I handed over the few pages of the first draft to my good friend, Bev. She returned the small manuscript to me with the comment that I was still very angry. I considered her response and remembered the outpouring of emotion that I had experienced when I first started to write. It was certainly worthwhile examining why I was angry and to whom my anger was directed. It took a while to separate the emotion from the reason. It was not the stroke that made me so upset. Although I acknowledge that there were plenty of frustrations surfacing. Frustrations at not being able to function as I had before. I knew I could overcome the annoyance of a recalcitrant right side. It was still my side and it was doing a good job despite its handicaps.
I looked deeper to discover the shadowy figure or an object that was the recipient of my anger. I had certainly appreciated the care and support of the nursing staff. I could not complain of the professional attitude and dedication of the doctors in Casualty. However, the attitude of the senior neurologist, as I perceived it was so dismissive towards me as if I was not worth considering. It may have only been a small bleed in the brain to him, but the effects were overwhelming for me. A kind word, a touch or recognition by this doctor that I was more than just a medical condition would certainly have helped. To be acknowledged that I was a person with feelings would have made all the difference.
Also I blamed this group indirectly, and perhaps unfairly, for the fact that they did not seem to know or have much interest in rehabilitation. It seemed to me that their interest lay in stroke, stroke prevention and deficits rather than identifying with the person who had experienced a stroke and their feelings about their loss of self and self image.
When I tell friends, family or acquaintances that I have had a stroke, generally their reaction is one of disbelief. ‘Well, it could not have been very serious,’ they say, ‘You look okay.’
And in my mind this response seems to diminish the great devastation that I felt or the mighty battle I have undertaken to be where I am today.
‘Yes,’ I reply, ‘my arm is not paralysed and I can walk. I may look alright but I feel all left and half lost’. Empathy is not hard to express. I did not want sympathy, but rather understanding, respect and some recognition that the stroke had happened.
Other shoes
As a therapy radiographer at Peter MacCallum Cancer Institute, I had always endeavoured to identify with our patients and their fears and concerns and worked hard to allay them. It did not take much time or effort to describe what our procedures were, to show them how we set up the treatments and explain what we were doing and why.
Knowing what was happening and not being left in the dark, both literally and physically, could help them overcome their fears, encouraging them to relax and allowing the treatment to proceed smoothly. Having to lie passively and be worked on by others gives a feeling of helplessness and loss of control. I always tried to use some scheme or to carry out a strategy to empower our patients. On their first visit, I would point out to our new client that there was a vinyl cover at the end of the bed to rest their feet on. I always suggested that they leave their shoes on whilst being treated. Patients generally felt less vulnerable if they were still wearing some of their own clothing. Wearing their shoes also made for a quicker getaway if things got hairy.
One patient of mine, a young doctor, was so bewildered and unnerved by this change of status from treater to treated, that he just lay on the bed in a frozen state. I went through my spiel of what would happen in the treatment room, what was required of him and checked all the details of the correct positioning and measurements. I then asked him to get off the bed and give me a hand to push the bed into the treatment room. The difference in his bearing from being a helpless victim wheeled into the treatment room, to a fellow team member was amazing. Walking into the room under his own steam, seeing the large x-ray machine face to face and helping me set the machine to the correct position gave him back power and control over his environment. I realised that if we treated our patients with respect and allowed them to keep their dignity and become part of the healing team that the treatment results were better than if they were kept ignorant of the proceedings.
Years earlier, whilst working at the Launceston General Hospital, a little eight year old girl came to me for some treatment. As a toddler she had been badly burnt when she pulled a saucepan of boiling water all down the front of her body. She had spent most of her life in hospital as a result of her injuries. Unfortunately the burned tissues had now turned into horrible scars called keloids, which were causing her body to curl up. Low doses of radiation to these scar tissues could perhaps reduce their growth, or was used as a precursor to surgically removing the keloids.
I was warned that she was a very difficult patient and that I would probably have to tie her down to the bed to give her the treatment. My first step on hearing this news was to clear my appointment book for that morning. The nursing sister delivered her charge to me, wished me luck and disappeared. For the next hour we sat on the bed, this little girl and I, playing games and reading books until I could gain her trust. Then she spoke, ‘When are you going to do the treatment?’ ‘When you are ready,’ I replied.
She thought for a while and then decided that if I didn’t hurry up with the treatment she would be late for lunch. Having let her decide, to be in charge and not a victim, I allowed her to dictate the terms and in no time I had gained her trust, her co-operation and we completed the procedure without any panic or pain.
I mention all this because I see the importance of the stroke team of professionals; the neurologists, doctors, physiotherapists, occupational therapists, speech therapists, social workers et al. accepting fully within the bounds that the patient and the patient’s family are an active part of the recovery team. It is also important that they have the opportunity to contribute to the treatment plan and have the respect of the other team members.
A stroke survivor is not just a medical condition, but a person with feelings and a life beyond the hospital walls. Recognizing the contributions that stroke survivors and their families can give in planning and carrying out the rehab. is the most important factor for the stroke team to consider as this is where the rehabilitation will be most productive.
