I had planned to ask him my many questions, but there did not seem to be an opportunity, and I was still coming to terms with the discovery of how large the white area was in my brain. I had hoped for only a small pinpoint, but here was the evidence. I did not want to interrupt him when he was examining me, or when he was writing his notes about me and by the time this was all done, he was ready for the next patient.
‘Any questions?’ he asked me. But at that stage I was no longer concentrating on my list of queries. I needed to absorb what I had found out.
His greatest concern was my elevated blood pressure and thought that I might have another stroke immediately as a result of this. He prescribed some medication for this and suggested I see him again in four weeks time. I had survived one stroke and I certainly did not want another and this announcement made me very worried. If my blood pressure was that high I felt sure I needed to be supervised at more frequent intervals than monthly, so I decided to follow up with my local doctor. Weekly visits to my doctor detected no noticeable rise in my blood pressure. On the medication, I was keeping it at a steady 120/70.
Four weeks later I was back at the neurologist. This time I was ready to ask all my questions and started in straight away.
Was there no written material in the form of pamphlets or booklets that explained the effects of a stroke and the stages of recovery?
He told me he was unaware of any such information. Although his waiting room was full of pamphlets on Parkinsons’, Alzheimers and Multiple Sclerosis, there was not a single piece of information on stroke.
I insisted that surely there must be something and he suggested a book he had heard of, although he could neither remember the title nor the author. On speaking to his secretary, she had more information and was able to tell me that the title of the book was My Year Off, and the author was ‘Robert something or other.’ With this information I drove immediately to the bookstore and asked for some assistance. I was directed to the shelf and there was Robert McCrum and ‘his year off’.
An off year
Robert, an Englishman, was once Editor in chief of Faber and Faber Publishing and had written a number of books. He had a stroke at 43 years of age, and this book was the story of his year of rehabilitation and of his coming to terms with this stroke. I read avidly, trying to identify my feelings and experiences with his, and seeing what we had in common.
I was rather disappointed. So much of his book was taken up with his privileged upbringing, his successes in life and his moves in such elite circles in society. I probably would have been impressed with the name dropping of British editors and publishers, if I had known who they were, but instead it all passed over my head.
He had kept a diary of his hospital experiences from the first few days as he was still able to hold a pen and write, and quoted from these, as did his wife, Sara. The difference between his wife’s entries and his was tremendous. Sara’s extracts told of
her feelings, concerns and anxieties as well as each milestone Robert achieved on his way to recovery. In comparison, his seemed only to reflect his anger and frustration, and helplessness, not in what he expressed but rather in what he did not.
I had hoped to recognize in his words, some similar experiences to mine, but I did not feel that he was able to tell us how he felt about his situation. Facts, figures, friends were explored but to my frustration no mention of feelings. I felt I had more questions to ask, than being satisfied with the information given. Now on rereading his book I see that perhaps I have been too critical in judging what he has written. I was looking for answers for my particular situation and my experiences and maybe it was up to me to find the solutions myself, not to rely on others to reconnoitre this new territory for me.
I know as a mother and now as a grandmother that experience can only be learnt by doing, going and growing through it. Watching someone else or listening to their story, although it may provide clues to one’s progress, cannot replace the actual experience.
At the following appointment, four weeks later, I was ready to question the neurologist. One of the first queries I had was as he had recommended Robert McCrum’s book to me, had he in fact read it, and did he think it was relevant for Australians and particularly stroke survivors? He had never read it he informed me, he had only heard about it. I still wanted more information on what was available in Australia in regard to organizations or support groups for stroke survivors, but he knew of none.
My blood pressure had again risen and he suggested I should double the medication to prevent a repeat performance of my stroke. I handed him a list of all the strange and painful sensations I had experienced and had described each one. ‘Yes, this one is called parathesia and that one is dysaesthesia and the next one is allodynia,’ he said as he wrote them down for me. The burning pain I had described he called causalgia. It was reassuring to know that I had not imagined them. They were documented and named, but the only difference the names made to me was that they validated what I was feeling. It certainly did not make the sensations normal or any more acceptable.
Once I arrived home, out came the reference books and dictionaries and I found definitions for each of the given words. From the Greek language the suffix – aesthesia means sensation or ‘perceptive state’ so:
Paraethesia translates to abnormal sensation and refers to prickly and itching feelings.
Dysaethesia with its prefix of dys means difficult or poor condition of sensitivity.
Allodynia is defined as different or altered sensation.
Neuralgia combines nerve and pain to describe nerve pain. Causalgia is the name given to the neuralgia distinguished by a burning pain – kausis, the Greek word for burning heat.
So now we knew. I had abnormal and altered sensations, with a strange and difficult sensitivity and nerve pain that felt burning hot. All we had to do now was turn the knob to ‘normal’ and everything would be all right. However, trying to find the correct treatment for cessation of all these sensations has been fruitless. They might not be my friends, but they are my constant companions who are ever by my side or in my side.
