Important

The WHAT'S NEW! page contains the latest medical updates. If you're wondering how I'm going as far as health is concerned, this is the place to start. Latest: Wed 27 Nov 2013. 7.20AM

Tuesday, December 17, 2013

A Last Message from Denis



For all my life, I've been a remarkably fortunate person. I've been blessed with good health until the last few years, and bathed in the love of wonderful people around me. I've had an abundance of good things. I've had periods of sadness, too, and I very much regret having made those I love unhappy – but those times have passed and it serves no purpose to wallow in what can't be changed. In my adult life I never hurt anyone out of malice, though I know I sometimes did out of thoughtlessness and ignorance.

Tracey & Denis
The last fourteen years of my life I have spent with, and been loved by, and married the one who is to me the most beautiful, intelligent and caring woman in the world. It's impossible for me to express the amount of care and time and patience Tracey has given me, with little thought to her own needs. She has always placed mine first. This path we've had to share since 2009 has been more difficult than anyone can understand unless you've travelled a similar one – and cared as much as she has. She hid her tears from me many times, knowing how much they tore me apart; yet to cry alone and out of sight is one of the saddest things in life.

I was able to truly understand the meaning of love through her presence in my life.

Denis with Sylvia (L), Christian & Alice (R)
I also have wonderful, clever, loving daughters who mean the world to me, and a family – parents, my sisters and their husbands and families, who gave structure to my life through their love and concern. I have a loving stepdaughter, and I have a delightful stepson who has grown in Tracey’s and my care from a little child to a fine man. Tracey’s family has been as my own to me and gave me abundant support when it was most needed.

My life has been completed and fulfilled by some very special people. They know who they are and I won't try to name them here. I've had an occupation all my life that I've loved and which made my work my play; and made my occupation my hobby. Not everyone can say that. After retirement from university life, I did things that have given me great pleasure and, I believe, pleasure to many other people. I have no great unfulfilled ambitions, except the trip to Europe that Tracey, Christian and I planned to do in 2010, and which became impossible when my illness came to light.

If I've clung to life to the end it's only because of the joy of sharing life with close family and friends, and my desire to be with them as long as possible. For me, nothing else mattered but those bonds of love and friendship. To allow them to slip away is, by far, the most difficult thing to accept.

So I say with utter sincerity that I've had a fortunate life – far more fortunate than most people on this planet, and I'll always be grateful for this. But that balance – so heavily in favour of good things over bad in my life – is why I'm also grateful that I had the chance to reflect on my life and its meaning through the window of terminal illness. That time for reflection isn't something everyone gets. It's a window through which things become sharper and more vivid than any other.

It came as a shock nevertheless to face the near-certainty of imminent death at an age when I might have expected to live longer than I did. I thought about death a great deal in the past few years. Not everyone does. I became more aware than ever that life is always a fleeting thing, whether you reach one year of age, or ten or a hundred years. Every life is a little spark that flickers briefly, sometimes brightly, and then the spark fades quickly and passes back into an infinity of space and silence.

That's how we're programmed. While we live for this brief time, our bodies are the bearers of who and what we are. They are not us; they're just the vessels in which our true self resides. We stop sometimes, and try to take stock. We move on, and simply live. We occasionally contemplate the great questions or put them aside as an insoluble puzzle.

This is just how it should be. Whatever endures beyond my body will do so, especially in the form of the consequences of my actions in life, and my only wish is that whatever I've taken from the world, I have been able to give something meaningful back.

When my youngest sister Kay died of breast cancer in 2008, she told us always to look for her spirit in the flowers. This is written on her headstone. It's very apt – life and beauty regenerated. She was an earth person, and she lies at the source of her beloved plants and flowers and trees.

I am a sky person, which is why I wanted my mortal remains to be cremated. Anyone who wishes to can imagine my spirit set free to roam where it will. Day or night, in the eternity of space and time, there's something of me that will be around somewhere.

