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"I could be bounded in a nutshell and count myself a king of infinite space."
Hamlet, Act 2 scene 2
6.1 ....eagerly pursuing all the latest fads and trends....
Shortly after that meeting the move to Rehabilitation came; I said goodbye to the team on the "acute care" ward, was put in an ambulance and taken to the Young (I liked that) Disabled Unit. Gabby thought I should be quite pleased. "Rehab. is cool, everyone does rehab" she said, displaying the wisdom of a party animal, "but from now on you should always refer to your Brain Haemorrhage and not say Stroke."
When asked why she explained that Brain Haemorrhage or embolism sound like something a rock star or similar cool person would have, but "stroke" sounds like a retired Bank Managerís problem. To the young image is everything. That said, it was a good boost for my confidence to know my daughter still thought of her Dad as potentially "cool".
The specialised care and therapy in the unit did wonders in the early stages. Very soon after my haemorrhage I had decided the most important thing was to hold on to my sense of humour, never allow self - pity to creep into the picture and find things to laugh at in my situation. The staff responded to me in this and we soon established a rapport. Humour had been the vital factor missing from the general ward.
My arrival in Rehab. was not confidence boosting however. Details of the transfer had gone astray and although the people on duty that day knew somebody was coming sometime they did not know exactly who or when. Someone managed to find me a wheelchair and I was parked in the common room until "it was sorted out." Fortunately Teri arrived and took charge of the situation shortly after the ambulance disgorged me. Two hours and an abysmal lunch later things started to look up. A pretty girl walked over to us and introduced herself as Jayne. I had been assigned to the nursing team of which she was a member ("The "A" team, what else," she said) and she was going to take me through the induction process.
From the assessment reports prepared by the Senior Sister, the Physios, Speech and Occupational Therapists all of whom had contributed to the assessment along with the doctors and nursing staff on the ward, a care plan had been prepared. It included physiotherapy aimed mainly at getting me walking again in some way, being taught to dress and take care of myself by the occupational therapists, a course of speech therapy to help overcome the slight paralysis on the left side of my face. (I was not speaking badly at that stage but there was room for improvement) Jayne told me "everything you do from now on is therapy, there will be no more counting the ceiling tiles."
She lied, but I forgive her.
6.2 "....take my hand, Iím a stranger in paradise...."
Jayne was very "inyaface" and lots of fun. She talked to me as if I was an old friend who needed a few shots of self esteem as we took the grand tour of the unit. On the way round I was introduced to the rest of the team members, our "captain" Diane and third member Margaret, the quiet one. Jayne made an instant hit, the other two became good friends over the space of a few weeks but were a little more reserved at first.
The private room where I would spend most of the next few months of my life was comfortable and well laid out. There was a TV set with remote control, a wash basin, some drawers and stuff, another uncomfortable looking but tolerable chair (either this one was not too bad or I was getting used to them) and a window through which, from the bed, I could see the small garden in the central courtyard of the building. Best of all was that everything could be reached with only small movements of the wheelchair.
Teri set about arranging my things while Jayne went to attend to her work.
About an hour later my nurse came back to see how I was settling in.
"Bedís OK," I told her, "but we canít get any satellite channels on TV and canít find the trouser press or mini bar." Jayne laughed. Unfortunately the unit had a strict no alcohol policy and some other staff members took small jokes like that very seriously and delivered a pithy lecture on why alcohol was not allowed. This was a great cause of resentment, at the time nothing was further from my thoughts than drinking but having been told on the ward a few days earlier there was no danger in having a drink and that every effort should be made to enable me to maintain contact with my previous lifestyle, withdrawal of the ability to make my own choices was offensive and an affront to my personal liberty. If the management werenít going to take me seriously, we decided we werenít going to take them seriously and they would find out the hard way I much better at not taking people seriously. Another rule introduced soon after arrival which made me think somebody was either having a laugh or on an ego trip to Betelgeuse was that I had to ask permission before leaving the unit. Had I been capable of going anywhere this requirement would have been an insult as it assumed that should I of my own free will decide to go out I would not be sufficiently well - mannered to let somebody know I was going to be off site for a while. I was definitely not going to take the management seriously.
