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Chemical Cowboys-a story of Guillain Barre Syndrome

By William Simmons, Australia

Simmonsb4(at)bigpond.com

COPYRIGHT: William Simmons

This material may be distributed and used for educational purposes as a warning of the health consequences of chemical exposure/s.

Other names herein have been changed.

Please see footnote by Diana Buckland at the end.

 CHAPTER 1

During the gulf war many of us were appalled and afraid of the consequences of Saddam Husseins' capability of launching chemical warfare against the Western World. However, we pay scant regard to the farmers in our own country who indiscriminately spray a range of deadly chemicals often risking the life and safety of their employees. Please believe me when I tell you that these chemicals are similar to nerve gas in that they cause both horrific painful disabilities and death. In my case, I would have much preferred to live in Iraq because at least I would have known what to expect. I relocated to a small mallee town several years ago to provide a safe and healthy environment for my wife and four children to grow and enjoy. To make this a reality I was always prepared to work on a variety of farms and do a variety of work. It did not take long before I began to notice a common unsafe use and storage of chemicals. It never occurred to me at the time that I would one day be a victim.

I was working in a vineyard at Wakool in October 1999 when I got sprayed. My life will never be the same. I was working in the vineyard for approximately five months before I got sprayed. The day it happened I was working with the leading hand de-budding vines. The vines we were working in run from row 1 to row 123. At 10.00am we were close to the top of row 68/69 and stopped for morning tea. We had only sat down for some 2-3 minutes when the owner of the property arrived in an octopus double lane sprayer down row 70/71 and sprayed us. The thick vapour was impossible to escape and the smell was repugnant. The owner quickly took off down the next available row and left the property.

I do not believe that this incident was an accident. The owner knew exactly where we were working. He had not been spraying all morning and why would you start spraying in the middle of the patch. I was so disgusted that I expressed my anger to the leading hand and left my employment the same day. Several days after being sprayed and I was eating more and still losing weight. Five weeks after being sprayed I woke and could not manage to put my shoes and socks on to go to work. By lunchtime that 9th day of December 1999 I was quadriplegic. The condition I was diagnosed as having is called Guillain Barre Syndrome. I would like to describe my illness and fightback at a later time. Another disturbing incident occurred shortly after I left the farm. The owner was taking a shortcut by spraying copper at night. He was anticipating that the next day would be fine and clear, conditions required for the harmful effects of the copper to escape into the atmosphere. The following day was cool and overcast making the melon patch dangerous to work in. The owner of the property knew this very well but still insisted on sending backpackers into the melon patch to pick, risking peoples’ lives and health in order to get his product to market early. The irony of this true story is that the load of melons were rejected because they were not ripe. The main focus of my attention now is to prevent these cowboys from killing and destroying peoples’ lives. Society these days do not tolerate people who drive drunk on our roads and the penalties have become quite harsh. I believe a tougher approach is needed to control the use of chemicals on farms in order to make a safe place for people to work and live. Certain procedures if implemented on farms could potentially eliminate current dangerous practices on farms. These procedures should be overseen by a regulatory body. It is my opinion that the following rules should be strictly adhered to:

All employees should be given a list of all chemicals stored or used on that particular farm. This list must contain known harmful effects on humans. Each employee is to sign a register to verify he or she received a copy.

Any person authorised to spray chemicals on farms must log the time, weather conditions before spraying. Spray person must get a signature off every employee stating that they have been informed of chemicals to be sprayed, duration of spray, and the location of the area to be sprayed. All employees working on the farm up to 24 hours after spraying has been concluded must also be advised.

Any chemical misconduct carries a fine of $10,000 for a first offence and suspension of chemical use for 6 months. Any subsequent offence carries a fine of $100,000 and prohibition of chemical use on that farm for life. Any chemical use detected whilst under suspension to carry a minimum 5 year gaol term. It is my strong belief that there is no excuse for chemical incidents to occur. Let us all work together to eradicate these chemical cowboys before too many other innocent people have to suffer. The person who sprayed me has a very high profile in the Bunker Hill area. I can only hope that this high profile person would chance to read this story because he would know it refers to him. Please forgive my anger when I say from the bottom of my heart that the world would be a better place to live if you were not in it. End Chapter 1

CHAPTER 2: LEAVING HOME

Tuesday 23rd October 1999, and I had no idea what would transpire that fateful day. Leaving Winnanbool at 5.45a.m. that morning my only thoughts were of getting to work early and trying to anticipate what work we would do for the day. I always met the leading hand early and we would always talk about the weather. The amount of money we could earn was directly related to the weather. We could work no matter what the temperature would be. The temperature may vary from minus one on a winter’s morning to 50 degrees Celsius on a summer afternoon. However, if it rained we would have to knock off and go home. We never got paid when it rained. We would endeavour to work six days a week and get a hundred hours a fortnight in order to achieve a reasonable wage. This rarely happened as it would usually rain sometime during the fortnight. I am a 50 year old family man with four young children. Christmas was drawing closer and each of my children had their own expectations of what that may bring. I felt a personal obligation to fulfil as many of these dreams as I possibly could. That’s what parents do.

At morning tea on that Tuesday morning I was sprayed with chemicals. My first reaction was of complete shock followed by disgust and anger. " What the hell is going on" I yelled at Barry Smith as he quickly took off on his Octopus Double Lane Sprayer and darted down the next available row again spraying furiously.

The spray was again drifting menacingly toward the area we would resume work. Barry Smith was clad in a white plastic protective suit and was towing his Octopus Spray Unit behind his fully enclosed and air conditioned John Deer tractor. I would not see the owner again as he disappeared down that row and left the property. The leading hand, after being sprayed, ran laterally between the rows trying to escape the lingering mist of vile smelling chemicals. Just writing about this episode and my skin is feeling itchy and my hands moist and clammy. My nose sniffles as to re-detect that awful smell that lingered for so long and which I remember so well. I now resumed work with the intention of catching up to the leading hand. The vines were now wet with chemicals and my mind was clouded with anger as many thoughts kept flashing into my consciousness. What do I say to the leading hand now, will I get sick, would it happen again if I stayed here, what about my family if I leave, how could this happen, surely this was no accident. I stopped to clean my glasses which were covered in what only can be described as a dry acid rain which made me wonder how I could see at all. I could not concentrate on the job as I quickly proceeded to catch up with the leading hand. I could not contain my anger as I approached Frank Faraci and I found myself screaming at him from several yards away. I no longer had the owner to blast and Frank being in a position of authority would now accept the full thrust of my fury. His calming nature only served to fuel my outrage as I was no longer working but walking down the row in complete rage. I feel apologetic now because it was not Frank’s fault that I was sprayed and we had become quite close friends over the past months. I didn’t stop to think that he had been sprayed also. I didn’t stop to think how he was feeling. Frank is a family man also and must also be feeling the pressure of family life getting close to Christmas. For the next hour and a half my mind was racing from thought to thought, sometimes subdued but often out loud. What should I do? Should I work here after being violated? If I left my employment would my wife support my decision? How would my children feel about me if I could not fulfil all of their Christmas dreams?

Lunchtime was soon upon us and I sat down in my car quietly reflecting upon what had happened. Frank and I would usually sit in his car and chat over lunch but not today. I sat in my own car today but did not even contemplate eating. The leading hand was visibly upset with me now and I would not approach him during lunch. In hindsight I cannot blame him. After lunch I explained to the leading hand that I was going home and I would not return to work here. Frank was not happy with my decision but reluctantly accepted my timesheet and would pass on my request to get paid on Friday. Frank ignored me as I got into the car and drove from the farm. I stopped at the farmhouse but the owner was nowhere to be found. It was now 12.50p.m. and I would be home before 2p.m. being a 78 kilometre drive. Far too many unexpected things had happened today and I could not concentrate on the road. Fortunately the traffic was light and the sun was not the problem that it could be later in the afternoon. As I drove slowly along the narrow country roads my mind was focused on the reaction I would get from my wife when the car pulled up into the driveway early.

What would I say to my wife? How would I be financially? How long is it till Christmas? What would I do now? My wife was watering the garden when I arrived home and she quickly came across to open the gates as I pulled into the driveway. As I pulled up to my customary parking space my wife closed the gates behind me. I could sense immediately without talking that she knew something was wrong. Without speaking Cheryl rushed inside and put the kettle on. I collected my work things from the car and followed her into the kitchen where I reached for a beer from the refrigerator and sat down. Cheryl was now sitting at the table drinking her coffee as I fumbled for words to explain to her what had happened. She was totally supportive of my decision to leave my employment and my anger slowly subsided into rational discussion. I now relaxed with a second beer as I was beginning to feel more comfortable. My children would arrive home from school at 3.15p.m. so I decided to have a shower and freshen up a bit before they got home. My children only have a block and a half to walk home but never arrive together.

I greeted them all in turn as they arrived but didn’t satisfy their curiosity as to why I was early until they all had arrived. I have always made it a policy in this household to discuss all important issues with the children and today was exception. Although my children were aged ten, eight, six, and four at the time I still believe they are made to feel part of the family when they are involved, even when they don’t understand fully what is going on.

I was now feeling much more relaxed and better about myself. I decided to give George White a ring. He had a farm approximately 20 kilometres from Euston which is 80 kilometres from home. He had new vines along the Murray River and also grew potatoes on contract for Smith’s Crisps. I had worked for him previously and believed that he was happy with the work I had done for him. As it turned out Tony was looking to start people on the following Monday and he was glad I had rung. My spirits were lifted immediately. The job would come with added responsibility of running the potato shed and a substantial pay rise and bonus system. My children would not miss out after all. I would start work the following Monday and my immediate concerns had all but disappeared. I also had a few days to do a few jobs around the house that I had been promising for so long.