Sunset - Armidale NSW

Only recently have I truly understood the meaning of the Tibetan verse: ‘Don't mourn for me, but for those who stay behind.’ I am now free. If you mourn for me just the right amount, I am honoured - but celebrate, as I always have done, my life and good fortune – and accept, as I always have, the wisest of all sayings from Chinese philosophy, 
'Who knows what's good or bad?'

I am truly free.




Eulogy for Dr Denis Wright (2/5/1947 – 7/12/2013)

Tracey has asked me to review what we might call the public life of Dr Denis Wright.  Denis and I joined UNE’s History Department at the same time in January 1976 and we retired on the same day in July 2007 so we had a lot of shared history.

Everyone present this morning had a connection with Denis in some way or another and held him in high esteem with great affection.  But which Denis do you remember?  Is it Denis the internationally recognised scholar, the inspirational and innovative teacher, the exacting but supportive supervisor, the enthusiastic hockey player and exuberant coach, the creative film-maker or one of several other roles that Denis filled quietly and self-effacingly?  With the assistance of Tracey’s notes, Denis’ blog and information from Howard Brasted I’ll try and cover most of these aspects.

Denis was born in May 1947 in Gladstone, Queensland but spent his childhood on the family dairy farm in Calliope about 20 kilometres away with two older sisters Jan and Lyn and later a younger one, Kay.  Dairying in the 1950s was the most exacting form of farming and from an early age Denis helped with the milking.  His mother would wake him with a cup of tea and a slice of toast about 5.45 and leave for the milking parlour.  Denis followed and helped with the cows until around 7 before returning to the house to get breakfast for himself and Kay and leaving for school.  After school and at weekends he often helped with the second milking. 

Denis started school early, before he was 5, at Calliope State School where 40 or 50 children were taken to grade 8.  Although he was younger than his classmates Denis did well at school but had a clear view that he was not going to be a farmer.  When asked if he was proceeding to Gatton Agricultural College he told the head teacher “Sir … I don’t want to be a farmer. I want to be a teacher”.  Consequently, he went on to High School in Gladstone and finished there with a result in the senior public exam which won him a scholarship to the Teachers’ College at Kelvin Grove in Brisbane.  When he left home to stay with his mother’s sister, Auntie Mavis, he was not yet 17.

Followers of Denis’s blog will find many stories of his childhood and they all reflect the innocence of a very different era though there are amusing tales of his misadventures with Bimbo Brown and the organizational perils, tinged with a frisson of danger, in having a ‘Calliope girl’ and a ‘Town girl’ for the different local dances.

The teachers’ course was 2 years but within two weeks of its commencement Denis had enrolled in a BA at the University of Queensland which could be studied externally with twice-weekly evening classes.  Here serendipity shaped Denis’s future.  There were only three options in the history programme and he didn’t fancy European or American history but Indian history sounded different and interesting.  More importantly he met two people who were to have an enormous influence both professionally and personally –Dr Damodar Singhal and his wife Dr Devahuti.

Denis & Duncan
Denis finished Teachers’ College at the end of 1965 and was appointed first to Gladstone Central school and then to his old school at Calliope where he found himself teaching his younger second cousins in the same rooms where he had been a pupil.  During the two years he was teaching he kept on with external studies for his BA expanding his interest in Asia with courses on China, Japan and the Modern Far East and always with good results including a Distinction that was surprisingly upgraded to a High Distinction and allowed him to apply for and win a much prized and rare Commonwealth Later Year Award that enabled him to go to university as a full-time student. 

Back in Brisbane Denis lodged with his father’s sister Auntie Amy and was soon joined in the city by Kay who was also at the university.  In the long university vacations Denis went home and worked in an assortment of summer jobs, as a postie, a barman, a wine waiter and a labourer on the coal wharves stacking oil drums.

Denis imagined he would return to teaching and, in time, probable promotion to a headmastership, but he was persuaded to do Honours in history with a thesis on the Kashmir Dispute.  His kindly mentors Drs Singhal and Devahuti then asked him to stay on as a Tutor on the History of Asian Civilisations course which he did from 1971 until he moved to UNE.  A Tutor was paid more than a teacher of an equivalent age and Denis saw this as an opportunity to marry Janette and, with regular renewals of his contract offering security, to start a research MA on the relations between India and Pakistan.  He was 23.


