chapter 3 | beginning
"Had we but world enough and time....."
To his Coy Mistress - Andrew Marvell
4.1 ...pick me up baby and put me back...
Dramatic Music: Taa Ta dat tat Daa taa dat tat Diddle diddle diddle dum
Voice - over man type voice: "Throughout the world, wherever sickness and disaster strike, the corridors of hospitals are patrolled by legendary Super - Heroes who seek out people disempowered by illness or injury and using preternatural healing skills known only to true disciples of the lords of Dai - Hatsu, rebuild them These are the stories of ..... THE PHYSIOS."
Sorry, just got a bit carried away thinking ahead to when we make the film.
The day after Andyís visit was marked by my first contact with the physiotherapists. Sarah and Andrew were young, cheerful and had the innocent air of people who have never met a tax inspector. They introduced themselves and started to tie me in knots.
" Do you watch Supermarket Sweep? " Andrew asked as he knotted my legs behind my head. How ill did this guy think I was? The banal daytime TV gameshow was popular with students at the time (Teletubbies had only just started its first run.) but who knows what it had to do with physiotherapy? It turned out Andrew was a fan of the show - many physios have a surreal sense of humour. I advised him to get out and meet people more and try to progress to Captain Pugwash.
"How do you feel about standing up ? " Sarah asked when the initial examination was complete. It was fine with me but my left leg was not quite so keen. The pair lifted me off the bed and onto my foot. I stood, right leg wobbling like mad as the balance function in my brain, lacking any feedback from the left side, struggled to find a reference point. The other leg hung down uselessly, connecting to the floor but with no real enthusiasm. Seating himself on a low stool as Sarah continued to hold me, Andrew held my left knee between his two. "Standing on one leg is fine, Ian," he observed, "but you canít do it for the rest of your life. Just relax and put some of your weight onto your left." Sarah shifted my weight a little. As soon as the left leg was asked to bear any weight it snapped back violently and locked. Had I been able to feel anything on that side it might have been painful.
It was less than three weeks since the catastrophe and I was standing. It felt wonderful although there would not always be two physiotherapists available to prop me up, it was a start.
"What are your priorities? " Andrew asked , seating himself in the worst armchair in the world which was by my bed. By this time the nurses had been told to make sure I sat in the chair for a couple of hours every day. It was excruciating. My left side had no response at all and the only way of sitting was to hold up my body with the muscles of the right side. After about half an hour cramp would set in. In any bureaucracy, procedure always overrides common sense and I was made to sit in the chair until my time was up. Some faceless suit had said sitting up is good for people so no matter how much it hurt it had to happen.
"Priorities, Andrew? Right now my number one priority is to take a chainsaw to that bloody chair. " He promised to do something about it and told me that because of the paralysis the chair was the wrong shape for me. It looked like any other chair although the garish upholstery would meant expensive interior designers would have used. "OK, next priority? " Sarah said.
" To walk out of this place. "
"You might not walk out of here, " she said, "but you will walk again. Maybe with a stick, maybe with some kind of a frame and it will take a long time but youíll walk, I promise. "
It was the first time somebody had gone out on a limb (groan) for me. I didnít care if she was wrong, we can all make mistakes, but I had something to hope for.
"Donít get carried away, " Sarah said, "You are not going to be entering any Marathons for a while. "
4.2 ...youíre my best friend...
It had taken a some time for the full extent of what had happened to sink in. Now I had to get my head round the consequences. In just a few hours on that night, May 31st, my whole life had changed and it would never be the same. At that time some encouragement, any straw to clutch at would have been welcome. Physically, the improvement continued but with so much time and so few ways to make it pass the days dragged. There were letters and cards to read every day. I was receiving good wishes from people who had hated me (which was nice) and numerous visits from family and friends. Everybody wanted to know what they could do. Most managed, without being told, to do the right thing. They treated me as if recovering from a stroke was no different to getting over a particularly bad bout of flu. The last thing I needed was to be handled as if fragile..
A lot has been written and said about the emotional trauma of a stroke. Most of it is valid to some degree but I wonder how helpful it is to the people who are trying to recover. In the early stages those close to the victim need to understand the emotional or psychological changes that may occur in that person but the thing the patient needs most is hope. In my view, being told frequently that one will feel anger and resentment and constantly ask " Why me? " is only likely to promote or intensify the occurrence of those feelings. Psychologists theories are fine in their place but analysing the polite(ish) responses of people who really want to shout " Look, take your questions and piss off, Iím ill and I canít be bothered " ; is never going to get anywhere near the truth. The only valid objective is to help each person find their own way of dealing with their illness and resulting disabilities. To come along with a template for a stereotypical stroke patient and try to bash us around until we fit it is wrong. The trick we survivors have to pull off in those initial few weeks is to understand that we have not been specially selected for punishment and that we should not dwell upon what is lost but on what we have left. In this we are and have to be individuals. The close friendship Teri and I have enjoyed in our marriage helped us both cope. While the hospital administered medical care and misunderstanding we gave each other the one to one support.
