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Wednesday, March 2, 2011

Taking Charge
In the acute phase of my being ill, while people were trying to sort out just what I had wrong with me (or not), I ended up spending rather a lot of time in Radiography. Overall, I had
• one chest Xray (routine front on and, as noted elsewhere, curiously not in anyway related to the pain I had in my chest),
• a stomach Xray to look at whether I had a blockage in my bowels to account for the fact that I had gone a whole 7 days with out passing anything; and possibly to estimate the date on which I would burst),
• 2 CT scans (one aimed at my head, and one aimed at my lumbar spine but curiously not aimed at the chest or thoracic spine)
• 4 MRIs (one on admission as a kind of baseline, one to track progress after a few days, one with contrast medium to try to define the damage in my thoracic spinal cord a bit more exactly, and one of my brain (to reassure everyone that I do not have a demyelinating problem like multiple sclerosis)
• one guided lumbar puncture under fluoroscopy to get a sample of my cerebrospinal fluid (the stuff that bathes the brain and spinal cord), after 2 failed attempts using the standard method.
So I came to know the waiting area of the radiography department rather well, and also began to learn how to get on and off various tables when you don’t have any power and coordination in your lower limbs, and people ask if you can bear weight on your legs (having not been informed, nor read the notes). Several things fascinated me.
The first was that the coordination area where all the computers were, was a raised island. There were a couple of steps up to gain access to this walled eyrie, and that of course excluded anyone lying on a trolley, or sitting in a wheelchair. That is, the patients were sort of part of the hoi polloi while if you were staff then you were somehow raised above everyone else. So the staff would gather and giggle in this conning tower able to survey the world in comparative safety away from the rest of us poor mortals. This was made more obvious by the fact that it was Christmas, so this island of staff sanity was carefully decorated with all sorts of goodies including a desktop Christmas tree, while the rest of the department was a bit spartan in décor. There were no decorations in patient areas. Talk about them and us, and the process of dehumanization.
The bit that was even more interesting was the behaviour when a staff member actually had to approach a patient. Just by the steps into the eyrie, was a wash basin, and a whole range of boxes with protective aprons and various sizes of rubber gloves. So on exit from on high, the staff would quickly don an apron, and a pair of rubber gloves, then call out the first name (you note only the first name as if speaking to a child) of the patient they needed to speak down to. They would then walk across and grab the trolley or wheelie, and wheel someone off to a darkened room somewhere. They would return, strip of the gloves and the protective apron and throw them in a bin, wash their hands diligently, and then escape to the eyrie before taking a deep breath of the clear upper air. This ritual was repeated whether or not they actually touched the patient, or just picked up the notes (which of course had been handled by the patient), or just pushed the trolley. What a psychiatrist’s dream (or nightmare depending on which way you look at it)…. a whole department full of obsessive compulsive disorder, with compulsive hand washing. I began to have fantasies about adapting a group work program of desensitization to assist them with their anxieties as they came down the steps from the mountain.
This is a system gone mad. When I grow up I want to own a rubber glove manufacturing business, or a plastic mackintosh production company or a liquid soap distribution business. Whatever were these people up to? They were no longer conscious of the behaviour; it had all become a routine way of life. They must have gone through thousands of pairs of gloves in a year just to avoid touching a patient. And I particularly felt sorry for any of them who might suffer from sensitive chapped hands from all that hand washing. One middle-aged women did inspect her hands carefully after ripping the gloves off, then washed them very gently, and applied hand cream which was gently rubbed in with the expertise that comes of repeated practice. I guess her hands had some time to recover between shifts, but it made me wonder how such potentially damaging rituals evolve.
There was one wonderful episode where the staff member was a bit irritated – after all he had only just settled in the eyrie, and started to share stories with a couple of young women at computer screens. He stomped down the stairs, grabbed his fresh plastic mac and proceeded to put the neckpiece over his head somewhat roughly. It split, and he had to remove it and start the whole ritual again with a fresh mac, adding considerably to his irritation. I wanted to guffaw out loud, but managed to restrain myself. You never know what gets written into the notes later.