What Jayne did take seriously to her credit was the emotional turmoil I might be experiencing. It is reasonable to expect somebody who had so recently gone through such an upheaval to feel frightened and exposed on finding themselves in an unfamiliar environment.
Whilst in the acute care ward I went through a horrible experience when one of my neighbours was descended upon by a large group of very noisy visitors. Surrounded by these people who were not threatening in any way but were extremely boisterous, I felt isolated and vulnerable. All I could do was curl up, wrap my quilt around me and, pretending to be asleep, trying to lose myself in my own thoughts. Eventually the panic became so bad that my mind could only be stilled by repeating under my breath, the chorus of a song over and over. At least I hope it was under my breath, I was still pretty groggy at the time, but nobody ever said anything.
Jayne obviously realised such feelings were common. She stayed and talked for a long time, asking about my life and work and telling me about herself, her ambitions and her view of life. That helped and even though the rehabilitation centre had seemed a very intimidating place on my arrival I began to feel more confident.
6.3 "....here comes the mirror man...."
A private room was a real boon. In the Swedish Hospital where I was working before the illness, no patient had to share a room. There were plenty of common rooms and recreation areas but no open wards. The last thing people want when seriously ill is to have to make allowances for others whom we would never meet had the course of our lives not been drastically diverted. I relished the opportunity to be ill without an audience.
There had been no mirrors available in the ward of the main hospital except for one in the bathroom, which could quite easily be avoided by those who dreaded what they might see reflected in it. Small shaving mirrors can of course be angled and positioned so that a full face view is always obscured. Private rooms in the rehabilitation unit had a large mirror over the hand basin and another mirror for grooming and dressing. In such a small room there was no avoiding the moment of truth.
Teri was aware of my reluctance to face the image and said. "You have to look at yourself sometime." She was right so I nodded agreement and she moved the wheelchair into position.
My first reaction was one of relief. There was a reflection. At least I had not joined the ranks of the undead. The picture in the glass looked like me but a lot of weight had dropped off, which was no bad thing. The left shoulder was very wasted and hung limp, with a lifeless arm suspended from it. It was quite shocking to see how quickly the muscle had evaporated away to leave a lop - sided creature with the right side still muscular and well defined. The main thing though was that I looked like me. I do not know what was expected but my appearance had held together well, all things considered.
6.4 "Öthe girl canít help itÖ"
The first evening meal in the rehab. unit was an awful experience and at that point I really wanted to run away. Surely I should not be with the people there. They were obviously ill and there wasnít much wrong with me apart from an inconvenient paralysis.
"Is this all that is left of me? Is this what I have become?" I asked Teri as soon as we could get back to my room. It sounds a cruel and heartless reaction to my fellow patients but things like that can hit really hard. My first few days in the unit did make me realise how lucky I was. What happened was bad but so many people seemed to be worse, memories erased, reason, speech and sensory responses affected, not just by stroke related problems but accidents, tumour, brain disease and other causes. Did someone say he had not won the lottery that weekend. Sorry; I had. I still had my personality and senses, in a way that was winning a kind of lottery.
Jayne came back with my medicine to find me looking out of the window. Teri had persuaded me that I really did not want to discharge myself as the specialised treatment was not available elsewhere and there was bound to be a period of adjustment. People can come to terms with anything of course, but I was still fragile at that time and the move and change of routine had tired me.
"Have you settled in?" the blonde girl asked.
I looked through the window and quoted from Oscar Wildeís Ballad of Reading Jail
"I never saw a man who looked / With such a wistful eye, / Upon this little tent of blue, / We prisoners call the sky."