There are all sorts of things going through the mind at this time, people I have spoken to all say they experienced broadly similar feelings. It takes an enormous act of will to survive as same person and sadly so many people accept defeat and lapse into self pity. Medical professionals say they are always cautious about predicting recovery because they do not want to raise false hopes. Thatís out of order because in being careful not to raise false hope they can easily crush the genuine seeds of recovery.
Now that survival in the medium term at least had become a realistic possibility I began to get official visits from all sorts of well - meaning but very serious little people with clipboards who wanted to make me aware of the kind of help that would be available to me as I tried to come to terms with my disability. These people were very sincere, caring and politically correct. And irritating.
Having lost count of the number of times I was advised to accept the likelihood of spending the rest of my life in a wheelchair the most annoying phrase in the litany became the often repeated advice "you must not think of yourself as disabled, just differently abled. You can do everything any other person could do, but in future you will do it from a wheelchair. " This attitude is great for helping somebody disabled (sorry, differently abled) from birth to understand that their scope for doing silly things like bungee jumping is limited by different factors to most people, and it is true to say that speaking of "normal " people is incorrect because no two people are the same. When I spoke of wanting to be normal again though it meant regaining my normality. Prevented from taking long walks in the mountains or along the shore, throwing my sailboards on top of the car to go windsurfing or saddling up my horse, and hacking round the local bridle paths I was not able to do the things previously made available by virtue of having working limbs in sets of two. In any sensible definition that is being disabled because one could not do these things from a wheelchair.
4.3 Ö.you need hands to hold the one you care forÖ.
OK, I was differently abled, they won in the end. It wasnít worth arguing and easier to pay lip service to the mantra for a while. At that time it was impossible to see as far ahead as visiting the High Street again but sooner or later the realisation would have to be faced face that the vast majority of people walk around using legs and feet. If the wheelchair bound were not disabled then science would be seeking ways of grafting a set of wheels to everybodyís arse. Do things from a wheelchair? Puh!!!
The other really annoying thing about those early days was being repeatedly told about how I would feel on coming to terms with the loss of a lot of my physical abilities.
" Stroke Patients become very depressed, " I heard many times.
" Stroke patients will burst into tears or fly into a rage for no apparent reason. "
" Stroke patients will become irrational.... "
and a few other little nuggets of received wisdom that have already been mentioned were recited frequently by people who ostensibly are interested in promoting positive attitudes. Did these people not know any decent jokes, I wondered. Yes, it is easy to descend into troughs of depression when contemplating a future with a dysfunctional body but many people experience similar despair on contemplating another week in the office while going to work on Monday morning. A good laugh does more to lift the spirits than all the well meant advice in the world. Looking at the serious little faces around me I decided that they were more desperately in need of a laugh than I . And why did they talk about " stroke patients "instead of telling me "you might " experience this or that. I didnít know any stroke patients except me and was sure by that time I would not burst into tears or fly into a rage so long as these people would just get out of my face. One thing many find is that we tend to be less able to sit on our emotions and so laugh or cry more easily. This is quite different to the phenomenon that causes some people to cry when they want to laugh and vice versa. In hospital there was not much to cry about (other than the food) but I often would laugh uncontrollably at things that were only mildly funny. That is no problem really, the world needs all the laughter it can get.
It was very frustrating for friends when I tried to tell a joke but couldnít get the punch line out for laughing. Anyone who was taken to Blackpool as a child and remembers laughing doll outside the fun house will get the picture.
4.4 Ö.there ought to be clownsÖ.
My first attempts at humour were fairly pathetic but the wit of Oscar Wilde would have been wasted on the serious little people who were treating me at the time.
"You will probably not get much use back in your left hand, " a white coated seriousette said one day.
