Back to: Chapter 6 : Beginning
In my room
"You may break and shatter the vase if you will
But the scent of the roses shall hang round it still"
Irish Folk Song
7.1 "....its a hard life...."
My life had become vastly different in the space of a few weeks and it was taking time to adjust. Even though the rehab. centre was a big improvement in some ways, it had at first looked as if there might be a rough time ahead. Once I had the computer, could read comfortably in the wheelchair, Television was available and a Walkman had been brought in. It was not difficult to keep occupied.
We must never surrender to the tyranny of Boredom .
By the end of the first week I had made the room my own. It was filed with familiar things, books, photographs, favourite music, my own clothes. There had to be some concessions to hospital life though. Never having worn anything more than a gold chain and eau de cologne in bed since childhood I had been issued with hospital pyjamas. Pyjamas are a peculiar garment at the best of time and I never understood how anybody can sleep in them. Hospital Pyjamas are bizarre, appearing only seem to have half an arse to them. The reason for this remains a mystery. They were soon abandoned and I took to sleeping in briefs. Every morning a female nurse came to wake me she would ask on seeing my naked torso "are you decent?" This puzzled me so I asked Diane about it.
"You know how men wake up with the Morning Glory" she said. I didn’t catch on (honest, I didn’t. Don’t forget I hadn’t been well) "Oh come on Ian, Mr Wiggly is standing to attention."
I’d never seen a nurse blush before. Eventually it clicked and I nodded."Well, its a tad embarrassing if we march in, fling back the duvet and come face to face with it."
I always thought this phenomenon occurred only rarely and mentioned it to Teri.
"No," she said. "You’ve always been so dopey in the mornings you just never notice."
That was not hard to believe, some of us are just not morning people.
The items I mentioned earlier were joined in the room by a few personal trinkets and mementoes that were good to have around. An anonymous chamber had become a refuge, a place where the life I once had and that now was so distant was in a small way tangible. At that particular time the task of rebuilding myself seemed daunting.
The pin board on my wall was adorned with information about the unit’s routine, a favourite poem, all the cards sent by friends or colleagues and a picture of my horse Crog (Don’t ask - she was Welsh.) who had foaled while I was ill and was proudly showing off young Arthur, a chestnut colt with a white face. It was good to have a tenuous contact with Crog again. She was a wise horse and a good friend and had taught me a lot about how to handle stress. You will meet her properly later.
Once the room had been personalised the feeling of being an alien passed. It had been important to assert my individualism.
7.2 "....pick me up baby and put me back...."
To my delight I was assigned to Sarah for physiotherapy. This was good, not because she was an attractive girl, all the physios were (even the blokes were quite good looking and nauseatingly slim) but that she had such a great sense of humour. Physiotherapy by its nature involves a lot of fairly intimate contact and to work with somebody who could joke and laugh while wrapping herself round me was preferable to a silent, professional detachment. Although married for many years it should not shock anybody (especially not Teri) if I confess to having been round the block more times than the postman’s boots and not finding physical contact embarrassing in any way. From that position it is easy to keep in mind that what happens in the treatment room is a medical necessity while laughing about how it could look to an outsider.
The first thing my physios had to sort out was the lack of activity in my hip and leg. Not activity in the usual sense of moving, there was no sign of that, but nerve responses. I had learned to stand on a locked knee, balancing with my right leg and making the left into a rigid pillar of bone but before walking could be contemplated some communication between brain and muscles was needed to get the knee and leg moving.
We started off with me sitting on a bench and Sarah on a low stool in front of my body. I then had to stand up. She released my left knee which always snapped into the locked position, and supported it with her two, then with my leg in a normal configuration rather than locked she encouraged me to try and put a little weight on it. This was very precarious at first but once we had mastered the technique a little strength started to return. We tried a little more weight on the left (I should say Sarah did. She simply took hold of my hips and shifted the balance. The knee began to sag but held for about ten seconds before I had to sit or fall.
A few days later this exercise had evolved and I was trying (and sometimes succeeding in) rising from a perch on the edge of the bench into a standing position. "That’s all very well," Sarah said as I looked for complements, the only problem is you’re using your knees to stand up."
"Ah! You mean I’ve been doing it wrong all these years?"
"No, you must have been doing it right. You just never thought about what you were doing. If you’re going to stand on your hamstrings instead of your gloots you’ll never walk well."
"Gloots? It sounds like a cough sweet. Throaty? Suck a gloot. Three delicious flavours."
