‘Death is nothing at all.
I have only slipped away into the next room.
I am I, and you are you.
Whatever we were to each other that we are still.
Call me by my old familiar name.
Speak to me in the easy way which you always used to Put no difference in your tone.
Wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together.
Pray, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without effect, without the trace of a shadow on it.
Life means all that it ever meant.
It is the same as it ever was, there is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you, for an interval,
Somewhere, very near, just around the corner.
All is well.’
Makeover
Each time I ventured out wearing a skirt or a dress instead of my customary pants or shorts, I always felt anxious. On returning home the very first task I did was to change my clothes for something more comfortable. It took some time for me to understand what was happening. The skirt prevented me from having an unobstructed view of my right foot, interfering with my ability to ensure that this limb would respond to my instructions. Without being able to see where my leg and foot were, I was likely to stumble and fall.
I also discovered that if I wore shoes that had a heel, no matter how slight they were, I was unsteady on my feet. The heel altered the position of my centre of gravity as my weight now rested on the ball of my foot and my toes. With no feedback from this area of my foot, I felt very vulnerable. Any downward slope produced the same effect and I was hard pressed not to stumble and fall. Flights of stairs with either narrow treads or extended treads produced challenges for me to overcome. I needed to see that right foot all the time to keep me safe. I found that sometimes walking diagonally down a non-standard flight of steps from upper right to lower left was the safest option. This meant that I had a continuous view of my right leg.
Sometimes vanity overtakes sense and sensibility and I need to take extra care that I do not lose my balance. High-heeled shoes or sandals and long flowing skirts are only for the rare and special occasions and only if they require little or no walking. Recently I have begun to wear some skirts and have found a style that suits me, either close fitting or hip hugging designs cut on the bias as these styles do not obstruct my sight to my leg and knee.
Team spirit
I discovered that using both hands to do a task reduced the time it took to do it, a well as encouraging my right hand to work in unison with my left hand. When I have a shower I use soap gel or hold a piece of soap in both hands. I then work both hands down my body. The right hand mimics the action of the left one and I feel less clumsy, and drop the soap less frequently.
When I have a mug of tea or coffee I always begin using my left hand only. My right hand still has the tendency to tilt and spill the hot contents over me. Once I have drunk some of my drink and the level is lower, I use both hands to hold the mug. By the halfway mark when the mug is not so heavy and the hot liquid has cooled, I change to using my right hand so it has a chance to work as well. I always endeavour to give my right hand the opportunity to be as useful as my left hand.
Twister
I became a volunteer in a research program for stroke recovery at the physiotherapy department at Melbourne University. It was the first time that I fitted all the required criteria for a study. Kim, the physiotherapist undertaking this research was a charming Canadian now living in Melbourne.
I joined her team of stroke survivors and carried out a series of tasks that she set us, undoing and redoing pieces of equipment. Knobs to twist, bolts to unscrew, and balls to pick up and replace, were designed to show how dexterous we were with both our damaged and normal sides. We went through the procedures, the first time to familiarize ourselves with the given tasks, and then twice more, while Kim timed our responses. We began to talk about Canada, USA and thalamic pain.
At the follow-up appointment I brought along my photographs of my trip to Utah, USA, and also some of a previous holiday in Canada. We spent some time looking through these and discussing them. Kim had been able to find in the university library some research papers on central nerve pain and particularly, nerve pain defined as thalamic pain. She willingly handed them over.
It was fascinating and somewhat of a relief to be able to identify with the others who had shared this unique form of pain. Historically, central nerve pain was first described by Grieff in 1883 and identified as reissende Schmertzer, or tearing pain, in a patient who like me had a bleed in the thalamus. In 1906, Dejeurine and Roussey produced the first detailed description of thalamic pain syndrome in the study of six patients. They characterised the pain caused by a haemorrhage in the thalamus as:
slight hemiplegia,
disturbances of superficial and deep sensibility, hemiataxia and hemiastereognosia, intolerable, persistent and paroxysmal pain, choreoartheroid movements.
Well, if I could only understand all these large words, I could make some sense of it.
I remembered a conversation I had with my grandfather when I was eleven or twelve years of age. He asked me how I was enjoying school and which were my favourite subjects. He shared with me that he had enjoyed Sloyd and Euclid. But when he was at school in the late 1870s, his favourite subject was Derivatives. I knew that Sloyd was a woodworking class but was unaware then that it was a system of manual training for children that was originally developed in Sweden. Euclid was the name of the great geometrist of Alexandra in 300 BC. I was familiar with many of his principles and theorems that we had been taught in our geometry classes. Euclid was the original name given to the subject that we now call Geometry.
