Transverse Myelitis - chronic management

A succinct summary of the ongoing problems from Transverse Myelitis can be found at

Well worth looking at, digesting possible solutions, and then acting on as much as you possibly can...
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Transverse-Myelitis-Fact-Sheet

Haiku on Depend/ Survive/ Nervous/ Last/

Depend

Your best quality

Is dependability

You are always there

A small dependant

Lost child hanging round my neck

To be remembered

Need to write haiku

I depend on mindfulness

Evoked by a word

Survive

A thought keeps nagging

I've told it to go away

How will I survive?

An old sway-backed nag

Survived long after she should

Just a bit knackered

Being nagged again

One more damned thing to survive

I do know I'm loved

Nervous

A small nervous tick

Holding a hair of the dog

Expecting brush off

Nervous debutante

Beautiful but scared to speak

With halitosis

One desk of hundreds

Nervous anticipation

"Begin your exam"

Last

Fifty years ago

We wondered if love would last

Guess it did, my dear

Saw the red tail lights

Missed the last bus home, again

I'll just have to walk

Hitting the windscreen

Last thing going through its mind

Is the fly's behind

Making of a Child Psychiatrist: (78) Psychiatric beginnings (1); Australia

We flew into Adelaide on the 18^th December 1974. Fortunately, we were able to move into the pre-arranged house straight away; an old bluestone villa on Kermode Street, owned by the hospital. All I would have to do to get to work was get up, shower and dress, and cross the road. The hospital was set in parklands a short distance from the city centre, and just down a hill from North Adelaide. So we had access to wide open spaces, gardens and playgrounds, and although everything was new to us we were to find out we had shops and cafes and all the amenities of a modern city within walking distance. There was even a pub on the corner (The Cathedral Hotel named after the Adelaide Cathedral just across King William Road); not that we were ever to frequent it. The fully furnished house was cool and somewhat dark inside, and the immediate impression was that it was dingy. It only took a couple of days of summer heat over 100 degrees Fahrenheit for us to understand the welcome relief of cool and dark. There was a small well-tended garden, but forays were brief and followed by a sigh of relief as we came back indoors for a thirst quencher.

Of course we had nothing familiar around us but each other, the clothes we had been able to pack, and our naiveté. The boys (being boys) had packed cowboy guns in their backpacks and these to our surprise had been confiscated as we went to board the plane in London. Luckily they were returned on our arrival at Adelaide airport. There was a strange relief in seeing the boys resume their chasing games, taking imaginary pot shots at each other. The rest of our belongings would not arrive in Adelaide for several weeks. We needed a supply of food to suit the children, but were too exhausted on that first evening to get more than the bare essentials from a small local shop. However, on the doorstep the next morning we found a large cardboard box full of fresh fruit and vegetables, with a note from a Dr. Kerry Callaghan wishing us a happy Christmas and hoping we would settle in well. This kind and thoughtful man would become a life long friend and mentor.

Looking back you can see our total naivete and lack of preparedness. We had spent 3 months in Adelaide as university students 11 years prior, and must have imagined that we knew the place, the people and its customs, and would settle seamlessly into our new routines. There were to be a number of shocks in store.

The other issue was about the pressure to get on with things. At one level we needed for me to begin work as soon as possible to ensure an income, and settle us into a routine. But I now recognise that I have always had an urgency to get on with things; an internal driver that has put those around me under pressure. My parents, when they were posted to Adelaide for three years, used the opportunity to travel home graciously for several weeks on an ocean liner (the Orsova, I believe). Going further back, my grandparents had also travelled by boat when emigrating from South Africa. But for us it was one day in England, two days later in Australia, the only constants being our family unit and the close bonds between Jan and I as parents. No small wonder the boys were glad to get back to playing Cowboys and Indians, and Harriet was clingy.