By Saturday the 27th of October I had noticed that my appetite had increased dramatically and yet I was losing quite a lot of weight. I was concerned enough to discuss this with my wife but at the time it did not occur to me that it was the result of the pesticide spray. I have since learned that this type of weight loss is a common symptom in immune system disorders. The correlation between the spray and weight loss now leaves me in no doubt that these were in fact the events which led to my horrific illness. My wife was now urging me to see a doctor but I would have to go on Monday, the day I would start my new job. I certainly did not need any further disruptions to my work plans before Christmas. Besides that, I never liked to visit doctors and would usually go out of my way to avoid them. Monday morning came and I was up extra early and on my way to work. Everything was going to be alright. I arrived at work early and George White had immediate cause to comment on how much weight I had lost. I didn’t pay much attention because I was actually feeling quite well. I told myself that if we got a rainy day and I couldn’t work then I would see a doctor. In the back of my mind though I always knew that if the time came I would just make another excuse why I could not go.

I was happy working on this farm. I was given more responsibility and I always felt appreciated for the effort that I put in. I knew all the regular workers here and we always got on well together. Although I continued to lose weight over the next couple of weeks I still felt quite well. I was telling myself that this was probably normal given the fact that I was working up to 13 hours a day in the open in temperatures which mostly exceeded 40 degrees Celsius. Wednesday December 8 and I was running the potato shed on the farm. My job was to organise truck drivers, complete all documentation for bulk loads, estimate weights of loads, load trucks with a bulk loading elevator and to provide the final quality inspection of potatoes as I loaded them. This was in addition to organising the shed staff and giving instructions to potato harvester. It was important if it was a last load not to harvest too many as they would not last overnight in the extreme heat. Whenever I noticed that the shed hands were sending through inferior quality produce I would throw a potato at the iron shed where they worked. I would then slow down the system until such time as they got it right. We had three truck loads to do today and we never had any breakdowns as we often did, the three loads would involve loading 120 tonne of potatoes. We would finish a little early today which would be a nice change. On occasions when things have gone wrong we have been loading well into the night under lights.

We had truck cancellations the following day and I had arranged to start work early and do some work in the grapevines. We would start at 7.00a.m. when we worked in the vines in order to escape the afternoon heat. Our starting time in the potato shed would be determined by the truck booking times. Wednesday afternoon and I dropped Wally off at Euston on my way home. It was now about 4p.m. in the afternoon and I was travelling between Robinvale and Winnanbool when I fell asleep at the wheel. I woke when my early model Datsun sedan hit the gravel on the wrong side of the road. Fortunately there was no traffic and I managed to pull up just before I came to grief in the mallee scrub. I was still shaken several minutes after the incident. I had never fallen asleep at the wheel before. This was not the longest day I spent at work nor was it the hottest or hardest. I had felt a lot more tired on other occasions without falling asleep at the wheel. Slowly I gathered my composure and drove home very slowly, constantly shaking my head to make sure that I was still awake. After greeting the family at home I quickly went for a shower which made me feel a lot better. I sat down for dinner and ate a triple serving of stew which had become quite the norm for me over the last 5 weeks. A normal size meal was now never enough and yet my weight was still slowly diminishing. My height is 5 feet 11 inches and my current weight is 81 kilograms. Five and a half weeks ago before I was sprayed I was 94 kilograms. Wednesday evening I watched a movie on Austar and retired to bed at about 9p.m. after getting my four children off to bed. I would have to get up at 4.30a.m. and an early night was not an unusual thing for me. Thursday morning I woke as usual to the sounds of the roosters well before my alarm clock would have gone off. I got straight up gathering my work clothes, which I would leave in the kitchen on my way to the toilet. I was always very careful not to wake the children in the morning. I put my trousers on then my flannelette shirt and got my lunch ready for work. I would always leave my work boots and socks till last. I now sat down at the kitchen table to eat two pieces of toast and vegemite with my cup of coffee I had made for breakfast. After devouring my toast, and while my coffee was cooling a little, I bent down from my chair and grabbed my socks. I was absolutely astounded to find that I did not have the dexterity in my hands to put my socks on.

What was going on? As much as I tried I could not get those socks on. There is no pain, “this is stupid” I thought to myself. I shook my head, shook my hands, nothing would work. I took time out to consider what was happening to me.

"Have a cup of coffee" I said to myself as I tried to gather my composure. I now could not pick up my cup. I just sat there bemused for what seemed like an eternity. It was now 5.45a.m. and I would surely be late for work. Cheryl soon awoke and came through the kitchen on her way to the toilet. She looked surprised to see me still at home. She now made some coffee and asked what time I was going to work. I explained to her that I should have left half an hour ago but I couldn’t get my shoes and socks on. She laughed in disbelief as any one would having been told a tale like that. I was forced to endorse my earlier remarks "I’m fair dinkum, I can’t put my socks on. I cant even pick up my coffee." My wife now still laughing but without another word came over and put my shoes and socks on. Now my shoes and socks were on was I now expected to drive the car and work when my hands were now almost completely paralysed. I would now ring my employer but I could not lift the receiver let alone dial the numbers.

What would I tell him? I decided I would not try to explain what was happening to me this morning. That would sound just too bizarre. Cheryl dialled the numbers and held the phone to my ear while I told the employer that I was not feeling well. I was actually feeling fine, I was in no pain or discomfort, but I was now very concerned about what was happening to me. I then rang Wally, with my wife's assistance, and told him I could not pick him up and take him to work this morning. Life without hands must be hard to cope with I thought as I now moved to the lounge room and sat down to watch the morning business news. Surely my new eccentric problem was only some kind of temporary glitch. As I sat watching the television I could now notice the strength being sapped and extending upwards towards my elbows. I dare not say anything to anyone now as I did not want to alarm anyone. My wife was now busy getting the children out of bed and ready for school. The occasional shout of disapproval could be heard as the children would not cooperate as required. Cheryl would have the children’s schoolbags ready, lunches prepared, faces washed and clothing inspected with time to spare before it was time to walk to school.

It was now 8.15a.m. and the children were all ready and waiting in the lounge room where we chatted casually about what would happen at school today. As I chatted to the children I could feel the weakness extending up my arms and it was becoming increasingly difficult to lift my arms from the chair’s armrest. I would try not to alarm the children and tried to act as normally as I could. I had explained to them that I was a little tired and left it at that. At 8.35a.m. Cheryl left with the children to walk them to school. She would stop at the post office and collect the mail at 9.00a.m. on her way home. Often a trip to the main street could take quite some time as everybody knows each other in these small towns. A trip to get the mail is like a real social gathering and Cheryl always liked to be a part of that in case someone would drop a bit of topical gossip. The sudden silence was overwhelming as I now had time to contemplate what was happening to me. My fears of financial instability and family concerns which were so evident some five weeks ago came flooding back re-establishing a new uncertainty. I must stay calm and not alarm my wife and children. Cheryl soon returned home and gave me the mail which I couldn’t open. There was little of any importance anyway.

Cheryl was now insistent that I go to the hospital. I kept telling her that it was just some kind of dizzy spell that would clear itself soon. Cheryl now having had enough of my stubborn attitude, started the housework, putting the laundry out and collecting the morning breakfast dishes ready to wash. After being seated for several hours I decided to stand up and stretch my legs for a while. As I stood my legs buckled from the knees and I went crashing forward onto the jarrah polished floorboards. My wife hearing the vibrations came running in to see what was wrong. By the time she arrived I had managed to get myself on all fours. It took her all her strength to help me back onto my chair. " That’s it, your going to hospital' she said in an agitated voice. Again I assured her I would be alright and refused to let her take me to hospital or ring a doctor. I told her if I fell again I would go. She left in a rage and went out the back to peg the washing on the line. It wasn’t long before I fell again this time from the sitting position of my chair. My wife was still out the back and I didn’t want her to see me like this.

I now had no strength left from my elbows down to my hands or my knees down to my feet. I managed to crawl from the lounge room down the hallway to the front door. The front door was open as it usually is in summer and I pushed the wire security door open with my head. I crawled out onto the front verandah where I got myself to the edge next to a verandah post. Pushing my legs over the side onto the grass I was able to attain the sitting position. I now used my upper arms to bearhug the verandah post and heave myself up. My wife soon came to the front of the house to see what I was doing. "See I’m fine" I told her as I clutched the verandah post for dear life. I must have been a little dizzy before I explained but now I’m fine. The words had no sooner left my mouth when I came crashing down on the lawn, my arms no longer with the strength to hold me up. "This time you are going to hospital you stubborn idiot". Cheryl ran inside to get the car keys and summoned me to the car. I was still able to crawl on all fours across the lawn to the car where Cheryl had the front passenger door open ready. It took a combined effort to get me in the car where I could only lean against the door once it was closed. Cheryl was telling me I must have had a heart attack or some kind of stroke. The Winnanbool hospital is only about 800 metres from my place so our trip only took a few minutes. We arrived at the hospital at about 11a.m. My wife had now taken charge of the situation and I would now do as I was told. "Stay there and don’t move" she said as she ran to the reception desk to ask for help. Two nurses soon appeared and transferred me into a wheelchair escorting me inside

My wife now drove my car home and would walk back to the hospital. She does not have a license to drive because she has been having operations on her eyes for cataract blindness. I was placed in a waiting room and waited quite some time before Dr Steve Wise would arrive. He required the assistance of the nurses to get me onto an examination trolley. After explaining to Dr Wise what was happening to me I got the distinct impression that he did not believe me. Maybe I was wasting his time I thought. I had my tonsils out when I was four years old and had rarely seen a doctor since and I was now 48. Dr Wise assured me that he believed me but had no idea as to any possible diagnosis. My movement was now confined to my head, nothing else would move. Yes, I was now quadriplegic. Dr Wise would ask questions then disappear for long periods before returning to ask more questions. In the meantime my wife had assessed that my condition was serious. She decided to go to the school and bring my four children to the hospital to see me. This I greatly appreciated as I was unsure still of the outcome of my illness or how much further I would deteriorate. Dr Wise finally came in and said he had a good idea of what my problem was. He said I had a rare condition known as Guillain Barre Syndrome. This was the diagnosis after much consultation with colleagues and specialists in Clarinda.