In 1973 on the day he submitted his MA Denis enrolled for a PhD on the new state of Bangladesh which was formed in 1971 from what had been East Pakistan.  With the commitment that we have all seen in various settings, Denis threw himself into research with a trip to London and a stint at Chatham House with several months in India and Bangladesh before returning to Brisbane to continue as a Tutor and work on his research topic. 

By the time he accepted the lecturing position at UNE in 1976, Alice had arrived in 1975 to be joined by Sylvie four years later.  Denis suspended his PhD while he constructed new courses, wrote lectures and external teaching materials but a study leave in 1980 allowed him to do the work in the USA, India, Pakistan, Bangladesh and Oxford that finally enabled him to finish and submit his thesis.

This is not the place to recite a catalogue of Denis’s many publications.  It is sufficient to note that he wrote several books, co–authored others and published many chapters and articles on aspects of Bangladeshi history, politics and culture and that he was a widely recognized expert on the modern history of the sub-continent and, of course, on Bangladesh in particular.  He wrote articles on child labour and the trafficking of women and girls in Asia and the chapters for an Australian government report on child labour in Bangladesh and Nepal that has been used by other governments as a model for combating child labour in developing countries.

Denis spent several study leave periods in Bangladesh, including one when virtual civil war raged around Dhaka and he heard the bullets snapping overhead.  His first two books on Bangladeshi history and politics were published simultaneously in that country and India.  It is typical of Denis that he arranged that the royalties on these books remain in the sub-continent and be distributed to various charities and foundations.  The number sold and the extent of the charitable outcome is unknown but both have enjoyed a constant cycle of reprints and republication by other publishers.  Denis became such a well-known figure in Bangladesh that he was affectionately referred to as the ‘white Bengali’ – speaking and reading both Hindi and Bengali – and an observer who understood the psychology of both Hindus and Muslims.  Indeed, it was for that reason that he was invited in 2001 to give the keynote address at the inaugural meeting of the Bangladeshi Psychological Society at Dhaka University.


At UNE Denis was an inspiring teacher.  Through his long-lasting, full-year unit The Great Traditions of Asia he introduced generations of students to the history, culture, philosophies and religions of India, China and Japan.  It is no exaggeration to say that he opened the minds of many to the possibilities of ‘otherness’ and he displayed manifest satisfaction when students began to switch on to the cultural history of South and East Asia.  He was also a very good supervisor at all levels; exacting in his insistence on accuracy, use of evidence and elegant expression but always supportive and eager to see his students realise the same goals that had been his as a young scholar.  He was the pre-eminent innovator in the Department and later the School in his use of emerging technologies in distance education.  Indeed his foundation unit was one of the first to be offered online long before it became standard practice.  He was also the acknowledged, though unpaid, ‘go to’ man when any of the historians encountered problems with their computers.  You must remember that those were the days when it was decided to issue computers to all staff but there was no money to train colleagues how to use them.

His contribution to the profession was no less significant.  In 1984 he became the Treasurer of the South Asian Studies Association, the professional body representing scholars in that field.  This was when the colleagues in Asian history at UNE took over a virtually moribund journal and turned it around so that it is today regarded as one of the world’s best.  In 2000 SASA awarded Denis Life Membership as an acknowledgment for the twenty years he served the Association.

Denis met Tracey when she was studying philosophy and world religions.  They had much in common, as we came to realise, and with his first marriage over Denis pursued a romance with his customary diligence.  Tracey eventually moved to Armidale in 1999 and her passion for music and the theatre opened up a whole new area of interest for Denis.  He started to make films of Musical Society productions and after his retirement he continued to film, edit and produce DVDs so successfully that he and Tracey set up Tabbycat Productions - a small filming and editing business.  As you can imagine Denis quickly mastered the intricacies of digital editing and production and was getting ever more enthusiastic about the venture when his illness was diagnosed.  Denis was made a Life Member of the Musical Society and an award set up in his name.  It is a fitting acknowledgement of everything Denis stood for that the chief criterion in selecting a recipient for the award is that their commitment to the Musical Society outweighs their desire for self- promotion.