But a whole subject called Derivatives had me beaten and I had to ask my grandfather what he had studied in this subject. He explained that it was the study of English words and how they had been derived from Latin, Greek, Old English and Old French. He was amazed that I did not have it as a separate subject at my school. I explained to him that we covered this as part of our English class. However it did not seem to rate as highly as it did in his day.
Sleuthing
So using the skills of this now defunct subject I will now endeavour to make my grandfather proud of me by solving the mystery of these strange words. Allow me a few minutes to adjust my deerstalker hat, courtesy of Sherlock Holmes, find my dictionaries and I shall see if I can get to the bottom of this matter. The first thing I discovered was that all these words came from the Greek language. I do not know why it is so but I do know that it is the rule that medical conditions are always named from the Greek. Presumably the ancient Greeks were more skilled and more interested in medical matters than the ancient Romans who were perhaps too busy staging wars or orgies to worry about diseases.
hemiplegia – hemi means half and plegia, paralysis, hence half paralysis.
hemiataxia – ataxia means loss of muscle control.
hemiastereognosia – a means not, stereo means solid or three dimensional, and gnosia means knowledge, therefore this word means lack of knowledge of three dimensional objects when perceived through that half of the body. paroxysmal – meaning sharp or sudden.
choreoartheroid – choreo, meaning movement or dance, artheroid, of the joints, hence jerky or strange joint movements.
Many descriptions of the pain syndrome were published in the 1920s and demonstrated that the pain can vary considerably from one patient to another, and can be experienced as mild to excruciating.
The patients described the pain as:
‘crushed feelings, scalding sensations, as if boiling water was being poured down the arm, soreness as if the leg was bursting, something crawling under the skin, as if the painful area was covered with ulcers, as if a log of wood was
hanging from the shoulder, as if little pins were sticking into the fingers, as if knives heated in Hell’s hottest corner were tearing me to pieces.’
As I read all these descriptions, I nodded in agreement. I could identify with all these pains and sensations. Finally, I knew for certain that I was neither mad nor alone. Now I had a link to these shadowy people from the past. We all had shared the experience of thalamic pain and its bizarre manifestations. People who have had a stroke in the thalamus are the ones most likely to experience central nerve pain. Most patients with central nerve pain have had sensory abnormalities and the dominating features have been a heightened sensitivity to temperature and pain. I was indeed the classic thalamic stroke survivor.
I now had all the information to understand what had befallen me as well as all the complexities of the condition. My disappointment was in discovering that the pain is permanent and although some treatment is available it generally is only effective in reducing the intensity of the pain and not eliminating it.
The most common treatment available is the use of the anti-epilectic drugs like Tegretol, Dilantin, and Epilim. I had been prescribed Tegretol to relieve constant nerve pain in my left shoulder years earlier. After four weeks on this medication, I began to feel ill and blood tests revealed that I had serious liver damage as a result of this drug. It took six months to repair the damage, and I did not want a repeat performance.
Reality bites
With the knowledge that thalamic pain is permanent and that the damage done to those specialised cells in the thalamus is irreversible, I now knew that this was as good as it gets. No matter how much I wish or desire it, I am not going to recover the functions that I have lost. I sometimes think that I will wake up one morning and find that everything is back to normal. I can pick up pins, hold a needle and thread it, do up buttons with my right hand, and all the sensations on my skin feel fine, but then I realise it is all a dream and it is not going to happen.
For the rest of my life I will have these deficits. It is sobering to know this and that I must accept them and rise above this situation. My mind may not be strong enough to fully accept that this condition is final but I have faith that my soul can readily accept this challenge and not dwell on the past.
‘God give me the serenity to accept what cannot be changed.
Give me the courage to change what should be changed.
Give me the wisdom to distinguish one from the other.’
I certainly cannot change the outcome of my stroke but I can change my response to it. I no longer need to be a victim or a sufferer, but I can be a victor and a survivor. It just depends on how I accept the status quo. I have found the more I research stroke, pain or pain management the easier it became to cope with it. One quote I came across had me agreeing with it fully,
‘Suffering is only one possible reaction to pain. One can experience pain without suffering from it.’
By using pain to motivate oneself, one can discover and develop one’s spirituality. I am aware it is my responsibility alone to take control of my healing and it has to be a holistic approach. Not only do I have to consider my physical condition, but also be aware of my state of mind – how I think and how I feel – for all of these are intrinsically linked.
If I am in a panic or become fearful this has a profound affect on the cells in my body. They are no longer able to work as efficiently to provide a healthy body or are restricted in their effectiveness in fighting infections. Our whole immune system relies on our positive outlook on life for maximum wellbeing and freedom from disease. When we have negative thoughts or are depressed our cells become sluggish and lose concentration. Stress in our lives is responsible for so many physical conditions. However, when we are happy, positive or find time to laugh, our immune systems are boosted and life becomes more bearable.
