Left of Tomorrow

by Wendy J. Lyons

  Donnan describes in detail the different types of stroke, from a clot or embolus in the blood vessels to an aneurysm – a weakness in the wall of an artery that can burst or a haemorrhagic stroke caused by a small bleed from a vein or artery in the brain.

  A stroke affecting the left side of the brain shows up as deficits on the right side of the body and vice versa. The left side brain usually controls speech and some people may lose some or all of their ability to understand words and there can be strange changes in vision, touch, judgement and thought processes. The most common effect is called hemiplegia – half paralysis – and the muscles on the affected side can become weak and floppy or alternatively cramped and inflexible.

  The statistics on stroke were staggering. I had no idea that this condition was so widespread and covered such a range of ages. It is the greatest cause of disability in Australia. Forget about it happening only to the elderly, here were the figures to show that children as young as one or two years old could have strokes. Stroke does not discriminate. In fact the figures from the National Stroke Foundation show that last year 500 children in Australia had suffered from a stroke.

  Over 60,000 Australians have a stroke each year, of which 20,000 die within the first three weeks. There are at least 400,000 stroke survivors out in the community, with various degrees of disability and deficits. If we consider each stroke survivor has a minimum of three close family members or friends, a staggering figure of 1.6 million Australians are affected by stroke and this is only considering the survivors. Twenty thousand families each year have suffered the loss of a loved one.

  Some of the following statistics sound overwhelming but these effects are often transitory, not permanent. Stroke survivors do often recover some abilities.

  Eighty percent of stroke survivors have hemiplegia. Fifty percent of stroke survivors have slurred speech and weak and flaccid facial or body muscles.

  Thirty percent lose the ability to understand words or have difficulty in swallowing.

  Fifty percent have disturbances to their sense of touch. They can experience blunted senses, clumsy movements or the inability to know where a limb is without looking at it.

  Seven percent have disturbances to their vision, such as partial or complete loss of sight in one eye, or half of their field of vision.

  Others may experience loss of awareness of everything on that side, including their own body. This is called neglect.

  Two percent suffer a very unpleasant or throbbing pain called central nerve pain or thalamic pain syndrome.

  Deliver

  I asked Gillian for some extra brochures describing the work of the Stroke Association of Victoria. The Association is a network of people whose lives have been changed by a stroke and now volunteer their time to visiting, counselling and listening to new stroke survivors. The Association also assists in the establishment of stroke support groups. Gillian handed over a large bundle of these brochures.

  Within the next few days I returned to the stroke ward at the hospital, and also to the rehab centre, and handed over the brochures to the staff. I did not want anyone else to experience the isolation I had felt. I believed it would benefit both the stroke survivor and their family to know that an association of supportive care was available to them; and to be given this information immediately on their discharge from the acute hospital. I distributed the remaining brochures to my neurologist, for his waiting room and to my local doctor, so that the professionals as well as the survivors of stroke would be appropriately informed.

  Part 5

  Birthday candles

  My sixtieth birthday was drawing near and my daughter Rae asked me what I would like to have as a birthday present. A piece of furniture for the garden, something for the house to make life easier for me, what did I have in mind? My thoughts moved beyond the house, beyond the garden, and I picked up on another of her suggestions. A hot air balloon flight over the Yarra Valley.

  I so wanted to be free of the confines of this stroke, limiting me in what I was able to do. I could envisage myself floating above the world; as free as a bird, and not restricted to a staggering walk or a sense of imbalance. To be detached from this present state of things, and to have the opportunity to see the greater picture would help me put my life, my work and my ideals into the proper perspective. I jumped at the suggestion! Yes, it was all that I wanted. On the day of my birthday, Alli produced a large box wrapped in purple paper and tied with gold ribbons. I opened the box and was taken aback when a large purple helium filled balloon floated out, followed by a stream of ribbons. There at the end of the ribbons was a open voucher for a balloon flight and a champagne breakfast.

  I kept the balloon hovering near the kitchen ceiling. Every day I would look at it, and its promise, and it would inspire me to work towards being well enough to take the flight. It was not until January 2001 that I decided the time was right. I could now balance myself well enough and walk without limping. So I went ahead and booked the flight for a Wednesday in mid January.

  We were up early on the day of the flight, as we had to leave home at 4am to travel to Dixon’s Creek in the Yarra Valley. Most flights are organised to start at dawn because the winds are most stable and predictable at this time. It was a very professional and highly organized activity. Our team consisted of two balloons and two pilots, who are currently qualified light aircraft and helicopter pilots. However, their passion is for this first form of air travel and being in charge of a balloon is their preference.

  Up and away

  Nothing could ever come near the experience of the flight. If I had thought that I would be drifting along and would feel the breeze on my face, I was totally wrong. The balloon moved with the wind, so from our frame of reference there was no air movement. The stillness surrounding us was eerie. We were the wind. We were part of this force and we were contained within it. The earth slid slowly beneath us as we hung in mid air, isolated and silent.