Sensuous woman
All my life I have enjoyed and delighted in my five senses, sight, sound, taste, touch and hearing. And of these five, sight and touch have given me the most pleasure. I have always delighted in what I can see with my eyes – colour, form and the play of light and shade. However, my fingertips have always tingled at the expectation of a new texture or a new sensation. I can never resist the temptation of entering a fabric shop and just wandering around and exploring the fabrics. My hand snakes out and sneakily touches the slinky surface of satin. I love to compare the furry smoothness of velvet stroked one way to the prickly resistance of the velvet brushed against the pile. I treasure the smoothness of silk and the fluffiness of fleece or wool. Dogs, cats, children, particularly babies are touched and caressed by me as I cannot get enough of each different surface. How can one refrain from feeling the soft skin of a baby or rubbing one’s fingers over his down like hair?
I can remember as a schoolgirl, first reading the poetry of Rupert Brooke, an Englishman who died during the First World War when he was still a young man. His poem called The Great Lover explores his passion for the familiar things that give him great pleasure. He describes to us his favorite loves, but the ones with which I identify most with were his ones referring to touch:
‘These I have loved: White plates and cups, clean gleaming,
Fringed with blue lines; and feathery, fairy dust; Wet roofs, beneath the lamplight; the strong crust Of friendly bread...
Then, the cool kindliness of sheets, that soon Smooth away trouble; and the rough male kiss Of blankets; grainy wood; live hair that is Shining and free...
The benison of hot water; furs to touch;
The good smell of old clothes; and other such –
Firm sands; the little dulling edge of foam
That browns and dwindles as the wave goes home;’
&nb
sp; I can feel through my fingertips exactly what he means. That wiry prickle of a woollen blanket feels just like the whiskery stubble that grows back after a shave. I love to experience the whole range of sensations that sand can provide. From the wet sand at the water’s edge squeezing up between my toes, to the drier, less stickier sand further up the beach and then the fine, fine sand pouring through my fingers as if it were flowing water.
I remember when in primary school the first time I was introduced to finger painting. The delight when I put both hands into the bowl and felt the cold clammy mixture and allowed it to ooze up between my fingers as I tried to grab handfuls of it. The smooth slickness of the jelly paint as I spread it around on my sheet of paper. The greatest joy was not of creating patterns in the gelatinous blob, but surrendering to the sensuousness of the medium and its interaction with my hands.
I love the feel of water flowing over and around my hands and the smoothness of the polished river pebbles. My hand reaches out to caress a highly polished piece of wooden furniture or the rough textured bark on living trees. Soft leather and velvet suede and my hand has a mind of its own as it reaches out to stroke, to touch, to connect to feel and savour the experience. All these have given me so much pleasure. I hope that in time these textures will once again give pleasurable sensations to my right hand and side.
Fingertips
Two months after the stroke, and at last some normal sensations return to the tips of the three middle fingers. The first millimetre is normal, but the rest of my hand is still supersensitive with the volume turned up fully. I was using my right hand as often as possible, although I could not feel an object if it was placed in my right hand. I knew if I did not use my hand, the muscles would weaken and it would become harder to stimulate and make it function. I would accept the change at the supermarket with it, although I would immediately transfer it to my left hand to place it in my purse.
Searching for anything in my bag with my right hand was hazardous. I could not feel the difference between any texture, sharp or blunt, and the fingers did not work if I could not see them. Even if I found the keys I was seeking I was unable to pick them up unless I was watching my fingers. It was useless trying to pull a handkerchief out of my pocket when I could not differentiate between the pocket lining and the hankie.
Three months later, the normal feeling had moved to include the first centimetre on these three fingers. However, my thumb and little finger and palm of my hand were still lost in a bizarre world of unnerving sensations.
I know and believe that touching each other is so important in our lives. It is a known fact that human touch is an essential factor in our development. Young children, particularly in some overseas orphanages and premature babies are less likely to survive if they are neither stroked nor handled with a loving touch. Also, they can experience difficulties in bonding with people for the rest of their lives.
To reach out, connect and make contact with another person is to feel alive and a part of the human race. I offer my hand to someone to shake hands with as this is the customary thing to do. My right hand looks alright and feels normal to the other person linking with me. With practice, I have managed to erase the grimace from my face when my skin is touched. It is far better to bond with someone, than it is to withdraw my hand from their grasp and cause offense to them because of the pain.