The doctor now informed me that I would be escorted to Melbourne by air ambulance and he quickly left to make urgent arrangements. While he was away confirming travel details I couldn’t help but notice the frightened looks on the faces of my wife and children. I tried to make jokes and lighten them up for this was hurting me much more than them to see them that way. By playing down my ailment I hoped to give them reassurance. It was now quite late in the afternoon and Steve Wise informed me that it would be impossible to get an air ambulance here before dark and our tiny airstrip did not have landing lights. He would now escort me personally by ambulance to Bunker Hill where I would wait at the hospital there for an air ambulance to take me to Essendon airport where an ambulance would be waiting to take me to Byrneside hospital. Nurses were now summoned to connect intravenous as a matter of precaution for my impending journey. "Will he be home for Christmas" my wife asked the doctor as we waited for the ambulance. He explained to her that some people recovered very quickly from this disease and some in a matter of weeks. A few hours earlier he had no idea what was wrong with me but now he spoke as if he knew exactly what was happening. Listening quietly to what he was saying I believed that I was stronger and fitter than most my age and I would recover in a couple of weeks. The rest would probably do me the world of good. The ambulance soon arrived and I was quickly loaded onto the trolley and placed in the back. My wife and children were allowed to get in the back with me to say their goodbyes. I always remember feeling that I was glad that this was my family. Ann-Marie, my eldest daughter, gave me a dolphin she had made in craft at school and told me to keep it with me always as it would bring me luck. In fact wherever I would go I always made sure that I could see that dolphin. It was now my link to home where I belonged.

As I looked toward the rear of the ambulance I could now see my family standing together, my wife overcome with emotion as the tears visibly and profusely streamed down her cheeks. I too was choked with emotion as the rear doors of the ambulance were closed on us. I had never been away from home for more than a day in my whole 13 years of marriage. As the ambulance pulled out of the hospital and into Pioneer street I could still see the stunned look on my family’s' faces as the children continued to wave goodbye. As we gathered speed I looked out the window to see the house where I lived and enjoyed so much and tried to picture its every detail to store in my memory. This was very important to me for I knew not when I would see this place again. END CHAPTER 2


 

CHAPTER 3: JOURNEY TO MELBOURNE

It was now dusk as the ambulance turned left from Pioneer Street onto the highway and headed for Piangl, a small town about 45 kilometres from home and half way to Bunker Hill. The doctor and second ambulance officer were in the back with me still positioning things here and there getting themselves organised. I was restrained quite firmly and was feeling quite sore and uncomfortable at this stage as I had now been lying on my back on the examining table for some 8 hours but could not move. I tried to look out the rear of the vehicle to get my bearings and watch the last flicker of lights go out as Winnanbool disappeared into the distance. As there was no more to see out the rear and it was now quite dark I began conversation with Steve Wise. We were on the Winnanbool improvement committee together and we were currently involved with setting up a banking facility in town. The last major bank had left this town several years ago. Every now and then Steve would interrupt our discussions to check my vital signs and ask questions about my mobility. Each time he did that it at once reminded me of the terrible back pains I was now suffering. This was my doctor beside me but I dare not tell him. In actual fact the only times I had ever seen Steve was at our committee meetings and I always perceived of him as being quite arrogant. Our trip to Bunker Hill went without incident and it was decided to leave me on the ambulance trolley while I waited at the hospital there for news of the air ambulance. I was taken on this trolley and placed near the nurses station to wait. Steve now said his goodbyes and would return to Winnanbool. Another doctor from Bunker Hill would escort me to Melbourne.

The nurses going this way and that about there business but rarely a glance toward me. It was as if they couldn’t see me or just didn’t care. The more time I was alone the more time I had to think of my terrible back pain. Eventually two nurses came over and looked at the bung for the intravenous that was put in in Winnanbool. "We don't do it that way anymore" one nurse explained. After some consultation they decided to leave that one and put another in the other arm. It was not long before they would decide to put another in the original arm. Was this target practice or were they not confident they could do their job. However the attention was appreciated as I now needed the reassurance that someone was looking after me. I had arrived here at about 9.30p.m. and it was now just past midnight. This was going to be a long day I thought as I was still not sure when my plane would arrive. At last I was informed that my transport would arrive at 12.45a.m. It was not long before I was loaded back into the ambulance to meet the aircraft. I was hoping they would have to take me off this hard trolley that was hurting me so much and I could get some relief from my pain. The rear of the plane was small and was only designed for passenger to lay down. To my horror the trolley I was on just clipped into position in the plane. If I could raise my head I could touch the ceiling of this thing I could only describe as my casket on wheels.

I was now unfamiliar with the people looking after me so I never spoke unless I was required to. The doctor who was to escort me sat in front passenger seat and twisted around to monitor me. The runway was rough and the small plane vibrated frantically as it gathered speed ready for take off. My pain was almost unbearable as I willed this plane into the air for some relief. It seemed to take forever to get this contraption off the ground and when it did finally lift my pain relief was minimal. Even in the air this plane shuddered and shook and I now wished I wasn’t here. I had become now quite distressed as I was now in fear of this plane landing and the pain that it would bring. Trying to grit my teeth and fight the pain I found that it was getting increasingly difficult to breathe. Although I was now in very serious trouble, each time the doctor asked I squeezed out the words that I was fine. Soon though the doctor realised that things were not fine and was giving me oxygen. This helped me breathe but did nothing to alleviate the pain I was now suffering.

We were only in the air some twenty minutes but it felt like several hours to me. As I layed there with my oxygen mask in place my only comforting thought was that I would be home with my family by Christmas. I had heard Steve Wise say that and I had taken that on board and strongly believed it to be true. If for some reason I could have anticipated the horrific pain and suffering that would befall me over the coming months and year then my life would have ended right then and right there in that aeroplane. For I had no idea that the pain I was suffering now was only a gentle prelude of what was to come. Finally the pilot informed the doctor that we would land at Essendon airport in about ten minutes. The doctor duly fastened his seat belt and I, although I was securely strapped in, tried to brace myself for the impending rough ride. Although none of my body parts would move I felt my teeth beginning to grind being pushed together tightly by my jaws. As we hit the tarmac I was fearing the worst but apart from a little extra discomfort it was nowhere near what I had been anticipating for so long. The plane came to a halt and I was keen for them to move me out of this thing. Perhaps the act of moving me would give some sort of pain relief, even if it was only for a few seconds. I shall know better on the trip home not to travel on this aircraft.

The rear of the plane was opened and immediately I could feel the strong crisp wind cut through my skin like a knife. I had left Winnanbool with just my work trousers and workshirt. I had left my work shoes and socks so that my only possessions were my wallet and the few clothes I was wearing. I think my body was at last moving as it shivered all over with cold. I was soon transferred into an ambulance and we quickly took off and found the freeway which would take us to the city. I could hear the driver calling for instructions to the Byrneside hospital but could not clearly identify what was being said. The doctor was now by my side administering oxygen as my breathing was now difficult and inconsistent. Coming off the freeway at North Melbourne I could see the lights of the city and for the first time I could see the reflection of this ambulance’s emergency lights as we passed buildings with glass windows. This was my first indication that my condition may be a bit more serious than I was being led to believe. We soon were pulling into the basement of the Byrneside hospital where I was quickly unloaded and placed in a corridor while the ambulance officer approached the admission desk. I could see the head shaking and disagreement as it soon became apparent that they would not now take me here. They had had several emergencies during the night and my place was now not available. If there was little to worry about before it was now quite apparent that I may not live past this night.

After some deliberation I was loaded back into the ambulance but remained stationary while the ambulance officer tried frantically to find a hospital that would take me. After hearing that this was now an extreme emergency there wasn’t a hospital in Melbourne that could accommodate me. It was now 3a.m. Friday morning and still I was no closer to treatment or sleep. This had become a personal nightmare and I still today wake in the night dreaming that I’m still in that dark cold hospital basement. At last they were able to detect a hospital in Blackwood that would take me. There would be no bed for me there but they were equipped to handle this emergency. "Hold on" the driver said as we made our way through city traffic on the wrong side of the road and headed south toward the bayside suburb. Our trip only took about fifteen minutes and we soon pulled into the emergency entrance of the Arthurton hospital on Prospect road. END CHAPTER 3

 

 

 

CHAPTER4 THE ARTHURTON

I was quickly unloaded from the ambulance and parked against a wall in a long narrow hallway. My escort doctor was not now present and I knew not what arrangements he had made to get home. As I lay there watching the ceiling I noticed on the hallway clock that it was now almost 4a.m. Nurses and orderlies walked past and it seemed they didn’t even notice I was there. A doctor soon arrived and ordered two nurses to take me to intensive care where I was placed on an examination bed with the use of a slide board. This doctor who I later could recognise as Dr Dapper wore a black suit white shirt and tie and there could be no doubt that this tall thin man was in charge. There is a presence about some people that you never forget and even in my weak condition I could see he had that presence. When I was correctly placed on this narrow bed on top of a white sheet the nurses quickly left drawing the curtains behind them as they left. I could hear the doctor issuing instructions in the hallway and it was several minutes before he drew back the curtains and approached my bedside. “What has happened to you” were his exact first words as I lay there with that bright light from overhead shining in my eyes causing me discomfort. After examining my mobility and testing reflexes he put me on a spirometer to measure my breathing capacity.

