Back to: Chapter 8 : Beginning
"And is there honey still for teaÖ.."
9.1 "....be it ever so humble..."
The end of that quiet spell, around six to eight weeks after my arrival in rehab I suppose, was marked by talk of being allowed home for weekends. Many of the patients in the unit were sent home on Fridays, returning on Monday. It was ostensibly to prepare us for our eventual return to the real world but an old cynic like me was never going to take long to work out the hidden agenda. Less patients in residence meant less staff had to work the unpopular weekend shifts.
In occupations like nursing the rewards are not financial but in job satisfaction we are told yet such is the nature of Healthcare bureaucracy in the UK that most of the vocational bonus has been removed and that applies more so to rehabilitation nursing. Nurses are trained not to get emotionally involved but where there is contact with somebody for a long time it is impossible not to form emotional ties. If the staff were to remain remote and unapproachable patients would become even more dissatisfied than most of us were and morale would drop through the bottom of the earth and head off into a black hole. I remember at the time my discharge was imminent, Kathy studying a map to see if there was any way she could include me in the unitís outreach program so that I could visit and raise a few smiles. Short of outright lying nothing could be done. Like many patients in whom a lot of time, effort and commitment had been invested I would just disappear, only returning if my condition deteriorated.
Even in highly paid occupations such as mine it is vital for oneís continuing enthusiasm to keep in touch with past projects. In that way people motivate themselves, can learn from past mistakes while basking in the glory of successes and introduce a pleasant social aspect to their working life. In a bureaucracy there is no such human element, people follow procedure and do not question authority. Words like reward, praise, appreciation are not in the lexicon of most managers in the public services.
The nurses deserved their weekends off and so did we.
The first weekend at home was spent fairly quietly. Being organised, loaded into a "walking wounded" ambulance still in my wheelchair, which was secured to a special track in the floor, and delivered home was a big enough adventure. Throughout the weekend nobody could do enough for me of course so I enjoyed being waited on. Even the cat showed some respect for once.
Those two days marked a change in the nature of recovery, not physically at first, but emotionally. From having been a complete invalid, a hospital patient without control of my own being I had reached out, touching something of the old me.
The most obscene thing about illnesses that affect the brain is that they strip away humanity. Loss of function brings about an utter loss of dignity and self esteem. The worst thing had been needing to be lifted on and off the toilet, closely followed by having to be put in a hoist and lowered into the bath. Equally soul - destroying I expect is the humiliation of being spoken to as a simpleton because the intelligent thoughts in oneís head cannot make themselves into the words that will communicate desires, or of having to ask the names of family members when memory is lost. One man in rehab with me appeared completely normal and was for most of the time. Sometimes though his mind would blank, he forgot who and where he was or what he was doing. More than once he sat for several minutes with a forkful of food halfway to his mouth.
Whilst always trying to think well of other people it is easy to overlook the things that may be going on in other lives, particularly in our modern pressure cooker world. In times of adversity though, one sees the truth of people, after all it was adversity that made us into what we are, the daily struggle to find food and evade predators, to find ways of surviving flood, drought, ice, and natural disasters that taught those strange ape like creatures to use the one weapon they had, their big brain, to gain advantage over their bigger, stronger, faster, better - armed rivals. Take us outside the little box of our lives, away from the safety of our mortgaged homes, our salaried jobs, insurance policies etc. and the same natural forces responsible for turning our ancestors into the dominant species still drive us. In coping with oneís own illness or supporting a loved one through a time of crisis, the bravery, strength, resource and sheer extraordinariness of ordinary people is revealed.
Going back to my home, just for two days, made me realise that my instinct for survival had dragged me through a crisis and combined with those steps a few day earlier really bestowed a feeling that I was on the way back, not to what Iíd been perhaps, but to something I could live with.
The reference was not to my bravery, being stubborn and pig headed and refusing to give in had been a way of life. Teri though had been incredibly brave, she has talked since of being emotionally and physically wrecked but never let me see a flicker of weakness or doubt as she visited every day, talked up the progress made, praised my efforts and brought me decent food. David and Gabby made room in their lives to support their Mum without fuss, both learned to cook, tidy the house (sort of) and do the shopping. My mother never admitted to a momentís worry, she appeared supremely confident her son could triumph over any adversity (actually she would probably have given me a telling off if I hadnít. Mums are like that.) The real bravery belongs to the people who give support, any of us can tough our way through a crisis, after all we sometimes donít have many alternatives.
9.2 "....jailer bring me water...."
Going home had been great but there was still the question of getting through the week. Reading and writing filled many hours constructively but I was getting livelier and sometimes needed something physical to do.