"If youíre going to get sarky mate, youíll get a slap," she said. We all laughed. At least somebody knew how to handle me. I had been afraid that the people in rehab. would pick up where others had left off and pussyfoot around because of this "terrible, terrible thing" that had happened. That approach may work up to a point with some people but I needed light hearted banter to help me avoid thinking about the downside of my new situation. Jayneís attitude and that of the others while sympathetic and kind had said "hey, itís no big deal so letís just carry on like ordinary people."
6.5 "....round, like a circle in a spiral....
The second day in Rehab was taken up with a number of tests, examinations, informal chats; the car mechanics of the human body found out as much as they could about me before setting to the task of putting me back together. I rather like that mechanics image, medical people need to be put in their places now and again. After all, since the first ape - like creatures came down from the trees we did allright for thousands of millennia before there were any doctors and nurses. Some of the tests upset me considerably as they presented the official assumption that all strokes affect the intellect. The results showed I was experiencing some "problems in perception, mainly connected with spatial relationships." How was this conclusion arrived at? Drawings of different sized geometric shapes, triangles, squares, circles, were displayed and the objective was to match the shapes. Judgements that could have affected my future were to be based on these tests. Strangely nobody drew any conclusions from the fact that better results were achieved on the more difficult tests, a few days later when asked to do further tests I had to explain they were insulting to my intelligence and decline to take part. To prove a point I sketched a cityscape using complex perspective.
To assume that all people who suffer the same illness experience the same consequences does of course make the administration of care more simple. Or it would if it did not build a wall of mistrust between patients and staff. This is a pity because the staff were mostly excellent, committed and supportive. Other assumptions were equally counter - productive. The rehab unit took the view that "because some of our patients have alcohol related problems" it was more fair to prevent everybody having an occasional drink. People who seriously wanted to drink were not affected of course. They simply asked visitors to smuggle in bottles or cans of liquor. Why do people who are given a small amount of authority automatically become stupid. As well as assuming we were all cretins the managers assumed we were all drunks too. After all that talk about encouragement of independence and providing as normal an environment as possible it seemed my freedoms to choose were being removed. As for the stuff about getting permission before leaving, where the hell did these idiots think I was going to go. It was another generalisation, "some brain - injury patients are ambulatory but mentally confused and inclined to forget where they are so weíll treat them all as if they are doolally." These offensive terms are used deliberately to illustrate the reality of official attitudes underlying the Politically Correct platitudes. Words mean nothing unless backed up with actions.
My interview with the consultant was the worst experience. This man, allegedly an expert of rehabilitation, asked what were my expectations of the unit. My reply, that I had heard it was possible to make a good recovery even from a serious stroke and hoped the unit would support my efforts and offer guidance as well as hands on treatment to help me reclaim as much of my life as possible, seemed reasonable. The answer though surprised me. "Such recoveries are extremely rare and you will only be disappointed and become bitter and resentful if your sights are set too high. Accept your disabilities and let us help you learn to live with them." In other words, youíre knackered mate. That wheelchair is your world so get used to it.
I made up my mind then, there was No Way, absolutely NO WAY!
Between appointments the chair was wheeled back to my room. Being in a wheelchair and having to press the alarm to summon help and wait for somebody to come along and push me to where I needed to go was little improvement on lying in my bed in the acute care ward. In the confined space of the private room it was just possible to move from point to point but when after lunch the staff rushed off to other duties, abandoning me in the common room I came face to face with the problem of being in a hand powered wheelchair and only having one functioning hand.
There were no electric wheelchairs available and a hand propelled chair was the best that could be done at the time. The rehabilitation nurses were quite apologetic about the lack of equipment but even so I wondered if they might have been told by the team in the other ward of my enthusiasm when watching motor sport on TV. The unit was built around an atrium filled by a good sized garden. The rooms were on either side of a corridor, making a rectangular circuit. With a few bends and chicanes this would have made an ideal track for Formula One wheelchairs.
