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-chest 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.
The experience of pain is totally personal. Only words can describe the pain we feel and what it does to us physically and emotionally. However, words conjure up different things to different people, depending on their past experiences and their interpretation of these words. There are many factors that influence our response to pain. Stress makes us less tolerant of any situation, as does lack of sleep. One’s state of mind plays a significant role as well. Anxiety and depression also lower the level of pain tolerance.
I decided to find out about pain management clinics and to discover what they had to offer. I had obtained a referral to one from my local doctor and went to my first appointment with this specialist. I learnt that there was a pain personality and that most people suffering from chronic pain take on these traits. These patients are both obsessive and perfectionists. The fact that they cannot control their pain is intolerable to them and makes them feel imperfect. This results in a loss of self esteem and deepening depression. However, some of these people do enjoy their poor health and either use this to make their friends and family feel guilty or as an excuse to avoid any activity they dislike. Chronic pain patients can also become addicted to their pain. As I had been experiencing the central nerve pain for over six months, the specialist assessed me as suffering from depression and chronic pain syndrome.
He explained that the way one sees or perceives pain can be changed by the use of various medications and special techniques. Understanding the pain and learning skills to cope, control and tolerate it, helps overcome the feelings of loss of power that can develop. Focusing and concentrating on other activities can distract the mind from the pain experience. This therefore, raises the pain tolerance level, giving one back a sense of control. Medication in the form of tranquilizers, muscle relaxants, sleeping pills, stimulants, anti-depressants, mood elevators as well as pain killers from mild to the heavier narcotics such as morphine, all have a part to play in the management of pain.
Addiction and tolerance often follow the use of the narcotics in the treatment of chronic pain. The receptor cells in the nervous system readily take up the external narcotics. The body uses these in preference over its own natural painkillers, the endorphins. Other treatment modalities under the umbrella of pain management include acupuncture, hypnotherapy, relaxation and meditation as well as group therapy with a psychologist. It was good to know all this research had been done to investigate pain and its accumulated side affects and I was willing to follow the advice of this learned man.
He explained that he would start me on medication and told me that the central nerve pain I was experiencing was very difficult to shift. The area of the bleed in my brain was the very area where pain was registered and the slightest injury to these specific and particular nerve cells caused the pain. He prescribed a number of drugs for me to take. I was to introduce them one at a time to assess tolerance and to be sure that the side effects did not outweigh their benefits.
Chemistry
The first medication I was given was Symmetrol, an anti-depressant drug, which left me feeling very vague and drowsy, but did not reduce the pain I was experiencing. Next, I was given Luvox (Fluvoxamine Maleate), which is used for treating Obsessive Compulsive disorder and severe depression. It was suggested that I take one 100mg tablet per day, but the initial dose was to be half a tablet. I did exactly as directed, but the next morning I could not open my eyes or even manage to speak. I thought at first I was having another stroke, but this sensation of paralysis affected both sides of me. I felt so drugged I could not get out of bed, so stayed where I was, eyes closed until the following morning. Concerned, I called my pharmacist and was informed it was an allergic reaction to the drug. I contacted the doctor who could not believe the gross side effects; stating it was as though I had overdosed on two full tablets.
The third prescription I was given was for Endone, a synthetic Morphine-like drug. This was successful in reducing the intensity of the pain; however, it was effective for a period of three hours only, and I was allowed just two tablets per day. This meant that there were very large gaps in the pain management plan. The violent reaction to the Luvox, and the effects of these chemicals on my mind and system were of great concern. There surely must be a safer and less invasive way of controlling pain.
Dragonet
I remember visiting my good friend Peter, a hypnotherapist, when I had severe nerve pain in my left arm and shoulder some years earlier. This was a result of the neck surgery I had after my work accident. I decided it was time to visit Peter again as his treatment had been successful, and I had enjoyed a positive outcome.
On my first visit to Peter in 1996, he encouraged me to imagine this pain as an object, to give it form, shape, substance and colour. Immediately an image of a large chunky starfish formed in my mind. It was mud coloured and rough textured, like thick bark. Its stubby short arms clung tightly onto my left shoulder, its body pressing heavily into my neck. I could feel it drawing out my vitality through the many rows of suckers on its underside.
Peter was happy with this imagery and we started the hypnotherapy, he leading me into a meditation. He had me imagine myself walking along a beautiful beach listening to the sounds of the surf and the call of the sea gulls. I saw the waves breaking on the sand and the shapes and patterns of the water’s edge as it ebbed and flowed. He suggested that I remove the starfish from its position on my neck and place it on the sand above the high water line. Then I continued my walk, enjoying every sensation, the smell of the salt, the texture of the sand beneath my toes, the colour of the sky and ever changing shades of the ocean. Occasionally I returned to the starfish and noted its change. It gradually became less fleshy and lighter in colour until it was dry and brittle, blending into the surrounding sand. On my last trip back to view it, I noticed it had lost its shape and form and had dissolved into grains of sand.