There were so many things to do. Apart from the need to set up some semblance of Christmas for the children, there were practicalities. We needed urgently to get to the Commonwealth Bank in Rundle Mall to ensure our funds had been transferred, and organise cheque books, as well cash for immediate needs. We needed to get transport. We had to get in touch with our sponsors to start the ball rolling toward getting housing. I had to clarify the details of my contract, and sign the necessary papers. And none of this proved to be easy in the silly season that is Christmas, or in the aftermath when so much closes down for the first weeks of the New Year so that everyone can go to the beach.

Our first foray was to Rundle Mall in 108 degree heat, and we were to welcome the air conditioning of numerous shops as we tracked our way to the bank. Along the way Jonathan managed to disappear in John Martins, given we all had little experience of large busy department stores, and despite our vigilance. He was found playing happily with the toys in the lost children’s area after a loudspeaker announcement. Of course he was totally unaware of our Day 2 ‘disaster’ panic. We all trooped off to see Father Christmas.

On Friday morning I popped across the road to find the Department of Psychiatry, which showed small signs of pending Christmas with even a tree at reception. Most staff members were still working, if busy, but someone parked me in the staff room (which was to become the centre of the work world), made me a cup of coffee, and began the process of introducing me to staff as they emerged. Then I had some time with Jeff Gerard, the man who was to be my supervisor, mentor, champion, and life long friend. His letters had suggested someone who was enthusiastic about life and his work, and our conversation did not disappoint. He bubbled over with his plans for the department, ideas about working with families drawn from his time in the United States, and the statewide training program to which I would become attached. I was introduced to more staff members, and then packed off to the admin department with my passport, to sign forms, provide our new bank account numbers, and set up superannuation. I was to begin my Australian journey to become a child psychiatrist on 13^th January 1975.

Back in Kermode Street, I overwhelmed Jan with all the information, we had lunch, and then began a series of phone calls to begin to tick off the issues on our rather lengthy list. Our sponsors, the building company, were understandably keen to show off some of their houses, and Jan remembers being driven to various suburbs in the bliss of their air-conditioned car. We were not obligated to buy, but after we had seen a brand new bungalow in a newly developing outer suburb called Surrey Downs (about 17Kms north of the city), and under the pressure of the short term rental at the hospital, we signed the papers, handed over a cheque for the deposit, and were given the keys to our first home in Australia. We were going to need to buy some basic furniture, given it would be another 6 weeks before delivery of all of our stuff from Birchington. We were also going to need two cars.

When I reflect on that time, it was amazing that we all managed. We must have been beginning the grief of leaving our known world behind, of saying goodbye to the precious people we knew. Yet we coped. I suspect that was because of the close relationship and open communication between Jan and I. We had (and have) a close agreement on most things, and only very rarely have major disagreements. I think, despite the problems of everyday life in this new adventure, we kept the tension low, we made the most of every circumstance, and we kept up a strongly optimistic frame of mind. This was our family adventure, and we set out to make sure everyone enjoyed it. We have always tried to keep communication channels open with each of the children, and if one of us was struggling with that, the other was quite comfortable to step in with a different way of constructing the problem and solution. And I believe the children had every trust in us to work things out, and while we had numerous uncertainties, we knew we would get there (wherever ‘there’ was going to be.

Haiku on Mess/ Attraction/ Unreality/ Start/ Thinking

Mess

Making Pavlova

Oh dear, I dropped it again

One more Eton Mess

Post Brexit chaos

Then Cameron dropped the ball

One more Eton mess

Surrounded by mess

Meditating quietly

Fix the inside first

On Attraction

A jolly good wash

The glamour girl disappears

Plain Jane underneath

A grade of sticky

Somewhat closer to tacky

Instinct says avoid

She looked rather sweet

Good to try everything once

But never again

Unreality

Brexit, Trump, Turkey

The world needs a cold shower

Unreality

Battle of the Somme

Nothing learned from history

Unreality

You and me, my love

Lost like two babes in the wood

Unreality

Start

She gave a small start

And that was where it ended

As her dreamscape changed

Heart needs a kick start

Atrial fibrillation

Defibrillator

As the racing starts

He's quietly confidant

Holding chequered flag

Thinking

I am not thinking

About politics world wide

Makes my mind shudder

When I am thinking

I let my mind wander wide

Making connections

Thinking it all through

Decided it was rubbish
And went back to sleep

Making of a Child Psychiatrist: (77) The General Practitioner (22); Blue Sky Dreaming