The standard Health Service chair had its large wheels separately mounted on stub axles rather than both being on a fixed axle. Great if you have two good arms but as I pushed on the rim with my right hand the chair moved in circles. So the training old Josh Bolland, the games teacher had given me during penal drill all those years ago might be about to come in handy after all. If rehabilitation was about going round in circles at least I had experience. At that precise time it was difficult to see the amusing side of the situation. Frustrated by my continued immobility I was not the happiest little bunny in the field when my mother and brother came to visit. By the time they arrived I had been immobile, alone in the dining room, staring at a wall for nearly two hours. Another man, similarly abandoned a few yards away, who had been told by a nurse on requesting help "I havenít time to deal with you now, Iíve more important things to do," had wet himself, a damp patch on the carpet announcing his embarrassment. Graham came in just as my bladder was about to betray me.
"Got a chair then bro.? Youíll be off down the road in no time," he greeted me.
"Chair? Fat bloody lot of bloody use this bloody buggery thing bloody - well is. How am Ibloody - buggery supposed to bloody move the buggery thing with one bloody buggering hand. If I had bloodt well wanted to spend my bloody life bloody going bloody round in sodding circles I would have got a bloody job running a buggery fairground ride. And look where these idiots have left me for two hours. Iím about to pee. Get me out of this looney bin, I canít stay here, they think theyíre running Colditz." (My actual language would have been more colourful of course. Having worked abroad quite a lot I can curse fluently in at least three languages, all at the same time if the need arises, and in various styles. Cursing in the style of a Cairo brothel keeper is a speciality.)
"Clam down," Graham said, "What were you always telling your staff. There is no problem in the universe that we cannot solve if we step back and look at it from a different angle."
"That was when I had two functioning arms and legs," I replied petulantly. Having found a nurse to take me to the toilet Graham applied his practical mind to the problem and worked out that if between pushes with my good arm, I stretched out my right leg, struck the with the heel like a Rugby hooker (this is a position in the ball game similar to American football but much tougher, nothing to do with cheap glamourwear, killer heels and too much make-up) and pulled forward a little side pressure would keep the chariot in a more or less straight line.
The result pleased me almost as much as if I had thought of the idea myself. Two weeks later of course, I had. (once a management consultant, always a management consultant.)"
Teri arrived shortly after Graham and as most of the dayís appointments were completed, we chatted for a while before my brother left. Teri was staying until early evening when David or Gabby would collect her. Having my wife around made me feel a lot more comfortable and by the time evening meal was over I was calm, collected and ready to get into bed.
There was no way we were going to get my body from chair to bed without assistance and nobody was responding to the bleeper.
Eventually the alarm was answered by Kathy, the senior sister who had visited me in the ward.. Several crises were in progress and with no help available, she had to suggest that she and Teri lift me into bed together. Kathy is a big girl, almost six feet in flat shoes, and Teri is - well, not quite that tall. With at least a foot difference in their height the pair were not going to be able to collaborate easily. I was totally unbalanced and could not help. To make matters worse, though I am not tall, I have always been heavily muscled (there is a pit pony gene somewhere in my ancestry) and pack a lot of weight into a rather dainty frame. Nurses are not recommended to lift patients alone but more alarms were going and Kathy was getting a bit desperate. She decided to go for it. By holding me under the arms as I pushed up with my right leg and clung to her waist with my arm, we managed to get me upright. I felt like one of those vertically challenged Hollywood superstars who has to stand on a box to kiss his leading lady. The girls then propelled me to the bed and laid me on my back, poised precariously on the edge of the mattress. Kathy pushed my legs towards the centre but from that position could not move my full weight. Without hesitation she put one knee on the mattress next to my thigh, threw her other leg over me and lifted my hips into a safe position. From there it was possible to prop me up on pillows.
"Well," said my beloved spouse, when the senior sister had gone. "Cherish that moment. Its the only leg over* youíre going to get for a long time."
