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Sunday, January 30, 2011

Taking Charge
My interest in acupuncture goes back a long way, but I never suspected it would end up being so important in my own recovery.
The initial interest stemmed from Kirlian photography , . Semyon Kirlian had originally caused some excitement in the late 1930s when he showed that an object on a photographic plate connected to a source of high voltage gives off a small corona of discharges. He caused controversy when, from his experiments with a dying leaf, he suggested that the discharge represented some life force which gradually extinguished with death. This has been debunked, and the effect may simply be the gradual loss of water from the leaf as it dies, rather than anything else. However, to a medical student of everything, the thought that the body put out energy that might be seen or measured was an intriguing one.
Later, there was a science show on the BBC in the UK, maybe in the 70s, led by a very enthusiastic and well-respected interviewer (and I can no longer find a reference to it in the BBC Archives or elsewhere and, embarrassingly, I can no longer remember his name (maybe James Burke)). Essentially, there was early discussion about the Kirlian phenomenon, and then they darkened the theatre, and demonstrated what looked like electron discharge from all sorts of places on the body, finally referencing this to Acupuncture meridians and points on ancient charts. Having been switched off by the arguments about, and ultimately refutation of, the Kirlian phenomenon, I was definitely switched back on.
Some years later, both Jan and I struggled with painful conditions that needed medication and care. She had a period of rather frequent and severe migraines; I had shoulder pain and other muscular pain from overdoing it at Karate (too much youthful enthusiasm, too much force, too little technique!). Recently come onto the market was a self-help electronic, battery driven, acupuncture machine (the Acuhealth) devised at the University of Adelaide. It was hand held, simple to use, and the instruction manual was detailed and clear with sequences of points to be ‘needled’ (that is buzzed) either ‘positively’ or ‘negatively’, for a wide range of common conditions for which all the sequences of points were carefully detailed. There was some introduction to Chinese medicine thinking, but we moved swiftly through this to the practicality of maintaining our own health when necessary. We just followed the instructions to the letter, and it worked - mostly. There were times when the migraines were not helped, but really we were both impressed. The machine still works, 20 years later.
So, we got used to the idea of acupuncture points, meridians, and sequencing of treatment, and I became quite adept at using acupressure on those same points – after all fingers and thumbs are even more portable than a hand-held machine. There was no question that it worked; theory as to why seemed irrelevant.
My early training in Karate did not include much about pressure points, or points to be struck. It was an oversimplified version that taught stances, punches, blocks and kicks through a system of physical practice, repetition, and correction; to be honest, it was mostly about strength and power rather than finesse and deep knowledge. The same with Kata, it was simply about learning the movements from seeing and doing, and then lots of practice, lots of repetition, and lots of correction. Over 9 years getting to my first black belt I became fit and strong, reasonably quick, could defend myself (mostly) in the Kumite (fighting), and actually won some awards in Kata competitions (forms or sequences of dance-like movement –OK it was in the Veterans division). After a while the somewhat meaningless rote of training twice or three times a week can get boring, and even though I was teaching over the last few years, on moving to Queensland I gave up for a while.
I picked it up again when my son returned from the UK to live in Brisbane and started a new style of Karate which was more about the fluidity of movement (Goju Ryu), and less about being some sort of human tank (Shotokan). He has a depth of understanding about the why and how of Karate I found fascinating and, with his encouragement, I began to collect videos of various masters, other styles, and technique. I was constantly introduced to new books explaining what a specific Kata or a sequence of moves was supposed to do to the opponent’s body, and of course much of it relates to Acupuncture points. You can think of Karate as self-defence. There is a basic rule that there is no first strike; in other words, you don’t start it! Within this, and as part of a response to the recognised (and surprisingly limited) variety of habitual acts of human violence, in defending, you can think about attacking muscles and weakening them, damaging superficial arteries or nerves to reduce the control over key muscles and movements, or you can think about joint locks or even breaking bones.
But our style of Karate is in some ways much more subtle than that and targets points on the body that are poorly understood in Western thinking. One issue is that you can cause considerable pain by hitting or pressing on a particular point that coincides with an Acupuncture point in Eastern medical practice. More than that, a defined sequence of strikes can cause temporary paralysis, weakness or even unconsciousness . I have read and re-read many core books (for instance The Bubishi – known as ‘The Bible of Karate’ and translated by Patrick McCarthy ) that describe and explain these, I have attended many specific seminars on how to do this, and I have practiced. So to my half-baked knowledge of medical acupuncture, I have added some depth of knowledge about acupuncture points that are relevant to the art of Karate. This is complex stuff, and I still have a long way to go to reach a full understanding and an ability to use the knowledge appropriately and skilfully.
In Brisbane, Rod began a four-year graduate course in Acupuncture and Eastern Medicine, and I listened with fascination to his synthesis of lectures and concepts. Central to the whole idea is that we have something in us called Chi. This is an energy which flows down certain meridians (mapped thousands of years ago in China), and up other meridians. Chi needs to be in balance between Yin and Yang, and imbalance can lead to ill-health. That is really the limit to my knowledge. I have listened (I promise), but there is so much that just doesn’t seem to fit with the conceptual frame of my 40 odd years of Western Medical practice. I know what I do know, and have experienced, and I just accept the dissonance or conflicts. A senior psychiatric colleague of mine once said many years ago that the essence of a being a good psychiatrist was the ability to tolerate uncertainty. So that is what I do; I accept both, and tolerate the fact that I have difficulty reconciling them. There are many times, though, when I have mused that perhaps eastern ideas might have something very special to offer in psychiatric practice that is just not available in western thinking, and I muse about all the knots that we have got ourselves into with diagnosis and the medical model, so-called scientific method, and pharmaceuticals. Ah well, that is all another story…
I have seen some very odd but convincing demonstrations regarding Chi, which are often seemingly party tricks, but also seem to be so much more. I actually came across it when I first arrived in Brisbane. I was still keen to do martial arts, but looking for something a bit more elegant than what I had been doing, and thought I might try Aikido. This style is very focussed on energy (Chi or Ki), and in my very short career I did get a sense of respect for the ability to move Chi in another person, and disempower them.
The party trick end of this was to rub your hand on your chest in one sideways direction a couple of times, and then point a finger at distance of a centimetre from a $5 note bent slightly and standing on its side. The note moves as if in a very light breeze. Static electricity? I don’t think so. If you rub the other way across your chest you get nothing. Inexplicable…
Another ‘party trick’ is to ‘strip Chi’ from an arm held strongly horizontally from the chest. You demonstrate that you cannot lower that arm very far against resistance by pushing downward somewhere around the wrist. Then you simply very lightly rub your hand somewhat quickly down the top of the arm from shoulder to the back of the hand. After a brief pause you press down on the arm, at the wrist, and find you now ‘have the strength’ to lower it even where previously you did not. Or perhaps your friend has ‘lost the power’ to restrain you from lowering the arm. Simple distraction, or some trick of hypnosis? Apparently not! If you rub upward from the back of the hand to the top of the shoulder, it does not work. Inexplicable…
One final (and much more dramatic example) occurred last time I was in Japan. We had been on a coach journey to train under a waterfall, and were returning home. Along the way we stopped for an evening snack at a roadhouse. The wait for the food seemed interminable, and we all sat around talking Karate (of course). We got onto Chi, and whether it actually existed, and one of the Canadians decided to give us a demonstration. He invited a young woman karateka (of perhaps 50 kilograms) to sit on an ordinary chair, and then invited 4 males to stand at the corners of the chair. One had to put an index finger behind the left knee, another put his index finger behind the right knee. The two others had to put an index finger under each armpit. The young woman was asked to hold herself rigid, and the four males were asked to attempt to lift her! To no avail, not surprisingly. Then all the males were asked to rub their right and left hands together, and focus their Chi through deep breathing at the Hara (an area just below the belly button, called Tanden in Chinese). Our subjects were then invited to hold their hands in sequence 1L, 2L, 3L, 4L, 1R, 2R, 3R, 4R in a line centrally above the woman’s head – not touching her head or each other’s hands. After 30 seconds they removed their hands carefully without touching, again were asked to focus their Chi, and resumed their index fingers where they had been. Once again they lifted – this time to a height of a clear 20 cms above the seat of the chair for about 20 seconds with no effort - before everyone got a bit anxious and lowered her gently back to the chair. I was there, I saw it, and I was gobsmacked. I still cannot explain what happened.
Well, all of this is a long-winded lead up to discussing the place of acupuncture in the treatment of my paralysis.
Rod began work on my body on about Day 3. We had been told a bit about what might be happening to my spinal cord, and had been given the results of all the tests including the early MRIs and CT scans. There was a ‘shadow’ from about the level of T6 down to T9 more on the right. There were arguments about what might have caused it – perhaps a little bleed, perhaps an embolus, perhaps a form of multiple sclerosis. But nobody knew for sure. Without a definitive cause, how could there be a definitive treatment?
And no-one could tell me what the course of recovery might be. I had been started on a moderately large dose of Dexamethasone and some preventative heparin to ensure I did not get deep vein thrombosis but, as noted elsewhere, there was no other treatment offered until I began physiotherapy about 10 days or so later. My muscles were not massaged, nor was my skin soothed where I had pain. I guess medical staff were just waiting to see how much recovery my body could make; sort of passive observation. As I have said elsewhere, nobody could tell me what I might have done to myself (if that was a possible cause), and therefore they could not tell me what not to do in the future!
With permission, but obviously some resistance and concern from staff, Rod came in about 5 evenings a week after a full day at work (poor bloke!). In fact, no medical person wanted to listen to anything I said over the next few weeks with regard to sensation or returned function. They just looked perplexed, or slightly embarrassed.
Behind closed doors (or curtains), and mostly with me laying face down, I got needles inserted locally around where I thought my spine had been damaged around my spinal cord. I don’t know or understand the pattern of insertion, so I cannot explain that. There were also needles placed down my legs in a variety of patterns. Finally there were sometimes needles placed in the crown of my head, or around my upper neck. My very superficial understanding was that the ones in my back were mostly to help local recovery, the ones in my legs to revitalise my legs (literally, given they were so dead), and the ones elsewhere were to help my body regain (or perhaps rebalance) my general health. Occasionally Rod would place needles around my upper chest in the pattern of referred pain from my T7 damage. Did the needles hurt? Mostly not! There were some spots that did appear to be sensitive. One in particular about two-thirds down my inner calf/shin has always given a reaction, made me jump, or at least made my leg jump. Occasionally, needles in the dorsum (top) of my foot would make me jump or at least twitch. Interestingly, the only response I can get from Rod when this happens is “Good, that was a good one…. So where did it travel to (radiate to)?” This is not because he is some sort of sadist getting back at his poor old father. Rather there is a belief, that the stronger the reaction, the more likely the needle is to be exactly in the right place, and the more likely it is to do provide some improvement.
