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 brain 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.

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.