabeth had had a brain haemorrhage and was in the Northern General Hospital, Sheffield.  Margaret and Joanna were on their way to Royal Holloway and had almost reached it, when their call came through and they had done a u-turn, with the car still laden with all of Joanna's stuff, had headed right back up the motorway.  Royal Holloway was forgotten.

Margaret spoke to a doctor in Sheffield who told her that Elizabeth was sedated and in Intensive Care.  She had had a hemorrhage in the pontine area of the brain stem.  Her situation was critical and we were warned that her life was in the balance.

For the last 9 months, Elizabeth has had occasional migraines with sickness.     These have been very unpleasant but she has coped uncomplainingly.  In the summer I recall seeing Elizabeth seated at our dinning table.  She was happy and relaxed, but I remember feeling that her skin looked gray.  It made me feel uneasy.  Elizabeth has challenged my ruminations and has pointed out that migraine and sickness are very common, and not normally seen as sinister omen.  However I has noted that other people with similar experiences have spoken of  earlier experiences of sickness. Takahashi et al (2015) - Journal of Dermatology.

One of my kind friends from the walking party elected to join me on the journey to Sheffield.  This was a spontaneous generous act. However I note that I was calm, and think I would have driven safely on my own.  His company with me was one of many many acts of kindness we were to receive, and still do.

On the way up in the car my phone rang as the news got about.  Messages of support and concern came through.  I remember the challenge of having a phone ringing on the motorway, where my security swipe code meant my friend could not operate the phone.  We managed somehow, and he held it as I spoke on speaker phone. 

Margaret has asked her sister, Ruth to go immediately to Elizabeth.  She was the first from our family to get to A&E.  She found three of Elizabeth's friends in the waiting room.  They were unable to see Elizabeth because they were not family, and had no information about how Elizabeth was.  We were very impressed that they had somehow hacked the phone system to find Margaret's number.  We continue to be grateful for their love and care of Elizabeth which continues.  It's a bit of Elizabeth's private life that has become part of our lives too.

As I arrived in in Sheffield, the first thing to do was to drop my traveling companion at the  Train Station so that he could continue on to York.  It was dark and I did not have a satnav.  I was not sure how I would find the the Northern General Hospital.  My friend went up to a couple in a car and asked them for directions.  They indicated to me to follow them, and said they would escort me there.  Then at breakneck speed, I tailed their car though a complicated network of roads.  Once at the hospital they took me to the entrance of A&E.  This was particularly necessary as the Northern General Hospital is well known as a city in itself.  At the entrance of A&E I asked a security guard to show me the way to Critical Care.  He cheerfully took me to the entrance of a large ward.  I went in, and was surrounded by sick patients and very busy nurses.  It was surreal, like entering a strange dream.  Eventually one was able to come to me.  "Which Critical Care was I after?" the nurse asked, "we have three." I didn't know so she logged on to her computer and we traced where Elizabeth Starr might be.  Eventually, and it seemed like it took an age, she found Elizabeth's records. I suddenly had a pang of panic.  Here I was suck in the wrong Critical Care and my daughter was dying.  I felt helpless.  The staff were great.  They had seen despair before, and calmed me down.   Of course the ward Liz was on was quite some way away, but for the second time that evening, I followed her brisk strides, across the building, over connecting bridges and over to the other side of A&E.  There I found Margaret, Joanna, Ruth, Emma and Sarah.  There were all camped out in the A&E Critic Care waiting room.  We when through to see Elizabeth.  Liz had one-to-one nursing.  She was being ventilated, and had masses of electronic equipment about her.  It reminded me of a science fiction film.  The lights were low.  Elizabeth was in an educed coma.  She looked peaceful, and I got a strong sense that she was alive, and was going to live.

With Margaret and Joanna, I was struck that each one of us, independently of each other, was ready to say good bye to her.  We were all calm, thought in deep pain.  I was struck that everything was fine between us all.  There was no unfinished business.  A few weeks before Liz and I had gone out for an evening walk.  Liz had wanted to hold my hand.  She often did this not caring at all who might see.  We had just walked together, not saying much, but at peace.  It struck me that if this was the time for her life to end, then so be it.  No one knows how long we live.  In the West we presume that we have a right to live into a fun and gratifying retirement.  But in other countries people are not so presumptuous.

