The latest chapter in the book. The full text will be available online here as a free e-book just as soon as I have prepared all chapters for AD presentation
Back to : chapter 9 : beginning
All You Need Is Love
Nothing you can do that canít be done
John Lennon & Paul McCartney
10.1 ....do you gaze at your doorstep and picture me there?
At first my speech had been quite indistinct but a lot of that was to do with the fact that phrasing and pronunciation required more concentration than was available. In the acute care ward I had been given a set of "gurning" exercises and lippy syllables (puh, buh, huh) to practice. Also there was the question of sibilants, "ssss" had become "sh".
When in my own private room in the Rehabilitation Centre, I practished and practished and with daily visitsh from Maureen, the therapisht, shoon made progresh. By slowing down my delivery in order to think about pronunciation my accent changed from a hybrid of non - specific northernern English to something much more closely related to the posh(ish) school accent that had been drummed into me as a boy. When the family had moved from Shropshire to Manchester in the early sixties I worked for hours to acquire my glottal stops and staccato vowels in an attempt to fit in with the new schoolmates. Now those hard sounds were lost overnight.
It did not take long to move on from syllables to phrases. Although people said my speech was clear there were some problems and Maureen left a set of exercises to be worked on at leisure. The old elocution lesson favourites like " How now brown cow," or "the rain in Spain etc." quickly became boring despite my trying them every way possible; cockney, "Har nah brahn car," Prince Charles, "Hi nye brine kie," Scottish, "Hoo noo broon coo" - and all the rest .
Fortunately poetry has always been a great love of mine and reading favourite verses aloud seemed like a good way to progress. Physiotherapy was in the mornings so after lunch I allocated myself a reading slot between the news and "Captain Pugwash."
This had gone on for a few days when one afternoon a nurse popped her head into the room as I was getting into something fairly robust and dramatic, probably by Dylan Thomas, and asked if anybody was with me.
"No, Iím alone." The reason for the question was not apparent.
"Are you sure Ian, only I thought I heard you talking to somebody?"
"No, thereís been nobody in for a while," I assured her.
She gave me what is called an "old fashioned look," and repeated that she was sure she had heard voices.
"Oh, yes! I was talking to Elvis. He pops in for a chat every day."
The nurse retired quickly.
Later in the afternoon Teri came on her daily visit. I had dismissed the incident but the nurse came back and asked for a word with my wife, using those hushed tones reserved for the recently bereaved or somebody whose 100 to 1 win bet has just been beaten by a nose in a photo finish.
"Is Ian allright?" she asked Teri.
"I think so, why?" The hushed tones had given my loved one the jitters and she was expecting to hear bad news.
"I came in earlier and he thought he was talking to Elvis Presley." My hearing has never been good and is deteriorating with age but this exchange was quite clear and I was nearly splitting my sides. (It was like that famous scene in "The Life of Brian" where Pilate is asking the Roman soldiers if they find the name of his friend Bigus Diccus funny.)
This took place in August 1997, soon after the twentieth anniversary of The Kingís death and the newspapers were full of sightings, contacts through mediums and images of the singer being found in all sorts of vegetables and fruits (by all sorts of fruitcakes.) Insufficient value is placed on humour as therapy by practicioners of conventional medicine. Perhaps they should sack a few psychologists (who take themselves far too seriously) and hire some stand up comics instead.
After a pregnant pause the nurse went on "Do you think he perhaps needs to see somebody?"
"I think," said Teri, "if anything its a sign he is getting better."
10.2 ....ever so naughty, Sooty....
It took some of the nursing staff quite a while to get to know me. When one is trained to look for signs of confusion or instability there is a little readjustment needed when somebody with a surreal sense of humour comes along and refuses to take hospital routine seriously.
During the first few weeks in Rehab my left arm continued to be useless but the physiotherapists had told me to move all the joints, particularly my fingers and wrist, using my right hand. Left to do this I soon found a way to act the fool by returning once more to childhood. Lying in bed I would hold up my left hand so the elbow was vertical. Then, pushing and pulling with my right hand would move the left one around.
Diane noticed this and asked what I was doing.
"Iím playing with Sooty," I said, referring to a glove puppet character who featured on children's TV for several decades. She treated me to one of those long hard looks. I continued, "Well, when I came in hospital they took my clothes and Sootyís bear suit. Heís been in a coma so nobody noticed.
"What?" she said, getting even more worried.
"You know, Sooty. Its my glove puppet only I havenít a glove." Then I explained that I had been exercising my hand and was just finding a way to make the it more fun.