The person who organised recreation and group activities in the Rehab. unit at the time, Brenda, was brilliant. A former hairdresser who had run her own business for many years she was used to dealing with all types of people and was eternally enthusiastic, funny, empathic and patient. When I became ready to mix, Brenda and I got on very well and seemed to spend a lot of time entertaining other patients with our banter. I think the difference between me and some patients was that from the start I was assertive enough to say "No, Iím not doing that." Others, for their own reasons, allowed themselves to be placed with the group and simply sat silent and withdrawn.
People who organise recreation in similar rehabilitation centres must have a very difficult task because many of their punters are in varying states of shock and depression or have just given in and assumed no improvement is available. I have a lot of sympathy with anyone who takes on the job of organising recreation if all rehabilitation centres are the same. The management culture is quite peculiar and much less importance is attached to providing the kind of stimulation needed to promote a mental recovery than is given to the moving around of huge piles of paper and production of meaningless statistics. There was a computer in the unit that became the cause of many battles. An expensive, top - specification machine had been bought but the powers that be could not get their act together to buy any software for it. It seemed every manager in the hospital trust was anxious to function as a regulator but nobody could see the need to actually make a decision or DO something. My offer to help was dismissed and some software I loaded was destroyed because there was no paperwork for it and it had not been procured through the correct procedure. In the end the costly machine bought for recreational use stood idle on a table until it was obsolete.
Donít be discouraged by this story, wherever you are being treated you will encounter many excellent and completely committed people who will support you. But the more you are willing to help yourself or recruit the assistance of family, friends and colleagues the better chance you will have. Oh, and donít be afraid to assert yourself. Few people in Hospital administration understand concepts like customer service or even that we are customers and therefore the people who pay their wages. I can be rather rude at times (you would probably never have guessed if it hadnít been mentioned now) and once excelled myself, after having rather contemptuously brushed aside an attempt to impose authority on me I was told by a management type person "while you are our patient we are responsible for you and you must do as we say."
"The day I allow somebody like you to be responsible for me, Iíll know Iím in really deep poo." I answered.
"Oh dear, what are you like?" Kathy said when I told her. If she hadnít known before she certainly did after that.
What nobody had understood perhaps was that as recovery progressed I was getting worse in the "what are you like" type of behaviour.
On my birthday Terri and the kids (kids? Dave is six feet and Gabby 36B. Still, theyíll always be our babies.) turned up bearing gifts. Beware of kids bearing gifts - they probably want to borrow money. They brought a cake in the shape of a laptop computer and, thumbing their noses as the rules, a bottle of wine. Other people had booze smuggled in, my lot marched through the unit holding the bottle as if it was an oriflamme.
Diane wandered in and reminded us in an apologetic way that alcohol was banned. When told it was my birthday she was even more embarrassed. Sensing an opportunity to lead somebody astray I explained that having a drink was not important (I had only a small amount of wine in a paper cup and was barely wetting my lips with it) nor was the fact that it was my birthday. Most important was that I had reached another birthday. The nurse accepted a slice of the cake and drank a little wine, threatening daily enemas if I told anybody.
9.3 ....just my honey and me, the baby makes three....
Before my humour and joie de vivre came back completely, I needed time to deal with the changes in my life and being alone reading and writing, or in the company of those close and familiar was ideal.
As has been mentioned a tendency to brood can develop so there was a little concern among some staff about this wish to keep my own company. In one particularly annoying incident Teri and our daughter Gabby had come in to spend the afternoon with me. We were sitting around chatting when a nurse came in and said "Some of us are concerned that you spend too much time on your own. Thatís a sign of depression. We think you should be mixing more." Despite the fact that I was enjoying quality time with my stimulating companions the nurse insisted I go and join a board game. The girls went to get a coffee and I made an appearance in the common room for half an hour. It was the first time I have ever played Trivial Pursuit and it was immediately apparent that the fun rating could be vastly improved if, instead of giving the right answer to questions, one had to give the most ridiculous answer possible. This did not endear me to the only other person bothering to answer, who was taking the game very seriously.
Brenda: Which cricketer holds the record for the most number of wickets taken in a Cricket test match?
Ian: This is Freefoot Tweakston, the Barbadian one - legged off - spinner who bamboozled nineteen Australian batsmen with his cleverly disguised long - hop.
Brenda: Ö.and next, what is a bratwurst?
Ian: Ö.a school pupil with lowest marks for behaviourÖ.
There is nothing wrong with playing board games, doing puzzles or making models of course, but these activities should be a matter of individual choice. What annoyed me was that my freedom to choose had been usurped. As one of my favourite writers Isaac Bashevis Singer said "We have to believe in free will, we have no choice."
The most disturbing aspect of the recreation policy was the complete lack of opportunity for creative pastimes. Such a lack of mental stimuli would not be acceptable in the penal system of any European Union nation.
Coming to terms with my own problems was a difficult task. Reading a lot helped. Far from being isolated in my room, I had the company of Steinbeck, Lawrence, Dickens and Ben Elton; Marcel Proust and Terry Pratchett, Joseph Conrad and Joseph Heller; Shakespeare and Stephen Fry. Alone?