"I know," I said, "but if thatís part of the therapy I could be walking again by weekend."
Since that incident I have had an enormous soft spot for Kathy. It had been my rib cage until then.
* leg - over; a British slang term for having sex. e.g. I saw you going home with Sally last night, did you get your leg over?
6.6 .... a slice of good cheese, a young girl on my knee...."
Despite some problems in accepting the regimen it only took a short time to settle. The staff were a likeable bunch and did their best to help me. Some of the difficulties were due to the fact that I was used to calling the shots, not exactly being the boss man, the consultancy business does not work like that, but being involved in decision making, being consulted. A world of petty and often pointless regulations was always going to present problems.
An instance of rules versus individualism occurred a few days after my arrival in the unit. At the time the dining room was still an oppressive place for me and I had been very offended when a request to be allowed to eat in my room was denied. The reason given was that the staff needed to be sure patients were eating properly. Actually I was eating far better than the other patients thanks to the fact that Teri having worked as my Personal Assistant was effectively redundant. Being able to visit every day, she brought in cold snacks, mostly cheese or chicken sandwiches, fruit and the occasional big, gooey cream cake. Without this I would have been very hungry because most of the food provided was not acceptable to my palette. One day I had simply been unable to eat any of the official evening meal. "Arenít you eating that, Ian?" a nurse asked. "Would you?" I replied with a gesture towards my plate, only to be told that if I had an eating problem some counselling could be arranged. Iím afraid I did not react very well. "To any reasonable person the fact this shite is going nowhere near my mouth would prove I donít have any eating problem!" was the retort. That reaction was unfair to the nurse of course, it is the managers who dream up these little ideas. "Letís serve really bad food, say theyíre anorexic when they refuse it and then, when they get really hungry and start eating, heeeyyy its another solved problem for the statistics." In the lobby of the unit was a policy statement which spoke of "patientís dignity and individual needs" being respected. The truth of course, as in any bureaucracy, is that if a problem can be created where none exists the solution requires only a paperwork exercise. Real problems can be brushed aside. One thing that struck me later was that although the management were very quick to write us off physically (physdical problems of stroke survivors are hard to deal with) they were very interested in our psychological state and always trying to involve the shrinks somehow. Psychology is a pseudo - science of course so its easy for a shrink, having decided on the flimsiest evidence that you are crazy to then pronounce the condition cured. Great for the figures of course, but little genuine benefit to patients.
6.7 ....iíll be writing more in a week or two....
Despite the brilliance of the hands - on carers in trying to help me adapt, the "dark forces of conservatism" were never far away. The little mobility I had in the wheelchair and other indications of progress had done wonders for my state of mind and it was time to think about providing myself with some mental stimulation. This was my own idea, intuition had demanded that some kind of project was embarked upon, there must be a goal, something to work towards and almost as soon as my brain started to unscramble itself the plan formed. Now it was time to translate the almost illegible jottings from my notepad into some kind of narrative. In a dark corner of my now abandoned office lurked an ancient (well about five years old) laptop computer. This machine had been bounced around the boot (trunk) of my car for almost quarter of a million miles, dropped down flights of stairs and into puddles, abused and neglected, but showing a will to survive equal to that of its owner, still performed acceptably. The family brought it in for me one day and were helping me set it up when a rather officious nurse came in and asked what was going on. "Weíre setting up my laptop computer," I answered. The nurse disappeared for a few moments, obviously to report back to her fuhrer.
The eventual response was to the effect that the management team would consider the situation and if it was decided that a computer would do not interfere with my treatment permission might be given for me to have it. I donít know whether the stupidity or the pomposity of the reply was more irritating. Teri had not been married to me for twenty four years without learning a thing or two about dealing with jumped up little clerks.
"I will decide," she replied imperiously, "what is good for MY husband. Your job is give him medical treatment not to think for him."