The response to his question was always a positive “Well, down toward the spot between the big and second toe” or “Up to a point on the knee”. What is interesting about these radiations, is that there is no relationship with any piece of my western medical logic. There is no nerve pathway that provides the way that the reaction travels! But if you read about Meridians in the old Chinese or Japanese texts (and I have a bit… before I got overwhelmed by possibilities), they have known about these pathways for thousands of years.
The results were (and remain) fascinating. From the first treatment in hospital, I began to get sensations going down both legs. It felt like warm deep pulses travelling down; like a steamroller driving down inside of my legs. From no sensation to these powerful sensations was just miraculous. Within half an hour, I would be dead to the world in the deepest of sleeps, waking some hours later, slightly uncomfortable from laying in the same position for a long time and with dribble on the pillow. There was a deep sense of comfort or satisfaction, a sort of total body buzz I have only got at other times from meditation. The warm bulldozer waves would have ceased, but what was left were wonderful pins and needles all down through my legs and into my toes. I could not describe the joy and hope those sensations left, when before there had only been deadness.
Within a couple of days, those pins and needles made me determined to try and move what I could so that I did not lose too much muscle, and therefore my strength and control. I began to move my feet a couple of inches up and down, the left and last damaged foot better than the right and first paralysed. Each day I would proudly demonstrate my most recent ‘trick’ to any visitors who had time and patience to watch (most of them, bless them!). Each day there was an improvement with both little and large muscles responding to the efforts. From about the second week, I would wake at 5.30am, and do a whole hour of any exercise I could think of, twisting to the side, gradually drawing up my knees further toward me, holding my knees up while I did work on my abs (such as they are). I swear that if I went two days with no acupuncture, then progress would slow perceptibly, but after one of those deep sleeps, the next day there would be little advances.
The doctors did not seem to be impressed at all. They would go through their daily routine of checking power in all directions for the various muscle groups, reflexes (always, and still, very brisk), all forms of sensation, joint position sense, and response to vibration at each leg joint. I would say that I thought such and such a movement seemed stronger, they would cast doubt with furrowed brow. The senior registrar had one of those impassive faces, not giving away a thing. She was ever doubtful. I guess she did not want me to have too much in the way of expectation, did not want me to be disappointed with the final result. I used to get furious after she left; I was just certain there was progress. After a while, I realised it was her problem (not mine), and that the medical examination is so much of a blunt instrument, that it is (probably genuinely) hard to perceive small changes. I am ultimately grateful to her, surprisingly. Her blank looks and lack of encouragement drove me to do better and better. I would have liked her to be a bit encouraging, particularly in those bleak early days when you believe you will be confined to a wheelchair. Perhaps she understood reverse psychology; but on the other hand, I know she did not.
The consultant was probably worse in some ways. He had a way of smiling a little smile: “What would you know, you are only a patient” was my interpretation, but then I have always been overly sensitive and a touch paranoid. He always looked uncomfortable, and my (?overly sensitive) thoughts were that he really wanted to avoid me, because there was no medicine that was going to work for me, and he could offer nothing to help (perhaps that should be ‘nothing to help a colleague’). After several weeks he did sort of accept my academic status and offer a couple of very good published papers on small series of patients with similar problems. I was grateful, and very interested in what was being said. Mostly he seemed to have some sort of internal dialogue going on, and was always in a hurry. I think the smile was (perhaps) defensive. The other irritant was that his internal dialogue always interrupted what I wanted to say in the way of changes I was noticing, or questions I needed to ask. You could see his eyes glaze over, as he turned to the junior registrar to demand another test. I learned very early on not to complain about physical symptoms, because the result was always another test, another uncomfortable examination.
None of the doctors ever wanted to talk about Acupuncture, and this ultimately included the people later at the specialist Spinal Unit. They did not understand it, had maybe never experienced it, could not find proper rigorous scientific studies on it, just knew there would be never be any Cochrane Collaboration meta-analyses of randomised controlled studies (and actually they are wrong! ). On several occasions, if one of the junior medical or nursing staff came in while I was having one of my treatments, they would bluster and promise to come back later, or the next day. Even the staff and a couple of ex-patients from my mental health service did better than that. Although, there is a funny story here.
One early evening, several staff visited from a group called ‘Beautiful Minds’ – essentially a group of young adults mostly recovered from mental illness and now part of a group helping other young people. None of them had ever been directly my patient. There were two of them with a full-time staff member, and my son arrived to do my acupuncture. They asked if they could watch, having never seen it before, and I agreed (call me odd, call me unethical, and possibly several other names). As each needle went in, they squirmed and said “Ewe…!” One of them is a young woman who has self-injured over the years (very badly and repeatedly), and is now a consumer consultant for several of my professional and research projects on self-injury. Her facial expressions were just the most extreme, and she asked how I could allow my son to do this to me? (She who had repeatedly taken a knife or a razor blade to herself). Towards the end, given my repeated assurances that it was not painful, she asked if she could try? My son put one needle into a point between her thumb and forefinger, much to her (and everyone else’s) amusement. She had to admit that it did not hurt, and then came a string of questions as to whether it would work for chronic self-injury. None of us know (yet).
I feel somewhat strange telling you these things, now. It feels a bit like I am being a traitor to my own training. I am a doctor, I have gained the most wonderful skills and experiences from being a doctor, and I treasure being a doctor. I can’t help that I am western trained and struggle to understand what has happened to me. I know for sure that if I had done nothing in those first few weeks after I was paralysed, I would have mouldered and deteriorated. I know I would have deteriorated emotionally and mentally as much as physically. The acupuncture made significant physical changes. It gave me hope for the future, and this has continued to the present (with the occasional bad day). It has sustained me emotionally. If you like, it has provided a holistic wellness allowing me to challenge the residual paralysis every day of my life.
I still get acupuncture every two weeks or so, sometimes just for the sense of wellness, sometimes targeted at particular aspects like the neurogenic bowel, or the fact that I get swollen legs from time to time. I can go into a session with that old memory of the deadness in my legs, a feeling that the ataxia has increased and I am not as steady, despite the fact that I walk every day, and am on an exercise bike two or three times a week. After a session, within 24 hours, the wonderful pins and needles are back, my feet feel more flexible, more alive. My ataxia settles down, I feel more like agreeing to go for a walk, and (to top it off), my performance on the bike improves dramatically.
I know, it is only one person’s experience… And of course Rod, being the lovely human being he is, just says: “Mmm, it’s probably all coincidence”.
A word to the wise: “If western medicine appears unable to assist you to get rid of irritating problems, give serious consideration to at least trying some acupuncture.”

Sunday, January 23, 2011

Haiku on Effort

Even when you try
Can't always get what you want
Might get what you need
(with apologies to M. Jagger)
Taking Charge
Without exception, even in my rather limited experience, physiotherapists are some of my favourite people. They are knowledgeable, have exceptional analytic skills with regard to muscles and how they could be made to work better, and they are practical. When I grow up, I want to train as a physio.
I don’t actually say that in jest (much). I think one of the problems with being a doctor is that we are taught, and practice, the art and science of diagnosis, but then may not have available to us much in the way of interventions. OK, I know that surgeons and emergency physicians and Burns specialists intervene. Perhaps my gripe is more with physicians and also my own colleagues, psychiatrists, psychologists and social workers. I know there are exceptions, but a lot of the psychotherapy practice I hear about (admittedly perhaps more in supervision than elsewhere) is watching the grass grow while the patient works out how to change their lives.
Conversely, I have major problems with most medications; they are sort of ‘quick and dirty’ symptom control, but don’t offer much in terms of changing the original problems that led to the clinical presentation (precipitated it) or are keeping it going (perpetuating it). Pharmaceuticals seem often to be prescribed on rather flimsy grounds, are subject to change after the next psychiatrist changes the diagnosis, and of course medications come with acknowledged side-effects.
I don’t want to get into an argument about this, but I was seriously offended at my follow-up visit when I asked my neurologist what I could to continue my obvious progress, and his response was: “I don’t know, I am not a rehab physician”. Management and treatment are supposed to follow diagnosis. What use are you if you cannot make a definitive diagnosis, and then have no options to provide treatment? While I am getting things off my chest, the other bit that rankled with me was how doctors obviously felt that they were the most important people in the hospital (other than the bed management staff of course). Their erratically timed ward rounds were far more important than physiotherapy appointments. Once I had actually started physio, and wanted to have daily work-outs, Christmas (not a good time to get ill) looked as though it was going to undermine my plans. The opportunities for sessions were a bit limited with only a few days to go, and (of course) various people were (understandably) really looking forward to going on planned leave. So when I did have appointments, was keen, and felt I was making some progress, it felt like a disaster when ward rounds or, in one case, a two hour drip for a somewhat spurious antibiotic treatment, got in the way. Enough whingeing…
The Physio gym was close to the neurology ward on the same floor. So I guess I was very excited (and anxious) when I was wheeled the short distance for my sessions. I never quite knew what to expect. There were often two key parts. The first was for them to gain some idea of my competence. Within the parallel bars, and with a physio sitting directly in front and holding both my knees, I was asked to attempt to stand – with support under the armpits, of course, from another physio. The tears went on and on, streaming down my (somewhat agonised) face (according to the photos). It was not the first time I had been upright (see the chapter on firsts), but it was the first time it was real; no artificial electronic raising up of the dead! So there I was upright with a death grip on the parallel bars, and a physio supporting me from behind, and another sitting and providing a barrier for my knees. I began to sweat (well, mixed with the tears). They asked me to move my weight sideways an inch or so. I could do that! More tears. “No, not like that, don’t allow the hip to drop”. I did what I was told, and after several repetitions got some confidence with that very small movement – and boy was it an effort! “OK, now as you move to the side, just lift the other hip about a couple of centimetres” I did that, and then the other side, again and again – with constant observation and correction. After several repetitions, I was invited to sit back in the wheelie – which I did, with enormous relief and rather poor control.
The second half of the session was practicing the transfer from the chair to a flat plastic covered bed raised to the correct height just a centimetre or so below that of the chair with one armrest removed, using the plastic transfer board as a bridge. Once on the bed in a sitting position with my legs dangling over the edge, I then had to practice lifting my body with my arms and shifting a couple of centimetres to one side. Not a shuffle, you understand, a genuine lift. When you can’t feel things, then there are dangers in sliding and possibly rubbing up a sore (Yeah, well I didn’t want that). Again and again we did this, and then reversed back to the beginning. All part of testing core strength, but also ensuring my safety with transfers (and although I did not know this at the time, this practice and the concepts that went with it were going to be very important when I got my two day Christmas leave). Luckily I had some retained core strength from my Karate training, so my tummy muscles and my arms all worked quite well. But the temptation to slide rather than put in the effort… Mmm.