Keeping my mind active and using distracting techniques, detaching myself from the pain using self-discipline, determination, and dedication all help in making the pain a less important part of my life.
I know this pain will not disappear. I acknowledge that it will continue to exist but I do not let it restrict me from the activities that I want to do. The most important duty I have is to keep an even balance of joys in my life. For joy and passion can negate the depression and hopelessness of chronic pain.
Battle stations
I must summon my resources and work out a strategy to conquer this intrusion in my life. The first strike to diminish the pain is in using distracting techniques at the mental level. I must think of exciting and fulfilling activities to do to block out the constant pain. Summoning resources from my emotional side, I use enthusiasm and the joy of living to give me the impetus to move on. I need discipline, to rally the troops and to keep them focused, and determination, so they do not waiver from the job in hand. Creative visualization of beautiful places, where the pain does not intrude, can also help.
Keeping my mind active – leaving no room for the pain to dominate – is another string I have added to my bow. I delight in jigsaw puzzles, 1000 pieces or more, crossword puzzles, cryptic puzzles, puzzles in logic or mathematics and even mazes, anything at all that I can totally immerse my mind in and forget the painful sensations.
Being flexible and adjusting to the weather conditions is another important aspect I follow to become a winner in this war. I know if it is more than 26ºC outside, it is better to stay indoors and prevent the extreme reaction to the heat from occurring. Listening to my body and allowing time for it to recover makes good sense. If I push myself beyond my limits it reduces my ability to stave off the pain. If I am exhausted, I have to rest no matter what I have planned in my diary. I also need to be aware of the sleep debt I have incurred. I know that I am responsible for discharging this debt and balancing the account to keep functioning.
I must be aware of the diffidence and weariness of some of my troops and keep their spirits from flagging and make sure they have a positive outlook, for a depressed army is not only ineffective in fighting the foe, its negativity increases the power and strength of the opposition.
The morphine I have is my last resort. It is far better to depend on my resources in overcoming the pain than it is to pin all my faith and hope on a drug of dependence. Now I know what is ahead and what the battle will be I shall put on my armour and I shall fight. I know I can do it.
Part 12
Seize the day
When I first had the stroke its effects filled all my thoughts and every moment of my days. It was there when I woke in the morning and as I struggled to climb out of bed and endeavoured to follow my normal routine. It never left my side or my consciousness. Over a year after my stroke – that big detour in my life – and I wonder if I am back on track, following my ordained course. I glimpse back at this unfamiliar and difficult path to see how far I have progressed along it.
One day I visited a new stroke survivor with Gillian. The first questions he asked of us were how had our lives changed since we had had our strokes?
‘Did we have a new or profound insight into life? Had we had a religious experience?
How had we come to terms with our altered selves?’
I thought about this, and although I had not had a near death experience, consciously I knew that I could have died and my belief in my own immortality was being tested. What first jumped out at me was the concept of procrastination. No longer do I put off until tomorrow all the joyful things that I could do today. I look around our house and realize that I have indeed been practicing what I preach.
I decided to update our bedroom with new curtains and a doona cover to set off and complement our beautiful new bedroom furniture in Australian hardwood. What better time was there to do it but now. I chose brocade material in antique shades of olive green, gold and a dusky rose. I made a bedspread, pillow cases, cushion covers, and swags and ties to go over the new gold curtains. New pictures on the walls, a gold and cream mirror and cream lampshades put the finishing touches to the room.
With a new outlook on life I deserved a new out look.
Old favourites
Graham’s teddy, his birth present and my 100 year old doll take pride of place on our new tallboy. Edward Bear Esquire, or Ted for short looks a bit worse for wear after all these years. Perhaps we should call him Fred Bare (thread-bare), as he is thinning out in a few places, but that would be cruel. Even his growler still works after all this time. However, his voice is a little huskier than it was when he was just a young cub.
I received my porcelain-faced doll for Christmas during World War II. New dolls were not available for purchase. Only essentials for the war effort were being produced and no politician would ever consider that a doll was a necessary item. Plenty of little girls, if they had been consulted would have disputed this logic but nobody listened to them.
My mother had scoured the papers and answered the advertisements and at last managed to procure two secondhand dolls, one each for my sister and me. Unknown to us, as we slept each night, she created a wardrobe of clothes for the new additions to the family. With ration books and little coupons to be exchanged for the necessities of life, there was no category for doll’s clothes. Mum cut up part of her wedding gown to provide the material for a bridal outfit for each of our dolls and fine white sheeting, trimmed with tiny pieces of lace was fashioned into their underwear.
We could not believe our good fortune on Christmas morning when we beheld our beautiful dolls. We were even more amazed when we discovered that there was actually elastic in their panties!
Left of Tomorrow Page 12