It was not the last time I or a member of my family clashed with authority (or what passes for authority in an inept organisation.) The NHS has a peculiar and self destructive attitude to its customers which stems from the erroneous belief that it provides a free service. In reality we all contribute through taxes so that everybody, regardless of their personal means can benefit from good quality care. In my view that means the relationship between NHS and patient is the same as that of supplier and customer. The customer is always right, even when they are wrong. Good quality care has nothing to do with bossy - boots mentalities. Fortunately the government has finally heard the voice of the public and seems to be on the case.
6.8....i get no kick from champagne....
Quite a number of the team were very interested in my former career, some because of the involvement with a Swedish hospital, some because they wanted to pick my brains about using with their own computers and some because my life seemed to have been quite glamorous. Among the books Iíd had brought in was a tourist book of Stockholm which showed the best aspects of the city. In reality though, office blocks on Business Parks are much the same from Sweden to South Africa. Jayne was talking one day of how great it must have been to fly off every week, work in a foreign capital, to stay in one of the best hotels and eat at popular restaurants. I recalled a conversation Iíd had in Stockholm with a colleague during which, over a very good meal, with fine wine, served by a pretty blue - eyed blonde girl in an abbreviated skirt, we bemoaned the hardships suffered in pursuit of our careers, flying business class, staying in top hotels, abusing our digestive tract with salmon, lobster or steak, having to poison our systems by drinking the best wines and while away long lonely evenings in night clubs in the company of stimulating companions some of whom were beautiful and sophisticated women, all of it paid for by our expense accounts of course. It was absolute torture, sheer misery! Our lucky friends in England could ride to and from work on crowded smelly trains or choke on traffic fumes in rush hour jams, they ate luxuries like Sausage and Mash, Irish Stew or Egg and Chips washed down with a cup of tea and spent evenings helping the kids with homework, watching Soaps or consuming their leisure time with home improvement projects. And these people thought they were hard done by! What bliss their lives must have been. It took hours to get tongues out of cheeks but there was a sadness in the joke. Anybody joining the team revelled in the lifestyle for a few weeks after which we started to get seriously twitchy. It was great for a the young single guys, all of whom in our team were French but the Brits were married and settled. In saying all this Iím just being a smartass of course but the serious point is that anything can become oppressive and all of us need a retreat in which we can feel comfortable and completely at ease. Anybody who has seriously attempted yoga meditation techniques will know what I mean. No matter where life has taken you it is important to have that personal space, shared only with a partner or family, and be surrounded by familiar, personal things. Anything in the world can seem like a hardship if it is not what you want to be doing at the time
I did not tell Jayne or any of the others about those thoughts of course. Whilst not wholly supporting the idea that nurses are poorly paid, (in comparison to other professions theyíre not once a number of years service have been put in) it seems that as in everything the UK National Health Service lags behind reality. Elongated payscales based on years served still exist and many people lose patience and leave without fulfilling their potential. I am not qualified to say whether the job nurses do is worth more than they receive, I do think they have a lousy job and deserve better treatment. It is not so much about pay as self Ė esteem. The whole question of pay and working conditions urgently needs to be reviewed and changes made before the staff situation can change.
It would not have been tactful to joke with the team about the hardships of being an international commuter.
Most AD readers will be American so I should explain the UK's Healthcare system. In addition to Income Tax everybody in work is liable to National Insurance contributions, a tax which is earmarked for provision of social benefits. These include a good standard of medical care for everybody, dentistry, optical and hearing aids and a range of welfare benefits covering unemployment, incapacity, disability payments, pensions and income supplements for the low paid. It is far from a perfect system, the agencies providing these services tend to be bureaucratic and often inefficient but it is good enough for the private sector to have been pressuring the government to dismantle the system and let in private enterprise for the last twenty years. Attempts to do that have resulted in rioting and civil disobedience. We are a very different nation to America, maybe we do not have as many S.U.Vs or dishwashers but Britain in common with other European democracies seems to be a kinder and more inclusive society.
Forward to Chapter 7