"These big muscles in your bum," she patted them and we had a lesson on the mechanics of standing up. The problem was nothing on my left side below the waist worked. Sarah made me stand and started flicking my disinterested buttock quite hard with the back of her fingers.
"Ow, that hurts," I complained.
"Its good if you can feel it. I’m trying to prompt the nerves to react. In that way we’ll start to rebuild the connections in your brain." Smack.
"Fine, let’s go for it." I said. Then after a few more smacks, "Sarah, do you get paid well for this job?"
"Not really, why?" Smack, smack.
"Oh, just wondered. Only I know a lot of businessmen in London who would part with a fortune to have you do this to them."
That was the first of several times we ended up in a giggling heap on the floor.
7.3 "....its a mixed up, muddled up, shook up world...."
As well as the support of the nursing team which encouraged me to battle against the medical problems, my progress through those early months was propelled by the love of my family who, I am sure, willed me to improve. Thoughts of being discharged and going home occurred many times every day but I still needed constant care and the prospect seemed quite distant.
The loss of physical function had been hard to bear but coming to terms with it was made more easy by progress in activities associated with personal care. Loss of dignity must go hand in hand with loss of movement of course because the simple acts of walking around, sitting and standing at will and balancing are so essential to those necessary things we would all prefer to do for ourselves in private. That I could not at first sit up was mentioned earlier. This meant of course that I could not use the toilet unaccompanied. Which meant I could not use the toilet. Having a nurse standing by waiting for me to perform killed the natural urges. Before the move to rehab I had managed to hold myself upright well enough to be left unattended for a few minutes. Even so, to have somebody standing outside calling "Are you allright, have you finished?" every few seconds does nothing for one’s self - esteem, not to mention its inhibiting effect on one's concentration. Having to be taken to and from and supervised during is not exactly fun although I suppose it must be character building in a way. Being able to deal with calls of nature alone was a big triumph. Dressing was my next target.
There are several tricks to dressing with only one hand but after two weeks of lessons from my occupational therapists Caroline and Chloe, it was mastered. Standing was still hard work and moving while standing a complete no - no so getting trousers over my hips was quite a challenge. There is a simple technique for tying shoes; anything that had buttons is not worth bothering with.
When I was reasonably proficient, Caroline came in one day with a catalogue of aids for dressing. It was routine to ask everybody if they needed any of the items she said, "but I think you are managing quite well, do you have any problems that need to be looked at?"
"Well I can see a difficulty getting my silk stockings on and fastening suspenders (garter belt) one - handed if I fancy a bit of cross - dressing," I replied mischievously.
Caroline fielded it brilliantly. "We have a device for doing just that and here’s another for doing up your bra."
"Oh that’s no problem," I said, determined to win the point, "I’ve been doing bras one - handed for years."
Caroline blushed. Point to me.
7.4 "....when, when you smile..."
The whole of my left side was affected by the paralysis, including facial muscles. Many people find that such paralysis results in a sagging of one side of the face and difficulty with lip movements causing speech difficulty. My facial problems were not so severe. Although the cheek and area around the eye were numb I could move all the muscles. They were not quite co-ordinated though and I tended to slur words a little, sounding slightly drunk all the time. I was very conscious of this but family and friends said they had not noticed any difference to the way I had always been, (were they trying to tell me something.)
A speech therapist had assessed my difficulties whilst I was in the acute care ward and judged that the important thing was to keep the facial muscles moving. In truth the speech problems were trivial, being caused by loss of sensitivity. Some people experience a loss of access to words (aphasia). They know what they want to say and their voice box can make noise. The process falls apart when the brain can’t get the right messages to the speaking mechanism to make it form the right sound. Others cannot recall particular words. One person I came across later, during a short return stay at the unit for a bit of physiotherapy could only say "when." Conversations would go :-
"How are you today?"
"When when when."
"Ready for lunch?"
"When When When When When."
"Have you ordered anything tasty?"
"When when when when?"
"I can’t eat too much now myself, I have physiotherapy this afternoon."
"When When When."
And so on. I used to play games with the "when" man by trying to phrase questions so that answers of "when" would form a limited but sensible conversation. That may seem cruel to somebody who has not been there but people who have gone through the recovery process will know that the sympathetic contact is very important. The nurses did not have much time for games but they tried to communicate through questions that only required a yes/no answer to which he could nod or give a thumbs up or down.. It did not work very well. Most other patients at the time had their own problems to deal with. By that time many of mine were in the past.