That brings me to the last substantive category of activities that I must mention so that everyone has a proper appreciation of Denis Wright.  He was for many years an active contributor to Brain Mass, an organization that provides professional online academic assistance and advice.  For almost two decades he was one of just three directors of an international aid agency [BODHI] that raises and distributes thousands of dollars to charities, mainly in South and Southeast Asia, bringing health and education to thousands with the key principle being sustainability.  In 2010 BOHDI established four annual scholarships in Denis’s name for girls in Bangladesh.  Denis also assisted ANTaR –Australians for Native Title and Reconciliation – with graphic design and layout for their regular newsletters.  He was a hockey coach for ten years in the 1980s and 90s and is remembered by many of his hockey girls in town.  He also took groups for educational tours across China and was especially fond of travelling the old Silk Road.  Lastly through his blog, ‘My Unwelcome Stranger’, Denis has given many other people who are confronting a brain disease, as either a patient or carer, a source of information and inspiration of such significance that the blog has been selected for preservation by the Australian National Library in its Pandora Archive.



When we spoke with Denis last week, Howard and I told him that if everything we did as academics and in life was boiled down to a couple of questions they would be ‘was it all worthwhile’ and ‘did I make a difference’?  And that for him, the answer was an unequivocal yes!

David Kent


Painting by Den's niece - Jessamy Gee





Monday, December 9, 2013

Funeral Arrangements



A Funeral Service will be held for Denis at 

Piddington's Crematorium Chapel, Uralla Road, Armidale

at 10.00 am on Friday the 13th of December 2013


Not being in the slightest superstitious, Denis would be most entertained by this.


The date will be 13-12-13


A friend pointed out that if you phone that number you are connected to Qantas Freight.

Denis would also find this highly amusing.

First class freight I would think.

Take my word for it. Don't make the call. 
We don't want them thinking that they are suddenly popular.





Saturday, December 7, 2013

Saturday 7 December 2013


It has been a very hard, but special day.

Today I said goodbye to my beloved Denis.

He died at 5.10pm tonight. Peacefully, without fanfare, just as he lived.

They say that hearing is the last thing to go.

So loved by so many people. I reminded him of that near the end.

I sang him a lullaby, kissed his cheek and told him "Off you go now". He did.

He was so happy and ready for it to be over.

I am privileged to have been the one there holding his hand at the end.

The last messages I read out to him were from his darling daughters. He asked me to share them with you here.

Tracey


A Goodbye Letter


Dear Dad,

I don’t really know how to write this – I’ve never felt more clumsy with words. But I know I’m luckier than most because we’ve had so much lovely time together and I get a chance to say Goodbye and so many daughters don’t get this chance.

I guess I just want you to know I love you and feel so incredibly fortunate to have been brought up by such a wonderful dad. You taught me to strive to be caring, compassionate, and strong and purposeful. I say this because I want you to know that you don’t have to worry about me – I feel positive and inspired by the beautiful things in life and I will take good care of myself and stay true to my heart. I will always look out for Alice and we’ll stay strong together through whatever life throws our way – sisters united,  no matter what.

Thank you for all your words on the blog – there are so many lessons and memories recorded there that I know I will read and reread whenever I need advice, to be cheered up, and to feel close to you.

I know you love me and are proud of me. I’ve never wanted for anything from you. You have been the most wonderful father a daughter could ever dream of.

I wish you sweet dreams, Daddy, forever your Little Girl. 

Goodbye, Daddyo. I love you.

Sylvia


Haiku by Alice


Some Moments in Time
Floating through my memory
I create for you

Hockey Sticks and Balls
Daddy taught me everything
Goals I have many...


Spelling Must Be Right
Even on a shopping list
CusTURD was the best!  (that was Sylvia not me actually!)


Dinosaur Project
Dad's help and coloured paper
Came top of the class.