Jan had had a good pregnancy, and was feeling well, but given the rather precipitate birth of Rod we felt it was appropriate to have the safety of the Margate Hospital maternity ward. Given Rod had had jaundice, and Jan had been blocked from breast-feeding, she wanted one more opportunity to experience it in the context of a restful environment and with the support of the nursing staff. Our beautiful Harriet Louise was born with no complications on the 26^th October 1973. She thrived, and we were able to take her home on the 5^th November.

I mention that date, because it was Guy Fawkes night, that weird annual celebration of someone trying to blow up the British Houses of Parliament. Of course with Jonathan being 5 and a half and Roderick being 3 and a half I had had the fantasy of giving the boys the experience of being like the rest of the population in celebrating with fireworks in our front garden at Old Gates. I had not been extravagant, but did have a couple of Catherine Wheels, several small rockets to be set off from milk bottles, a packet of sparklers and a couple of Golden Rain fireworks which could be held in a gloved hand.

It was not a success. I had trouble fixing the Catherine Wheels to the back fence so that they spun correctly, and one fell off and continued trying to spin on the ground; causing much alarm. The rockets worked, but were less than spectacular. Every time something went bang, Rod became frightened and ran to hide indoors, and no-one wanted to hold sparklers or Golden Rain. And of course Jan was not really in the mood, being rightly focused on our new baby and protecting her from all the noise. Not one of my finer moments.

The following morning I picked up the sad remnants of spent fireworks, the smoke covered milk bottles and the wires from dead sparklers. I looked round the garden, and back at the house, and felt a sense of pride in what we had achieved. It was such a beautiful house and we had invested immense energy in painting, remodeling and upgrading. Why would we want to leave? Why would we want to uproot a very settled and well off life, now with two fine and healthy young boys and a healthy infant daughter, all of whom would be only 14 months older for our emigration if the plans all fell into place? It all seemed so insane. And yet, I could not see myself mouldering away as a GP for the next 30 or so years; professionally there had to be something more. And we had started a ball rolling down a hill, and the process was slowly gathering its own momentum. We had discussed the whole thing over and over, and Jan continued to be supportive of the decision despite the enormous practical difficulties. We argued that if it did not work, if we were not happy, then after 18 months or so we could always come home. We were alternately anxious and excited, and focused on the opportunities rather than the problems and the sheer hard work that might be involved in creating a new environment for our growing family. And we did not know just how much we did not know about our chosen new country, and how harsh and unforgiving it could be.

I wrote to Australia House in London, seeking the necessary application papers to emigrate. I was told we would need UK passports for everyone, and would also need an Australian sponsor. So in my correspondence with Dr. Gerard, I asked if he or a member of the staff would be able to do this. That apparently did not fit into the rules. Yes, we had to have confirmed employment, but the sponsor had to be 'independent'. So I wrote to my grandfather in Sydney asking him to sponsor us. He made some enquiries, and apparently a sponsor had to come from the state to which we were immigrating. We did not feel close enough to our old friends Kiah and Jan from 1963, having had little contact in the intervening years, and for the same reason felt unable to ask my parents’ old friend Alf in whose house they had lived for the three years. We considered Jim Silsbury from the Waite Institute with whom I had worked for three months, and although he was still working there, again we felt it would be an imposition. Eventually reading about migration and sponsorship we came across Hutchinson’s, a building company that sponsored migrants – with a catch. You had to purchase one of their newly built houses to live in. An odd arrangement to get around bureaucracy, but if that was what we had to do, then so be it.

If we could sell Old Gates quickly, we would have enough of a deposit on a house. We would certainly need to set up a home quickly, and did not know Adelaide and its suburbs well enough to worry about where the house would be. We remembered it as a compact city, with no journey in any direction taking that long, compared to the years we had spent in London.