OK, I have heard of infection control, I understand about the need in some cases for isolation of people with infection, and I have read about the extremely nasty bugs like MRSA and VRE that can rapidly create havoc in a hospital system, transferring from patient to patient, and ending up eating your very flesh. So is this the system being ultra careful with our health? Perhaps, in which case I am truly grateful. But I also fear that this is just another routine system that has developed, now entrenched and lacking in thought, but complying with some tickabox process developed by the army of bureaucrats who run hospitals (who now exceed the number of doctors according a to a recent report from the Australian Medical Association).
If I knew that I was working with a patient who had a high risk of infection, I would want to take the same necessary precautions. If I knew I was working all day with nasty human products like poo and wee and snot, all of which can transfer infection from human to human via the host of a wheelchair or a handshake, I too would want to take sensible precautions. But the system has gone mad. The cost must be astronomical. I would suggest the whole pattern detracts from what is central in medical care – the patient/professional relationship, that therapeutic alliance so necessary in any branch of health care if people are to get better. If patients and professionals are not partners in the process of care, then medicine becomes something that doctors or nurses or others do to patients. How can you possibly begin to feel part of a therapeutic team (and take some responsibility for your own future health) if you notice that staff stations are 2 steps up in a rarified atmosphere, or that every time someone approaches you they symbolically gown up as if you are a nasty infective organism yourself rather than the centre of the care process.
Some other processes were equally ritualised, and when you really examined them it suggested that the original intent had been lost. Several days after I had been on the Neuro ward, a female orderly came in an rather efficiently flicked a duster at various surfaces. So a shelf over the sink had various objects removed, the duster was used speedily, and the objects were replaced. So, this was not an antiseptic wipe, carefully cleansing the surface and reducing the opportunity for bugs to grow in dust, it was a bit of a sham. Other surfaces followed – the window sills, a shelf behind the bed had all the cards and precious gifts and pots of flowers moved to accommodate the duster. The visitors’ chairs were given a special flick – after all, you never know what visitors bring in from the outside world. Was it a special antistatic, antiseptic cloth? I don’t believe so – it looked just like a duster you might have at home.
Later the floors were given a good mop. This was usually done with vigour and practiced technique by a wardie. The slightly grubby looking mop was dipped in the bucket partially squeezed, then whisked from side to side very efficiently. I suspect there may have been some antiseptic in the bucket – I sure hope so. On two occasions, the vigour of the flick exceeded what was needed, and I was in the firing line; a small spray landed – on one occasion on my cheek, and on another occasion on my arm. I hope there was antiseptic – after all I have personally experience of what finds itself on the floor (not including the grape). I guess I sympathise with the workers doing repetitive jobs, probably under some time pressure, but always wanting to get done in a hurry. So the original meaning of the process gets subsumed to ritual. Does it matter? No probably not. I am sure much greater care is taken when there are nasty infections around. And the bonus for someone stuck in a bed and paralysed is that at least you have something to watch, and ponder, but also you have company and someone to talk to.
When I first arrived in the Spinal Unit, I went off to have a shower. I say ‘went off’ but it wasn’t quite that simple. In the previous place I had come to learn how to shower on my own in the shower wheelie; I was really proud of my independence (Mmm, a bit arrogant perhaps, or just plain pig-headed). The OTs had not yet been formally assessed my physical capabilities regarding routines of daily living. In fact there was a sentence flagging this assessment on the white board by my bed. So the expectation of the nurses was that I would be placed in a shower chair, and that they would tend to my needs. Would I please buzz for them when I had finished on the toilet. I was expressly forbidden to ‘transfer’ to the shower seat without observation and support (I was reminded I had not been assessed yet!). They left my toiletries, but waltzed off with my carefully prepared pile of clean clothes which had been balanced precariously on my lap while being wheeled to the bathroom. I felt stripped and infantilised. Ah well, “Take charge!”