I was explaining to Dr Dapper the progression of my immobility over the last 24 hours when I noticed that now even my lips had become numb making me slur my words like a drunk. Although I was telling everyone over the past day that I was feeling fine I now thought it best that I told the truth. My cheeks were fast becoming paralysed also and my eyelids were also but not from tiredness. After reviewing the results of my breathing test the doctor looked at me in a stern way and gave me news I really didn’t want to hear. "In about an hour or so it looks highly probable that someone will come in and place a tube down your throat to help you breathe and you will then be placed on life support until we can stabilise your condition." For the first time now I was very afraid and I think the news had left me visibly shaken. A second neurologist now appeared and he was introduced to me as Dr Yeoman, a small dark man with glasses and an occasional twitch as he spoke. Dr Dapper now left and this man would organise my treatment. “We will not put you on life support until the very last moment” he said as he was there to monitor my breathing every ten minutes. People were now coming and going and bringing different machines in and assembling them until my once vacant cubicle was now quite cluttered. Although Steve Wise had finally diagnosed my condition as Guillain Barre Syndrome these people were not as sure. An ECG was ordered, this would give further evidence of my condition.

The curtains were now drawn and I could see 15 to 20 people in white coats assembled across the hallway and Dr Yeoman would now go and speak with them. Soon he returned with these people surrounding me and asked if they could see my condition. I was in no position to refuse as they began to poke and probe my immobile but aching limbs. I came from a town of 250 people where we all know each other and this was absolutely overwhelming for me to have all these people staring at me. These were first year doctors who had never seen my condition and would learn from me. One male doctor was now ordered to put a bung in my chest in order for a process called plasmapharesis to take place. It was now asked why I had all these other bungs in my arms and I explained that it was from over zealous nurses doing their jobs. All those three bungs were now removed in case they became entangled in tubes and I was now to have this big bung put in feeding directly to the main artery of the heart. I was given a local anaesthetic and I was asked every minute or so if I could feel his pounding on my chest. When he was satisfied that my pain would be deadened he unbuttoned my old work shirt and swabbed my chest. Having now changed surgical gloves I now watched as he cut into my chest with his sharp knife, cutting precisely above my breast bone. I was feeling uncomfortable and tight but no real pain as I watched the blood ooze out of me and soil his gloves. A second doctor was now assisting with the control of blood as he dug his fingers into my chest to position the bung. Each time his fingers touched my breast bone I felt much pain as he explained to his colleagues that he was having trouble positioning the bung into my main artery. It must have taken some fifteen minutes to get the job done and I could not control the tears that were swelling in my eyes and now freely running down my cheeks. It was now almost 7a.m. and I was still wide awake. There was too much happening around me and too many thoughts coming and going to ever contemplate sleep.

It was now explained to me that the process of plasmapharesis would take almost 5 hours and I must stay very still while it is happening as my blood pressure would drop alarmingly and any sudden movement could be fatal. I would now have to undergo this process 4 times over the next week. My vital signs were now taken again before the blood machine expert would arrive. Each time they tested my breathing my heart was in my mouth not knowing if they would put me on life support. A sigh of relief as my breathing once again just managed to escape their guidelines. The lady who was responsible for the process soon arrived and while she set her machine and positioned bottles and wires and tubes she quietly explained to me what the procedure would be. It is very important that you do not fall asleep and you must not pass out. There was one thing I was confident of, I did not believe it was possible for me to move on her. With Guillain Barre Syndrome something has caused the anti-bodies in the white cells of the blood to fail to recognise good from bad cells so the immune defence system goes haywire and attacks the nervous system and then the respiratory system . To stop this happening and to stop the condition escalating the process of plasmapharesis aims to pump the blood from the body and separate the white cells from the red cells. The red cells are pumped back into the patient immediately while the white cells are removed. When all the white cells have been removed they are then replaced with a plasma substitute. This effectively means that the bodies immune defence system is being removed.

I would have much time later to find out about this disease but for the moment I watch while it is announced now that the machine will be started. If the procedure becomes too dangerous for me I will be placed on life support immediately. I waited for the machine to start with nervous anticipation and now glanced at the clock, which showed it was 8.10a.m. That would mean that I would lie awake here until at least 1p.m. The thought that I would be here until after lunchtime reminded me that I had nothing to eat or drink since yesterday morning in Winnanbool. Nor had I the urge to use my bowels or urinate in all that time. The doctors who had been surrounding me and watching the procedures now dispersed and I was now feeling more at ease with just a machine operator who gave most of her attention to her craft. I now watched down at my chest and saw the constant flow of blood escaping down the tubes and into the separator. On occasions I was feeling faint as if I had stood in the sun too long and the blood was rushing to my head, but for the most part it was the constant and unrelenting pain from my limbs that caused me most concern. During the procedure the worst thing was constantly looking at that clock to see only another 5 minutes had elapsed when it felt like hours. On occasions though someone new would open the curtains and introduce themselves as a social worker or occupational therapist , even a priest came in and I at once thought that this was not a good sign.

The flow of blood would occasionally stop and the operator would check the lines and sometimes even move my head up or down to restart the flow. After a while I became accustomed to what was happening and began to chat casually to the operator about my family and home life for me. During my treatment a nurse would appear every 15 minutes to check my lung capacity and each time I feared the worst as I would anxiously wait for the results. The point where I was to be put on life support was at 1.1 litres air capacity and for the past few hours I had seemed to stabilise at 1.3 litres. Now as each test was passed I was gaining more confidence of passing the next. My first treatment was almost complete but it was now 1.40p.m. and the new plasma was yet to be pumped into me. Pumping 2 litres of exchange plasma into me took only about 10 minutes. By the time I was unhooked from the machine it was almost 2p.m. I was now feeling quite drained and tired and despite the pain I was in I could quite easily have closed my eyes and slept. However it was not to be. It appeared that every medical student in Melbourne would visit me this afternoon and on each occasion they were accompanied by a doctor and show them my reflexes had gone and they would always scrape a stick across the souls of my feet. 'Can you feel that" they would always say, but surely they knew already that it hurt me by the anguished look on my face. Soon a social worker arrived and explained to me that I was entitled to send these people away if I had had enough or it was getting too much for me.

The rights I had been explained to me by the social worker was not obviously explained to many people as a constant stream of people were coming to see me. I was becoming more agitated with each visit as my lack of sleep and weakened condition was getting the better of me. I must now stay here for a while until such time as my blood pressure returned to normal levels. I was also monitored every 15 minutes for my breathing which meant I could not sleep yet. ' I have these people that I would like you to see" was becoming the common words I would here as another strange looking doctor would appear. I eventually succumbed to the barrage of onlookers and tried to exercise my right to a little privacy but these people were not going to take no for an answer. " It won’t take long and then you can rest " was there plea but it was now late afternoon and I was in no mood to entertain any more guests today. I had been visited and poked at today by more people than there were in the whole of Winnanbool. I could take no more and soon my outburst was released. I will speak with Dr Yeoman now and nobody else I screamed, or at least I intended to scream, as my breathing was very much still shallow. So we had a stand off because they were not going to leave so I closed my eyes and refused to speak with anyone. They tried shaking my arms or legs but I refused to respond. My message must have got through because Dr Yeoman soon arrived and ushered people away in order that we may speak in private. “It is in your best interest for you to talk with these people” he explained and I soon realised I was not going to get any support from him. "I would very much appreciate it if you would take me out the back and shoot me because I can bear this not 1 moment longer". "We are not allowed to do that". "Then take me from this place of yours for I no longer want to be here. Just help me to the front steps of your hospital where I can fend for myself because I cannot tolerate these audiences any longer”. Although Dr Yeoman was not happy with my attitude he left but the spectators still arrived, but I am very stubborn when I want to be and I would speak no more or I would pretend I was asleep. The hours marched on into the evening and each time I would doze off a new test would arrive. Late on Friday night my emergency table was required and it was time to move me. I had no idea at all what they would do with me as there were no beds available.

Soon three male orderlies arrived at my bedside and announced that they were here to lift me. I was feeling very apprehensive about this but they would wait for the nurses instructions. The head nurse now explained to them that they would carry me some twenty yards where they had prepared a lounge chair for me. My legs were swung around and supported by one person while the other two would carry one arm each. The large male on my right hand side grabbed my arm between his two hands and as he pulled I felt my shoulder crack and pull out of joint. They had to quickly put me down as the sudden pain was too much. After proper instruction they lifted again and although my shoulder now hurt like hell I allowed them to carry me out into the hallway where a solid vinyl armchair awaited me. I was positioned in the chair and propped up with pillows as I had no trunk control to stop me falling out. The movement was the first real relief I had from my chronic back pains but now my shoulder and arm ached with a burning pain. This chair would now be my home until the middle of next week. As I sat there I could watch the people walking past and I looked down to see my feet were swollen severely and looked purple. They were now giving me much discomfort and I would try to summon any passer by to stretch my legs out and back again for relief.