Only one way
I keep making comparisons about how I was before that day in August 2000, and how I am now. I wish, unrealistically I know, that I could be normal again. No matter what happened I cannot go back. Life’s journey is a one way affair and there is no way we can purchase a return ticket. What has happened has happened and whatever the circumstances the only way is forward, flowing with the current and carrying with us the lessons we have learnt from each episode of the progression on the river of life.
I have always been confident that whatever obstacles or challenges I shall meet on my life’s path, they are surmountable, as illustrated in Michael Rosen’s children’ song We’re going on a bear hunt.
‘We’re going on a bear hunt
We’re going to catch a big one
What a beautiful day
We’re not scared
Uh oh a river
A deep cold river
We can’t go over it
We can’t go under it
Oh no, we’ve got to go through it Splishy, splashy, splishy, splashy.’
Working through the experience and emerging on the other side triumphant, although sodden, builds up our characters and instills a strong belief in ourselves that only adversity can do. Also I know without a shadow of doubt that I will not be tested beyond my endurance for the terms of the contract are binding and I have full confidence in my boss.
I see before me this elegant boardroom. The satin patina of the wooden conference table gleams in the golden light that seems to be transmitted through the walls of the room. I am seated at the table and on either side of me the heads of the various departments fill the extra seats. Opposite me sits the Big Boss and next to him on the right is the carpenter. Between us on the table lies a
sheaf of papers. We have all read this document and have made sure that everything is in order, the ‘i’s are dotted and the ‘t’s are crossed and the contract is ready to be signed by all participants. I have read the fine print and see that all is reasonable. No expectations are too unrealistic. The time frame is suitable to carry out all tasks, and there should be no impediments to prevent a successful outcome.
We all sign and stand up to leave the room. The Department Heads file out slowly, their wings gracefully unfolding behind them. The Big Boss returns to his work place and I, on exiting the room, prepare to be born.
Part 7
New faces
Gillian invited me to attend the weekly meetings of the Croydon Stroke Support Group, so that I could meet other survivors and share in the camaraderie and companionship that was generated there. I was more excited than apprehensive to meet the members of this group. On arriving at the hall, I found about twenty five to thirty people seated around some tables having morning tea. There was a spot beside Gillian, and I joined her there, unaware of the format of the meeting and what would happen.
Gillian, as president, introduced two new members to the group; Alistair, in his early forties and myself. She asked Alistair to tell us his story and we all listened enthralled as he explained about his stroke, recovery, acceptance and his joys in his life now, particularly his membership of the Victoria Welsh Male Choir. His sense of humour as he related a few incidents that had happened to him and his cheery outlook on life had us all chuckling along with him.
Then it was my turn to speak. I was not nervous as they seemed such a friendly and supportive group with such a positive outlook on life. I briefly explained what had befallen me eleven weeks earlier and how I was still experiencing a loss of sensory perception on my right side. After our morning tea, people dispersed from the tables and many came to make themselves known to me. The first people to do so were those that shared a common thread with me. A left brain bleed involving the right side of the body and interference to the function of sensory perception.
Each week when I attended the stroke meeting, I had the opportunity to become acquainted with more of the members and could delight in them and their personalities. Kevin, with his wicked sense of humour, kept me laughing. One has to be on the ball when he is in earshot as his witty remarks explode from him like shotgun pellets. He might not be able to win the hundred metre dash, but he is always the first to make a joke, or comment on a situation before the rest of us have had time to even begin to think of a reply.
Karen, just a few years older than our eldest daughter, has an infectious laugh. Her sparkling eyes light up and twinkle brightly at just the mention of a night out on the town, or a Karaoke machine at the local club. At times I feel old enough to be her mother, but at other times young enough to be a co-conspirator in some crazy venture.
Good companions
The Stroke Support Group has become my second family. The love and support that is generated by every member is incredible. Here is a place, an environment, where we are all accepted for who we are and not judged by what we cannot do. There is always patience shown for those struggling to find the right word to express themselves. A helping hand is always there if it is needed, but not enforced. Encouragement is freely given to allow people to be independent. Each of us can contribute to the group in what ever way is available to us, and we all gain a sense of self worth at our achievements. Those who can, use two hands to carry the cups of tea from the kitchen to the tables. The one handed ones like me do also, it just takes us twice as long.
I have found the most wonderful friends in this group who have helped me along the way, and my life has been enriched by these friendships. One of these new friends, Nola, came up to me and introduced herself. We shared many similar deficits and exchanged our experiences about them. She asked me how I had coped with the heat, and in what way did it affect me. I had not even thought about this. I did know that since the stroke in August, I had not felt the cold and only wore a T-shirt or a short sleeved top. Nola mentioned that she had a disturbed reaction to the summer’s heat. She had discovered that because she was right side dominant, as I was, and it was her right side that was affected by the stroke, it was still this side that controlled her perception of temperature.
