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Saturday, January 1, 2011

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.

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