That night Ruth, Emma and Sarah slept in the waiting room.  Margaret, Jo and I were given a room in the junior doctor's quarters.  We found a mattress in the corridor, and stacks of hospital sheets.






Sunday 10 March 2019

Andrew Bennett in Conversation with Elizabeth Starr

Interview from correspondence in preparation for Andrew's address to the Youth PowerPoint event in Aberdeen on the 9th March 2019.

 Can I get you to tell us a bit about yourself what age are you, and what have you been doing since leaving school?
I am a 22 year old student at Sheffield University.  Before uni I visited North East India with the Baptist Mission Society.  I was due to visit again over Christmas but this never happened.
 What happened to you on Saturday 22nd of September 2018?
I had a brain haemorrhage.  I got up to brush my teeth but felt sick.  I thought "oh no, my flatmates are going to see me being sick”.  Then I felt my left leg and arm stop working, and I managed to get onto my bed.  Then I fell on the floor.  My right side was spazeming, and I had a terrible pain behind my eyes.  I was fully aware of what was going on and knew that my flatmates would find me, and probably also ‘freak out’.  I was on the floor for about an hour until I was found.  My flatmate called an ambulance.  Nearly every muscle in my body was affected, but I survived because some breathing and the heart beat is involuntary, and not controlled in the same way.  When I got to hospital I was sedated and put on a Neuro Critical Care Ward. 

To start with I needed a lot of medical support.  I had tubes and needles all over me.  I needed help to breathe, and was given a tracheotomy, which is where the breathing goes straight into your wind pipe.  I was feed through a tube into my stomach.  I couldn’t speak.  I could squeeze my right hand to indicate yes and no.  It took a month for me to be able to breathe by myself, and three months before I could eat safely.

 How have you coped with this massive change in your circumstances? That’s now 6 months ago.. that’s a long time what keeps you going?
I know very well that God loves you, whatever your condition.  I cannot sing and play the guitar at the moment, but I know that you can worship in your spirit even without a voice.  I have realised that I can encourage the staff and other patients, even without words.  It is very important to trust that people will look after you when you need help.

 What has been the hardest thing?
Not being able to walk.  You feel restless.  You can’t twitch your left foot, or left hand.  A lot of the time through the day you have to amuse yourself, and it gets boring.

 What part has your faith played in helping you at this time?
Having a relationship with God gives you a really good perspective.  I am seeing positive progress.  I know that God uses suffering to make good things happen.  I know that the suffering I am experiencing is character-building, that is assured in the bible. 

 We’re thinking about how with knowing who we are in Jesus we can face any circumstances.. what would you want to say to others who have their own difficult things they are facing?
I think it is really important to be humble, and not to feel self-pity.  Rather look at what God can do.  We know the bible says God loves us and wants good things for us, so in suffering, this is no less true, and I trust that this is true for me.  No matter what you are feeling, the messages in the bible remain true.

 Thanks so much for being willing to share with us we really appreciate it… blessings on you from Scotland..….Thanks ….

Monday 4 March 2019

What it would take?

I haven't changed.  Not a fan of institutions.  If I was a dictator I would have denominations dissolved.

I learned recently (In Our Time) that Bonhoeffer believed that the church in Germany had been so ineffectual and collusive using the thirties and forties that after the Second World War, a new sort of Christianity would have to emerge, one not based on the church at all.

I would get heads and bang them together.  One church or no church.  For me the diversity within the church is to be celebrated and retained.  The different factions within the church are all important.  The different traditions are all correct.

What stops the church from working together?

1) Power and Control.  It's much easier to be in control, and not to have to compromise and work in partnership.  This is a shame because the skills should be out there.  After all, is this not the basis of a good marriage?