  I had the urge to hold my breath. This sense of being suspended in space and time was overwhelming. I had no desire to speak to my fellow balloonists and to thereby break this incredible spell. The occasional roar of the gas burners as our pilot ascended was the only sound that filtered through to my ears. It was like a religious experience. We were half way between earth and heaven, a view that only the birds had witnessed. We were no longer earthbound. We moved slowly and purposefully, zig-zagging our way through the various levels of wind. South at 1500m, then west at 250m – sometimes just clearing the treetops, and at other times, high enough to see Melbourne and have Port Philip Bay in our sights. This was accompanied by gentle creaks and sighs as the balloon and basket ventured up and down or just hovered.

  The journey was better than I could have possibly imagined it would be, and is now another experience I hold dear; another memory to keep forever. We landed gently, and the basket rolled onto its side. But nothing could take the grin off my face, it seemed to be fixed permanently. I had wanted to take this flight for many years and now I had achieved it. As I crawled out of the basket, I realized that nothing would stop me from doing anything that I desired.

  Hot air

  After our landing in a farmer’s paddock filled with rolls of newly cut hay, the team repacked the two balloons and we were all ferried back to De Bortoli’s Winery where we indulged in a sumptuous breakfast. As we sipped our pink champagne and feasted on the culinary delights before us, our pilot entertained us with the history of balloon flight and its intrinsic link with champagne.

  In 1782, while watching his parlour fire, French papermaker Joseph Montgolfier noticed small particles of soot floating up the chimney. He experimented with a small silk bag, lit a tiny fire under it, and watched in delight as it floated to the parlour ceiling. He coerced his brother to join him in experimenting outdoors with larger silk bags, soon to be known as balloons. In September 1783, they demonstrated their invention before King Louis XVI and Queen Marie Antoinette.

  The first untethered and manne
d balloon flight took place in November, 1783. The King suggested two criminals on death row should be given the chance for freedom if they volunteered. However, Jean Francois Pitone de Rozine suggested that the honour of such a venture should go to more illustrious names than to those of common felons. He and the Marquis d’Aulaider were thus chosen to be the first men to fly.

  The organisers, unsure whether the balloonists would land in friendly territory or would meet an irate farmer who might accuse them of scaring his livestock, produced a bottle of French Champagne and handed it to the two men. As explained, it could either be given to the angry farmer to appease him, or used as a weapon to club him senseless, while they made their getaway. If everything went to plan, the bottle could be opened and all could share in the celebration. The flight was successful, leaving Paris and travelling a distance of 12km in 25 minutes, and the champagne was consumed. A toast was proclaimed to a new form of transport, and a new tradition linking balloon flights with champagne had begun.

  Part 6

  Fishing

  My greatest problem at three weeks after the stroke and still is, is my little finger. Every time I think about it, I chuckle at the kindergarten counting song.

  One, two, three, four five,

  Once I caught a fish alive

  Six, seven, eight, nine, ten

  Then I let him go again

  Why did you let him go?

  Because he bit my finger so

  Which finger did he bite?

  This little finger on the right.

  Indeed it was this little finger on the right that was so troublesome. I never knew where it would disappear to because it was usually hidden behind the other fingers.

  Without keeping an eye on it I could not control its behaviour. Some days I would have a drink of wine at dinnertime. I used a short stubby wine glass as my right hand was still very clumsy. This little digit would then disappear. I would endeavour to place the glass back on the table and nearly knock it over. My little finger had moved from holding the side of the glass, to under the glass and of course was being squashed between the glass’s base and the tabletop.

  Because it had no sense of touch or where it was in space, it would squeeze itself up against the other fingers crushing them together, unaware that it was already in contact with them. Later on, when I was driving my car this little finger would cause cramps in the other fingers by this insistent and persistent pushing. I am forever unlatching it from its cramped position to return it to its normal spot.

  Now that I have started to type on the computer this little finger is still in trouble. I am only using one or two fingers on each hand to type as I am a complete novice at this and the ‘qwerty’ keyboard. I have a hard enough time trying to find the correct letter as I spell out the words and do not look at the screen until I finish a sentence. Then to my surprise I discover I have large gaps in my text. That little finger has been touching the space bar and moving the cursor along unbeknown to me and creating all these spaces. If only I could feel where it was and what it is doing.

  I also had another problem with the computer keyboard. I was unable to determine the strength in pressure of the fingers of my right hand. Sometimes the strength behind my fingertips on to the keys was so great that I would end up with multiples of each letter. Other times there would be missing letters in each word as my light touch had not even been registered by the computer. It did not take long for the most used key to be the DELETE one.

  At the six months post stroke milestone, I had a major break through. I had been spending plenty of time gardening and clearing out the weeds over the past few months. However, I never knew if I had cut myself or had a thorn or prickle in my right arm and leg, because I still had no feeling in them. This one day, pruning back the roses I got a thorn in my right thumb and it really hurt. It was the very first time since the stroke that I had felt a normal painful reaction.