I was amazed at this. I had not considered that this was how we functioned. I endeavoured to interpret how my left side was feeling – was it hot? Was it not? Was it cold or just right? However, after a lifetime of listening and attending to my right side, I still cannot hear the quiet little voice on the left.
Summer heat
Nola was very interested to know how I would react to the heat and it was not long before the first days of our very long hot summer came around. Where spring and winter had been no problem, summer was a different story. If the temperature rose above 26ºC or we had increased humidity, strange things happened. The whole of my right side would burn as if it was on fire. From the tips of my fingers to my toes it felt as though I was being consumed by a blazing fire and enveloped by flames. The pain was excruciating and unrelenting and my only relief was to be in an air-conditioned building.
I followed Nola’s advice and draped myself in wet clothes or put a soaking wet face washer on my neck and let the cool water drip down over my body. On very bad days I used the Coolgardie Safe Method.
The Coolgardie Safe is a wood or metal framed cabinet for the storage of perishable food. It allows a breeze to blow through the wet hessian walls. A tray of water sits on the top of the cabinet and the top section of the hessian walls lies inside the water, allowing the walls to remain wet. This system was employed by the gold prospectors in Coolgardie, a small town just south of Kalgoorlie, in Western Australia, the centre of the goldrush of the 1890s.
My trusty Basic Physics book by Martin and Connor that I used as a schoolgirl tells me that the principle used in the safe is that during the process of evaporation of a liquid to a vapour state a pronounced cooling occurs. Latent heat, that heat energy that is absorbed during these changes of state from liquid to vapour, is abstracted from both the liquid and surroundings.
I can remember one such Coolgardie Safe from my childhood in the scullery in my grandparents’ little terrace house in Albert Park. I had always considered it rather quaint and old-fashioned. We were much more modern than that for we had a wooden ice-chest that took pride of place in our kitchen. It was a wooden cabinet and consisted of two cupboards, a smaller one on top and the larger one below. The top compartment was fully lined with galvanized steel and held a large tray. The lower compartment had a complete set of wire shelves on which to place the milk, the butter and the meat for the day and any other perishables that might go off in the warm weather.
Once a week in winter and every few days in summer the iceman cometh to refill our ice-chest with a large block of ice. We would hear the sound of his truck in the street outside and there would be a mass exodus of children from their homes as the cry would go up, ’the iceman’s coming!’
It was just like a modern Pied Piper story as we children would follow his truck as it made its many stops along our street.
‘Please may we have some ice?’ we would plead as we all crowded around the back of his truck as he opened the heavy steel doors and the cold air fanned out towards us. We would watch in fascination as this giant of a man with his long dark locks of hair and his navy singlet would grab a large block of ice with a claw-like tool and drag it towards himself. Then with a quick deft movement would toss it up onto his shoulder where he had a burlap bag already waiting to receive it. The next moment he would be off running up the nearest driveway to deposit his burden into the waiting ice-chest.
He carried in his leather pouch attached to his belt some evil looking tools. There was an ice pick to shave off the edges of the ice block so that it would fit perfectly into its new home and the three-pronged hook for grabbing the ice and moving it around. Once he had dropped the ice into the top section of the ice-che
st he would be out the door and onto the next delivery before his precious cargo had a chance to melt.
On hot days, Samson, for that was the name of our iceman, would use his large pick and chip off chunks of ice. He would then give them to us to hold in our hands and suck these frozen spires until our hands were red with frostbite and our mouths and tongues were numb with cold. There was nothing better on a summer’s day than to hold these fractured crystals and taste the cool water as they melted away in our hands. It was not until I turned sixteen that my parents purchased our first refrigerator and the iceman disappeared permanently from our street, never to be seen again.
However, back in the present, I constructed my own cooling system. I would drape my body in wet sheets or towels and sit in front of an electric fan. The sensation on my skin as the evaporation, and hence cooling took place was so irritating that I had to concentrate on this new feeling and not give so much attention to the causalgia, the burning heat nerve pain, that I was experiencing. Diversion tactics, I was told are quite effective in distracting one’s mind from the chronic pain, although this one was not in the least pleasant. Trying to overload the brain with so much sensation till it would shut down was not very effective. I began counting the days till summer would be over and the cool of autumn would give some relief to my burning flesh. However, summer took a long, long time to pass and I needed more than cold towels to keep me sane.
Crime and punishment
Now was the time to investigate what else was available for pain control and its management. We have all experienced pain at some time, but what is pain?
My trusty dictionary describes it as an unpleasant sensory and emotional experience associated with actual or potential tissue damage or distress. Pain causes suffering and was seen by the Romans as a punishment. The word is derived form the Latin poena, meaning ‘penalty’. I knock my finger and I feel pain. I lose a dear friend and I hurt and this also is pain. Pain has two aspects to its dimension. Firstly, the physical injury or blow to our pride and secondly our emotional response to such an event. This response is dependent on our cultural upbringing and social values. For example those with a British tradition are well aware of keeping a stiff upper lip even if it is hovering above a weak trembling chin. Keeping silent was the ideal. Expressing how one felt about pain was not socially accepted and should be avoided at all costs.
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