Warm Sand, Crashing Waves
Shiny shells and Cuttlefish
Christmas by the sea


Hit the fence for four
No this wasn't the ashes
French Cricket, Dad rules!


I was only five
Numbers crunching, brain hurting
Pontoon twenty one!


Midnight wake me up!
Moon is out, the tide is right
Fishing with my Dad


Spiders on the floor
Out of the wood, hairy legs
Daddy put them out!


Favourite moments
Running, laughing, stories and fun
Daddy is the word


A pillar of strength
From this life to the next one
You will always be

xoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxoxoxoxoxoxooxooxooxoxoxox







Tuesday, December 3, 2013

An Update from Tracey

Friends

Today is an anniversary. It is exactly four years today since 'discovery'. That is, the first seizure which announced the presence of the Unwelcome Stranger. Against all the odds, Denis is still here.

You have not heard from Denis for a little while and I know everyone is wondering how he is doing. 

Not so good. 

That is the problem with dying. When everyone most wants to know what is happening, it is the time when you are least able to tell them.

Some protracted 'new' seizures on Saturday night, and the subsequent increased deficits in communication and mobility, mean that Denis is extremely unlikely to write on here again.

He has seen the people that he wants to see. He is weary and content to sleep.

The problem for me is that Denis, through this blog and social media, has come to feel a bit like public property for many people. Unsurprisingly, he does not feel like that for me.

With upwards of 100 requests, texts, emails, private Facebook and Twitter messages in the last week, from people who would like to be kept personally informed, you will all be disappointed to read that I don't plan on doing that. 

This is not the time for me to be looking at a keyboard and answering questions.

It is the time for me to sit holding Den's hand and loving him while he is still here.

Thanks for all your messages of support. 

Denis says thank you all for your friendship. It has meant more to him than you will know.

This is our time now.




Wednesday, November 27, 2013

The brain jam


27/11/13

6 AM Ah! that's OK. I've been ferried to the bathroom, returned and have a little time when no-one is likely to bother me much.

[That's how far I got with that. To return to what I was writing yesterday and the day before....]

25/11/13

I did a lot of fishing in my life BC, but this isn't about fishing. Good fisherfolk have a number of admirable qualities, two of which are calm and patience.

   My first fishing expeditions were with a hand-line on a coke-bottle. No fancy rod and reel, just 75 metres of fine line, swivel, sinker and my savvy.

   From time to time my line got tangled. Untangling a fishing line depends upon one vital principle - keeping the knot loose. Then examine it. That's where calm and patience come in. More haste, usually less speed. Lose your temper and strangle the knot, and you've probably wrecked a good hand-line.

   I've always felt that a lot of problems in life can be approached using the same principles.

   I'm not certain how this relates to what I'm going to say next but I'm not sure it matters. I don't care really and you can't keep a problem looser than that.


   As you may be aware, a new problem quite suddenly came to the fore as a consequence of the spread of this brain tumour down the neural pathways. New to me, anyway, but no doubt familiar to the neurologist and to most GPs.

   It’s called dysphasia. In my case the cognitive area of my brain – the part that does the thinking – is going along at a fairly reasonable pace right now. Other parts are really running on empty or there are traffic jams in information waiting to be processed. Some lanes are freed suddenly only to get blocked again.

   If I didn't have this condition I would never have understood it, except on a superficial level. You have to be inside it. I know, you can say that nearly anything, but this is dysphasia and it's sure stuffing things up for me.

   In my ability to communicate via keyboard, it’s crippling.
Imagine for a start that someone reconfigured the keys on your keyboard randomly every minute or two as you were typing.
Imagine 
...that some letters in words you were typing failed to come up on the screen when you were sure you typed them.
...that totally different letters appeared on the screen bearing no relation to what you typed.
...that the Backspace and the Return keys regularly changed function.
...that a particular letter never came up on the screen.
...that even though you knew it was the wrong letter, you typed it anyway.
...that characters and words come out scrambled although they left the thinking part of your brain intact.

   Suddenly, that's my world. Familiar territory for the dyslexic no doubt. For me that's just the half of it. Couple that with failing eyesight [through seizures] that makes full stops look like commas or semicolons or apostrophes. Memory quirks and fails that make me forget where I am in a word or sentence, let alone in a thought.