Then to the next exercise – laying flat on my back and bringing my knees toward me with feet flat on the bed, held in place by the physio. I was asked to sway the knees to the right - slowly and under control (what a joke – I had almost next to no control, and they just wanted to drop to the side). Then back up and down to the other side. The key issue here is ‘control’ of which I had little. Again there were repetitions. What is interesting here is that you would not normally do such a movement in isolation. But if you want to turn over in bed, the ability to have control over this movement is an integral part of turning over. Well enough for one session. Sweaty, exhausted, tearful, but triumphant I was wheeled back to the ward.
Each session had a pattern, with each segment being carefully extended, challenging my ability and persistence. So day by day working on the parallel bars, my feet got lifted higher by centimetres, my hip control was challenged, and eventually I was able to take a step – wobbly, out of control, supported by a physio in front and one behind – but a step! More tears. Then more work on the bed. Could I roll over? Could I lift my body and inch my way across the bed, down the bed? Could I get to sitting on the side of the bed from laying down? Each day I would get exhausted, but back in my room I would practice the movements at every available opportunity. “Don’t forget you need to rest in between” they said, “Your body needs to rest as much as it needs to get going again”.
About a week later they brought a walking machine to my room – a standing frame with arm and elbow rests and wheels; much more simple than the purple dinosaur I described in a previous chapter). One physio off to the side, and one behind, take a step. “Don’t cross the mid line, move each foot toward the outer edge of the frame” “Don’t tread on the other foot” “Don’t take too big a step; stay in control”. Half way up the corridor. More tears because I am actually walking, even if I looked like a baby in a baby walker. Now step by careful step, slow turn round and back to the room. Collapse on the bed; more tears. You get to feel embarrassed by all the tears, which seem to come with a sense of triumph that perhaps you have not lost all function. Why should you be embarrassed? Don’t know, really. Strong men don’t weep, do they? Mmm, what rubbish! It’s the strong men who do what they have to do, and do so through their tears…
Another day, another turn on the walker. I could feel the patterns coming back; not much strength or control, and I could not do this without these patient physio souls watching every move, watching out for every potential slip, checking my enthusiasm to push too hard. An accident, a fall, something broken, would set me back. “Better to be safe than sorry” they would say, repeatedly. I still step on my own toes and now have one chronic black toenail on the big toe of my left foot; ah well, bad luck.
The next day was missed because of a ward round, but the next I am back on the walker, the improvement obvious to all. Take it slow, you have to walk before you can run…Everyone LOL.
The next week was a mess in terms of sessions and formal practice. With Christmas and the two days out of the hospital, I spent a lot of time in the wheelchair. We got to see cousins for Boxing Day, and all that practice on the plastic bed with the transfer board, payed off in terms of transfers from the chair across the board to the passenger car seat and back again at the other end. Back home, and from the car to the chair to the toilet and then back to the chair and the bed is all a major drama, but we made it. I guess it’s all good, and all that effort is a fantastic way to practice skills, even if I am only partially trained and in some danger from overconfidence.
6th January, and I get transferred from my own hospital south of the city to another where there is a specialist Spinal Unit. Brown bags full of gifts, food, spare clothes, all get shovelled into the ambulance for the ride. Whether I like it or not, status and privacy go out the window, as I am moved into a four bed ward with 3 other blokes all of whom have various levels of spinal problems.
First lesson... Mate, they are all worse off than you! Second lesson… They are the most courageous people I have met in a long time. Matt, in his 40s, who has a complete mid-cervical injury from falling off a roof is in the bed opposite, and has been there for five months, waiting for a suitable home to become free for rent. He manoeuvres into a wheelchair with help, but has absolutely no movement in his legs. And he has no control over his bowels at all – God, I thought I had problems… Chris, diagonally across from me is still in his 20s, and came off a motorbike while demonstrating stunts. Again, he has a mid cervical injury, and again has to be helped to transfer to his wheelchair, helped to shower, but then is mobile, active, has loads of friends, a good family and at least one girlfriend and several besotted nurses. John, in the bed next to me, survived rolling his first car, but when he tried it with the second car 6 months later he was left with permanent cervical spine damage, and has been in the Unit for nearly a year. Again, he has loads of visitors, and always seems to be going out somewhere, mostly down the pub. LOL. He is waiting for a specially designed electric wheelchair, and a flat before he can get discharged. His area of the four-bedder is set up like a personal apartment.
A male physio comes and measures the width of my hips. Woo hoo… I am getting my own wheelchair! You know, pleasure and excitement come from such weird things. LOL.
Later, this beautiful black chair arrives with its own specially padded removable seat; the padding is half solid (at the front), and half malleable (towards the back), and moulds to your body. Brilliant. I am shown some of the mechanics, in particular how to use the brake, and how to remove and replace the footrests. There is special instruction on how to be careful with the footrests (and not damage the feet), how to move the chair forward and then a small movement to the side and back, to place the small front wheels pointing forward (so that when I stand, the wheelie does not tip up). Then he leaves instructions scribbled on my own bedside whiteboard. Most important is physio at 1pm next day…
One extra point. The chair comes with a really fetching individually patterned dilly bag tied to the back of the seat, and with my name on it. For the time being I own this chair! The bag is important (I learn) to carry, tissues, spare pants, cream, wallet, the occasional apple and a couple of other items when moving round the unit and the hospital. Clever. It also means I have to swivel myself round to access various bits from the deeper recesses – hey, I am working on my obliques.
Despite the fact I am not supposed yet to do transfers without supervision (that’s on the white board too), I do. I’ve always been naughty like that. Just don’t want to waste other people’s time. OK, I’m impatient. I wheel off to lunch (there is such a lot I could tell you, dear reader), then I go to the bathroom, and using the handrails, being very careful, I stand gingerly from the wheelchair and turn carefully to sit on the toilet (Mmm that’s on the whiteboard for future training and observation, too). Ah well.
I arrive on time at physio. Back to a flat bed; I am watched carefully as I transfer across a board, and then we repeat a set of exercises I had done before. Up and down the side of the bed, lift and move – don’t slide. Then moving across the bed, then with feet tucked up, moving the knees from side to side. All with intense observation, but less assistance than I had had before; that’s OK with me. Do 12 and rest; can I go to sleep now? Everything is such an effort. OK so far. Can you lift your bum off the bed; I oblige with feet locked, knees locked and tummy straining. Do 12 and rest; can I go to sleep now? Over on your tummy; now pull your feet up towards you bending the knees. Do 12 on each side and take a rest. Do 12 more. Have a drink of water (with all this effort its important to keep the fluids up). All these exercises appear so simple working on a set of muscles at a time. It should all be easy, but it is all so hard.
Back to the chair and off to the parallel bars; lock the wheels carefully as taught. Every single action has a purpose and has to be considered carefully. I think that is why you get so tired; you get brain fatigue. LOL. Let’s see how well you stand; good, can you take a step, now another, now back and sit down. My right leg sort of behaves, but I am glad that’s it for the afternoon. Did it really take nearly two hours?
Back at my bed, I do the transfer, and then the physio is back. Every dermatome (an area of skin served by one group of nerves) is tested with cotton wool and a pin, every muscle group tested for strength from top down, every joint tested for position sense. The ASIA chart is completed; it will be repeated before I am discharged. Can I go to sleep now? Sure can. Dinner in bed, hospital style, and then Jan came to visit, and that was Monday.
The next day was about getting through the morning just to get to those two precious hours. The physio gym is, as usual, utterly crowded. There is a person paralysed from the neck down, carefully strapped into a tilting bed, and regaining the sense of being upright - sort of taking some weight on the feet and legs. This is obviously painful, and he frowns and grunts and whimpers, but does it according to expectations. I had seen him at lunch the day before, sitting in an electrically powered chair operated from the chin and mouth as far as I could see. He was being fed by one of the nursing staff, given he had little controlled movement of the arms.
A young woman lies on a flat bed with a physio doing passive exercises on her arms, paying special attention to the joints, stretching them and attempting to maintain their flexibility, gently massaging and opening fingers. The young woman weeps silently, but obviously recognises progress and smiles from time to time at this and the odd joke. She likes the constant ambient music and she and the physio sing snatches of song.
A young Korean couple move from exercise to exercise – is she his sister, or his girlfriend? Either way she is focused, caring, smiling and demanding with high expectations. He has a high level paralysis, has obviously been at the unit for some time and made progress. He is adept at manipulating the chair despite obvious problems. But he does get cross from time to time – an exercise he does not like, or too many repetitions. Despite all the emotion, they are delightfully respectful of one another, and everyone else in the room, bowing frequently and communicating non-verbally given English appears to be somewhat limited. Being young, they both pose from time to time in front of mirrors, caressing hair or straightening their smart, obviously expensive, designer summer clothes.
A centrepiece of the room is a half completed car with no engine, and up on secure blocks. This has clearly been donated to the unit, and is covered in signs and decals. Its purpose is to practice transfers in and out of the driver’s seat or the passenger seat. Assessment and practice go hand in hand, all part of the build up to a future with partial autonomy and a disabled driver permit. When you look more closely, you realise the car has not been in an accident, but as been specially designed to work through all the problems that occur when getting back on the road – the dream of every one of us in the room.
Another section has a wall full of wheelchairs and parts, some of them still boxed, in three tiers of racks. A corner has been allocated to repairs, and every day there are one or more physios taking wheels off, changing settings, replacing bits to ensure good working order, and comfort for the client. Patients often sit there in wheelchairs getting instruction about how to dismantle or reset a chair after a collision or a fall.
On another day my room mate Matt gets special instruction in how to fall, and then get the wheelchair upright again from lying on your back. It looks violent and dangerous, and he looks somewhat anxious at first, but gradually learns the weight transfer manoeuvre that gets you up. All part of an advanced wheelchair training class advertised on the whiteboard of the gym. I watch fascinated, wondering whether I will be able to do what Matt has been doing, if and when the time comes. A part of me rejects the idea; I need to get to the point where I don’t need to learn these exercises, thankyou very much. Will that happen? Can I escape this place of horrors and fascinations?
Today’s exercises are similar to yesterday, but more so. More repetitions, more options, a little more pressure. I feel like I am being pushed, but I don’t know the half of it at this stage. The main lesson occurs after Jan visits for the afternoon, so she watches while I transfer to a 2-seater lounge chair. I am then shown how to use the seat of the chair to lower myself down to the floor, and then with my bum tucked into the edge of the seat, taught how to use my arms to lift back onto the seat. We repeat, again and again. Can I have a sleep now?