Although my ankles and right arm throbbed with pain I felt as comfortable now as I had at any time in the last two days. At the time of my next breathing test I was awakened from a sound deep sleep. When I woke I immediately thought that I must have been asleep for some considerable time. In actual fact it was my only sleep for almost 2 days and it couldn’t have been for more than 10 minutes. It was the early hours of Saturday morning and since I was in this chair the flood of onlookers had subsided to the point where I would look forward to the nurse coming so I could get my feet moved or my pillows repositioned. I relayed my concern of my painful shoulder to the nurse who would get the doctor to have a look at it during his next rounds. When Dr Yeoman came he had not been informed so I explained what had happened. Without looking closely at me he announced that I was fine and there was nothing to worry about. Try telling that to my shoulder I thought as I asked if I could be x-rayed. “That won’t be necessary” I was informed as if they were to deny responsibility for my new injury. Saturday passed without further incident as I sat in my chair sleeping for short periods and being woken often. By Saturday lunchtime I was given some watery soup which is the first nourishment id had for two and a half days. While I was sipping the soup which was being held for me by the nurse I noticed that the numbness from my lips and cheeks had disappeared and I could now speak without slurring. My next breathing test would also show that my breathing had improved marginally. This was great news I thought as I reinforced the fact that it was only December 11 and already I was recovering. Only one plasma transfer and I was improving. I would yet be home for Christmas as I had another 3 plasma exchanges to go. I couldn’t imagine how much my improvement there would be over the next few days as my treatments were completed. Surely I was going to be alright now and my spirits were lifted. My immediate thoughts were of my family and what great news I had to convey to them. Although no further improvements would come that day I was very sure in my mind that they would come flooding back.

Saturday afternoon and a nurse, who I didn’t recognise appeared with a portable telephone and gestured that I should take it. She was not impressed with the fact that she would need to stand there and hold it for me but she reluctantly stood there while I spoke. It was my wife on the phone who had rang many times but could not speak to me before nor would they take messages for me. With 4 young children and eyesight problems of her own my wife was in no position to be able to bring the kids to Melbourne to see me. We spoke for some time and I could see this nurse becoming agitated. I did however convey my improvement and also the fact that I now had a very painful shoulder. My children were at home and lined up behind my wife to talk with their dad but the nurse could not stay longer and I could not speak with them. I was extremely disappointed as my children are too young to understand that dad can’t talk with them. Saturday evening and it had been almost 3 days and I had not asked for any assistance to urinate nor did I have any sensation that I needed to go. These facts must have been noted by someone as a hospital trolley was now brought to my chair and two nurses arrived shortly afterwards. "Do you know what a catheter is" one nurse asked, they waited for some people who would again lift me. It was explained that my bladder had shut down and was not functioning so they would need to install a catheter and bag to drain the fluids from my bladder. The procedure was carried out in an enclosed room by the nurses and I was only gone from my chair for less than an hour. To my surprise a first bag was now full with urine and a second needed to be changed before I was returned to my chair. Each time I was lifted now I made sure to explain the pain in my shoulder. Although it usually hurt quite badly I don’t think that any further damage was being done. I now had no fears of needing to go to the toilet or disgracing myself but I was very worried about this new problem. A major organ like my bladder shut down was not what I needed. Another problem to be solved before I went home before Christmas. I had not long ago spoken to my wife of my improvements and now this. But then I thought of my next treatment of plasma exchange to be performed in the morning and I was once again hopeful.

Saturday night was now quite hectic in intensive care as motor accident victims and people suffering other serious complaints were arriving with regular monotony. It wasn’t long before my feet were again swelling further and aching and again I was asking people I didn’t know to stretch out my legs for the small relief it would bring. The nurse now came to check my breathing and it had improved again albeit very slightly. It was now decided that I would only require testing every two hours now. What great news, I would now surely avoid that dreaded life support system. The thought of that tube being put down my neck was not an appealing one at all. I was now able to sleep a little, and the two hour tests were a blessing as I could get the nurse to stretch my legs as well. Sunday morning came and I was lifted onto the emergency trolley where I waited to be connected to the machine. After spending a day and a half in the sitting position I found it very painful lying down on this hard trolley. The machine operator soon arrived and began hooking me up to the machine. As she did we discussed the benefits of my first treatment. I was looking forward to this session as it may bring further improvements. I was grateful for the relief

I was feeling from my feet but my back was giving me terrible shooting pains. I was now connected and noticed the clock at 8.45a.m. It would be almost 2p.m. when I finished and I would have no lunch again today. Social workers, therapists and different students again began to arrive to see my condition. This time I was not as overawed as I received them and spoke to each in turn. I could speak as I wanted just as long as I remained still and didn’t get upset. At about 9.30a.m. Dr Yeoman arrived on his rounds and spoke as he tested my reflexes. He scraped the soles of my feet which really hurt and asked if I could feel it.

We discussed my improvements and I was eager to tell him of the trouble my shoulder was giving me. Although I repeatedly raised the subject it was as if he was not recognising my problem. He produced a small metal hammer to hit my knees with. As he hit my right knee he missed and hit bone . I held my breath as the pain struck and the machine stopped pumping. The operator now tried repositioning me gently this way and that until the blood flowed freely again. The operator did not have to speak to the doctor, the look said it all and he now left. Even though my back was hurting and shooting pains would run up my arms and down my legs I was quite comfortable with the process as I chatted casually to the operator only occasionally stopping to look at the clock. When the plasma was placed in readiness on top of the machine I now knew that it would be only 20 minutes to go. This was now the case and I was lifted back to my chair where I had become quite accustomed. As I sat and found people to move my feet throughout the afternoon I constantly looked for improvements and as much as I looked and as much as I tried to move there was no joy from this second treatment. It was now the 13th of December and only 12 days to be home for Christmas. I would trust the benefit from the next treatment. I would never entertain the fact that I would take longer to recover. I would come back as quickly as I went and it will all be over and placed in the very back of my memory. The remainder of Sunday passed without causing further concern and Monday morning arrived with a new vigour as it appeared many more staff were working today.

At about 8a.m. Monday morning a small rounded middle aged lady with bleached blond hair and an English accent arrived and introduced herself as Brenda. She was an on call nurses aide and would now tend to my needs such as feeding which was why she was here now. Over the following days this woman with an infectious smile and jovial personality would spend much of her time with me and we became good friends. I really needed a friend right now. Soon after breakfast a ward clerk came to visit and announced that they had found me a bed. It would be on 4 east and I would leave intensive care after my treatment tomorrow. Although I should have been pleased I had my own reservations about it. Why move me when I’ll be going home soon? I had become quite accustomed to this hallway and I could see many people walking past. But, never being in hospital before, I imagined a good wash and nice clean soft comfortable bed would give me the additional rest I would need to recover. Tuesday came and once again I was transferred onto that trolley for my treatment. This was my third plasma exchange and my most painful yet as the shooting pains from my back when I lay down were almost unbearable. After enduring for almost 5 hours I was looking forward to that comfortable bed. Just prior to my treatment ending some more people arrived with plates and equipment and announced that they would x-ray my shoulder as soon as I was free. This was a sudden change of attitude as I was being repeatedly told my shoulder was all right. After being x-rayed I was feeling better because they would now find the extent of my injury and fix it. I later learned that my wife had gone to complain to Steve Wise in Winnanbool who then rang the Arthurton to complain. Because the condition I left Winnanbool was known it was now impossible for them to try and deny responsibility further. At around 3p.m. Tuesday afternoon I was loaded onto a trolley and taken to the fourth floor where I was parked in a long corridor to wait. Apparently the person who was vacating the room where I was going had been delayed and I would now spend quite a few hours lying on that narrow uncomfortable trolley with nothing to see except the occasional nurses uniform rushing by. I was suffering intolerable pain that came and went in spasms rarely stopping long enough to gather my composure and I had nothing to look at and no-one to talk with to take my mind off my agony. END CHAPTER 4

 CHAPTER 5: BED THIRTEEN

Approximately 7.30p.m. and I could see a gentleman being taken out of a ward on an ambulance trolley escorted by two ambulance officers. Yes it was true, I would now be moved to bed 13 in ward 4 east which was the bed closest to the windows and furthest from the nurses station. I would not be lifted this time but the nurses would use a portable lifting machine. There were several nurses and orderlies to assist and with little discomfort I was placed on the bed. The curtains were pulled to enclose my cubicle and the work clothes that I had left Winnanbool the previous Thursday were finally removed. Brenda, the nurses aide, and a nurse now came and sponged me down. Although it was embarrassing for me the first wash in 6 days felt refreshing even if it was not the same as a shower. My dignity was taken from me in one foul swoop of that sponge but those work clothes must not have smelt pretty after a week. I had no clothes with me or any personal items and thus I was dressed in a hospital gown. After pulling pillows this way and that and straightening blankets I was left with Brenda who would hold a sandwich and cordial for me as I had my first light nourishment since breakfast. After Brenda left I was left to rest until about 10p.m. when two nurses arrived and announced they would roll me over. “Here we must roll you over every 2 hours so you won’t suffer bed sores” it was explained. One would push from one side and the other would pull from the other and they would work in tandem. As the nurse placed her hands on my hips and began to pull the pain was electric. I screamed in pain but they never relented until I was lying on my side. The tears of pain flooded down my cheeks as I pleaded with them to put me back on my back. They insisted that it was hospital policy and I must remain like this for 2 hours. I could not stand one more minute let alone 2 hours and I yelled my disapproval as they drew the curtains and left. After being left for what seemed like an eternity my yelling and screaming for help finally made a point as 3 angry nurses now arrived with a doctor I hadn’t seen before. He injected me for pain relief and I later learned this was morphine that was used. After much pleading and protest I managed to convince them I couldn’t lay on my side and I was rolled back. The damage was already done though and this was to be the worst and most painful day I can ever remember.