   Touch type? I've been reduced to typing with just one hand because of right side semi-paralysis. Forget those ancient skills. I never was a touch typist but I used to type almost as fast as one.

   Voice recognition? With throat and mouth seizures, my voice is slurred and variable. No.

   There is one partial let-out clause. If I spell everything out loud, one character at a time, slowly, then it translates tolerably well. That does nothing for creativity, but at least it is correctable with another editorial pass over the text and made readable. It may be rubbish, but it's readable rubbish.

   So getting back to my fishing line analogy, all I can do in my outlook is to keep the knots loose. Be patient. Sacrifice some goals for the sake of others. Accept the limitations caused by this new condition, work around them where possible and be content with smaller fish.


Friday, November 22, 2013

Hospital 2

continued from hospital 1


I expected to complete this story earlier, but events overtook its rambly journey. Consequently, I’ll trim it down because time’s growing short and my [abilty to precess the words to the keburd hs suddly abut collasped. It has thaken me an abut fe minute to write thag three senteceability to process the words to the keyboard has suddenly all but collapsed. It has taken me about fifteen minutes to write these three sentences.

   This isn't getting the story finished. I thought I was about to face one of the things I dreaded about being in hospital, something that was not necessary when I was in hospital twelve weeks ago. I would be getting ferried by mobile potty-type chair – minus the potty – to a position which seemed high above the toilet bowl. When I and the toilet had completed our assignation there would be what I had previously regarded as the greatest possible attack on my dignity. 

   You know what I'm talking about. To put it very delicately, it’s having your adult arse wiped by by another human being.

   You know what? As many adults have discovered, long before I did, this procedure turns out be nix, nada, nothing. The nurses have done it a thousand times and to them it’s just another minor but vital task.

   For more than sixty years I couldn’t imagine myself needing this help, except perhaps as a frail old man in some distant future. I didn't think that I might become ill in a very short time. After all, Tracey and I had been playing squash three times a week up to the day before I got that first seizure. 

  I suspect women are not so squeamish about medical things to do with their bodies as men, especially men of ahem... mature years  men used to being in positions of power and authority.

   You feel awfully vulnerable that first time with a nurse of any age standing behind or beside your bare buttocks with a wad of loo paper in hand. You don't have your protective CEO suit on hospital.

   But here I was, last Friday, not a CEO of anything, facing the prospect of being ferried to the toilet. 

   To backtrack a little, I was going to call a nurse, get myself shovelled on to the portable commode chair and deal with the stomach pains in the bathroom – immediately. 

   But then I had my doubts that I was going to make it to my destination unscathed. Or maybe the carpet wasn’t. 

   I passed this calculation of time and motion on to the nurse as soon as she arrived. It was a busy night and I wasn’t the only customer in the shop. As unflustered as professionals always are in these circumstances, she bid me stay right there (like I was going to flee the country right?) while she got a bed-pan. She did this with alacrity. 

   Usually it's not hard for a person to turn on their side in bed, so that the pan can be placed in the right spot, then both the person and the pan can be turned upright so that the person is neatly on the pan and good old gravity can do its thing when needed. The problem was that my right side was weak and things seemed no longer Code Red but a marginally Whiter Shade of Pale. [That is so disgustingly bad a piece of purple prose I’ve got to keep it. Bulwer Lytton Awards, we have a winner.] 

   I decided that it was safe for me to attempt the marathon journey of five metres to the toilet. The effort of getting me up on to the pan had temporarily quelled the desire. The bed-pan was abandoned. 

   We negotiated the terrain to the bathroom without incident.

   After several trips to the toilet bowl now with my private chauffeur and my privates exposed, I think I’ll be ready for the bed-pan now, should the need arise. I don't say I like the idea, but I’ll cope.

    You're all just dying to know if the visit to the loo was a success, right? Well, no, it wasn’t. I was still too freaked by the bed-pan it seems. But you'll be happy to know it was only a temporary setback and a few hours later with another visit to the bathroom, it all came out just fine. 