The days pass, and each day there are new exercises to be learned. I gain a new physio, and very soon learn that she is not particularly interested in chat, does not stand nonsense. The bed exercises get extended each day with new variants. After about a week I find myself on all fours, lifting one of my knees off the bed and pushing back, repeating, and then changing legs. Over several days as that looks too easy, I am instructed to lift the opposing arm while I push back with the leg, then alternate. When that looks too easy, I have to throw beanbags into a bucket, which demands a lot of my core strength. About two weeks later I am kneeling on the edge of one of the beds, grabbing for a grating above my head, holding on, and then nudging a hanging ball in front of me with first one hand and then the next. Repeat, repeat, then rest and have a drink of water.
At the parallel bars, I am taught the detail of shifting my weight forward on the chair, then using my core strength to lean forward and stand. At first we do this holding on to the bars, but gradually the grip is loosened, until one day I find my self standing with no holding on. Guess what, I weep, again.
All sorts of ways of walking are explored. At first tentative step after tentative step with the old death grip on the bars. Then gradually loosening the grip until the day Jan videotapes me walking like a one-year old a whole length between the bars but never touching. When you are tired, sit down. But don’t take a rest, really. “Here is a soccer ball. Sitting down, put one foot on the ground, one on the ball, and move the ball in a circle.” Change feet, change again, change again. “Rested? OK let’s do that exercise standing on one foot with the other on the ball.” “Now Pete is going to gently kick the ball to you within the parallel bars; see if you can kicked it back in a controlled way. OK, now change feet.”
“Today let’s try walking sideways – holding onto the bars.” Now go the other way. Build it up. Now see if you can kick the soccer ball gently and keep it going. Here are some obstacles – bricks, a ball, a bucket, some beanbags. Work your way round them…
“Today we are going to try a walking frame. We could use one with wheels, but we haven’t got one free at the moment, so we will just use a standard one. I am going to put this soft belt with handles around your waist, just to steady you”. Ok take a step, then the other leg. “Don’t lean on it; that makes you bend over. Keep the distance of the frame smaller so that you can stand upright while you walk.” Careful. Let’s try outside… about 20 metres. Here’s a chair. Take a rest. Good, now let’s return.” Sink into the wheelchair with satisfaction, exhaustion, a smile, and a hint of a tear.
Within days, I am told not to take one step and then move the chair and then take another step with the other foot. Rather, try to walk as you would normally, but using the chair for support and security. The belt is surplus to requirements. The frame is left at my bedside, which allows me to practice, and then show off to visitors. But then being exhausted in the evening or at night going to the toilet, I use the chair. A certain sense of security…
Somewhere in here, I have a fall. We were practicing going from a low armchair to the frame, using the transfer of weight forwards and standing, but without putting weight on the frame. Luckily I was on a soft mat at the time. I don’t remember how it happened exactly. One minute I was getting to stand, the next I was on the floor having fallen on my left shoulder. Just sort of went limp. So, it can happen, Mr. Cocky… We practice getting back on the chair, then go back over the instructions about weight transfer. Practice again and again. Mmm, lots to think about. How did it happen so quickly? How can I avoid getting hurt? Mentally I practice some of my old Aikido training to get me thinking about rolling, so I don’t break something. Of course prevention is better than cure. So let’s take this a bit more slowly, Mr. Cocky… Think about every move, look constantly for obstacles, think it through before you get started.
The following week, I am tried in the gym with Canadian crutches. Tentatively, and with great anxiety I step forward. The next day we go outside, initially with the safety belt, and the physio holding on. Dear lady, somewhat diminutive, I wonder what would happen if I did fall. I imagine she would fall with me; can’t imagine that even with all her training she could stop my 95 kgms from toppling over. And then we are going down slopes, across grass, around the barbecues and back up the slope; the next day twice round the circuit.
During the last two weeks at the Unit, there is instruction on stairs. “Always lift the good leg first. Remember: ‘The good go to heaven!’.” Jan is there to watch and help. Lifting the legs to walk is one thing; lifting them to put on a stair, and then put pressure on to lift my weight is entirely another thing. I sweat bucket loads. Starting with one stair, up then down. Alternate legs. “That looks too easy; let’s try going up two stairs alternating legs”. “OK, remember when you are coming downstairs, you must bend the supporting knee. Don’t do it stiff legged. Make sure you are holding on.” “Good take a rest. Here’s a drink of water. Oh, and a towel…” “OK, now let’s try going up several stairs to this platform. Good. Turn around carefully; now alternate legs coming down”. Eventually, when I am on the crutches, we repeat all these exercises going up and down real stairs, and the length of the walks extends form 20 to 50 to 80 metres and return. I CAN do this…
We did a lot of work on a Swiss ball. Initially this started between the parallel bars, so I could grab them if I began to get unsteady. OK, hold the bars, plant your feet well apart, and lower yourself down. Just sit there, get used to the movement and the control. Easy… “That looks too easy. Bring your feet in a bit. Good. Just sit there for 5 minutes.” “Mmm. That looks too easy. Try putting one foot in front of the other (wobble, wobble). OK, perhaps just 10 cms apart. Try that. Good. Just sit there for 5 minutes.”
A few days later, while sitting on the ball, I was confident enough to let one hand go, and thought I was very clever. Until ““Mmm. That looks too easy. Just widen your feet a bit. Good. Now take both hands off the bars, and see how long you can manage. Just sit there for 5 minutes.” Of course being me I got a bit bored with that. It struck me I could try a Kata from sitting down. Slowly I tried Kata Tensho, initially without the expected breathing pattern, later adding the breathing pattern. What was fascinating, was that sitting still and doing nothing, I had immense problems keeping my balance on the ball. Random or jerky movements lifting my arms made it ten times worse. Doing the Kata, I guess I was focused, and drawing on experience of many years of keeping my core (my Hara) tensioned. I was as steady as a rock. Amazing. Amazing that the movements under the control of years of practice, even though they were strong, seemed to settle me, centre me. And I was rock solid. Until I stopped, and then a few seconds later and I was all wobbly again. So, do the Kata again, and then again. “That looks easy for you. Let’s go and do something else…”
A final fun note. The door to the Physio Dept is a sliding automatic door. Of course this is important for people in wheelchairs, because it is not easy to push forward and sustain that until you are pretty experienced. First problem was that you had to be in just the right spot for the sensor to pick up that you were there. OK, a bit of practice and you get it. Then you have to get a move on with the chair, because the doors closed just that bit quickly, I guess to keep the air conditioning in the Dept. Well that’s not too much of a problem in a chair, because if they close, then mostly it is onto the wheels of the chair, rather than you. So one day late in my month of training, I was going through using a walker… You guessed it, I was just a bit slow. The jaws of the doors closed on my hips stuck out more than they should be toward the rear. I swear it was a test. I could just imagine my physio saying “Mmm, that looks a bit easy going through the door. Let’s see how you manage this…” LOL. Pure paranoia, of course. But it did teach me to stand up a bit straighter, and walk just that bit quicker, and keep my bum in.
When I grow up, I want to train to be a Physio. Just think about it. All that carefully graded process, with reassessment and carefully graded challenge, moved me from a wheelchair to walking, in somewhat just over a month. A miracle.

Sunday, January 16, 2011

Haiku on Chance

No such thing as chance
We dream we take decisions
Its all pre-ordained
Taking Charge
This chapter begins just over 4 months after my initial paralysis. It was my birthday, and Jan decided we should go to the beach for the first time – just as a test, you understand. Surf beach at Woorim is about 15 minutes from home just the other side of Bribie Island. I drove (yes, really) and we parked in a little car park about 50 metres from the beach down a path or across some grass. I held Jan’s hand rather than use one of my Canadian crutches, and we walked carefully down the track. So far, so good. Gravel path reasonably flat – I can do that. Ah, yes, a 10 metre slope down through soft sand; this will be fun. Like everything else after you have been paralysed, all you can do is to take things a step at a time (LOL). So, dig the heel in, make sure I am taking my weight, crush Jan’s tiny hand. Then the next step, and then the next. I had had several days in recent weeks when I had despaired for one reason or another, thinking perhaps I had plateaued, or worse, perhaps it was all starting up again. But no, we reached the beach, which was still on the soft side, and managed fairly easily to get to the hard-packed stuff left by an ebbing tide. I wiped several minutes worth of my own salt water from my cheeks and marvelled at the feel of the firm sand through my joggers – just like hard ground really or the floor at home.
We kicked our shoes off, and tested the water. It was nowhere near cold, but that first feel of it on my feet gave me this electric jolt up the back of the legs to my spine. Whoa, that was freaky, exhilarating, scary; thought I was going to overbalance for a moment! Like a giant whole body shiver. We laughed, the sensation went away and we enjoyed the soft waves over our feet, that unique sight and sound of small crashing waves, the view of Moreton Island, and (later) a school of dolphins travelling north. This is why we had moved to the island. Why hadn’t we done this earlier. Silly question (but not!). Leaving the joggers in a small pile, we managed about 100 metres along the beach before I began to feel a bit exhausted. I get this after exercise, and have been warned by various people to accept it, and then make sure I take the necessary rest. So, wandering back we then sat for 20 minutes, breathing in the smell of beach, listening to the rhythmic sound and not saying much at all really, except in brief response to the occasional dedicated walker. Lovely.
Then of course we had to cross soft sand, and go back up the soft sand slope. Much more difficult than coming down, but again taking one tired step at a time, making sure of the certainty of each step, we arrived back at the gravel. Joggers in hand and protecting feet, we took to the grass; delicious. And then I drove us home (yes, really).
Yesterday, two days after the first walk on a beach, it was our 45th wedding anniversary, and late in the evening, after dinner and after all the mozzies had gone to bed, Jan suggested we do a celebration walk over a bridge and around a small island near our canal home. With some silent trepidation I agreed. The last time we had been around the island I was in a wheelchair, being pushed by someone else. The other thing was that it was dark, admittedly cloudless, but also moonless (and I have a tendency to overbalance when I can’t see). The street lights are OK, but hey, I can still lose my balance easily in the gloom… We started out, again without my Canadian crutch, and again holding firmly to Jan’s hand. The first problem is the down slope of the driveway, and at the end of that a kerb where we had got stuck the first time with the wheelchair and needed rescuing by one of my sons who was up for the weekend. No problems this time. After about 20 steps I got into a rhythm, and we managed to maintain that up and down the bridge, and then half way round where we stopped to admire the stars. Again I still get a bit dizzy looking up, but it was fine on this occasion. We started off a bit slowly, but then got back into the rhythm. Towards home after navigating a couple more kerbs and the bridge, I could feel I was tired. From time to time both feet would just catch on the ground, and an old problem of the right foot swinging outward on landing returned about 20 metres from home. I could hear the physio saying: “Well you fool, you should be using the crutch; you don’t have to keep pushing it!” But I do. We arrived at the gate; no tears! In the gate and up the garden path on my own – no hand holding; no tears! Inside the front door a slight feeling of triumph but, you guessed it, no tears! Perhaps my frontal lobes are not so bad after all; or perhaps I am getting used to all the little triumphs, and a new first every day. Mmm, well, writing about it has blurred my vision, and made me blow my nose; perhaps last night I had just used up all the emotion that the little triumph of our version of walking round the block had provoked.