2) The money.  Churches need a steady and reliable income.  It is good to know who your congregation is so that you can estimate what you are likely to receive.  Buildings need to be maintained.  It's an expensive business.

3) Intolerance.  The history of Christianity (indeed humanity) is littered with intolerance.  I agree with Brian McLaren when he described one of the worst things that happened to Christianity (and the best) was when Emperor Constantine stopped the persecution of Christians and made it the state religion of the Byzantine Empire.

This is when the faith first became an institution.




Saturday 2 March 2019

A New Education

A Mental Health Worker married to a Teacher.

If I had the power, I would dissolve these institutions.

No Schools-  When I left school I remember walking away from the building.  It was a quiet summers day.  I wondered what I had done wrong.  An image from a film of a person being released from gaol came to mind.  A small door within a large door opens.  A bag is handed out and placed on the ground.  A dazed and confused man (usually man, as men go to prison) steps out into the daylight with blinking eyes, all alone.

What would I do instead?  The qualities I admire about schools are:-
1) Introducing children to different cultures, challenges and opportunities, that they might not otherwise experience.
2) The idea of having to work out how to live in a community.
3) Providing a safe environment free from exploitation.

For me the challenge is how to reduce the need for society to define, classify, control and regulate.

How would I do it differently?

Andre Gorz discussed in Paths to Paradise (1985)  the paradox of a modern age when half the population works too hard for too much money, and the other half does not have enough work, or money.  He suggest sharing.   I would like to see learning of young children primarily facilitated by parents and carers, not nursery's or educational establishment.  However I do not see this as a private function.  I feel it should be a collective spirit based on shared experiences.  The learning style I opt for in parenting is called Action Learning. This is an experiential, dialogical model of learning which is sensitive to the vulnerabilities and inequality of parents as adults.  The main vulnerabilities as I see them are not to do with class discrimination, but to do with generational poverty due to insecurity in the emotional strengths in relationships (bonding.)  We can see this in the broad sense dating back to the destruction of family life through slavery, or the culture of 'parental remoteness' in upper class, Western European families.  At a local level, emotional insecurity leads to a lack of awareness of risk, due to poor early childhood experiences.  This is a catch 22 scenario, as 'not seeing', heightens the sense of parental vulnerability, increasing hostile and protective reactions.

So I would have universal surestart.  National Child Birth trust for everyone, and lots of maternity leave, and paternity leave until the age of 7.  The best model for me would be 'shared parental care'.   The system would need to support parents whose ability to parent is compromised by health, and other factors such as criminality, loss of a parent due to death, incompetence (risky behaviours) or geography (a parent might move overseas.)  I agree with the Finnish model of education where formal education begins at 7.

I would like the rearing of young children to be fun for all, a celebration of life, a shared learning experience, and for children to be surrounded by all manner of people, not just their own families.  The key rules for protecting children are ensuring many people see the child and carers on a daily basis in fun informal settings.  This is in the context of a social contract, where healthy parameters are discussed frequently.

Children's Centres should be part of integrated hubs in the community where, health, fitness, libraries, life long learning, cinema's, gyms, care of the elderly (shared meals), life long learning, celebrations, all take place naturally.

I would like parents to understand this as a vital and necessary role, which is to be shared with a wider community including grandparents and people with no children.

From 7 years I would like to see a range of opportunities open to children.  As education is necessarily conservative in nature, (by this I mean that we have ideas of education that echo across the generations), much of this will be familiar to today's experiences.

The categories would be:-
1) Classical education - based on small group 'Oxbridge style' tutoring.
2) Languages based on 'immersion' and experience.
3) Physical exercise and sports.  This will be based around clubs and personal interests groups.
4) Community Service, including caring, gardening, cleaning and neighbourhood renewal.
5) Individual pursuits.  This is based on personal interests.  These subjects are designed to help every young person believe that they are skilled and talented in some area of education.
6) Religious or faith based learning, to be conducted by faith groups, but not not exclusively.
7) Creative Studies - Find your creative genius, work with others to create it.