Part 4
Fate
The next day, following the neurologist’s appointment, I spoke to Alli about my disappointment in not being able to find any information about stroke and stroke support from the neurologist and his rooms at the hospital. Her suggestion to look on the internet, was brilliant. Why had we not thought of it before? I joined her at the computer and she asked me for some key words. I remembered my father had been asked to participate in a follow-up program, and the name of the group was Nemesis, a research program for stroke survivors. I knew of Nemesis, the Goddess of divine retribution or punishment. My book of mythology described her as an avenging goddess, representing the righteous anger of the gods, particularly towards the proud and the insolent. She is not one of the Furies, but was closely related. It certainly seemed an appropriate word, however black the humour was, to refer to a post stroke group by this name.
Alli tried Nemesis as the key word, but out there on the World Wide Web, there was no response.
‘Think of another word,’ she suggested. ‘How about ‘stroke’?’
It certainly did not have the same ring of mystery or intrigue about it that my word had. It was short and to the point. However, we gave it a go.
Eureka! We did indeed find in the National Stroke Foundation’s web site pages a reference to Nemesis. Not the Greek goddess of mythology, but an acronym for the North East Melbourne Stroke Incidence Study, a research group for investigation into stroke. No wonder we could not find a listing in the White Pages! There on the very last page on the web site were telephone numbers to ring for information on stroke. I copied one number down noting that it was a number in the central business district of Melbourne.
Nine o’clock on Monday morning and I could not wait to make contact with this unknown group. A pleasant voice, on an answering machine, responded to my inquiry, and asked me to speak slowly, leave my name and phone number and she would return my call. Later that afternoon, the telephone rang and the same delightful voice introduced itself. Gillian Simons, President of the Stroke Association of Victoria, was speaking and what could she do to help me?
She offered to visit me the next day, bringing with her all the pamphlets and booklets I might need. She spent time explaining that she was also a stroke survivor and could understand what I was going through.
I was so pleased to have found someone with whom I could identify and could show me the path to recovery. I suggested that I could visit her as I was now mobile and we arranged to meet the next day.
Gillian is the most enthusiastic and energetic person that I know. She explained that when she had her stroke twelve years earlier, she had felt as lost as I had. There was no information and no support group to turn to. As soon as she was well enough, she decided to set up a support group in her own area and became involved in the work of the Stroke Association so that others, like me, could benefit from her experience.
She handed over a wide selection of brochures covering all aspects of post stroke recovery and information on where to find help. If there had been a drought before on the information front, now there was a deluge. I was flooded with
information on every aspect of stroke, its effects and reactions. All the questions that had been running around in my head could now be answered. I knew I would be occupied for some time in gleaning all the information and processing it as I at last had the opportunity to understand stroke and its ramifications on my life and the others around me.
Inform
Amongst the documents I selected from Gillian’s extensive collection was one about community support, and what services were available to a stroke survivor. It described in detail the many disabilities a stroke might initiate, and various problems a survivor could face. Problems arising from a lack of communication, following speech loss, were covered in another pamphlet. Other issues included a recognition of the emotional dysfunctions that were likely to occur in relationships, because of the change in the family dynamics and circumstances as a result of a stroke.
Depression in stroke survivors had its own separate pamphlet. I learned that from one third to one half of stroke survivors experience clinical depression as they endeavour to come to terms with their changed selves and their lifestyles. Therefore it is very important to have this diagnosed quickly and the appropriate treatment given. I could certainly understand how easy it is to become depressed when one is suffering from the grief of losing your known self and half your body.
I noticed that many of the brochures that Gillian had for me had been developed and printed by the Brain Foundation of Victoria. This is a charitable organization which provides supp
ort services and educational programs for people who are brain damaged and their carers. It also raises funds for research into the prevention of stroke and other neurological disorders. To my surprise and delight, there was even a small booklet entitled Stroke Recovery Highway, complete with a map and signposts to show how to negotiate oneself through this new territory of information.
There was a brochure dedicated solely to rehabilitation. As I read through this one, I realized that rehab. is not just for an hour a day, or a few weeks, but for the rest one’s life. It described rehabilitation as the process of active change. A person who has impaired function resulting from a stroke has to learn to adapt to his or her new situation. They also have to acquire the new skills needed to attain their optimal physical, psychological and social potential. Every chore we do, every exercise we practice, is helping us to reach our greatest goal; our best selves.
I can see that even writing this essay is another aspect of rehab. By recording where I began, and the stages through which I have passed, I acknowledge how far I have come as well as recognizing how far I would still like to travel to reach the ideal me. As I write these words I see that I need to continue to be flexible in my thinking and continually readjust this image. The resultant me is the sum of all that has come before. Whether it was a good or bad experience, it has coloured my life and shaped my personality.
Define
The final document was titled What is a Stroke? and was written by Professor Geoffrey A. Donnan from the Austin Repatriation Hospital. He explains in great detail, but in layman’s terms, the processes of stroke, how it happens, how it is investigated and so diagnosed. He explains that no two strokes are identical and what eventuates will depend on how much permanent damage has been done and where the damage has occurred in the brain and its functions.
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