These two ‘firsts’ make me realise just how far I have come in four months, and act as a counter to my sense that I may be reaching a plateau. They also make me reflect on all the firsts I have experienced, and I thought it might be fun to review some of them that we have not talked about in other chapters.
The first time I stood upright was just before Christmas, about 3 weeks into my admission. The physios brought this machine that looked like a bed, but was motorised to be moved to vertical. They strapped me down with my feet on an end bar, trussed securely at hip and chest. You have peculiar thoughts when you’re unable to move and entirely under the control of a couple of other professionals. I guess psychiatrists have peculiar thoughts anyway. So I jokingly asked if they were going to give me Electroconvulsive (Shock) Therapy; the very worst thing I could have imagined. They just looked perplexed (like I was daft) and got on with what they were doing; tightening straps. From horizontal I was gradually moved until I was almost standing, but not taking much weight. When the guys were satisfied I could take my weight, they tested my ability to slightly bend my knees and then straighten – a test of extensor and especially quads strength, I guess. After 20 minutes, they seemed happy with the result, I was returned to horizontal and then slid with wardie help across into bed.
The next day they brought this machine that looked somewhat like a mauve ‘dalek’ on wheels (Yes, I am old enough to have watched quite a lot of Dr. Who – only for my kids’ sake of course). There was a platform to stand on, and then a kind of webbed body belt with which they locked you to the machine. I held onto some handles at the end of two arm rests, and then the machine did all the work lifting me from a sitting position to standing, although my forearms were taking some weight. Unbelievable (that some clever person had designed something like this). Terrifying (to be dragged/lifted to a standing position). Emotional (the tears just kept coming, given that I had thought never to walk again). Our little motorised dinosaur was capable of moving me around and up and down the corridor. The experience of being upright was exquisite, even if I was locked into a complex ‘aid’. I was only ‘on my feet’ for 15 minutes, and when they let me back down into a chair, and then transferred me to bed, I was cactus. That feeling would return again and again over the next few months, often mixed with triumph, and always with tears of relief at what was possible.
The next attempt was with a sort of parachute harness hooked to a rather classy forklift (40,000 dollars worth of machinery I understand) on loan to the department. The harness went round my waist, and 6 seatbelt-type straps were variously attached to support my weight, the other end of the straps finishing on the superstructure above my head. The lift began while several pairs of hands supported me. Then we had trouble. As the lift continued, the straps which went under my crutch began to cut into vital parts, and the pain became unbearable within seconds. This time I was weeping first from the pain, and then weeping with relief as the pressure came off. I had visions of being scarred for life or turned into a eunuch. On the other hand having lost almost all feeling below chest level, I was weeping probably because it is extraordinary just to feel anything! Expensive machinery; needs tweaking to make it male safe! They never used it on me again; in fact I was never to see it again.
We have a picture of me about two days later standing inside parallel bars, taking quite a lot of my own weight, but ably assisted by two physios, and with the wheelchair directly behind me if I felt the irresistible urge to sit down. The photo makes me look like I am in agony, silently screaming with my mouth open. In fact there was no pain; I was just overwhelmed that I could stand when I had thought I never would again, pouring tears, and slightly embarrassed at my reaction. The physios, of course, were not phased and I am sure they had seen it all before. They were never phased when I wept, when my indwelling catheter began to leak after some exercise, when I passed wind after some exercise (“Hey its all part of the job”).
From standing, on each successive session, the physios began a plan of getting me to take steps. I have described this elsewhere (see the chapter on physios), so I will not repeat myself. But that early work, so carefully done, formed the building blocks for what was to come. Four weeks later at the spinal unit, Jan was able to take a video of me with exactly the same expression on my face, stepping out one wobbly foot at a time with my hands raised over the bars of the parallel bars such that I could grab them if I had to. For the first time I managed end to end without stopping, and without holding, just with overwhelming triumph and tears; I look ghastly.
We have a 2 storey house with 17 stairs. Ever since my overnight stay at home on Christmas Eve I had looked at the stairs, trying to work out just how I could get the strength to climb up (let alone get myself down again). I had my first weekend at home at the end of the first week at the spinal unit, and still had to sleep downstairs in a single bed, dammit. Over the next 3 weeks of my stay at the spinal unit, I asked the physio to focus some of our work on climbing stairs. She had all sorts of different ways of getting me to step up, each carefully graded, and whenever one looked too easy, she would change the task to challenge me. There was a basic rule: “The good go to heaven first” meaning that my better foot should be lifted up first and take the weight while I dragged the other one up. Then put the ‘bad’ one down, while taking the weight on the good leg. It took me some time to work out how to manage the crutch as well as holding onto the banister. Do you put the crutch on the stair first and then drag the right foot up, or do you lift the foot and crutch together? The repetitions seemed endless and exhausting, and I sweated bucket loads each time into a couple of towels. The plan was to go up several stairs one at a time, left foot first. Of course once you have managed going up half a dozen stairs in the gym, you have to re-learn how to come down. More repetitions, more anxiety, more sweat.
Anyway, on my second full weekend home, there was no way I was going to spend my nights in a single bed. So when Jan was out, and no-one else around, I took my trusty right Canadian crutch, and holding the banister with my left hand, took the first step with my left (‘good’) foot. Dragged the right up, stabilised with the crutch and did it again. And again. By the time Jan got home from the shops I was safely ensconced in my favourite armchair upstairs watching cricket on Foxtel. Somewhat bemused, and with a half smile, she asked: “How did you get there?” to which the response of course was “With great difficulty”.
So the first climb of our home stairs led also to the first night in our double bed. Of course I was still having trouble with my erratic bowels and, anxious about accidents, was wearing ‘pull them ups’ to bed. I still had to sit up on the side of the bed, then climb carefully to standing, stabilize and then step round the bed using a crutch to get to the ensuite to have a wee several times that night, which was a bit of a drama; poor Jan, I must have woken her several times, particularly using the crutch and thumping around a bit stiff legged. A night light was important for my balance, as was leaning on several bits of available (and stable) furniture. I’m not sure either of us got that much sleep. Jan, of course, had had the bed to herself for the previous 2 months, and had (shall we say) spread herself out a bit. And my semi-paralysed legs had erratic movements, the occasional jumping about, and then there was the drama of turning over… Ah well, we achieved a milestone, and though I use the single bed downstairs for a bit of a rest after exercise, there is no way I am sleeping in it at night.
Walking, as a progression from standing on your own two feet, is so important to us as human beings, but there are other firsts that can be equally important. The first time I swam in our home pool was just one of those exquisite occasions, while also being potentially a drama. I had been carefully trained at the spinal unit to get up off the floor if I fell. This initially entailed finding something to lean on (a chair, or a bed, or a step), even if you have to crawl to it. There are various ways of getting to a sitting position, most relying on the upper body strength I had fortunately retained. So to get into an armchair, you sit as close as possible to the front of it, facing away, get hands and arms into position on the seat, and then drag yourself up to sitting on the edge of the chair. Later I was shown how to use the side of a bed to assist me to get up onto it from kneeling on one leg.
So the second time I was home for a weekend (about 7 weeks from the beginning of my paralysis, we took the plunge - literally). Getting into the pool, we adapted some of what I had been trained to do. We parked a plastic garden chair about a metre away from the pool steps. In between the two we placed some padded cushions to stop damage from the aggregate concrete pool surround. From walking with my two crutches, and with Jan standing behind the chair to stabilise it, I sat, and then we put the crutches to one side. Using the seat of the garden chair, with both arms I lowered myself to the cushions, and then edged slowly to the poolside, dropping my legs into the water. After recovering from the exquisite shock of the water, I used the poolside to lower myself down the next step. Of course then, with some of my weight taken up by the water, I was able to stand, and then swim. One current project is to improve my breaststroke. Of course the problem is to be able to coordinate the legs. Initially this was almost impossible, but bit by bit we seem to be getting a bit more drive going. Its only a small pool, and it used to take me 3 strokes overall to get from one end to the other (including the kick off at the beginning). Currently it takes 6, but at least I can stay afloat.
We have found using the pool for hydrotherapy is a massive boon. I have lots of trouble with abduction (spreading) and external rotation (turning out) of both legs and feet, worse on the right. So walking sideways up down the pool has been good practice. Getting back some stances (sanchin, zenkutsu, kokutsu, and the old shikadachi (sumo) stance are all possible (at the shallow end) marking my efforts towards a return to Karate. I am currently working on turns, which seem to be getting quicker and stronger. Of course the pressure of the water on sideways movement provides resistance – which is great.
One major problem is that I can’t do breaststroke; just can’t use my legs well enough yet. My body memory is there for what I should do; my legs just don’t respond right. Well, there’s something to work on…
After the swim we reverse the process. I place a towel on the mats, and climb up the pool stairs, reversing and sitting with legs in the water. Then one leg at a time gets dried, up on the mats. Then I turn away from the chair, get as close as possible, and use my arms and shoulders to lift up to sitting on the chair. Dry off, put on joggers (aggregate can be painful when you have hypersensitive soles to your feet), retrieve crutches, stand and away we go. Latterly, I have been doing this by getting to a kneel, with one leg in a squat with the foot on the ground, and holding on to the chair (in turn held by Jan), I can stand straight up. Progress! If it all sounds a bit tedious, I can tell you that it is. You have to take charge and decide you will do it. Then you have to think through everything you want to do and the strategies you will utilise to do them. Then take it carefully, steadily, (and slowly if necessary) to get to the point where it is possible. Then practice and practice until it improves.
One ‘first’ has been very important to me. I could not wait to get back to driving, in part because it signalled some sort of autonomy, in part because of the genuine need to be able to get back to work in Brisbane. A couple of weeks after I was discharged, Jan took me out in her car on a Sunday morning – reasonably quiet on Bribie. I drove slowly toward Banksia Beach, and turned right along the front, and tried several manoeuvres like turning and parking, and then I drove home. The car is an automatic, and fairly easy to drive, but the sense of triumph at getting back behind the wheel was fabulous. My right foot (the first to be affected, and the worse one) was a bit slow to move between throttle and break, and there was some loss of the ‘feel’ of the controls through my joggers, compared to normal. But it was a start. Over the weeks I had several more trials, and as my foot sensation and power have improved I am both much more capable, but also almost back to that wonderful ‘automatic’ response so necessary in traffic. Currently I am back at work on 3 half days a week, and work from home the rest of the time. I usually drive in to work, and am dropped off at the entrance to work, with Jan parking the car. Usually after a hard or stressful or complex day I feel unable to drive home – so Jan does it. It’s been a good pattern, and I know it is likely to be several more weeks (perhaps months?) before I start to drive both ways. We shall see.