I would like to see most education delivered in small venues including domestic homes.  I think that it would be a step forward for exams and tests to be given less status in our society.

I would like to see the responsibility for education to be seen as a partnership between parents, educators, and the state.  Teachers can be part-time, offering their personal expertees to education hubs, part of community services that include all age learning. There would be many teachers, each with their part to play.

I would like to see young people monitor their own development through university style 'credits'.
Some of these categories will be streamed, with age not being a factor.  Other will be universal and bring all people together.












Friday 1 March 2019

Eternal Bliss

Scenario One
Welcome to the Lottery - live from Camelot,
Be ready with paper - magic numbers to jot.

Here with me bring an aura of good fortune,
Si and Flo, winners of four million last June.

"We wish you could all share the luck that we found,
But then all you'd win would be your original one pound."

"On that day special numbers made our dreams come true,
Our lives were transformed - multicoloured from blue."

"He's so nice to me now, no put-downs, no bile,"
"(Treated you badly eh?) Gritted teeth, face forward, smile."

"The first is 11, our house number, how lucky,"
(Voice over) The 65th luckiest digit.  Not a push over, but plucky.


Scenario Two
They promoted him just six months before he retired in January,
He's worked hard at his career, I think he deserves every penny.

My pension is small, his, three times what I earned,
As a primary school teacher, 'marry well' - is what I learnt.

With the lump sum we bought ourselves an antique narrow boat,
It's our passion - private world. All we need to keep us afloat.


Scenario Three
Welcome to the restaurant at the end of the universe,
Up to now all you've done has been to rehearse,

What have you to show for the life that you've led?
It's your actions that count not just what you said.

We start with the money and the luck that you've had,
Everything spent on yourselves is worth nought - not a tad.

For value is not what if might seem at first,
The last end up best and the Best shall be worst.








To the Lighthouse -

Poetry in Motion  -  Penny for your thoughts  -  Existentialist angst  -  Polyphony of voices - Stream of consciousness

Of Lily's mind....
All of this danced up and down, like a company of gnats, each separate but all marvellously controlled in an invisible elastic net—danced up and down in Lily's mind, in and about the branches of the pear tree, where still hung in effigy the scrubbed kitchen table, symbol of her profound respect for Mr Ramsay's mind, until her thought which had spun quicker and quicker exploded of its own intensity; she felt released; a shot went off close at hand, and there came, flying from its fragments, frightened, effusive, tumultuous, a flock of starlings.

Of Mrs Ramsey's mind....
Jasper offered her an opal necklace; Rose a gold necklace. Which looked best against her black dress? Which did indeed, said Mrs Ramsay absent-mindedly, looking at her neck and shoulders (but avoiding her face) in the glass. And then, while the children rummaged among her things, she looked out of the window at a sight which always amused her—the rooks trying to decide which tree to settle on. Every time, they seemed to change their minds and rose up into the air again, because, she thought, the old rook, the father rook, old Joseph was her name for him, was a bird of a very trying and difficult disposition. He was a disreputable old bird, with half his wing feathers missing. He was like some seedy old gentleman in a top hat she had seen playing the horn in front of a public house. "Look!" she said, laughing. They were actually fighting. Joseph and Mary were fighting. Anyhow they all went up again, and the air was shoved aside by their black wings and cut into exquisite scimitar shapes. The movements of the wings beating out, out, out—she could never describe it accurately enough to please herself—was one of the loveliest of all to her. Look at that, she said to Rose, hoping that Rose would see it more clearly than she could. For one's children so often gave one's own perceptions a little thrust forwards. But which was it to be? They had all the trays of her jewel-case open. The gold necklace, which was Italian, or the opal necklace, which Uncle James had brought her from India; or should she wear her amethysts? "Choose, dearests, choose," she said, hoping that they would make haste. 