Maybe the man heard the words he wanted to say in his mind but only "when" would come out of his mouth. I do him an injustice though. One night as my old friend Diane was attempting to get him ready for bed he was very unhappy about something and became so frustrated at his inability to make the nurse understand he started saying "fuckingwhen" over and over. At least his vocabulary had doubled.
Enough of time travel though. For now, back to the early days of recovery.
7.5 "…I’d rather be a sparrow than a snail…."
About a month had passed since my arrival in the rehab. unit, there had still not been any positive news. The prospect of life in a wheelchair was no more enticing that it had been in those first few days when I was able to convince myself a quick recovery and return to normal life was on the cards, just more inevitable now there was no refuge in self - delusion. Things moved so slowly. In my job the ability to do the impossible was a necessary part of the skill set and all project managers or consultants were used to moving mountains before breakfast. What I had not realised when deciding to treat recovery like any other project was that the object to be moved was no longer a mountain, it was an iceberg. Seven Eighths was invisible.
Medication kept changing but my blood pressure, although slightly improved, continued to be high. For reasons unknown to me at the time Prozac had been put on the list of drugs. I wasn’t depressed, just pissed off. But as I contemplated a future of watching "Supermarket Sweep" and playing patience (well lets be sensible, Tomb Raider, maybe. Patience, never!) with unacceptably high blood pressure, left side paralysis and any after effects of the haemorrhage that had not emerged, the prospect of living like that for a long time began to weigh heavily on me. Most of the time passed in a quite cheerful mood but a few cracks were starting to appear in the armour. In periods of reflection the thought that I was no longer me and would never again be led to a hope that the next stroke (nobody was offering odds against there being another one) would take me to "the undiscovered country from whose bourne no traveller returns." (great play Hamlet, innit?) My fear had always been that I would be imprisoned in a body lacking any means of letting me communicate with the outside world, either through language or senses. In the unit I had come face to face with the realisation that things could have been worse, a lot worse. Somehow that was no consolation.
7.6 "....I’m on your side when times get rough...."
With my blood pressure refusing to come down to an acceptable level I reached a stage of hoping that my future would not last too long. It wasn’t the despair that sdelf - styled experts talked of so much as resignation. I’d run out of patience waiting for the "surge of recovery." Throughout this text I have tried to be upbeat, even flippant, but it would be dishonest to suggest there were no periods of doubt, of self - loathing, of frustration at a body unable to do as I wished. At no point though was there a loss of hope, every night on turning off the TV or putting down my book I told myself anything is possible and one morning, maybe not the following morning but one future morning certainly, I would wake up with my brain rewired and talking to all my muscles and other bits. Anybody capable of thinking like that is not truly in despair. Nor did I have a death wish, my desire was to live, in the true st sense of the word, to savour life even if I had to take things at a slower pace. The problem was that nobody was prepared to commit themselves on my chances of getting out of the wheelchair. The only possibility I could see was in finding the strength to make an enormous physical effort and just beat my uncooperative muscles into submission. With dodgy blood pressure there did not seem to be much likelihood of success and if the wheelchair was going to be my world I could not get my head round the prospect of living like that.
Life in rehabilitation was a world away from the boredom of the ward. I learned to dress myself and regained enough control over my muscles to sit up without supporting pillows, I could be left in the bath for a few minutes and, more importantly for my dignity, I could use the toilet without anybody in attendance (it was really precarious and more than once I almost fell off but I wasn’t telling them that!) but there was no prospect of going home in such poor condition, Professional care had to be available at all times. Staying cheerful in such circumstances is a hard act to maintain but I did not do badly all things considered. If the family could have willed me back onto my feet they would have done so.Teri, Dave and Gabby, my mother, brothers and sister and all our friends wanted me to get better of course, but nobody could offer anything more than wishful thinking. The professional opinion up to that point had seemed rather similar to a plumber or garage mechanic assessing a job, sucking air through his teeth and saying, with a shake of the head "You got problems there".
"Some people do make a complete recovery but it is very rare." and "the younger you are the better your chance of making a good recovery" was fine in that it did not rule anything out and all the staff commented on my youthful appearance but appearances can be deceptive. (I cheat, requiring the help of a dark brown hairdye every couple of months)
Being a rebel I have never surrendered to the tyranny of numbers and so had never been forty eight but what effect had the years of living out of a suitcase and working under pressure taken? Though sure that there would never be any giving in, I was lost. Was my body in good shape to recover? Was I young enough? I desperately needed somebody to tell me what my chances were.