The final ‘first’ of course is Karate. When you have been doing something for 20 years, and achieved a level of skill, it comes as an immense shock to the system to find you can’t do something which is a major part of your life. I have talked elsewhere about using some bits of Karate and adapting physio exercises to make it more interesting for me and perhaps keep up old skills. About three weeks ago we tried a return. I say ‘we’ because Jan had been a member of the little class I had been teaching before it all happened, and is almost ready to grade for her blue belt. Of course when I stopped teaching, she stopped training, and has been missing the flexibility, the strength, and the confidence it provides for bodies in their 60s.
We chose an early evening class, actually a children’s class, but hey I can’t afford to be proud. My son was teaching and obviously pleased at our return. I felt both a sense of oddness at putting my Gi back on for the first time, but also a delightful familiarity. I also felt a bit odd putting my black belt on given that my standards must have slipped very badly; I couldn’t fight anyone at this point in my recovery, even if we were both on the ground! Being shown phenomenal respect, the opening of the class was held up until I had struggled down some stairs. So I stood in line, faced front, bowed in, and we began. Anchoring my feet with slightly bent knees in the one stance of Haikodachi, I managed all the blocks and punches over about 25 minutes of effortful sweatiness. When the class moved on to stances and kicks I pulled back and sat down, my legs feeling like they were filled with lead. I was cactus the next day, but boy was it worth it. Maybe we will go back this week and try again (Mmm, maybe we won’t…).

Sunday, January 9, 2011

Haiku on Love

Physical limits
Will never get in the way
Of my love for you
Taking Charge
Some years ago I realised that there is no privacy in this modern world. If you have the right skills you can go on the Internet and use your browser to find almost anyone of interest. If you are really clever, you will be able to find out any piece of information you need to know about them, and break through the majority of personal codes to gain access to really private material. So I suppose I should not have been surprised at the almost total lack of privacy in hospitals. In a sense it is part of the dehumanisation demanded by bureaucracies. If you are in any way ‘special’ or have special skills, or demand any rights, or try to ‘take charge’ or at least try to be part of the treating team, then you cause endless problems to the sweet running of ‘the system’. The system needs you to be relatively passive, to fit in, to do what you are told (because it is for your own good), and to behave. Part of this is that the system cannot have you being coy.
So questions like “Have you had your bowels open today?” are routine. Not the sort of thing you would ask your partner (or vice versa), but important for nurses to record in the notes. Of course they want more: “So just the once, or was it more than that?” No, just the once. “And what was the consistency, what was it like?” Well, just normal (trying to fend off further questions). “Well, was it formed?” Yes. “Hard or soft?” Well, a bit firm perhaps. “Hard or easy to pass?” Fairly easy (relieved, thinking this might be the last question; I mean surely there can’t be any more…). “And how many lumps?” (I ask you, did you ever think that as a routine you would have to look back down the toilet just to make sure you can answer this question every day?). It was not till somewhat later that I realised there is a scale! Woo-hoo! The Bristol Stool Scale! I quote from Wikipedia :
“The Bristol Stool Scale or Bristol Stool Chart is a medical aid designed to classify the form of human faeces into seven categories. Sometimes referred to in the UK as the "Meyers Scale," it was developed by Heaton at the University of Bristol and was first published in the Scandinavian Journal of Gastroenterology in 1997.[1] The form of the stool depends on the time it spends in the colon. The seven types of stool are:
Type 1: Separate hard lumps, like nuts (hard to pass)
Type 2: Sausage-shaped, but lumpy
Type 3: Like a sausage but with cracks on its surface
Type 4: Like an Italian sausage or snake, smooth and soft
Type 5: Soft blobs with clear-cut edges (passed easily)
Type 6: Fluffy pieces with ragged edges, a mushy stool
Type 7: Watery, no solid pieces. Entirely liquid
Types 1 and 2 indicate constipation, with 3 and 4 being the "ideal stools" especially the latter, as they are the easiest to pass, and 5–7 being further tending towards diarrhoea or urgency.”
So there’s a really useful piece of information for the next time you have to go into hospital. If you are really excited by this, you can go to Wikipedia where there is a really well illustrated visual chart of the seven types that you can download to adorn the walls of your bathroom to inform your children and visitors. In the spinal unit they had done this, and it played a crucial role in helping nurses to fill in their charts. “So, was it more like this (pointing at a yellowy brown mess) or this…?
In the early stages you don’t mind the loss of privacy; or if you do you just have to get on with it. Every bit of your body becomes an object to be looked at, tested and pried into, according to your particular problem. Routine measurements of temperature, pulse, blood pressure, and respiration are done several times a day, and will be done at times to suit the nurses, not withstanding that you may be in the middle of breakfast, or perhaps a conversation. If you can’t stand to shower, then you will need to have a bed bath if you have a need to keep clean. If you can’t get to the toilet, you may have to be helped to use a bottle or a bedpan in bed.
As you will already know from the chapter on ‘Shit’, I had serious problems over the first few weeks anyway, and needed the nurses to not be coy. I was able to clean up mostly after toileting, but in those last moments getting into bed, the effort often caused trouble and I was always anxious to ensure I was clean. So I actually asked the nurse to check me (and if necessary clean me up and use pawpaw cream to avoid sores). I could not afford to be coy; I had to get past my embarrassment.
Another example related to having an indwelling urinary catheter for the first 4 weeks. However clean and careful you may be they get infected, and at the first sign of any temperature, or some discoloration or nasty smell in the ‘wee bag’, the first thing to do is to take it out and insert a fresh one. The other instance for a new IDC (as they are known) is after a trial of trying to be free of a catheter. This was discussed over several days before my resistance was overcome. Its not nice traipsing a wee bag all round the place, and trying to make sure the connectors don’t come undone. But, it is so easy. You can drink more fluids than you really need (which is great for the kidneys), and you don’t even have to worry about getting up at night. Anyway, with somewhat of a flourish the dirty deed was done, and a bottle was left slightly out of reach on the bed table – roughly in the spot they place your meals.
Try as you might, you just may not be able to pass urine into that bottle. Some people can do this sitting in bed, but I could not. I could not stand (which might have helped), and was really unstable trying to use my legs, even sitting on the side of the bed, so after several frustrating hours of this ‘trial’, and with an ultrasonically measured 800mls of residual urine in my bladder, we had to go to plan B – a new IDC for the next few days.
One of the delightful nurses from India had to do this for me with a colleague at 1am in the morning. I was in some pain with a bladder full to bursting, and almost at the weeping stage. So you don’t mind who does what to which bit of anatomy – although it is a strange process for a pretty young woman to have to do with an old man; grab a special part of you and gently but insistently stuff something down the middle. The nurse did the process under supervision, and I gained the distinct impression that she was not nervous because the patient was a doctor, she was nervous because it was the first time! Ah, we all remember those first times. But, hey, this was only the second time for me. Ultimately, with a bit of negotiation and anaesthetic cream, it went well, but I was too far gone anyway; just glad she managed, and my pain was instantly relieved.
Nurses waltz into the bathroom when you are on the toilet, and move bits of equipment around, or pick up clothes; it’s their hospital and their job, after all.
So, I have finished my shower, cleaned my teeth, used my deodorant, and put on my clean top. I wheel myself back to my bed area covering my dignity with a towel draped artfully across my lap. On the way I am greeted by a bright young thing of a nurse who says “Good morning sunshine” (Chris can’t quite remember my name having been off for several days, and is involved in heavily sexualised banter with the much younger and currently bed-ridden resident of the spinal unit in the bed across from mine). “That’s the first time I have been called ‘sunshine’ in a long time”, I respond (hopefully somewhat gaily). I close the curtains around my area carefully, lie on top of the bed, and begin to use a special antiseptic healing gel to coat my groin area, which has not quite recovered from the nappies I had to wear some weeks ago. Banter over, bright young thing, wanders over my way, a pair of shod feet appear at the base of the curtain, and a peekaboo amount of curtain is pulled back to allow our nurse to observe my activity. “Are you decent?” Absolutely not, I reply - which does nothing in defence of my nudity. The curtain is fully retracted and our bright young thing just out of school waltzes in to use her keys on my drug drawer in the bedside cabinet. She discovers that it is unlocked because I have not taken any drugs in the mornings since admission to the unit. Taking charge and, at my vast age, not abashed at all, I continue with my routine, legs wide open, smoothing on the last of the creamy gel, and beginning to arch my back to put my underpants on. Nurse continues with her routine of questions about my absence of medication, and departs (rather sullenly I thought) shod feet scuffing at the floor to begin some banter with another vibrant young male in the bed next to mine.
They don’t give it a second thought. No matter what response you come up with to provide a bit of privacy, they just intrude and get on with their routine. I have had my blood pressure, oxygen saturation and pulse rate taken while finishing off my toast and marmalade. I have had blood taken while trying to type this book (one handed at that point of course), and have had doctors walk into the toilet to make a new appointment because you have upset their ward round by deigning to be sitting on the throne at the time they chose to arrive unannounced. You’re an object; the spinal in bed 56! The closest you get to being a person is being called by your first name by absolutely everyone, even if you have not been introduced. You lose all status, and are reduced to a dependent, in some cases a child.
It changes when someone else is present of course. You have status because there is another person there. So on many occasions, Jan was there with me, sitting on the side of the bed or in a chair drawn up to the side of the bed. “Oh, I am sorry, I didn’t know you had someone with you, I will come back later”. That is not true all the time, and seems to depend on status. So if it was the medical team visiting, then it did not matter how many others were in the room, they all had to empty out (except Jan), so that various examinations or discussions could take place. Usually it was only 5 minutes, and then visitors could come back.
There was one circumstance which changed everything, and that was when my son was in the room, giving me acupuncture. This happened on about 4 or so nights a week – particularly in the early weeks of my paralysis. As you will read in another chapter, acupuncture was a life-saver. So (in the absence of much other treatment) I really wanted it to happen. What was funny though (when I was not on my tummy with a back full of needles, and therefore unable to see) were the expressions on the faces of various staff. There would often be absolute horror briefly visible, and then they would turn tail and escape. You can understand perhaps the meal staff, but for nurses to react like that was odd. I wondered whether they were just visually affronted, or whether they had some ethical dilemma and felt they had to report what was going on. I had verbal permission for it to occur (behind closed doors or curtains of course!), but I often wondered what conversations might be going on at the nurses’ desk.