Speaking of vegetables...
"It is a French recipe of my grandmother's," said Mrs Ramsay, speaking with a ring of great pleasure in her voice. Of course it was French. What passes for cookery in England is an abomination (they agreed). It is putting cabbages in water. It is roasting meat till it is like leather. It is cutting off the delicious skins of vegetables. "In which," said Mr Bankes, "all the virtue of the vegetable is contained." And the waste, said Mrs Ramsay. A whole French family could live on what an English cook throws away. Spurred on by her sense that William's affection had come back to her, and that everything was all right again, and that her suspense was over, and that now she was free both to triumph and to mock, she laughed, she gesticulated, till Lily thought, How childlike, how absurd she was, sitting up there with all her beauty opened again in her, talking about the skins of vegetables. There was something frightening about her. She was irresistible.


Speaking of Love.....Mr and Mrs Ramsey
And what then? For she felt that he was still looking at her, but that his look had changed. He wanted something—wanted the thing she always found it so difficult to give him; wanted her to tell him that she loved him. And that, no, she could not do. He found talking so much easier than she did. He could say things—she never could. So naturally it was always he that said the things, and then for some reason he would mind this suddenly, and would reproach her. A heartless woman he called her; she never told him that she loved him. But it was not so—it was not so. It was only that she never could say what she felt. Was there no crumb on his coat? Nothing she could do for him? Getting up, she stood at the window with the reddish-brown stocking in her hands, partly to turn away from him, partly because she remembered how beautiful it often is—the sea at night. But she knew that he had turned his head as she turned; he was watching her. She knew that he was thinking, You are more beautiful than ever. And she felt herself very beautiful. Will you not tell me just for once that you love me? He was thinking that, for he was roused, what with Minta and his book, and its being the end of the day and their having quarrelled about going to the Lighthouse. But she could not do it; she could not say it. Then, knowing that he was watching her, instead of saying anything she turned, holding her stocking, and looked at him. And as she looked at him she began to smile, for though she had not said a word, he knew, of course he knew, that she loved him. He could not deny it. And smiling she looked out of the window and said (thinking to herself, Nothing on earth can equal this happiness)— "Yes, you were right. It's going to be wet tomorrow. You won't be able to go." And she looked at him smiling. For she had triumphed again. She had not said it: yet he knew. 

The Novel ends...and it begins...
"He has landed," she said aloud. "It is finished." Then, surging up, puffing slightly, old Mr Carmichael stood beside her, looking like an old pagan god, shaggy, with weeds in his hair and the trident (it was only a French novel) in his hand. He stood by her on the edge of the lawn, swaying a little in his bulk and said, shading his eyes with his hand: "They will have landed," and she felt that she had been right. They had not needed to speak. They had been thinking the same things and he had answered her without her asking him anything. He stood there as if he were spreading his hands over all the weakness and suffering of mankind; she thought he was surveying, tolerantly and compassionately, their final destiny. Now he has crowned the occasion, she thought, when his hand slowly fell, as if she had seen him let fall from his great height a wreath of violets and asphodels which, fluttering slowly, lay at length upon the earth. Quickly, as if she were recalled by something over there, she turned to her canvas. There it was—her picture. Yes, with all its greens and blues, its lines running up and across, its attempt at something. It would be hung in the attics, she thought; it would be destroyed. But what did that matter? she asked herself, taking up her brush again. She looked at the steps; they were empty; she looked at her canvas; it was blurred. With a sudden intensity, as if she saw it clear for a second, she drew a line there, in the centre. It was done; it was finished. Yes, she thought, laying down her brush in extreme fatigue, I have had my vision. 

The End- and as the story restarts...the beginning again.
"Yes, of course, if it's fine tomorrow," said Mrs Ramsay. "But you'll have to be up with the lark," she added. To her son these words conveyed an extraordinary joy, as if it were settled, the expedition were bound to take place, and the wonder to which he had looked forward, for years and years it seemed, was, after a night's darkness and a day's sail, within touch. Since he belonged, even at the age of six, to that great clan which cannot keep this feeling separate from that, but must let future prospects, with their joys and sorrows, cloud what is actually at hand, since to such people even in earliest childhood any turn in the wheel of sensation has the power to crystallise and transfix the moment upon which its gloom or radiance rests...