These sessions with Peter were very successful, and I began to experience less pain. However, I realised that there was still something lurking in the dark at the back of my mind. I recognized that this thing was fear. Fear of the pain, and fear that the pain would return. I used Peter’s techniques to solve this problem. Find an image to describe this emotion or state, and give it shape and form. A huge fire-eating dragon manifested itself in my mind’s eye. Working on this image by myself I was able to recognize that fear is the irrational extension of caution. Without being cautious we would forever be in danger, but when it becomes unrestrained, it controls us.
Over a few days, I reduced my fear dragon to a tiny little dragon about two centimetres tall. He is no longer threatening, instead he is rather cute. With big bug eyes, tiny wings and his tail wrapped around his chubby tummy, he sits like a cat on top of a large rock. Each day I face him and laugh in his face, or stroke his scales or just flick him off his perch with my little finger. I reported all this back to Peter, at my next visit, and he kept smiling and nodding his head. When I had finished my story, he reached over to the shelf above his desk and lifted down a tiny carved dragon! I knew I had to have my own as well and after a prolonged search found my own fear dragon. He is made of pewter, and is just a baby with his large tummy and tiny wings. I call him Caution and he is now part of my life, although just a little part.
Riverside
I decided to see if Peter and hypnotherapy could in fact help me with this unrelenting burning pain. Peter started the session by asking me to describe the pain and I explained my image to him. A petrol tanker, with its tap open was continuously pouring petrol over the whole of my right side and then someone had tossed a lighted match onto me. I was continually being burnt. It was hard to believe when I looked at my right side that it was not black and blistered, but still pink and normal.
Then I was asked to think about a pleasant peaceful place and chose the banks of the Yarra River at Warburton. We started the meditation. This time my journey was beside the river, taking in the smells of the gum trees and other plants. I heard the sounds of the birds warbling, the wind rustling through the leaves of the eucalypts and the blue wattles. And in the background the sound of the ever present babbling of the stream of water as it meandered its way over the stones. Peter suggested that I place my hand and foot into the water and feel the coolness on my damaged side. I had to imagine the water and its healing powers dispersing the pain, and sweeping it away down the river and out to the ocean. He encouraged me to follow the path of the river upstream. When I reached its source in the high mountains I was to bury the dreadful acid burn in the snow. In this frozen place it would not harm anyone and I no longer needed to carry it.
When the session finished, Peter sorted through his collection of small stones and handed me a highly polished black stone, smooth and warm to the touch, with a flaw down one side. I accepted it enthusiastically. Yes, it had a flawed side, just like I did. It was not perfect, but it was beautiful. Now it is my responsibility to remember these images and my flawed memento is my link and my reminder. This stone had been rough, with sharp edges when it first went into the river. Over time the water had not only washed it clean, but had polished it brightly and smoothed its corners. Now it was something to be admired.
Lost in space
It continually amazes me how our brains function. How can something so incredible and so sophisticated in its processes still be unable to see its own inconsistencies. I have often tried to point out to my brain that it holds two opposing and contradictory statements and has not successfully resolved this issue. There is one little group of cells whose job can be likened to those fire watchers who spend their days on the top of the fire watch towers ready to report the first sighting of a bushfire. My brain cells keep calling out a warning that my right side is on fire. Meanwhile there is another group of cells close by who continually chant this mantra, ‘There is no right, we’re all that’s left’ Neither group is prepared to acknowledge the other’s existence and I am stuck in the middle of this farce.
I am reminded of that terrible television show of the seventies, Lost In Space with the ineffectual robot flapping its vacuum cleaner hose appendages while its mechanical voice repeated over and over, ‘warning, warning’ and Dr. Smith ran around like a headless chook. Meanwhile the Robinson family took little if any notice of these two and calmly continued on with the business at hand.
I do acknowledge the work of the fire sentry cells and check out their information. I thank them for their steadfastness in continuing to function. However, I would really like them to take some time off and have a break and give me one too. I try shouting out to the other group that I do have a right side and if the cells next to you can recognize it, why can’t you? They are so busy wallowing in their grief and loss they can neither see nor hear what is going on around them. I feel their pain, I share their pain but I really would like them to have some closure, particularly as their anguish is not based on reality.
I still need to concentrate every day and think out each action rather than take them for granted. It certainly is mind over matter – my mind and my thought processes controlling the grey matter of my brain. If I left this organisation to my brain alone my life and movements would be a mess.
My mind is always active calculating my sense of balance when I walk. When someone grabs my arm to support themselves my mind goes into overdrive. I now have to add the weight of their body to mine to keep my centre of gravity balanced or we will both stumble and fall.
Since my stroke and the subsequent loss of consciousness of my right side I am left with an undefined mass of heaviness that weighs me down and anchors me to the ground. It feels as if I am bound by solid balls and iron chains that constrain my freedom to move.