I cannot remember sleeping at all that first night but know I was injected on several occasions. Each time the nurses would come and try to turn me my pain was unbearable to the extent where eventually I refused to let anyone touch me. As I was paralysed the muscles that are not being used waste away very quickly and this is what happened to me. I was now only skin, bones and nerves and each time a hand would touch me or a leg was rolled to contact another it would activate severe electric shock type pains that were unequalled. The nurses could not understand how I was suffering. Because the nerves along my spine had been damaged I believe that I had become hyper sensitive to pain and this would not help my cause. There is so little knowledge of this disease that staff at hospitals treat you by their guidelines, which in my case causes much unnecessary pain and discomfort. When I refused nurses the right to move me it was more a case of self-preservation and it was very difficult for them to accept. I was labelled a troublemaker in those first days in bed thirteen but I wanted to get better quick and go home. Wednesday morning and it was time to be moved again for my last treatment of plasmapharesis. On previous occasions my movements would give temporary pain relief but this was no longer true. Each movement and each hand that touched me brought considerable pain and treatment or no treatment, I really didn’t want to live another day like this. I was today lifted by crane into wheelchair then as before three orderlies were waiting downstairs to lift me onto the treatment trolley. The only reason I was able to cope this time was knowing that this was my last treatment and I would recover quickly once it was completed. I forced myself to endure as I watched my torment ticking away on that hallway clock. Towards the end of my treatment there was a visit from a social worker. It was difficult to fight back my distress and speak with her, but she spoke of my family so I listened intently. I had not had visitors and it was decided that my family would not come here and see me like this. As my treatment was concluding I was thinking that the pain I was suffering now was only a flicker of the suffering I would now endure by being moved again.

Mid afternoon and I was returning to my room where people were busy re-arranging my bed. A special comfortable air mattress was placed on my bed and this was to solve my sleeping problems and guarantee I wouldn’t get bedsores. This proved to be a real winner for me and I was ever so grateful. I also found that by removing all the pillows I could lay down and get relief from my painful shoulder. I could not remember the times before that I had felt no pain and this felt terrific. Late afternoon and it was time for doctors rounds. As I now lay in relative comfort my condition was discussed and it was decided to remove the bung from my chest. Once removed it required several stitches to close the wound. It would take maybe a week to see how quickly I would come back. I was still convinced it would be sooner rather than later. Dr Yeoman then announced that there was no damage to my shoulder to be seen from x-ray. How could this be when it hurt so much? “Just a weakness thing” he explained without showing me the pictures. This was later shown to be a blatant lie when I was moved to Harrisdale. Life was improving dramatically since I got my new mattress and my roommates were now settling down and would occasionally speak with me. Even though my air mattress was designed to prevent bedsores there were those nurses who still tried to insist that I be turned in my bed causing shocking electric pains. I now decided that no-one would touch me again unnecessarily. On Thursday I could ask to get my bed raised and I could see what was going on. This made it easier to get fed also. By having a pillow placed beside my head a portable telephone could be positioned between and now I could receive my own messages. I could now talk in private to my wife and children. Prior to meal times now a large supply of pills would arrive and each day the number would increase and I had no idea what I was taking. This was a situation that I wasn’t comfortable with and I knew that I would have to address this new problem soon but for the moment tried to keep the peace. During Wednesday and Thursday night I often looked out of my window towards the bay and I could see the lights of the ugliest building I had ever seen. When

I had been in much pain and was injected with morphine I apparently told my roommates to look at my spaceship. To this day I receive cards asking when my spaceship will land again. Friday the 17th of December and I was now feeling quite disillusioned with my progress and my assortment of pills duly arrived before mealtime. I looked at the containers and there were blue ones . I had never taken those before so I asked. "They are new we thought we would try them on you" was the response. “I’m very sorry but you are not experimenting on me”, I explained. I was now curious so I asked for a description of each and every drug they were giving me.

After hearing what each drug did and what side effects they had I decided it would be safer for me to take none.

I decided I would only take 2 laxatives and I would retain the 2 hepron injections a day which were to keep my blood thin and prevent blood clotting while I was immobile. If I knew at the time that it caused bone weakness if used for extensive lengths of time then I would have refused the injections also. How dare they pump me full of these drugs that I knew nothing about. Yes once again I wasn’t the most popular patient in this place. The nurse who had brought these drugs was now getting quite angry with me and explained that all my pains would return if

I didn’t keep taking these pills. If I don’t feel excessive pain now then I have no need and I refused. A doctor was soon summoned and I explained to him that this was my body and unless they were prepared to discuss with me the medication I was on then I would not cooperate. These people have taken away my dignity, my pride, my self esteem but there is no way they will take away my right to make decisions. The doctor left after trying hard to dissuade me but seemed satisfied that I could make my own decisions. This was a major step for me because it actually restored for me a sense of independence. The nurses and doctors would always ask now if they could do this or that to me and that made me feel a little better about myself. I felt great relief when my adjacent room mate agreed totally with my stand and we began to chat and become friends. I really needed a friend in this place as I had no visitors from outside since I arrived just over a week ago. Later that Friday night a nurse arrived with a portable phone and I was surprised to find that it was my employer that was on the other end. George White had now been informed of my situation by my wife and had rung to give me encouragement. He will probably never know how much that meant to me at the time. He had sent my wages home for me, he gave me a bonus which I wasn’t entitled to and also arranged for a Christmas hamper to be sent for my children. I was choked with emotion as I had never had anyone do anything like this for me before and especially at a time when my family really needed it. After explaining my disease to him and estimating that I would be alright soon he told me that I always had my job with him. Just take your time, get well and we will see you back at work when you are ready.

A large burden was lifted from my shoulders as I now knew that my children would get some things at Christmas.

I hadn’t spoken to the kids and when my wife called later on Friday night it was only the second time that I actually got to speak with her even though she had rang many times. She always asked when I would be coming home and what my progress was. The kids need their dad for Christmas so you will have to get better quick. By this time my breathing was improving each time it was checked to the point where I only needed monitoring every four hours. However, this was the only good news I had to report. A young nurse whose name I later learned to be Charity now approached my bed and explained that it was now necessary to remove my catheter in order to give my bladder a chance to start functioning again. Even after several visits from this blond nurse I could not imagine if they were male or female but I did know that this nurse was very compassionate, dedicated and very proficient at the job. As she removed my catheter we chatted about my disease and I found this person to be very friendly. I eventually asked another nurse in confidence and I was assured Charity was in fact a girl. She offered to print out some literature from the Internet on my condition which I was very grateful for. She also got contact numbers from me so that she could contact some people so that perhaps I could have visitors. Despite my insistence on having x-rays and my refusal to take a lot of drugs this nurse was going out of her way to help me. I would be forever grateful. First thing Saturday morning and a nurse brought a bottle for me to try and use. I had no sense of fullness and no sensation that I needed to urinate but I still tried. I was still willing myself to but to no avail and I was very disappointed. My catheter was now to be put back which caused an uncomfortable pain while it was being done. Dr Dapper soon arrived on his rounds and told me it would be impossible to go anywhere until such time as they had solved my bladder problem. Does this mean I wont be home for Christmas I thought. I did not want to ask as I was now in fear of the response I may get and I was not ready for that kind of news.

Saturday afternoon as I sat up staring out the window Charity appeared with many medical research papers which she had printed out for me. I was really lucky to have this new friend and as we chatted casually I could not wait to start reading these pages. She had spoken with my mother and other friends I had in Melbourne and it was likely that now I would even get visitors. My life was looking up for the first time in over a week. As Charity left to go about her daily routine I glanced down at the first page of my notes. I was quadriplegic so I could not remove the top page to read the next. I would wait until someone chanced to pass and ask them to re-arrange my pages. In the meantime however I glanced at the first page and must have read it a dozen times. It was good to be able to read something and this subject would become of special interest to me. What is known about this disease is that it often follows a virus or gastro problem. A significant number of cases were attributed to the swine flu vaccine in 1979 in the United States. The technical things are a little difficult to follow but this is basically what happens. The human body has a blood supply containing red and white cells. The bodies white cells contain anti-bodies which act as the persons immune system or in other words are there to ward off colds and other complaints. It is the bodies defence system. With Guillain Barre Syndrome something foreign causes the anti-bodies to fail to recognise good cells from invasive ones so they begin to attack all. All the spinal nerve endings which receive messages from the brain are attacked and damaged until such time as the person is paralysed. After this is complete vital organs and the respiratory system are progressively attacked and shut down. It is also known that in many cases the disease reaches a point in some people and arrests itself. Some people have had mild cases and walked away as soon as a few weeks later. This now would not be the case for me as I was finally forced to face up to the reality of my situation as I read those pages ever vigilantly. Some of the information I was reading was not appropriate to my case and I was having difficulty understanding where I fit in with this exotic disease. There were various types and various symptoms and yet I could not relate to them. The treatment I was given and the fact that my condition peaked and stabilised was consistent with GBS but there were many questions that I couldn’t find answers too. I never had a virus or any sickness prior to falling down, just excessive weight loss. Apparently weight loss is a common symptom of immune system disorders and I had noticed the weight loss after getting sprayed. Most cases reported pins and needles or severe numbness in fingers and toes requiring medical attention but as explained earlier I was feeling fine until the end. The statistics show that this disease strikes at the rate of one person in a million per year . For me living in Winnanbool with a population of 250 I must have been the unluckiest person on earth. The way my disease progressed was like no other case I was reading about and this worried me because I wanted to find out what would happen to me next. The prognosis for a 48 year old person compared to younger people was not encouraging by the statistics either. By Sunday lunch time I had read all these pages many times over and although I understood much more than before

I needed to know that I fell into at least one of those categories. Brenda was still slowly feeding my lunch when a nurse appeared and announced that I had visitors. I would rather entertain visitors than try to eat now and Brenda understood and left. Soon an old lady appeared and I quickly recognised as my mother accompanied by my older brother. We were never a close family and I hadn’t seen my mother in more than 8 years even though we talk on the phone. My older brother and I had never got on well and I thanked him for bringing mum in. He grumbled something and left citing that he would wait outside .

