Part 11

A nip or two

In September I visited Peter MacCallum Cancer Institute to catch up with my friends and work mates there. It was rather strange to witness how they reacted to the news that I had had a stroke. One good friend, an Oncologist, was very concerned about my continuing problem with central nerve pain. He suggested that I visit a friend of his who was an expert in treating pain, and provided me with her phone number.

I made contact with Dr Helen Austin, Medical Director at Caritas Christi Hospice, and made arrangements to visit her. I had always been interested in the concept of a Hospice where dignity and respect are foremost in the treatment and support of the terminally ill. I had discussed this concept with the Chaplain Service at Peter Mac. some years earlier, as I believed the introduction of a Hospice at the Institute would be beneficial to all.

I attended Caritas Christi and felt very much like a fraud.

I had so much to be thankful for. I might have intractable pain, but I was still alive and not terminally ill. As I entered the building the peacefulness and serenity that surrounded me was overwhelming. The floors were all carpeted and flower arrangements were in abundance. The staff moved quietly around the wards and looked after their charges with gentle care and support.

Helen Austin was a delightful person and I warmed to her immediately. She was very interested in my problem and assured me that there were plenty of options available for the treatment of this pain. Helen’s first suggestion was that I keep a Pain Journal, so I could note the pain at any particular time and see how it fluctuated. At first this was very hard to do. I had spent the last twelve months concentrating on everything else, to the almost total exclusion of this pain. Now I had to bring it into focus and consciously rate this pain on a scale from one to ten. I managed to train myself do this, finally becoming aware of the pain but emotionally detaching myself from it. Each time I opened the Pain Journal, I read the two quotes that I had written that put my life into perspective;

‘Life is a gift, and every moment is a celebration of its miracle.’

Underneath this is a verse from one of my favourite hymns sung at school assembly each morning;

‘Breathe through the heats of our desire Thy coolness and thy balm Let sense be dumb, let flesh retire Speak through the earthquake, wind and fire Oh still small voice of calm.’

The first medication that Helen prescribed for me was Dilaudid, a new form of Morphine which, at the time, had only just become available in Australia. I was astounded when I received the medicine from the Pharmacist. I was handed a large, brown, rectangular shaped glass bottle, reminiscent of the Patent medicine bottle of around 50 years ago. The contents were clearly marked as 473ml. What an odd number! I thought at first it must be a prime number, not rounded up or down, but this turns out not to be so. It is the product of two prime numbers, 11 and 43. What a mystery! A few calculations later, Graham and I worked out that it was a direct conversion from one American Pint.

The glass Dilaudid bottle is so heavy and of such a large and awkward shape that I cannot lift it up to store it in our high medicine cupboard. Instead, it sits on my kitchen bench, more like a bottle of Scotch or a decanter of Port, and I take a mini-nip – actually only a prescribed one millilitre – out of it every few hours.

The relationship between Helen and me is built on mutual trust. I have faith in her that she will use caution, and be circumspect in prescribing the medications for me. I believe in her ability and am confident that in time we will find the solution and reduce the intensity of this pain. Helen trusts me to be responsible in taking the Morphine, and not to exceed the specified one millilitre every four hours dosage. As it is a drug of dependence, the risk of addiction is very high if it is abused.

Windstorms and silken threads

Helen Austin gave me the honour of sharing some of her work concerns with me, and it was wonderful to be treated like an equal, rather than to be dismissed as deficient. Her problem was in endeavouring to support and care for the family of one of her critically ill young patients. We all take it for granted that the natural course of events is that we will be around to nurture our children until they are grown, and that they will outlive us. I cannot imagine how devastating it would be for a family to have to accept that they were powerless to change such an outcome.

I have read several books by Elizabeth Kubler-Ross on death and dying, and her book on children was very touching. She began the book with her favorite quote;

‘Should you shield the canyons from the windstorms, You would never see the beauty of their carvings.’

I am pulled back to Utah and the Canyon Lands. The punishing and unrelenting forces of nature had sculpted the grandeur of the scenery. Elizabeth explains that children who die young, have already learnt all of their life’s lessons of love, of life and acceptance and do not have to stay here on the earth plane for as long as the rest of us. These children were wise beyond their years and become our teachers in life because they know death and they do not fear it.

I truly believe that my life here is a testing time for me, a time of learning and experiencing many challenges, and at the end of all my trials and tribulations I shall graduate to a spiritual life, enriched by the tests I have undergone. I see death, therefore as an extension of life and not the end of it and myself as continuing to exist after my physical body has expired.

Does the caterpillar have to die for the butterfly to emerge from the cocoon? Or is it the same entity in a different life form? If you look inside the cocoon that the caterpillar spun, and the butterfly has emerged from, there is no corpse, just the empty shell of silken threads. And so it is with us. When we transcend the earthly plane, when we die, our bodies are just the empty shells of ourselves. The butterfly, which is the true essence of our being, is still alive and has flown onto a different plane, a different dimension. Our mortal remains stay here to return to the earth itself. At my father’s memorial service I shared these thoughts with the congregation:

‘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.