   This post is dedicated to the many like me who have looked after their bodily functions from childhood but now face handing that jealously guarded care over to someone else. My message is, don't be afraid. Nothing bad is going to happen. On the contrary, you are going to learn a spectacular lesson in humility. If you accept with good grace what can't be changed – and with humour if you can – what would seem a blow to dignity soon ceases to become so. 

   It isn't a blow to dignity, anyway – just to pride – and there's a difference. The difference mainly concerns attitude.

   You can see how quickly I got over those first feelings of horror.

hospital 1 | hospital 2

Sunday, November 17, 2013

Hospital 1


16/11/13 17:15


We are told that as we get older, time speeds up. It makes sense on one level. Each year is a smaller portion of our life experience. At 2, a year is half your life. At 52, a year is barely a morsel of the pie-chart. No wonder the weeks  flash by.

   But age makes no difference to time in some respects. It feels, now that I'm back in this hospital, as if practically no time has elapsed since I was here last – twelve weeks ago.

   The huge difference is in me. When I left last time, I could walk – with a frame, that’s for sure – but now I have no safe grip with the right hand. When I left last time, I could get to the bathroom unaided, stand at the sink to wash hands, clean teeth, or stand at the toilet. I could exercise my legs in the passageway. When tired I could put myself to bed.

   At any time I could easily get myself from bed to chair, where I could open my window on the world via the laptop.

   I can’t do these things now, but I didn't really know the significance of that until today. Everything is set up in a hospital to solve these problems, right? Well, yes....

   We arrived at my room yesterday at about 4 pm. It was difficult for staff to get me from wheelchair to chair. At home, Tracey and I had our own method, involving the frame. With care and time, it wasn’t hard, and didn't mean Tracey was taking my weight.

   But here, the two staff were holding me firmly on either side. It felt wrong although they were doing everything right.

   It felt too late for me to have my usual afternoon sleep. Dinner was at the hospital time of 5.30 PM. You know, that time when everyone’s hanging out for their full evening meal.... Ha ha.

   But you go with the routine. There’s not much choice. I didn’t want to start setting up an internet connection, and staff who knew me dropped in for a quick hello.

   “It’s lovely to see you back.” It was often said, or a near equivalent. Only a few realised the irony, but it was a greeting sincerely meant, so Tracey and I privately enjoyed the joke.

   “We have so many patients in. Would you like to go to bed now?”

   “What time is it?”

   “7 PM.”

   I laughed, but had a quick think about it. 7 PM bedtime was even more alien to me than 5.30 PM dinner. But the day and its implications had taken its toll on me, and they were busy. So I figured it was a good idea to sleep while I was tired and see where the evening took me. I didn't have a plane to catch.

   I woke what seemed many hours later, bursting to pee. For the first time my new dependence struck home. I couldn't just shuffle off to my bathroom on my own.

   But I could of course call for a nurse to bring me a bottle. The call button was there, dangling above my head, and I had one good hand. I pressed it.

   As I said, it was a busy night. I heard the alarm ring at the other end, but amongst a host of others. I was going to have to wait my turn.

   There's nothing you can do in these circumstances but batten down the hatches, as it were. There may have been cases much worse than mine. I hoped they were, if you know what I mean.

   Eventually a senior nurse bustled in, very apologetic for the delay. I was too happy to see her to complain, which would have been both churlish and pointless. With great difficulty because of the lack of responsiveness of my right leg we got me into a standing position to drop the drawers (i.e., pull the trousers down). I then sat on the side of the bed, the deed was done.

   “I’ll try sleeping on the other side now.”

   To return me to a sleeping position, another struggle with the paralytic leg ensued.

   “I’ll put the rail up on this side as well,” she said, ”and you can use it to turn properly to this side.”

   It was a good idea. I had solid grip with that hand and could turn myself right to the side. Still, it seemed strange to be in what looked and felt like a baby’s cot, even though the side-rail was barely a palm width in height from the  bed.

   “I guess I'm not going anywhere. I don't have a plane to catch.”