Leaving to one side the fact that it was almost impossible to get through the sides of the wheelchair to clean my undercarriage properly, I did what I could, and then manoeuvred the wheelchair over to the sink to get shampoo and soap in preparation for my shower. I then realised I had left my soap at the other hospital prior to transfer. So I buzzed one of the nurses, and asked if she could please find me some soap. “How did you get over there?” I wheeled myself. “Right… (slightly miffed) Well, we don’t use soap here. We use this all-purpose special antiseptic cream that squirts out of a bottle on the wall when you press this slightly recessed button. We put it on these special sanitized disposable paper wipes that come in boxes of 100.” Well she didn’t quite put it like that, and she did actually go off and find me a small bar of soap from somewhere, for which I was grateful.
Showering when you are partially paralysed is a trial. I have described some of the rigmarole in the first weeks of being in hospital, but with the changes in my physical ability, I did not want to sit in a shower chair. I wanted to stand up and shower like any other human being. Now just hold it right there, son; one step at a time. Do things sensible and slowly. Take time to get it right.
I could not stand without support at this time. So the first step is to make sure that the things to stay dry are left by the sink for later. I had lost my clothes, but I needed one of my towels to stay dry for later. The other towel I placed on the back of the wheelchair. Then I manoeuvred the wheelie across the bathroom floor (the tiles can make this trickey) almost to the end of a seat fixed to the wall. Get too close and the wheelchair gets wet when you turn the shower on. OK, now I needed to angle the chair so that I could lift my body across to the seat as easily as possible. What next? Lock the wheels. Always get the front wheels pointing forward so you don’t tip, and lock the main wheels so that the chair does not move. Place the soap and the shampoo on the seat, leaving space for me. No PAT slide, and no slippery cloth, but I can do this. One outstretched hand on the seat, the other on the seat of the chair, lift and move. So glad my arms are still strong. Now lift and move, making sure I am securely on the seat. Now lift and move three short hops; good now I can reach the shower handle. Angle the shower head so as not to wet the chair, and away we go. Bliss and triumph mixed. No-one can see me weep in the shower. I can do this. Hope I haven’t left any small messages on the shower seat; must remember to clean it down once I am dressed and back in the chair, and before I leave. Ah, problem, no clothes! OK cover the essentials with a towel, put pride in the non-existent pocket, and press the buzzer. Not surprisingly I was told off – again. “Don’t do things until you are allowed to do them!” But I was being extremely careful… “That’s not the point. Its our job to see you are safe. What if something had happened? Who do you think would get into trouble? And it could slow your progress….” OK (suitably chastened) (but still triumphant) (OK and still pig-headed…).
Every day you learn a new trick. So its easier to have the soap and the shampoo in the soap dish on the wall; it does not then get in the way of you moving along the seat. So you manoeuvre the chair to do this before you get into the angled position at the seat. Take three towels into the bathroom on the chair (even if you have to save one from the day before). One for the hook on the wall to ensure it stays dry, the other within reach on the back of the wheelchair, the third over at the sink in case the others get sodden.
As my strength improved, I found I could do this daily ritual with increasing confidence, and a bit more speed. Overall the bathroom ritual used about an hour a day initially, but I got this down to 40 minutes in time.
Then came the day when my dear tummy decided it wanted to work while I was sitting having a shower. Mmmm, well, I could dry myself, move back onto the chair, and move across to the toilet. Mmmm, let’s try something different. There were rails all around this part of the bathroom. It looked to me like I could stand and take some small steps, carefully edging my way around the wall to the toilet. I had been practicing standing and walking in the gym, why not try? I stood. Then careful sideways step after careful step, I reached the toilet and sat with relief and a big smile. Job done, I stood, and moved back to complete the sitting shower. It dawned on me eventually that I could stand for my shower, so every day after that I did, holding on to rails. Triumph and tears. I am taking a shower like a normal human being.