"No wonder people worry about you," Diane said.
I had first introduced bare Sooty Bear to Teri on one of her daily visits. Over the years she had heard many times of the Sooty puppet I had as a child and the shows put on for my brothers and sister. These always ended with the younger ones getting wet.
My Sooty was never as good as the real one, after all without finger movement he could not manipulate a water pistol or hold a hammer, but he seemed to work magic somehow because after about a week of playing the game I recovered enough control in my wrist to hold it firm. At least I would not have to put up with Dave and Gabbyís jokes about having a limp wristed father any more. Then, a couple of mornings later, while doing my routine self examination I discovered the tip of my left thumb would move about a quarter of an inch. It was the first sign of voluntary movement returning in that hand and arm.
Jayne came in to take me for a bath and as she entered the room I attacked her.
"Jayne, Jayne, look at this, look, LOOK. I can move my thumb."
"Wow! Letís see," she said, sounding almost as exited as me.
"You have to get pretty close or youíll miss it," I said as she bent down. Proudly I demonstrated the tiny movement.
"Thatís great," Jayne told me. "You see, you have been whinging that nothing was happening and all the time your brain has been rewiring itself. Well thatís a start. Keep working on it and more will keep coming back but its a long, slow process so donít expect too much. And in future trust me, Iím a nurse."
As soon as I was bathed and dressed I rushed round to the payphone to tell Teri the news.
To celebrate the return of movement and confirm the efficacy of Sootyís magic powers Diane delved into her toy cupboard and the next day brought me a glove puppet. It was a little girl bear which the nurses thought a more appropriate bedmate for me. The childís toy would not fit my hand properly and was given pride of place on my dressing table where it became a kind of mascot, watching as more movement came back.
10.3 ....itís a manís world....
Sooty may have done great things for my arm but the hip and leg were giving both me and Sarah some grief. We spent many sessions trying to get my "gloots" to hold me up, inspiring enough activity in the muscles around my knee ("quads") to let them bear some weight without collapsing. This was achieved by lowering the height of the treatment bench to what would have been about right for a childís chair, Sarah sitting in front of me in the familiar position with my knee resting between her two and manipulating the hip position so I could not cheat and put all my weight on the right leg while I lowered my bum until it just touched the bench and then raised myself again. I did cheat of course and Sarah must have been fed up of saying "youíre using your right side Ian, let it go and trust your left."
We all have an instinct for survival and mine kept saying, "never mind trusting your left side matey boy, you know damn well if you do there is only pride and willpower to hold you up. In a half hour session Sarah would spend some time massaging the leg and moving the hip, knee and ankle joints for me, then we would do about ten repetitions of the exercise. I was often sweating by the time we finished.
The therapy worked, in a short while I was standing quite steadily and moving myself from wheelchair to bed without the need of the swivel board.
The Occupational Therapists had suggested I should keep a diary. Such activities help with concentration and it is sometimes useful to be able to look back on certain events in oneís recovery. I have never been able to write up a diary; finding throughout the period in rehab and since that the important events are etched on my memory. Whether that thumb moved on August 6 or August 9 is irrelevant. The emotions I felt and the thrill of sharing my joy with Teri, with Jayne and the rest of the team and with my family and friends as they visited will never leave me. Anyway to start bothering about dates would have been to surrender to the tyranny of calendars, which we must never do of course. Also, to keep a diary is to surrender to the tyranny of paper. I was not interested in recording that about a week after my thumb moved I trundled down the corridor to the toilet, got out of the chair using the grab rails and peed standing up. That isnít the exact date but near enough. The important point locked in memory was I left the seat up. (Its a man thing, OK girls?) Dates are not important, achievements are and they were recorded not with dates but with the feelings they prompted. Another little goal attained, another bit of independence achieved. The idea of the diary is sound, many people have problems with memory and some just like to keep a record of things, but it is just as important to give to remember the feelings too.
10.4 ....staccato signals of constant information.....