Actually sometimes you hear those conversations, and it may be embarrassing to learn about someone else’s life in glorious detail, when you have enough trouble looking after your own life and have no wish at all to overhear private conversations.
You may be in the bathroom, and the nurses take the opportunity to change the bed linen, tidy up around the bed table and side cupboard. And of course they chat. Sometimes it is about their own private life and what did or did not happen last night. “Well, I said: ‘I am not doing that! I wouldn’t do that if you were paying me…’” was one conversation I overheard. “Anyway, you should have seen his face. He looked like a small child who’d been told off. Well he is a child, really…” (both nurses laughing). “Don’t know why I stay with him…”
There was always lots of discussion around the high points of last night’s television, or what some politician had said, or the latest scandal with a swimmer or cricketer. Sometimes there were snippets about conflicts in the system: “I told her months ago I couldn’t do any shifts in January, because my father was having an operation on his hip, and I was needed at home every day to help him and mum out. I don’t know whether she doesn’t listen, or whether she’s just a bitch.” Other nurse comments, and they both laugh. “Yeah, you’re right, but I’m not coming in… I don’t care what they do… They can stuff the job.” Other nurse comments: “She needs you more than you need her” “Yeah, dead right!”
Sometimes there are stories about fellow patient travellers on the ward: “He was expecting to go home this week. I feel so sorry for him. The size of that bed sore! I couldn’t believe it. There was nothing there last time I was on, and that was only about three days ago. I felt so uncomfortable having to tell him that he couldn’t go home until it was totally healed …. and also that he has to have bed rest for the next week. He was getting so mobile in that chair… He was so upset, and that father of his was furious; looking around for someone to blame…”
Most of the time it is prattle, and you kind of learn to turn a deaf ear. I have little interest in the latest gossip about some supposed starlet, or the sex life of one of the staff, and I tried hard not to listen in to conversations about other patients. It was easier when I was in a single room at the first hospital. I had not seen other patients, did not know any of them and, frankly, was so wrapped up in my own troubles that I barely noticed who was saying what to whom.
But at the spinal unit I was in a four-bedded ward, and the three other patients had been there much longer than I. All of them were trying to get home, in one case ‘trying to get a home’ from the council. They became people I knew, people whose stories I pieced together from what they said, what their visitors said, or what staff said about them. I knew all sorts of private facts about them. They became people about whom I cared, and for whom I had some respect given their persistence in the face of adversity.
So I began to think about their stories, and the urge to help was strong. I have been a therapist in one form or another for over 30 years, and a solution focused therapist for 15 years. I would listen, and almost immediately come up with some idea that might help, might make a change for the better. Hang on there a minute, I am a patient, and my sole task is to focus on my own recovery. Yes but… Somehow when you are working on other people’s problems, it makes your own less painful, or less important. But I was here to work hard at my own troubles…
This argument would go on in my head daily. There is a fine line between being positive in a social way: “I am sure the council has to come up with something eventually…” and being therapeutic: “Have you thought about…?” or “I think I know someone who might help there…” or “Did you ever read that book on… ?” Dilemmas every day. Ultimately, I had to pull back and become somewhat silent. I imagine this accentuated my difference – the age difference, my professional occupation difference, the fact my son was coming in a couple of time a week to give me ‘secret’ acupuncture. The other difference was becoming more obvious every day during those 4 weeks. I was quite rapidly becoming more mobile and more independent both in the gym during physio, but also on the ward around my bed. If I wanted to go to the toilet, then I transferred to my wheelchair and went off to the toilet. Two of the others could not do this. When it got to my using a walking frame, the difference became uncomfortable all round. I did not want to share each little triumph; it felt like gloating. I could tell from their comments that they were alternately pleased to see my progress, but disappointed and angry about their own status or relative lack of progress. I ended up being off the unit as much as I could and, while there, would work on the computer or read a book. I am sure they thought I was preoccupied or even surly at times, but I could not bear the arguments in my head around whether I should invade their privacy and become the therapist, translating what I had heard about them into something helpful; which would have been totally inappropriate.
I went back three months after discharge for a follow-up with my consultant. I could not resist revisiting the room; I suppose a form of what psychoanalysts call ‘undoing’. None of those I shared the room with were there; others had taken their place. We all move on.

Saturday, January 1, 2011

Haiku on the end of a year

New Year's Eve tonight
Fireworks will make quite a show
Taking Charge
As I said at the start of this book, I have had an incredibly lucky life. I have a family that really care, a wife happy to give up lots of her own time and tasks to support my recovery to the max. More than that, apparently, I have loads of friends – and that has been amply demonstrated throughout my illness.
I suppose part of my good fortune was to be incarcerated in the hospital complex in which I work; this made it easier for lots of people to just drop in. From the very start, my secretary would come in every morning with the newspaper, some real coffee, papers to sign, a list of things to do and the latest rumour and gossip from our department or from the world of ill health. She was and is always cheery. She was adept at keeping to herself what must have been horror and sadness. She listened to the latest information gleaned from investigations or conversations, and kept finding stories that made me laugh. There I was laying flat out in bed with no power or sensation below my ribs, but I could still laugh till my ribs hurt. She would bring in the latest well-wishing cards, and small gifts she had been asked to hand on, and then take away one too many baskets of flowers (particularly the ones that I knew from the past might increase the risks of an episode of asthma). Overall it felt like business as usual (but from a hospital bed, and not having to park the car and walk to work).
When Heather could not be there or had other early morning commitments, then my senior research technician (Sarah is also doing a PHD with me), would come bearing the coffee and paper and gossip and amusing stories. Sometimes she would come with another PHD student and we would talk about their projects, the latest blocks, the latest successes, the latest funny stories. They were happy to see each of my little successful tricks of movement, and hear about each new chapter on possibilities for the future.
Sarah had long planned her confirmation for what happened to be about 2 weeks after my admission. There was discussion about postponing, but in the end we decided I would attend. We gained agreement from medical and nursing staff, a wheelchair from the physio department, a rather fetching clean gown and some clean and bright white ‘Ted’s’ stockings (to assist in avoidance of deep vein thrombosis). Matt (also doing a PHD with me) wheeled me along endless corridors back to the Mental Health Centre and up in the lift to the department of psychiatry, and there I sat in a place of honour looking like a refugee from an inpatient unit (which I was), with wee bag prominently displayed hanging off the wheelie (we have a photo of the occasion). Sarah presented a stunning powerpoint of her work, talked about her plans and the timeline. The ‘Readers’ questioned aspects of her plan, others ask pertinent questions, the Chairman summarised. There was a (formal) meeting with me as main advisor, then a meeting with the ‘candidate’, and then the ritual statement of provisional approval.
But what was amazing was the almost total lack of negative reaction from all the people in the room. There was lots of support, and hand shaking. But nobody suggested I should not have been there, nobody made even a small wry comment about how stupid I looked. Everyone just accepted that I was the main advisor for the PHD, had a perfect right to be there and wear whatever costume I chose. As I said, amazing.
Celebration of Sarah’s successful confirmation, and then I was wheeled back down the corridors to bed, and a physio appointment. Bizarre, but why not behave as if all will be well? Just because you are paralysed does not mean that your brain has gone, or that you will not be able to do your job in some way or another. All part of therapy, I would say.
Others would come bearing gifts. There was a distinct Japanese flavour to all of this, with a Japanese doll moneybox for all the spare bits of change, a card and a plaque from my Karate Kids on Bribie, serves of sushi, and a little doll in a Gi with a black belt. Letters arrived daily, little notes of condolence, baskets and baskets of fruit, array after array of flowers, gifts of cake and biscuits and nuts and books and DVDs and a DVD series (‘Rome’) and two bottles of my favourite red wine. Overwhelming tokens of care and affection - all of which, in my emotional state, led to tears - again and again. The room and its shelves filled up, and between Jan and Heather various bits found their way back to the department for morning teas, or home to be stored for other occasions.
People, and our ongoing contact with them, are more important than the gifts they bring. I would no sooner finish with one set of colleagues from one context of my professional life, than another lot would arrive. Two younger colleagues happened to be nurses, and they would make wry comments about the state of the bed, or the bits of nursing practice they observed. As I think I have reported elsewhere, when the ward ran out of linen, these two knew just where to find some and how to purloin it. In person they were delightfully supportive, but their actions sometimes went further than words in providing dearly needed support.
Another very senior colleague brought sheets of typed up stories and funny jokes, but his presence was a mark of respect for my contribution to his clinic. My eye surgeon happened to be in the building one day doing an outpatient session, and thought he might pop in wearing his green surgical garb of cap and gown, just to see what had happened, and whether there was anything he could do. The director of mental health for the area popped in on several occasions to bring me up to date on bits of internal politics, to find out how I was progressing, but also just to support a friend. The Professor of Psychiatry came all the way over from the Department with an entourage to check up on my mental state (just kidding).
Two of my oldest friends in Queensland came in to provide continuity and joy, and gossip and chat. Two other senior colleagues, again some of our oldest friends, came in and listened intently to the story of our first day in hospital (see Chapter One), asking whether there were ethical issues to be raised about the fact I had not seen a consultant in the Emergency Department, or whether the Medical Board might be interested in ‘Mr. Cute Excuse for a Doctor’ and his obvious need for some retraining. What all of this does is to partially normalise this strange new world of being a patient rather than the doctor. It keeps the brain alive, it provides food for thought, it gives you hope for a normal life if and when this is all over.
Very shortly after my admission, I sent a circular email to all the contacts on my email address list (12th December 2009):
“Just want to let everyone know that I suffered a spinal stroke (??embolus) of some sort Thursday 3rd December, and am in Royal Brisbane Hosp from where I will transfer ??to Princess Alexandra Hosp next week or the week after. May be home for Christmas, but then at least a couple of months of serious work on the body. No-one quite sure what happened, and CT w/wo contrast, MRIs, Xrays, Echocardiograph, ECG, blood tests suggest I am normal. Problem is loss of sensation, tone, power below the rib cage. Went from right side T6/7 all the way down, and then crept terrifyingly up the left to the same level. Day by day is a challenge with steep learning curves (Can I lift myself round the bed, out the bed, use a wheelchair, wash my feet in the chair without overbalancing?). Generally good spirits but with flat times, weep easily when all my lovely family come round. Physio every day, acupuncture every day, massage this afternoon. Improving, but may plateau (?? at some point).
Anyone for Wheelchair Karate?”
Of course this led to a flood of responses from friends and colleagues around the world, some seeking more information, some clearly distressed, and all of them wishing me well. Originally I just sent this out to people to let them know that I might be out of action, and why. But the responses as they poured in created a dialogue, and all of that process kept me alive, kept my spirits high (well, some of that may have been the dexamethasone I was given in the acute stage), and gave some meaning to my efforts at recovery.