On the other hand, it has always seemed to me that sponsorship should be by someone who knew enough about you to. Curiously, we ended up with a sponsor who knew nothing about us except we were locked into a commercial contract. Jeff did very kindly arrange for us to live in a ‘hospital flat’ – a house just across the road from the hospital, though this was going to be limited to 6 weeks after arrival.

So the arrangements slowly fell into place throughout 1974.

We did our planning around beginning work in Adelaide to begin in January 1975. I suppose that was good from the point of view of being paid, but ultimately I was to learn that not much ever seems to happen in Australia in January. The weather is hot, children don’t go back to school after the summer holiday until early February, and many staff members take the opportunity for a long break over Christmas and New Year. We were to arrive just before Christmas, which gave us time to settle in somewhat, but meant not having Christmas with the family in England; which was probably a mistake.

The other way you find out about family and how they really feel about your actions in life is when they write down their experiences in their own memoir. Jan’s mum Bobbie did not do this until prompted in the late 1980s when staying with us in Adelaide, and sometimes with time on her hands. Her story of our emigration to Australia is worth recording because it reminds you that families are systems, and every action somewhere in system has a reaction somewhere else. That is just a technical way of saying that my choice of a new career direction caused immense pain to others in the family, and ripples through the community of Birchington. For us, the future was an exciting adventure, admittedly with a range of anxieties, and problems to be solved. For others, we left a vacuum. I take the liberty of publishing Bobbie’s story because I could not write it better.

“Now the next bombshell! That pine kitchen at ‘Old Gates’ is starkly etched in my mind coupled with Graham’s announcement that they were emigrating to Australia, and would we join them. Was this to soften the blow, as blow it was. A gorgeous baby girl Harriett had been born the previous year. The close affinity between her and Graham was unbelievable from the start. The pressure of general practice was very heavy on Graham and the attitude of the other partners did not help. His heart was not in it, and Barbara Castle’s harassment of the medical profession during the term of a Labour government proved the last straw. He and Janet had spent a holiday in Australia in 1965 while his parents were there. His grandparents lived in Sydney, several uncles and numerous cousins were strewn around that large continent. An advert in ‘The Lancet’ for a trainee child psychiatrist at Adelaide Children’s Hospital proved irresistible. He applied for the post and got it; much to his surprise I think. We could only stagger under the blow, force a smile and wish them luck. There was no question of us going. I could not desert Wendy and Sheila was young and having a difficult time. Graham’s mother had died of cancer while they were living at ‘Kingsmead’ in 1970. A shattering blow for him, as they were very close, so he had no one to leave that he cared about. Those lonely, lonely years for Jan, the heartache, I don’t honestly think Graham had any idea of how she felt. Our family ties are so close. My three sons-in-law find it difficult to understand.

Living so near we were involved in all the packing up and selling of the house. For a few weeks they lived with us after the furniture had set sail. Bitter sweet memories. Lovely, lovely Harriet, just over a year old, giving Reg an indignant piece of her mind when he picked up the newspaper or a book instead of attending to her. She was just learning to walk, but used his index finger as a prop while she explored the house and garden. Graham was enthusiastic and excited, at last a new career, a new beginning in the field of medicine he had always wanted. We were desolate. Sheila cried all night. On our return from the station after seeing them off, there was the empty button box, the buttons all over the floor; Harriet had been playing with them. The stiff upper lip crumbled and we all dissolved into tears overwhelmed by a crushing sense of loss. I remember Kate taking over and making the inevitable answer to a crisis – a cup of tea. Reg and I were numb, and behaved like zombies for weeks. Dear Sheila, how wonderful, thoughtful and caring she was in our misery. She came home every weekend, organised a Christmas day with my sister, a Christmas Eve dinner at a Greek restaurant in London, even a Christmas stocking for each of us on Christmas morning. To my everlasting shame I did not think about one for her. They had flown away on 16 December.”