As weeks passed and my energy began to return thoughts of what I could do to speed recovery occupied me. The staff who looked after me were excellent and no amount of praise could be generous enough for what they did. One criticism they must accept though is that like all medical professionals they are not as forthcoming as they might be with information. Too often the attitude seems to fall into the "just do as you are told and leave the thinking to the experts" department. It is easy for them to forget of course, especially with people who are often not at their most communicative, that we all have one unique qualification. Each of us is the only person in the world who can possibly know what it feels like to be inside our body. From questioning people closely and reading whatever I could on the subject it was easy to learn a little of how chemical messages commanding movement are formed in one part of the brain and transmitted through others until they make their way into the central nervous system. Constant repetition helps movement patterns become "burned in" so that the movement becomes more automatic requiring less conscious effort to make it. In a case like mine, the messages are formulated and sent out from the brain area (lobe, cortex, thingummy, wotchacallit - Iím not very good with the technical terms.) where they originate but to reach the nervous system would have to pass through or be processed by something that should go on in the damaged tissue. So the message never gets where it is going. Having worked in computers helped my understanding here. When the computer industry started building Local Area Network and Internet technologies in the late seventies the electronics engineers developed a protocol for communications between computers that is similar in some ways to the way the brain communicates with the body. Computer people are often accused of re - inventing the wheel but few people realise we re - invented the brain. Thinking in these terms helped me make a mental picture of nervous system and I would repeatedly visualise movements, picturing the data packets of chemical information going from the server (brain) through the communication cables and microwave systems of nerves until it was received by the client (muscle) which acknowledged the message once the task had been completed. That process was very personal to me because the analogy was relevant to something I understood. The imagined nervous system was wildly inaccurate, nerves arenít like that at all but the symbolism worked. Find a way of personalising this process to make it meaningful to your experience if you possibly can. Visualise you own recovery. For example, if you are a lorry driver, imagine London as the brain (they would be wouldnít they?) the motorways as the main nerve paths and the cities and towns as the destination. The message (your lorry) travels through various areas and suburbs towards the motorway leading to the destination. Eventually it gets to the M25 and..... Oh well, forget it. That analogy was not such a good idea after all. It does not really matter what image you use though so long as it is meaningful to you.
10.5 ....if I were a carpenter....
I said I could not offer a set of tools for recovery but I have already spoken about belief and am sure repetition and visualisation will help most people who have suffered loss of movement. How do I know it worked? I donít but how about this. One hot day, while lying on top of the bed, head propped up on pillows. I started to move my right foot from side to side and imagine the left one going with it. After a few minutes - nothing was happening (this isnít a fairy tale; no magic wands, the pumpkins donít change into sports cars, Kathy didnít walk in, snog me and turn me back into a handsome prince.) but I did have a slight tingly, warm sensation in a foot that otherwise had been numb for many weeks. Throughout the long process of regaining mobility I have come to recognise this feeling as the herald of imminent recovery. By recovery in this context I mean that a few days later I could actually feel my foot, it would be a long time before it was useful for anything.
My first efforts at helping myself had been in the bed which was my world for four or five weeks. Then it had been a case of moving my left elbow, wrist and fingers. just so they didnít feel neglected really. (talking to my hand didnít help the more traditionalist nurses understand me though) At no stage did anybody tell me the exercises were good, bad or pointless. Everybody was very keen to tell me not to do too much too soon but nobody would discuss what was too much or when too soon ended. Over the years since then I have found the best way to bring things back is to go to the limit and then push a little further. There were probably stupid risks involved in doing this and the price in pain is enormous but it has worked for me. It is three years into a five year plan and though still seriously disabled Iím more than halfway there.
Perhaps progress would have been more rapid in the early days had my medical condition stabilised. The blood pressure would not respond to standard treatments however and blood chemicals were about as well balanced as a drunken tightrope walker. I tried not to let it worry me and went back to rebuilding movements and my life.
10.6 .... and the people bowed and prayed to the neon god they made....
Material success brings little long lasting pleasure and when my life had come to a sudden, if temporary halt a long way from anywhere it was ever intended it to be I wondered how things had gone so far off track without my noticing. Life is a fragile, precious thing and we should cherish it. To reach the end and have only a house, a pension and a little money to show is not much for the potential we are born with. The things Teri and I had, the holidays, the cars, the social life were pleasant enough at the time but on reflection my happiest hours were spent messing about with the kids on the beach, the quay side or among the rock pools at Cei Newydd in West Wales, walking in the woods or hills around our home with Teri or sharing simple things like that.
Ironically conversations with my wife revealed I had done many things, made many decisions because I thought it was what she expected of me and likewise she had done many things to comply with my what she thought were expectations. Often in trying to please the other both of us failed, each letting ourselves down in the process. Expectations are the curse of modern life. We decided from then on while continuing to work as a team we were going to live for ourselves. Never give in to the tyranny of expectations. Many of the people who send their "Survivors Stories" to the Different Strokes web site talk of how their perspectives are changed by life threatening experiences, how on recovering they begin to think that years spent on the career treadmill or running in pursuit of material status symbols seem to have been wasted. It is not what we have that is important but what we are. Love and friendship, happiness, the ability to like ourselves and tolerate people we do not like, those things mean much more. It does not take great knowledge or talent to enrich the sum total of human existence. We can all contribute by just doing our best and helping those whose best is perhaps not very good. Very often all it takes is trust in people and an ability to listen.