"Donít worry, " I told her, "Iíve mellowed with age. I never drink two pints at once these days and that was all I ever used it for. "
" Heís in denial, " the solemn one told my wife later, in the hushed, reverential tones usually reserved for telling somebody that dog has just died or their favourite football team has been relegated. "its quite common in stroke patients. "
Those bloody stroke patient stereotypes again. Why would these people not be convinced that I was me, an individual, not some anonymous stroke patient who would be happy to fit into the box. If I was going to get over this it could only be done my way (cue for a song) I was not in denial (what a horrible touchy feely phrase that is anyway), I was acutely aware of all the problems. My left arm and leg did not work any more. Those things were facts of life and there was no point in denying them. Nobody could have done anything to "help me deal with it. One does not have to deal with something like that, like Mount Everest it is simply there. To make light of a thing is not to pretend it is of no significance but more often perhaps indicates a desire to handle something alone and talk about it when one is ready without being advised to "get in touch with your emotions and release your anger ".
The whole of my left side from the neck down did not work. All the counselling in the world was not going to bring it back, that was just the way things were. It could have been turned into a big tragedy but I chose not to take that route. "Denial my arse, " I told Teri later, thus pre-empting a national catch phrase by a good two years.
4.5 .... ha ha ha ha ha ha ha ha haa.....
Many people have asked me how it is possible to dismiss a life threatening and debilitating illness with humour. It is not easy, but humour is the best protection against a descent into self - pity. Anybody who goes down that road is in big trouble. For myself, the choice was simple. Did I think " Oh thatís really terrible, Iím paralysed and my life is ruined or say to myself "phew that was a bit too close for comfort but Iím still here, what do I do now to make sure I keep having fun?" Nobody has ever been prepared to discuss just how life threatening the situation was, perhaps readers should draw their own conclusions from the fact that whenever a medical person was put on the spot they always became evasive and changed the subject. The after effects, though considerably lessened by time, familiarity, hard work and help from the carers who took the time to know me, are still plain to see and I am reminded of my condition constantly by pain, stiffness in movements and by the inability to do many simple things. Laughing at problems seems the best way to deal with them and anyway the doctors still had not sorted my blood pressure. I did not know how long I had but was not going to waste the time being miserable. Laughter is perhaps a very human response to danger and adversity. Those who have taken part in high risk sports often speak of their urge to laugh after experiencing the exhilaration of putting their lives at risk. Humour of course is full of violence and death. There is an old joke that goes: laughter is only one letter away from slaughter, " knock íem dead " backstage crews say to comedians who then go out and slay their audience with a real killer of a joke. Or if the audience do not laugh, critics will say the comic died. Danger and laughter seem to be primeval partners. Black slope skiers, white water rafters and bungee jumpers all emerge smiling or laughing from their experiences, the laugh is a release of tension. Hunters in primitive societies around the world seem to indulge in clowning celebrations after facing and overcoming large beasts while armed only with primitive weapons. One might imagine that twenty thousand years ago a tribe of cavemen returning from a hunt were possibly joking with each other on the lines of "Hey, did you see old Ugís face just before that Mammoth stomped him? Ha - ha. he looked like an ape that has let go of the creeper before it checked there was a tree to grab. " We still laugh at that same joke of course, we have just made it a little less personal by transferring the comedy of misfortune to cartoon characters. Tom in his pursuit of Jerry or the ineptitude of Wile E. Coyote as he attempts to trap the Roadrunner are merely representations of human folly so that we can laugh without appearing cruel. The laugh is prompted not because we enjoy seeing somebody step on a garden rake so that it springs up and hits them in the face but because we know from our own experience how easily a little carelessness can lead to pain or injury and are glad it has not happened to us. A stroke is not funny nor are the consequences but humour is essential in dealing with those after effects.
4.6 ....Is this the real life, is this just fantasy....
While lying staring at the ceiling my mind would occasionally click into gear. Sitting up in bed was difficult, even with support so I could not read a book very well but started to make up my own stories to pass time. The first concerned the adventures of an itinerant terrier juggler, Epiglot Merkinson, and his crusade against oppression and injustice as he toured the fairs and markets of Medieval Yorkshire. It was not pure craziness but an allegory on the creation of the underclass in nineteen - nineties Britain (no doubt the seriousette would have said it indicated a desire to deny my problems by regressing to the socialist views I held as a young man.) but was also a very surreal pastiche of the " Brother Cadfael " stories. There was a notebook by the bed in which my musings were scribbled and I longed for the day when I would be able to have my laptop computer brought in. In addition to Epiglot I drew upon childhood memories, past romances and the craziness I had seen in the world. It was the craziness that led to Schlocky, a totally off the wall imaginary person who kept wandering into my head and demanded that he become the central character in the book I was to start writing during my long period in hospital. "Objects exist in reality but a human mind is needed to surround them with time and space, " the philosopher Immanuel Kant had written in the late eighteenth century. Schlocky (it derives from the German word schlake meaning dregs or trash and so means trashy or tacky) had a machine in his nightclub that picked up human thoughts and gave them solid reality in time and space. In other words Kant had been twisted in Schlockyís, "ideas exist in time and space but it takes a human mind to give them reality " or something like that.