  Two weeks later – another milestone. The sole of my right foot had started to feel, instead of being numb and dead. But after months of numbness, it was not a normal sensation. It was so highly sensitive I would cringe at a grain of sand or an uneven sock. However, change is better than no change and each stage of sensation, I hope, is a station on the railroad to recovery. So far I have not found anyone who has had a similar stroke to mine so I am treading in unknown waters. This super sensitivity reminds me of the fairy tale about the princess and the pea. But I just cannot imagine me walking around with seven mattresses buffeting me from the sensual world.

  A thong to remember

  I can recall when I was young when thongs first came onto the market. Those delightful rubber slip-ons held by straps between the big toe and its neighbour that competed for popularity against the familiar scuffs. I hated the sound the scuffs made as the wearer shuffled along, scuffing the floor with each step.

  It may have been a new idea for the Western world and was the latest fashion fad, but for the Japanese it was old hat. Even as far back as the seventeenth century the fashion conscious Geishas could be seen tripping daintily along in their high platform wooden geta to keep the hems of their flowing kimonos from the mud and slush of the streets in winter time. In summer their choice of footwear was the flat bamboo soled zobi. The essential accessory for both designs was the tabi, the special white socks with a separate sewn space for the big toe.

  Thongs were truly great and my feet felt immediately at home in them. My toes knew exactly how to position themselves to hold on and walking in thongs was a cinch. It was as if I had done it all my life, so familiar was the technique. Heel down first, not toes, was the way to go.

  Over the years I have had many pairs of thongs. From the very first pair of plain rubber ones to black velvet models and brightly coloured psychedelic examples in the seventies I collected them all. I even had a selection in my wardrobe of embroidered and heavily beaded pairs for eveningwear.

  After my stroke I decided to try on my favorite summer footwear. I felt confident enough to try walking without my heavy lace-up shoes. I was now ready to experiment with something less cumbersome. My left foot slipped into its position immediately. However I was amazed at the behavior of my right foot and toes. The toes would not move at all, no matter how hard I stared at them and willed them to cooperate. I manually had to feed my big toe into its position on one side of the strap and pushed and shoved all the other toes into their correct places. Then I stood up and was ready to take my first step. Immediately the thong on my right foot fell off.

  Every single memory and movement was missing. There was no sense of knowing what was required of my foot to hang onto the thong. The muscles, the ligaments and connective tissues did not have a clue. It was as if their previous knowledge of walking in thongs had never even existed. Enough with walking in only one thong, or rather hopping on my left foot as I still could not cope with a bare right foot. Sadly I realised I had to leave my thong time behind me in the past, and those days would just become a distant memory.

  Who’s the boss?

  Each time I visited my neurologist a strange event happened. My blood pressure readings would go up sky high, but on leaving his office, it would return to normal. I decided I needed to investigate what was going on. I realised I was uncomfortable being with some one who knew more about what was going on inside my head, than I did. It felt to me like an invasion of privacy. I wanted to be in charge, not only of my mind, but of the whole of me.

  The neurologist represented a genus that could get inside my head figuratively speaking. Even if it was only his knowledge of the neurons and the paths they took in my brain, it was still threatening to me. I explained to him about how I felt and we had a good laugh. Expressing my emotion had cleared the air and we ended the appointment with the shaking of hands and best wishes to both of us in the future.

  Another neurologist was researching the effects of stroke by comparing the results of my original MRI, to a more recent one. This was to identify if the white patch of destroyed brai
n cells had changed in size, three months down the line. I was disappointed to find it had not diminished, although it had not became larger. His response, when I mentioned the deficits I still had, was that if I could still dress myself, eat and walk, why should I complain? I suppose I was a bit greedy wanting to feel more normal and actually be able to wear clothing that was not limited to a wardrobe of track suit pants and loose tops. My expectations of a complete recovery seemed to surprise him. I should put up with the handicaps and not complain. It seemed to me that he did not believe that there was any value in rehabilitation or that time would improve my condition.

  It had been suggested to me by my neurologist that if I could not find a book about stroke that I could personally identify with, then I should write my own account. At first, I thought it was a silly idea. Who would want to read it? However, the more I thought about it, the less silly and more sensible it became. Even if I was the only one to read it, it would be a record of my journey through stroke recovery. I could identify where I had come from and how far I had traveled.

  When I first started to write this tome and put pen to paper I was amazed at the speed the words came tumbling out, one on top of the other accompanied by such a surge of emotion that my hand kept shaking and could barely keep up with

  the flow. At the first reading I would discover that I did not need to keep all this emotion. This first draft had released the buildup of frustration and pent up anger and now I no longer needed to hold onto it. Once expressed, these emotions had no power over me and I was free of their burden. It was with great pleasure that I could screw up that page of writing and deposit it where it belonged, in the rubbish bin. Now I was able to rewrite that passage or recount that experience without the anger, the sarcasm or cynicism. I hope that I or anyone else reading this could gain both insight and enlightenment from my story free of ire.