The surge of recovery people talk about is physical, it is about the body repairing itself and in the case of brain problems is not always visible. In the early stages after a stroke or any similar traumatic event the mental recovery is more important because that is where the will to challenge the physical disabilities must be found.
7.7 "....the fire in your eye is out....?"
Kathy had not been around for a while after she sat on me, there must be a huge queue of patients waiting to be sat on by a beautiful Amazon. I had given her up when one day early in the evening the senior sister walked into my room and made friendly enquiries about my state of mind. As she did what she had come to do, probably take my blood pressure or get yet another few gallons of blood for tests we started to chat. I mentioned planning to write a book. The talk moved on to literature, a mutual passion, then on to life in general. Eventually, I told her that as no-one had offered much hope for recovery it was perhaps time to start planning to do something with what was left of my life. There seemed little point in hanging around in hospital if there was nowhere to go after it. She pulled a chair up to the side of the bed. By this time I insisted on getting in and out of bed by myself so I was lying propped up on a pile of pillows and our eyes were on the same level. With her amazing green eyes looking right into me Kathy started to tell me about recovery following a brain trauma. She had been a rehabilitation nurse for several years and thus had more direct experience of dealing with people in my situation than the more highly ranked "experts" who tended to descend from their ivory towers and pontificate occasionally. I can’t offer a valid opinion on her professional abilities (nice boobs though) but at least she had the good sense to tell me what I needed to hear at that precise time and was perceptive enough to realise that my spirits had hit rock bottom.
She talked at length about the process of recovering, told me how other bits of the brain would start kicking in and taking over from what had been lost in the blood flood, warned that it would be a long, slow process and would test my patience to the limit; a lot of people took many months to even become ready to begin that process.
The extent of recovery she said, depends a lot on the individual’s attitude. It could be a stop - start affair with long periods without apparent progress separating short bursts of intensive recovery.
"What I’m really saying Ian is that I know you desperately want to get better but you have to realise there are no short cuts. You will make a good recovery I’m sure because you have everything it takes to beat this problem, but how much you recover depends on yourself. There are no rules and nobody can tell you how far the improvement will go or where it will stop. That’s why the doctors are non - committal, they don’t want to raise false hopes because many people aren’t equipped to come to terms with what has happened to them and so will never find the mental strength to overcome it. I know that you can if you keep being positive then even if you never walk very far or you need a stick or a frame, you can still do a lot with your life. Hold on to your sense of humour and you are your own best medicine. But don’t try to push yourself too hard too soon or you’ll turn into your own worst enemy."
It was not so much what she had said as the conviction behind it. She was absolutely convinced that I could and would get better. If it was down to me there was only one possible outcome of course. Well two, but the second is not worth thinking about. Two and a half years and a lot of pain later I stand by that.
Why did Kathy’s words mean so much? Well, at that time I desperately needed somebody to believe in me. Teri and my family believed of course, but their belief, like mine was blind faith. None of us could ever truly accept that there was no way back to something approaching what I had been. These words were coming from somebody with a lot of experience of caring for people who were going through similar experiences and emotional storms, from an independent observer who, while on my side, had a professional rather than an emotional commitment to my recovery and she had given me another incentive of course. After all if I drove myself to the point of exhaustion she might just have to sit on me again.
Perhaps I should share with you all that although Kathy never believed me when I told her she is very attractive, she has beautiful, sexy, almond shaped green eyes. If she’d been plain she would have had much more difficulty in persuading me to get better (that’s just the kind of shallow person I am, OK?) How do I know about her bum? Are we alone? (looks round furtively) OK, listen. My guardian angel usually wore a culotte overall made of not very thick material.
Not until after I had been discharged did I find the courage to tell her that in a certain light the garment was semi see - through. You want proof? She used to wear white lacy all in one things. Yeah! Turn on.
(Kathy darling, you made a lot of old(ish) men very happy.)
The great thing about Kathy, apart from the way she entered into the spirit of all my flirting, double entendres and innuendo is her open mindedness. She really does try to communicate with each individual who passes through her care as an individual. Although there is very little support for unorthodoxy she is also interested in complementary therapies. Having decided that, like Superman, I originated from the planet Krypton she hid a piece of Red Kryptonite in her pocket while talking to me, wrapping it up in flattery. Supermen are incredibly vain and the pep talk worked wonders. Once she had told me there was a way back all I had to do was find it and summon up the strength to travel that route.
Forward to : Chapter 8