Teri was always pleased to hear of these bizarre conceits. Although surreal they were completely consistent with the type of humour that had been familiar to her throughout our marriage, a tangible link with the person she had known.
4.7 Ö.penny lane the barber shaves another customerÖ.
The nurses were fun. By my fourth week in the ward the boredom was desperate but getting to know some of the staff and becoming friendly with them relieved some of the pressure. These people have the worst job in the world, they are paid a pittance and they suffer the brunt of patients ire after the doctors having pontificated go away leaving more questions than they answer. Not all nurses are wonderful, some may be very good technically but are short on patience and empathy, others are just disinterested but broadly speaking the profession delivers a good product with good humour.
Some of the junior doctors were great fun too, a young man called Dylan was always ready for a laugh and the jolly but permanently harassed registrar helped a lot. We nicknamed her " Jennifer" after a song. She could be relied on to cheer me up and had the ability to talk about my concerns without medical jargon. All professions use jargon as a form of shorthand when talking to each other but many doctors have an irritating habit of throwing around phrases like "you have a crenellated atrium on your quinquiescent pantile " as if they expect us ordinary punters to know what it means.(6) The specialist consultant was human too, but some of those who came trotting round with a gaggle of medical students in tow were rather disturbing. One announced, without bothering to acquaint himself with the details of my illness that I should be on aspirin and warfarin, which is standard treatment for strokes. Hang on! Even I knew those treatments are for blood clots. My problem was caused by a haemorrhage. Thinning my blood and preventing it from clotting in the case of any further bleeding was not really the right way to go. What happens to some people when they become consultants? There are only two qualifications required to be a hospital consultant, an ego and a pulse (Iím being very unkind to doctors but enjoying myself and doing it well so its showtime!) and I rather suspect the imperious attitude is often prompted by watching too many medical soaps and imitating fictional role models.
One of the male nurses on the ward was rather twee (enough said, OK?) Tweeness is not a good qualification for working with patients who cannot take care of their own body functions. It was hilarious to watch this person because whenever somebody needed a bedpan or to be helped to the toilet he would always remember that something needed to be done very urgently at the other end of the ward and the person with the pressing need just had to grit their teeth, cross their legs and hope one of the girls came by. This type of problem seems to have arisen since nursing became a "degree" occupation. As with all primarily hands - on activities, all the theory and academic knowledge in the world is no use when it comes down to the nitty - gritty. With my I.Q. of 156 I could never be a nurse or even a doctor, I just do not have what it takes.
4.8 ....loveliest of all was the unicorn.....
Most of the girls were fascinated with my tattoo. This was not a youthful folly or the sad act of a middle aged man refusing to grow up but a rebellion. The country had been through a terrible recession and I had seen my business on the verge of collapse and been close to personal bankruptcy. Having managed to pull it back together I found during the three years of hard work it took to achieve financial stability, the revolutionary spirit of the sixties, the silliness of the seventies and the selfish optimism of the eighties had evaporated from the world. In all walks of life the overbearing forces were fear and a pressure to conform. I was in a long term contract with an American corporation which seemed to think it had a right to impose moral as well as professional standards on its staff and associates. It was not a pleasant atmosphere in which to work but the situation did not permit the drama - queen type walk out it deserved. I had to stamp my foot somehow and knew the corporation would have been appalled at the idea of a senior consultant (even a freelance) having a tattoo. There were no actual rules but it was made clear that body decoration was frowned upon. Body decoration included heavy make up and ostentatious jewellery. So having a tattoo was not a choice, it was a matter of principle, an affirmation of the fact that I could still be wild and irresponsible, impulsive, capricious, mad and above all my own person. It was a futile and pointless gesture because the design was put high on my thigh, above the shorts line, so even on holiday, nobody would ever see it without an invitation. As I told the nurses they joked about the vulgar symbolism of the Unicornís head, particularly in that position. Futile gestures are not a waste of time or money if they help us believe in ourselves. In hospital I realised that there would have to be a lot of futile but symbolic gestures in the future if I was to survive as a person and not just a shell, nothing as big as a tattoo maybe but small things that enabled me to assert individuality.
Forward to Chapter 5