The bathroom became such an important place. I still had some tummy troubles, so a couple of times a day I needed to stop whatever I was doing and get there as quickly as possible. I became quite phobic about the initial passing of wind (totally out of my control, and really embarrassing), because it always meant I had only two or three minutes to get to a bathroom. During the day of course this could be problematic, simply because bathrooms were in use. Luckily the unit had lots; you just had to find one. Bathrooms were allocated to rooms and numbered accordingly. This makes sense in the management of a large number of showers first thing in the morning. So our bathroom was number 4. At a pinch we could use bathroom 5, but there were dark looks if you used the wrong one when one of the staff wanted to wheel in a bed bath. Watching the routines in my ward, I worked out that the first assisted shower was at about 6 am. So if I woke at 5 am and went straightaway to the allocated bathroom, I would not get in the way of staff, and would be left long enough without interruption to manage what I had to do. I was trying to cooperate…
At night there was a different story. Bathrooms 4 and 5 became storage for all the shower chairs, mainly to get them off the corridors and out of the way; very sensible. Mmm. Bathroom 5 was always full of lined up shower chairs, though occasionally you could find a tortuous route through to the toilet if you were lucky. Bathroom 4 seemed to be used only occasionally. You might find 3 or 4 bathroom wheelies in there but, even from sitting in a wheelchair, these could be moved around to allow access. It was frustrating. I guess the system seemed to be OK, because at night everyone was nicely bedded down. If anyone needed help, they just called a nurse. I was increasingly mobile in the wheelchair, and if I needed a wee at night, I transferred from bed to chair (being very careful and measuring all the moves), wheeled down the ward to the toilet, transferred, and got on with it. But if your assigned bathroom is a store-room, what do you do? Well, use the next one. And if that is a store-room? Just move things around, or go and find another one.
It became irritating, particularly as there was often an urgency to get to the toilet. So I talked it through with a charge nurse who said she could solve it. She designed a beautiful A4 page with a picture of a wheelchair, and a statement suggesting the bathroom was left clear of chairs at night because there were mobile patients needing to use it. The notice was stuck to the door. Bless her.
I slept well that night until I needed to get up for a visit. The notice was still there. And so were all the stacked up shower chairs. Damn; no pathway. Go next door… Damn, at least 5 chairs. So, being me, and from a wheelchair, I grabbed a chair, worked my way backward out of the door like a train in reverse, and then gave the shower chair a push down the corridor. Back into the bathroom, grabbing another chair, back up in tandem, through the door, and another push. Clear pathway. Lock the wheelchair, stand with the help of the rail, do the job, clean up manoeuvre back into the chair and back to bed.
A nurse eventually peered through my curtain: “Are you alright?” Yes, I just needed a wee, and could not get into a bathroom. So I shifted a couple of shower chairs to create a pathway. “I thought something was going on; I saw these chairs rolling down the corridor, and thought there was a ghost about. Glad it was only you”. No recriminations… The bathroom on occasion was clear, but most of the time our nice nurse’s attempt to help was just ignored. Guess they had always done it that way…
When you are handicapped, cleanliness can become an obsession. As I am sure you will know, blokes are never the best at toileting, and they have a core belief that any little messes are always someone else’s problem. Their mother always did it; OK she grumbled a bit, but she was always there. Later their wife or partner did it; OK she grumbled a bit, but she was always there. It’s a sort of narcissism, probably not even noticing that you have made a mess, or if you have seen it, believing its not your job to clean toilets. I remember when I was a med student, living in a shared house with three other males, there were always little niggles about whose job it was to clean up, or about who was the last person to use the toilet to ensure it was their job. Another solution was to have a girlfriend to stay over. No, I won’t go there…
Hey, I know how complex it can be to clean up after yourself, and it is even worse when you are in a wheelchair. So what do you do if the previous occupant has been a typical ‘It’s not my problem’? You can get offended or angry, and call a nurse to come clean up before you use this particular toilet. Mmm, are nurses employed to clean toilets? You can storm off on your wheelchair and find another toilet that is cleaner, and leave the other one for the next lucky person to find and clean up. Or you can take charge, and just fix it. I have now become an expert toilet cleaner, and I take great pride in cleaning the toilet before I use it, and then great pride in cleaning up afterwards to ensure that the next person does not have to do a thing.