When I faced my mother I could see the distraught look on her face as I tried to assure her that I was over the worst and would recover soon. I at once new she didn’t believe me as I watched the tears swell in her eyes. It was a very emotional visit and it had taken something like this to bring us together again. My mother asked if I needed anything and although I was hesitant I could not refuse her offer as I had nothing of my own here. I asked if I could have some basic items such as razor blades toothbrush and toothpaste. After a rather long visit where we recalled the past and I was filled in on what all my brothers and sisters were doing my mother left indicating that she would return in a few days if she could get a lift. When she left I felt a real emptiness as if I was alone. I could always see the other patients with regular visitors and would always be envious of them. But today I was proud that I had my own visitor. During the nights I would wake up and be convinced that I was sleeping in a tent in the desert or I would look out my window and imagine I was sleeping under the stars. As I would see the torchlight appear at my tent I would get frightened until I recognised the face of a familiar nurse. Usually it was only a nurse coming to monitor my breathing. Each time I used the spirometer I would try to surpass my previous result and I was now doing that quite regularly. As the time passed and the effects of the drugs I was taking before wore off things slowly returned to normal as far as my perceptions were concerned.

As the effects of the multitude of drugs I was given wore off I was pleased to find very little change to the pain levels I was feeling. This special air mattress was certainly the answer to my problems. However each time I was touched or rolled to be sponged down the electric shock pains always drew tears to my eyes as I tried to fight the pains. But I would now never complain of excessive pain as I was determined to stay away from all those pills.

I also didn’t want to let them know that they were right and I needed those drugs. Monday morning came and it was again time for the doctors rounds. There was always two or three doctors who would arrive and they always tested my reflexes even though they know reflexes are lost forever with my condition. Today they ordered my catheter out again and introduced me to the registrar of the Harrisdale hospital. I still know him only as Namook and he was there to convince me to come to his hospital where they had extensive experience with cases like mine. I knew the answer now but I would still ask the question. “Will I be able to be home with my family for Christmas”. I was now given the answer I didn’t really want to hear and I would now have to convey that message home. Namook explained that there was a waiting list of some four hundred people at Harrisdale but as soon as I was considered to be in a stable condition here at the Arthurton then they would give me the first available bed. I need not give him an answer yet but

I would have to let him know in a few days. It disturbed me that this man would come to ask if I would go to his hospital. I have always been suspicious of salesmen and this man was exactly that. Why would they give me priority over all those other people. I couldn’t really understand his motives. Namook now left and I was left with my two neurologists. They explained to me that it would be necessary for me to stay in hospital for three months. I did not want to believe it. If it was going to be that long why couldn’t I go back to Bunker Hill where I could be visited by my family. They were also trying to convince me that I should go to Harrisdale but I would not commit just yet. This was getting hard for me because Harrisdale was further away from home and my recovery would now take three months. Dr Yeoman now mentioned to Dr Dapper that in some cases it was beneficial for them to undergo a second course of plasmapharesis. I had been reading the pages of text which specifically stated that further treatments were of no benefit. Dr Dapper asked for him to produce his research notes and I asked also if I may read them. The thought of having that bung being put back into my chest sent shivers down my spine as I remembered the pain so distinctly. Fortunately the research notes were never produced and I was to be spared this next round of torment. I often wondered if these experts knew what exactly was wrong with me and how they would treat me.

Renee was the nurse on duty today who would be looking after me and that made me feel better because she was very attentive and nothing was too much trouble for her. After removing my catheter she announced that she would like to try and give me a bath if I felt up to it. After eleven days with only the occasional sponge I quickly answered in the affirmative. It would be worth the pain just to feel clean and fresh after all this time. Laying in bed sweating my hair felt like mud and areas of my joints always felt sweaty and clammy. When Brenda arrived at work she would help and they would use a hoist and sling and lower me into the water. The water around my body felt great and I layed back as my hair was thoroughly washed. The shoulder that I was told was not injured hurt me tremendously but the pain would go later and I would soon be clean. It took much energy out of me to be moved but I was returned to my bed and I felt good and soon fell asleep. Tuesday morning and my catheter was replaced again as my bladder refused to function. Each time this would happen I would feel very dejected. Every body part was then checked for any signs of movement. At last I heard doctor Yeoman say "yes, did you see that" as he detected the faintest flicker occurring in the small finger of my left hand. He seemed so excited that I was now also getting carried away with my progress. Unfortunately this was the only sign that I was to get from my stay in this hospital. An occupational therapist was now summoned and for one hour a day she would move every joint in my body to try and keep them flexible ready for any movement. If this is not done then the joints will calcify and will cause major problems later on. A physiotherapist also came to my bedside and she would now stand me each day using a tilt table. I would be strapped onto this trolley then progressively raised towards vertical. This would make me feel faint as the blood surged to my head, the weight of my body would be transferred through my legs and feet which was very painful but I would build up my tolerance. As I was able to last 15 minutes one day I was feeling very proud of my achievement. But the reality of the situation was that I could not move at all.

Tuesday evening and my mother returned with the items I requested and I have never been so grateful for any other gift in my lifetime as these few personal items. Apart from my good luck dolphin these were the only things that now mattered to me. I would now have my personal things to comb my hair and shave and brush my teeth. This now meant a lot to me. My older brother this time did not escort my mother in but preferred to wait outside. I have never worried about his decision nor have I tried to understand. My mother would not visit me again in this hospital because she always relied on someone to bring her. Tuesday evening and the phone was brought to me and it was no surprise to me that it was my wife. I waited for the appropriate question to come and now I must give the family the bad news. I would not be home for Christmas as I was originally promised and I would now be in hospital for three months. The news was a shock to her as the children were already having trouble coming to terms with it. “Dad isn’t ever coming home” was an angry response from my eldest daughter on one occasion. I now told her that I should stay the three months and I would come home as good as new. Even better after all this servicing. As I spoke to the children individually I asked each one to be brave and help their mother and told them that I would never miss another Christmas with them. Cheryl, while she could manage her house duties well was almost illiterate having great trouble to write the most simple things. She can barely read also so it was now an impossible task for her to try and manage the household finances. I was now trying to give her instructions as to what bills to pay, what money she should take from our account and what priorities were to be given. I would always have to give instructions several times and I was never convinced that she understood me. But I did manage to keep some sort of control from my hospital bed which in fact kept my mind active.

Wednesday morning and I would now ask Brenda if I could have a shave and get my teeth brushed. She was worried about cutting me but I was not worried and she nervously got the job done. When she brushed my teeth which hadn’t been done in nearly two weeks my gums and mouth bled furiously which I had cause to apologise for. But Brenda was very warm and understanding and she seemed undaunted as she completed the task. I was most appreciative and I almost felt human again. An occupational therapist arrived this morning with a tape deck and head phones and I could now listen to novels being read on tape. Although I enjoyed it I sometimes fell asleep and missed parts of the story or my bedmate would be chatting to me and I couldn’t hear either very well. When a tape was finished it was uncomfortable to have headphones still connected. Even my bedmates were commenting how much brighter I was looking as we now left our dividing curtains open so that we could see and talk throughout the day. Thursday morning in the early hours I was awoken by the sharpest of pains I had ever felt in my groin. The pain would begin to subside then escalate to new heights of torture. After some time trying to cope I finally could stand no more and I found myself screaming for help. I was asked to wait and the few minutes that I did saw me crying in pain. When I explained my problem the catheter was removed, it had apparently got blocked and that caused the extreme pain. After reading the notes the nurse decided to leave the catheter out and positioned a urine bottle just in case.

Christmas weekend was almost upon us now and those patients who could travel were being given their opportunity to go home. Wards were being closed down and rooms were being consolidated for there would be minimum staff levels over Christmas. It was a very emotional time for me as I watched many patients leave here to re-join their loved ones. Each time someone would leave I would feel left behind and I would pray that my children and family could enjoy their Christmas without me. After breakfast had been fed to me and the doctors passed for only a brief visit this morning I could feel a sensation in my groin that I had not felt on previous occasions. I now gave this feeling my full attention and tried and tried to make the urine flow. Eventually and bit by bit I was emptying and in my excitement I hadn’t noticed the bottle slip out of position and only half went into the bottle. I thought I was going to get yelled at but " well done" was the response from the nurse. After I was cleaned up it was now necessary for me to have a bladder scan to ensure that I was emptying fully. Twice more during the day I would use the bottle and each time it was getting a little easier and each time I would empty the bladder a little better. I would now never have that catheter again and those painful experiences were now gone. I couldn’t wait to tell my wife that my bladder was now working. If this had happened earlier could I have gone home I asked myself. But now having a bladder that worked and using a bottle would have its own new problems for me as a quadriplegic which I was soon to find out. Near the end of afternoon shift I asked for a bottle and the nurse who was in charge came and placed my bottle. It did not feel right and I asked her to check. "I've been a nurse for many years I know what I’m doing" was the response. I did not have time to argue and as I released I could feel the wetness as it surrounded my body. When the nurse returned she could see that I was wet but took the bottle and pulled the wet sheet back over me.