That was all a bit heavy but getting serious sometimes did not mean the laughs dried up.
One day while I was in this transitional period Kathy was passing the room and noticed through the open door that because my left shoulder was very wasted the sweater was hanging badly. She came in and straightened it then flattened a piece of hair that was sticking out (I needed a haircut) "Iím like your surrogate wife," she said while fussing. This was a case of getting ideas above her station, Iíd never have married a nurse, they fuss too much. She was more like my surrogate mum, so much so in fact, another reason to dread mealtimes apart from the food, was being afraid that when I finished eating she would come round with a handful of tissues and give me a spit wash.
There is a male myth in Britain that nurses are sexy. It probably goes back to the time when black stockings were part of the regulation uniform. Now anybody who still thinks it is more than a myth is probably getting the wrong impression from the things Iíve said especially about Kathy, Jayne and Diane. We were having fun, it helped make life more bearable for me and lifted their morale a bit. In a job that involves dealing with people who are more inclined to feel sorry for themselves an incorrigible flirt, even one with scrambled brains, must have been a change. But nurses sexy? Think about bedpans, urine samples, vomit, body odours etc. etc. There are more turn - offs in a dayís hospital life than on a journey the length of the M1. I donít know how anybody working with those things could go home or on a date after work and feel sexy. Anyway my top sex symbols of all time are Morticia (from the original 1960s version of the Addams Family) and Marianne Faithfull when she did "As Tears Go By". Probably not great role models for young nurses..
The fun I had with most of the staff was resented in some quarters. One day, after some repartee with Jayne in the common room I remarked to other patients, "I love that girl, when I get out of here Iím going to adopt her." Hospital staff seem quite at ease with profanities relating to sexual acts and bodily functions but the "L" word causes fear and panic. There have been a few cases of patients becoming obsessed with nurses and stalking the objects of desire but that is no reason to overreact whenever a patient speaks affectionately of a staff member. Perhaps its another case of creating problems to make the statistics look good. My case must have created a lot of paperwork because I tend to throw endearments around as if they are going out of fashion, darlings. Its a pity though that the medical authorities did not act with such enthusiasm when a doctor practising not a thousand miles from where I was doing time was suspected of bumping off his patients on a regular basis. One law for them perhaps?
10.7 ....Jambalay, crawfish pie, file, gumbo....
Physiotherapy was going really well at that time. Things did not appear to be moving in response to commands on my left side but there were good signs and feeling was starting to return in places.
Poor Caroline, the Occupational Therapist was finding me much harder to work with. Things like playing with bricks, assembling little shapes, putting wooden tubes onto pegs and playing draughts were accomplished easily but with such obvious disinterest there was little point in doing them. The "worst case" mentality of NHS managers has already been mentioned and this mindset was very apparent in Occupational Therapy. Caroline was a sweet girl and I did not want to be awkward but the clichťs were out in the open in this situation and prompted a bad reaction. "Stroke patients become childish" (so make them do childish things), "stroke patients cannot concentrate well, (so present them with tasks that will not hold the concentration)" etc. etc. I know these things are true in some cases but the majority "stroke patients are mature, intelligent human beings and resent being treated like dull minded infants" would be equally appropriate.
Cooking had always been an interest if not quite a passion of mine. Caroline, wanted to get me doing things other than reading and working on my novel and as I displayed little interest in jigsaws, board (bored?) games, painting lumps of dough and the usual sorts of things she was quite keen when I suggested doing some cooking. Scones, Raspberry Buns, Biscuits she suggested. "I think not, but if weíre being silly how about the other extreme Filet Mignon, Chateaubriand, Pork Calvados?"
The O.T. was up for it but I had been joking. One of the functions of Occupational Therapy is to teach people who will be living alone and fending for themselves how to handle kitchen tasks. This being the NHS it is no surprise that Occupational Therapists who must do the teaching are not taught to cook. When we had decided I could invite Teri for lunch and Caroline checked in with me to make up the list of ingredients for our trip to the supermarket I found myself having to explain what Pesto sauce, Ciabatta and Julienned vegetables were. No worries, we hacked it between us and I treated my wife to Fillet of Plaice with tomato and onion sauce, served with Julienne of carrots and courgettes accompanied by Ciabatta. Simple but delicious.
Forward to : Chapter 11