9.4 ....a four legged friend, a four legged friend....
Maybe you will not find much inspiration in the words of others; not everybody enjoys reading. I have always wanted to be a writer, my job involved producing reports, feasibility studies, technical documents etc., words are my stock in trade but even so I found other sources of inspiration which helped me put into perspective the changed circumstances of my life. A few paragraphs ago you may recall mention of a great philosopher who helped me understand and accept my situation. Head scratching time? OK a brownie point if you get it right. A philosopher? Kant maybe? Nah, boring. Nietzsche, Camus, Kierkegaad? Hiedegger or Wittgenstein? - Weíre almost doing Monty Pythonís Philosopher song here but not even warm. It was my horse Crog. Didnít I say she was a wise old horse. She had known many owners and spent most of her life as a brood mare, (her pedigree was quite highly regarded among aficionados of the Welsh indigenous breed) and so was used to being moved around. On the day she first came home with me from her previous owner in the south of England, we unloaded her from the horse box and let her loose in the field, she sniffed the air, nibbled the grass, cantered around and rolled for a minute before heading for her new stable and the hay bag I was holding. (Actually it was probably the Polo mints in my pocket that attracted her.) In two minutes the mare took in all she needed to know about the place and decided everything she needed was to hand (or hoof). A horse doesnít need much to be happy, a dry stable, a field of grass with plenty of room to gallop, clean water, food and a doting owner with a pocket full of Polos. Arenít we humans silly? If we have to move house or change our job we worry about it, get fretful and bad tempered, in some cases never settle, trying to cling to the past, to return to a place that does not exist any more, or perhaps only ever existed in our minds. We worry that our clothes are out of fashion and make us look ridiculous, hope people do not think us geeky because we enjoy reading or moronic because we like sporting activities. Why, so long as we have what we need to be happy, what difference can other peopleís opinion make?
For all our learning, our technology, feats of engineering, art, literature and sciences, one thing we have lost the knack of is accepting things as they are. This is why it is destructive to think "why me?" Nobody can turn the clock back and nobody can answer that question so if we are ever to move on we have to accept the way things are and find a way to be happy with what we have. At that stage we have to learn to think of what we can do rather than what we canít.
If you have ever been close to animals in any way, take a little time to think about the way they handle life. It is true that the most domesticated creatures, dogs and cats mainly, do tend to imitate human behaviour but I think they are con artists and are just scamming us. Deep inside their minds, doggy and catty thoughts are going on and they are probably saying to themselves. "Iíve got this human sucker right where I want him or her."
Crog didnít have to con me of course, being much bigger she was in control. She had quite a quirky personality which is probably what appealed to me.
Crogís sense of humour was peculiar. Her idea of a joke was to knock me down in a pile of poo. (German and Dutch people would have loved her.) When she had done this she would stand still and stare at me with her head lowered and tilted slightly to one side, her tongue lolling out and one ear twisted back. When horses look like that I know theyíre laughing at me. Another time she showed more nous than I gave her credit for was during a heatwave. Despite the hot weather there had been several heavy storms and the stableís schooling arena was muddy. One of the girls had let Crog out to stretch her legs because she was a laid back character and unfazed by the distant thunder. The old hose promptly found the muddiest corner of the paddock and was enjoying a good roll when I arrived to groom her. As the weather was still oppressively hot she enjoyed being hosed down with cold water before being brushed and curried. (Not that sort of curry, I loved my horse.) As soon as that was finished I moved to open the stable door. Normally she would stand and wait until she could get at her haybag so it was not necessary to tether her but this time she trotted off straight back to the mud. After another hosing and brushing I made sure she went into the box although she protested. Once the door was bolted the next job was to prepare her feed of oats and molasses. On returning with the yukky but appetising (to a horse) mixture I found the mare looking very pleased with herself. What she was trying to say soon became clear; "You wouldnít let me roll in mud Ian, so I rolled in poo!" Oh well, back to the hosepipe.
Think about your favourite animal if you have one. They actually have a better angle on some things than we do.
Enjoying my own space, being given masses of support by my family and friends, having made a good start with my writing project (needless to say the computer had stayed, it became a lifeline) and never letting myself be bored, reading, listening to my favourite music, BBC cassettes of old radio comedies particularly The Goons and Round the Horne, (another surreal comedy show with a cast headed by Kenneth Horne, Marty Feldman and Kenneth Williams and featuring crazy characters such as J. Peasmold Gruntfuttock, Rambling Syd Rumpole and Dame Edith Molestrangler) and even learning to enjoy TV soaps kept me fully occupied. Most of the staff quickly learned to share my humour and in a few weeks I had turned the corner.
Forward to: Chapter 10