   But it was a stark reminder of how things had changed.

   “What time is it?”

   “A quarter to ten.”

   Hell’s bells. I expected it to be about 3.00 AM.

   I settled down to try to sleep and after 30 minutes, there was pain and a deep rumble in my stomach. It had been upset for days. I realised that was not my bladder this time that was demanding urgent attention but something that was not going to be solved by a bottle by the bedside.

   The buzzers of other patients signalled yet more demands. I was back in the queue, with increasingly urgent business to attend to.

I intended to get further than this but am having vision problems, so will finish this next time.

[continued]

hospital 1 | hospital 2

Tuesday, November 12, 2013

The dangling leg


Tracey usually tucks the baby in at night; a more pleasant ritual for the baby than for her, but it does serve more than a ritual purpose. 

   I of course am the baby. She helps me turn on to the side I want to sleep. She then packs the blanket a little down my back, and we hope to have a good night’s sleep. 

   I usually sleep as if I have a total shut-down, and often not a muscle seems to have moved till morning. I can't say the same for Tracey, though, but it's not something I can control. There's not much of anything I can control these days.

   Some nights like last night I have something I want to try to finish, and Tracey is tired earlier than I [I can't imagine why!], so I put myself to bed after she goes. It usually works out OK but never so good for me as the tucking-in routine. Getting a near-paralysed foot into the right position to sleep is no easy matter. If it's wrong, the ankle aches all night.

   I woke at about 3.30 am with my right leg hanging over the right side of the bed. That's never happened before. I was diagonally across the bed but managed to get myself on my back, but couldn't get my leg back into the bed. 

   I could have called for Tracey but figured this was something I should be able to solve for myself.

   The best solution was to get the left foot under the right leg and to drag it back in, but I had to be very careful not to slide right off the bed attempting that. We might have been in for another ambulance visit if I did so. Another complication was that the bedclothes – a doona and a light blanket – were slewed across and over the side with the leg. This complicated matters.

   I managed to hook the right ankle with the left foot. With much groaning [in effort, not in pain, but enough to be afraid of waking Tracey, who has lock-on fix on noises from this room]. I dragged the leg back bit-by-bit like a creature going back to its den with its half-dead prey.

   I took a few deep recovery breaths and then raised the bed using its electric hydraulics so I was high enough to turn on the lamp, and straightened myself in the bed. I had yet to unscramble the blankets sufficiently to cover myself. Bear in mind that I have to be able to find a corner of the cover I can grip with the left hand – not a bottom edge! – and bring up the covers in enough order to put them back into place, and that a semi-paralysed right side doesn't allow me to raise my body to do that without quite a bit of effort and a fair dash of luck.

   I was more-or-less successful. I had blankets over me. I decided against trying to get out of the left side to relieve my bladder [it wasn’t urgent]. I didn't know what strength I had left and having succeeded in not-falling out of the right side of the bed I was determined not to do it out of the left.

   I slept fitfully for some time, and then bowed to the inevitable and got up, being super-careful to balance enough to be able to grip the frame left-handed, then stand evenly on both feet before the right-side tremors became too violent to stop me grasping the right hand on to its grip and locking it on. Success. Narrowly.

   That meant I could negotiate my way the one metre to the chair. Be grateful I don't ply you with the steps [mostly backward] that I take to get there. But I did it. I was awake till after the doctor visited at ten o’clock, and Tracey settled me to bed.

   Before that, she told me that I had been making weird noises and movements at 2.30 AM, and she had stayed by the open door for ages in the darkness. When I had settled, she went back to bed. I suspect I had had some sort of seizure, leaving that leg out of the right side of the bed until I found it there. She wouldn't have seen it on the Baby Monitor from its position. I felt happy that I hadn’t called for help with the dangling leg that couple of hours later when she was deep asleep. Happier, I might add, than she was.

   When I woke this afternoon, there was rain beating softly on the roof, and it was 2.15 pm. Every limb, every muscle, every finger and toe was exactly as it was when I closed my eyes. It was warm and blissfully peaceful. I could have stayed that way forever.