One of my adult students from my karate class at Bribie brought her partner, and given I had just finished physio, and was in my wheelchair, and it was lunchtime, we hooked the wee bag over the back, covered up as best we could, and went downstairs to one of the hospital canteens for lunch. Very strange experience sitting there as a half clothed patient, bare feet, sitting at a table for four as if nothing was any different to usual - except you keep looking around to see whether you know anyone, and need to hide! You begin to notice things. The first is that people either ignore you when you are at a counter choosing something from the offerings – I guess you are not in their immediate eye-line – or they smile at you, and then deal with your carer or whoever is pushing the wheelchair – as if you have lost your marbles, or become a non-person, or a child in a pram. In any case your status is reduced; and this was the first time I had really noticed this.
This change in status was to become a feature from now on. I noticed in lifts that families look at you and smile, but rarely address you directly. Other patients, if they are well enough, smile but say very little. The staff totally ignore you, especially the doctors. You can always tell a doctor – they are the ones with the stethoscope wrapped around the back of their neck as a status symbol. In my days as a young doctor we wore white coats – regularly laundered – with large side pockets big enough to hold the necessary equipment of the trade and a notebook; this was a fairly hygienic status symbol. I guess these days the stethoscope has become the leftover reminder of the old white coat. I say that doctors are easy to spot. In fact medical students in their later years of training gain enough confidence to put the symbol round their necks and strut as if they are already qualified. They also adopt the empty look that suggests serious concerns needing deep thought; it helps them to avoid acknowledging that patients in a lift are real people - or at least acknowledging them when they are out of their beds. It’s all about status…
And the stethoscope? I always worry when a medical instrument is treated casually. It’s not that I have noticed many open sores on the back of the necks of medical staff. But we do live in an age when every body contact by a nursing staff member is predated by the donning of a gown, a mask or at the least a pair of sterile rubber gloves. It seems to me it is an arrogance to not at least have a small sterile cover on the business end of a stethoscope to ensure that nothing nasty is cross-transferred from one patient to another.
Anyway, coming back to lunch, and having had to put up with hospital food for a couple of weeks, I took the opportunity to have one of my favourite foods – a ham and cheese croissant (with a bit of salad of course, seeing as my personal dietitian was watching from across the table). Luckily, being in a hospital canteen where they as yet have not learned very much about healthy foods, it was ginormous and very, very satisfying. I was in heaven, and really happy to talk.
My friend’s partner, a postal delivery worker, had been giving my condition some very serious thought. He had been brought up in country Queensland and had seen dogs die from a tick. Given that despite all the MRIs and other tests no diagnosis was forthcoming, he had my full attention. I am not known for spending much time actually in the country even though I visit country towns in my professional capacity, and I could not remember spending much time under trees in the recent past. But, I had been developing a Japanese garden over many months, and this had involved involved hours in the garden; I guess you just never know. He described the symptoms of gradual onset of paralysis from the ground up (a bit like Guillain-Barré) – which did not quite fit my picture. Despite that, I was so grateful that so much thought had been given to my condition, and took it very seriously. When I got back to my room, I went online and looked up the clinical picture. This confirmed that it did not quite fit the story I told in chapter one. However, when my consultant neurologist came for the next ward round I raise the issue for discussion. He was amused at how I had gained the information, but confirmed that I did not have tick paralysis. But you never know, and where there is no diagnosis you need all the support you can get, all the extraneous information that might lead to a diagnosis. Most of all you need friends (and their partners).
My son and his three boys came up from Adelaide after about two weeks to see how I was getting on. He had arranged to come on his own with his oldest son, but the second son (aged 9) said that if Dad did not pay his airfare, then he “would walk to Brisbane” (a small matter of 1600 Kms). He really needed to see what was happening to his grandpa… They arrived in a flurry, and somewhat tentatively approached the bed, not quite knowing what to say, of course. The plan was to play cards (‘Uno’), to get us doing something together, but somehow this did not quite happen; there was too much going on. I had nursing staff urgently needing to take my pulse, blood pressure and temperature, and then some other visitors dropped in for a brief chat. In any case when you are in bed you don’t move much or do anything interesting, and kids these days are so used to life moving at a pace. So, the other two Brisbane based grandchildren came in, and soon all the kids were engaged with one another. Grandma had organised for them all to play Putt-Putt (just up the road from the hospital), and suddenly it was quiet – they had all gone, like a passing storm.
About 2 hours later the Adelaide lot were back to say goodbye before returning home. It had rained at putt-putt and my son had had to purchase (and subsequently bequeathed me) a beautiful golf umbrella (which now has pride of place with my aids in the back of the car. The boys were a bit more settled and we had a terrific conversation. But then…. one of them…. discovered…. the wheelchair! He sat and idly swung legs backward and forward, gradually learning to lock and unlock, and then manoeuvred around the room. Then they all needed a turn, and then the action moved to the corridor. What fun! It was great having them around, seeing their easy acceptance of a slightly new grandpa, and their joy in each others’ company, and their biddable nature when Dad took control. Kids are such a joy to have around, and I was so glad that I had been able to secure a single room. It would have been markedly different in a four-bedded ward. You don’t just need friends: you need kids. I know it’s a hospital, and I know it’s a very serious environment, but their sheer exuberance reminds you of why you should not give up, and why you need to work harder at getting well. Thanks guys.
Visitors continued when I moved to the spinal unit. Now being in a four bedded ward it was a bit more awkward, and most of the time we had to find a place outside, so that we did not disturb others or get in the way of the nursing staff. We discovered the café in the entrance to the hospital, a short 10 minute wheelchair journey from the unit. There was a wonderful slope approaching the main hospital, and like a child, initially I was a bit anxious about going down, would make sure that someone was holding onto the back of the chair, and would have my hands on the wheels to slow my progress. But as confidence increased I began to enjoy the speeding downhill (as I say, just like a child), and had the urge to try the process on my own – which I did on a couple of occasions. Freedom! I can leave the unit, ‘drive’ myself on a journey, and buy a newspaper and a proper cup of coffee. Woo-hoo! Independence!
But there was a problem. Going downhill is fine… But what about going back uphill on your own? The slope I am talking about is not that steep, and lasts only about 30 metres, but the first couple of times it was a mountain. I tried with both hands together. OK, but slow. I had noticed other wheelies who seemed to use alternate hands and get a real rhythm going. So I tried that. Better, but still hard. There was relief mixed with embarrassment when a passerby noted my plight and rescued me offering to push me the last 10 metres. Whoever you are, I thanked you at the time, but I now thank you again publically. On another occasion my petite secretary took over the duty as soon as I began to struggle. Again grateful thanks mixed with embarrassment.
I guess part of the problem is that you need to learn all those little techniques that make it easier to push the wheelchair. You need to gain, or regain, the upper body strength and you need the confidence that comes with practice. There are little things that make it all fun. Can you reach the lift buttons? Yes. Can you avoid the shutting of the doors by manoeuvring swiftly through? Mostly; I did get caught twice. How does that happen? I thought all lifts had light beams to avoid damaging people. Mmmm. Can you manage that uneven pavement? Yes, of course.
It is amazing with pathways. When you are able, you never notice that nobody seems capable of making a level piece of concrete path anymore, or capable of joining them up without some sort of lip. I understand with Queensland’s weather that storms can dump enormous amounts of rain in seconds, and that some sort of slope is needed, but when you are handicapped or in some sort of wheelchair, the smallest of difficulties can become major. In a wheelchair, a sideways slope constantly threatens to dump you in the gutter; OK when you are skilled, you just manage, but in the early days it can be nothing short of terrifying. And you get to feel stupid when you reach a join in between two bits of path, or a neat but tiny little step up that somebody built with some pride, and you just cannot get up and over it without a run-up. Guess that should be a ‘roll-up’. But visitors are a boon, as long as you can get over the embarrassment. They actually take pleasure in helping you to get over the slide for the sliding doorway, or the lip into the lift. I worry about other peoples’ backs (well I am a doctor), and so when one of my diminutive women visitors took on the task of pushing the wheelie, I was always anxious to assist and take the strain out of it, rather than relaxing and trusting them to look after their own back.
The other place we used to congregate was almost directly outside the 4-bedded ward in an open but covered concrete area. There were plastic chairs and benches and tables. This place measured my progress. When my mate Brian came to visit the first week, I was in a wheelie, and needed a push, the next week I was on a walking frame, and made slow but definite progress, particularly after one of the physios corrected my technique to help me go faster. The following week I was on Canadian crutches, again somewhat awkward but going places. Brian’s facial expression, his expressions of amazement and encouragement were fabulous feedback, a great reward for progress; just what a good psychologist should be doing, I say. Thanks mate.
Of course there were also other inducements to do well. You don’t get to mix much in the unit; you just tend to stay in the 4-bedded ward, or occasionally meet people being pushed on beds or driving electric wheelchairs. Out in the open area, you would come across all sorts of other patients. A young man lying face down in a bed, still on a drip, but leaning over the side to see, was surrounded by his young family, animated partner and sister and a toddler on a blanket and babe in arms. I never found out the story, but your heart goes out to people crippled at such a young age. I have mostly had my life, my kids are grown up, and I can exist propped up in front of a computer writing my silly stories. But how will they manage?
I think some of my visitors cringed when they were confronted by the rawness of the spinal unit, even the medical visitors. We would discuss what we saw, but sometimes if I did know some of the story, I was loath to share what I knew. It is all so traumatising.
Out in the open with visitors you do see some funny things sometimes. On the spinal unit there were a couple of Indigenous young men. Although they were technically not, they could have been brothers just from their immense size, and their specially adapted wide wheelchairs. They were often to be seen side by side engrossed in the unit computers, or side by side scoffing enormous amounts in the dining room. They handled their wheelchairs extremely well, and were obviously very experienced. There was a slope down from the covered recreation area (there are slopes everywhere around a spinal unit). This slope had a dog’s leg turn in the middle, and (from my ‘initiate’ point of view) look terrifyingly steep. Anyway, these two characters were having fun, racing down the slope. They managed the turn, but collided near the bottom. My visitors gasped, expecting serious damage as one of the wheelchairs turned over. But with surprising alacrity the young man righted his wheelchair, and laughing and laughing the ‘brothers’ went on their way. “How did he do that?” one of my visitors asked. “I don’t know, I am afraid. I think that’s in the advanced wheelie manual, page 33. I am hoping never to have to read it.”
To all of my visitors, I stand, bow, and doff my cap. You played an immense role in my recovery, shared various bits of the journey, made every attempt to normalize an horrendous experience. I salute you. I only hope that you were not traumatised by some of the sights you saw in sharing my journey. Or if you were, I hope you had time to sit down with a friendly psychologist, work it through and ensure there are no permanent scars.