I summoned her to return but she said I would have to wait for the night shift. I could not believe she could leave me like this and from that moment I could not and would not ask this nurse for any further help.

Friday morning came and I was still seething from the events of the night before. No breakfast would arrive for me this morning and I thought it a little strange but I wasn’t overly concerned. Soon an ambulance trolley arrived at the end of my bed accompanied by two orderlies. After chatting to the day nurses they approached my bed. "Are you William Simmons " one asked as he read from a chart. "What’s happening" I asked because I new nothing of any scheduled treatment. Perhaps they were going to repair my troublesome shoulder at last was my only thought of a need for these people. I was scheduled for surgery one of them explained. I would be in operating theatre in less than thirty minutes. I could not believe that nothing had been discussed with me and I told them they had better make sure before I was taken anywhere. This must be a mistake I thought as he now read the notes a little more closely. We definitely have the right person and you will undergo spinal surgery he explained. I was totally shocked and they would not take me anywhere unless I see a doctor first. He is not available so you will have to come with us now. Charity was the day nurse today and I pleaded with her to ring my doctor which she agreed to do. It was explained to her that I would have a spinal tap to look at what fluids along my spine would tell them about why my bladder wouldn’t work. I told her my bladder was now fine and was functioning normally. It was finally agreed after messages were passed back and forward not to proceed with surgery. A spinal tap is a painful procedure really designed to assist with diagnosis. After convincing me I had GBS were they not sure themselves of the condition

I was suffering.

After the fiasco with my shoulder and now this I was feeling less than impressed with the professionalism of the people looking after me. When my doctors arrived for their rounds that morning I was compelled to seek explanations as to what was going on. Why hadn’t I been consulted and if it was thought necessary who made that decision and why. If I had not refused to go would you people have cut me up for no reason. Would you then cover up as before with my shoulder. One looked at the other and it was soon apparent that I was an embarrassment to them, but no admission of any wrongdoing was forthcoming. On subsequent rounds now it was not uncommon for them to walk past my bed without the slightest acknowledgment and once again I was made to feel as though it was just me being the unco-operative troublesome patient again. I had lost my dignity, I had lost my pride and my self-esteem but I was as determined as ever to protect my basic human right to be consulted and told what was to happen to me. There would be no more rounds for a few days as this was now Christmas Eve and those who were going home for Christmas had already left. Friday evening and the nurses were more interested in putting up a few Christmas decorations rather than attending to patient needs but I think they should be excused at this time of the year. A nurse would arrive with the portable phone and I would now chat with my family. As I gave my wife the good news about my bladder it soon became apparent that she was celebrating. She had been under a great deal of pressure and a release from that tonight would be good for her I thought. I spoke to each of my children in turn to witness first hand their excitement and expectations. Christmas morning arrived and I received a Christmas card from an ex-bedmate which contained questions about the date my spaceship would take off. I looked at this card several times and would treasure the memory that I had been thought of today.

As I layed there staring at that card I could only try to imagine the joy and excitement that my children were now experiencing. This was by far the loneliest morning that I had ever had to endure and I promised myself that I would not miss another Christmas with my family. I watched in envy as other patients received their visitors and well wishers and the solitude of my situation was such that I requested my curtains closed so I would not detract from the other patients moments of happiness and laughter. Sometimes trying to sleep but mostly staring into space outside my window my trance was suddenly broken by the arrival of Brenda. She had come to feed me my Christmas lunch and I was feeling very emotional now that this woman had given part of her Christmas day to come and feed me. The roast turkey that was served was very nice compared to the usual hospital food and I really enjoyed my meal and the company that I had. Although she only stayed an hour it was very pleasant and we exchanged pleasantries before she left to enjoy her Christmas at home. Half sitting with the back of my bed raised still from lunch I was watching the sparse traffic out on our roads and felt quite contented. The nurse who had left me soaking in my urine was in charge today but it was a skeleton staff and she was gone for long periods of time. Looking out of the window in the early afternoon I noticed a shadow appear in the background and at once turned my head to find a familiar face. This was a dark skinned man of extremely solid build and a deep voce which now greeted me. He was of Maori descent from New Zealand and I had once been his supervisor in a warehouse for several years. During those years we became very close friends. We were both committed family men of similar age and we enjoyed many social activities together. This man was closer to me than my own two brothers and the pleasure I got from seeing him on this special day will always be remembered.

I knew this man as Tui Wright and we chatted casually for sometime before we got a mischievous idea. The nurse was away on a break and there were no sign of authority. Tui quickly went to the front entrance of the hospital and arrived with a wheelchair . He was a very strong man and needed no mechanical lifter to pick me up in my weakened state. Sliding one hand behind my back and the other under my knees he picked me up with little effort and placed me into the waiting wheelchair. He used the pillows off my bed to put down each side of me and covered me with a blanket. The other patients in my ward just watched in amazement as we now made our escape. Down the lift out the front door in a hospital wheelchair dressed only in a hospital blanket and robe and no-one had even stopped us to ask questions. Down Prospect Road to the crossing we went across the tram lines and into the park. I was hurting like hell but I would not let my good friend see that. This was very special for me as he pushed me along the winding paths under the shade of the giant elm trees that adorned the park. Contemplating the commotion that must have been occurring back at the hospital at the sight of my disappearance and we began to laugh jovially until my ribs were about to explode in pain. How could it happen that a quadriplegic could vanish from this major Melbourne hospital without any official taking any notice. What an exciting thing to happen and I was absolutely thrilled with what had just happened. As painful and uncomfortable as it was I was out of that place and I was in very good hands. I enjoyed the fresh air and the breeze on my face as we occasionally stopped to watch a game of cricket. My friend now was asking if it would be alright if he put me in the rear of his van next on a mattress next weekend . I very much doubt whether we will get away a second time but it was a nice gesture.

After spending a pleasant few hours in the park with Tui I was now feeling that sore that it was time to return to the hospital. Under the circumstances my Christmas had become a pleasant experience and eroded somewhat my longing to be home. As we made our way back towards the hospital along the rough garden paths I could only speculate as to the response I would get upon my return. We arrived on the fourth floor and as I looked at the hallway clock I knew I was late back for dinner as well. Arriving back in my room I was surprised to see that the nurse was nowhere to be seen but my evening meal was sitting on a trolley beside my bed. I had told Tui about the conditions for me in hospital and the fact that I had only one bath in some 16 days in hospital. “I’ll take you for a shower” he said “then I’ll stay and give you your dinner” he said. I had no sooner agreed when my least favourite nurse would appear and vent her anger. " What are you doing " she said as we were making our way to the shower room. "I’m taking him for a shower " my friend told her . She explained to Tui that she was in charge here and

I should eat my meal. "I would really like to have a shower first " i said as I would support my friend. But as hard as we tried to convince her the more stubborn she began and she was now insisting I eat dinner. "I had two pies down the street and half a dozen beers in the hotel so I’m not hungry" I said to her because I was not going to let her stand over me. Soon two orderlies and a security guard arrived who were not impressed that they were called to look for me all afternoon and they took the wheelchair from my friends hands. They used a lifting machine and sling and put me back into my bed with little cooperation from me. I didn’t get my shower and I did not eat my dinner that evening even though the fresh air had made me feel quite hungry. The nurse having got her way now decided to stand over my bed and lecture me. I wasn’t interested in listening to what she had to say and I made it quite clear that she would not touch me again while I was in this hospital. Each time she came for breathing checks or bladder scans I would usher her away until she panicked and rang her superiors. Things should never have escalated like this but I have never ever regretted my actions that day toward that particular nurse.

The night shift nurses arrived and after hand over from the afternoon nurse I was swamped with attention. I had never had a problem with the nurses that worked the graveyard shift and they quickly did my breathing tests, blood pressure, temperature and a little later my bladder scan all with little fuss. They seemed quite amused by my days events and arranged for me to have an early morning bath before the day shift would arrive. Sleep came easy that night and when I woke my bath was ready for me as promised. Feeling nice and clean and refreshed Sunday was to be a very uneventful day apart from the roasting I received when the doctors walked their rounds. Attack was my best form of defence I thought as I told them of their mistreatment of me. I explained that I would have no hesitation doing the same again given the slightest opportunity. I now thought it an opportune time to ask if I could spend a whole day out with my friends. I was still on the seriously ill list and my request was met with complete disdain. They would keep a close eye on me if my friends would come now and chances of a repeat of yesterday were now very remote. By Wednesday my breathing had returned to normal and my bladder was emptying totally so that these tests were only necessary once a day now. That allowed me to sleep for longer periods and I was less inclined to fall asleep during daylight hours. The doctors arrived this morning to inform me that they considered my condition now to be stable and not life threatening. I was now in their opinion ready to move to Harrisdale as soon as a bed became available.

Asking what was the likely time of my move it was considered to be after the new year but could be as early as New Years Eve. Thinking about things a little I imagined that I would like to stay here until after the New Year. I had a great position I thought to watch any fireworks display from my window and it would be better to see the New Year in with people I had at least known. Times were very quiet after Christmas as my physiotherapist and occupational therapist were on extended leave. Mostly I had my bed inclined and stared out that window to the world outside. Friday soon came and the anticipation of my night time entertainment came to a sudden end as two ambulance officers arrived with a trolley and announced that I was going to Harrisdale to start my rehabilitation. It would have been nice to have been told as now my family and friends had no time to be notified. What possible benefit could be gained by moving on New Years Eve. However this was the specialist place that new all about my disease and now things would progres