I am told that in Japan the profession of toilet cleaner is an honourable one, and great pride is taken in sanitary procedures. So beside the lessons I have learned from Karate, I now claim to be a member of the honourable all-Japan society of toilet cleaners. Professor of Child Psychiatry with an OAM as well as an MHa-JSTC.
Seriously, I have been put into service at home, and have a particular use when we have visitors – especially small children, - especially small male children whose direction finding is not yet fully formed. At work we have loads of students attending seminars in the Department of Psychiatry, and I am put to good use after one of these. The ratio of young males is not that high, but even though they may be future professionals (or perhaps because they may be future professionals), they seem to think they have a God-given right to mess up the one male toilet in the department. I do sympathise a bit at exam time when everyone can be a bit anxious. Bit actually that is no excuse, and us males can all take on the job of cleaning after our own little messes.
It is not just the toilet. Surely at home when you wash your hands, you clean the sink a bit afterward, put the soap back in the dish, and put the towel back on the rack. The public version of this might be to clean up after the wall-mounted soap dispenser dribbles on the bench (which it does – probably has male origins), make sure that your throw of the paper towel actually achieves its objective and finds its way into the waste bin, and if the tap splashes all over the place, dry up the area. I am not actually on guard, you understand. I don’t actually mill around outside the toilet trying to guess who thinks their mother or their girlfriend will clean up after them. But, unfortunately I use the toilet several times a day, always having some urgency, and that agoraphobic fear of letting myself down in public. So, I notice these things. Am I being obsessive? Maybe…
Whenever we drive to places, I have to try and get there a little early to ensure I can use the toilet and have some certainty about myself for the next hour or so. Its all getting better, but I am still struggling with it. Flying interstate or internationally is a trial in part for these reasons. So we use the valet parking if we can – just so I am nearer and don’t have to walk too far. I try to pre-book seats, so that we can go to the metal detector and frisk area as soon as we can. A delay here, and I can get into trouble. Those irritating people inspecting my bag and ensuring I am not carrying bomb-making material, or have not been near a quarantined farm can interrupt the process and cause problems. Once in Sydney, the delay (“Have you ever had this done before, sir? Sorry for the delay; I just need to put this little piece of paper in my special machine. Won’t be a moment.”) caused me to have a small leak before achieving the Qantas Club. Damn. Stupid officialdom…
OK. One final story. I also, of course, have to go to the toilet after a meeting, before going on to the next one, or before going home. I am a member of a state committee to do with Child Services, and they meet on the 17th floor of a skyscraper in the middle of the city. Toilets are just past the lifts and down the corridor a few yards. Good. I went after the last meeting, and it always takes time to be sure I am OK. As I entered the bathroom, the light came on as I went past a sensor. Clever idea, saving money. So I sat, and after 15 minutes the light went off! Pitch black; I could have been down a mine. The bathroom, being in the centre of the building has no window, so no natural lighting. OK, don’t panic, I am sure someone will come into the bathroom in a minute… No…. OK, how do I clean up when I can’t even see where the toilet paper is? This is not just gloom, to which the eyes can recover; it’s really dark. So, my iPhone has a light. Easy. Well, not easy, because it keeps going out every 15 seconds, and I really need three hands. Ah well, I managed. How do I check the toilet to be sure I meet my own standards? I can’t. I grope for the door latch, work out how it opens, and step through gingerly. I then walk carefully the 10 steps or so toward where I remember the sink to be. Miracle happens; I have obviously triggered the sensor, and a blinding light appears. I smile, and check myself out in the mirror while I wash my hands. Now, I really should go back and just check the toilet. Nah! On this occasion (perhaps a little angrily), I decide to leave it for the building’s MHa-JSTC. I am sure they have one.
I am due to go back to the building for another meeting tomorrow. Must remember to take the iPhone with me; I just downloaded the Night Light App. I am sure that lasts longer than 15 seconds.

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