‘Fancy wasting elastic just on dolls!’ we chorused together. For we both knew that buttons were recycled off older clothes to be re-sewn on to newer ones. Elastic, that most precious of commodities, was used over and over again until all its stretch was gone and it would fail. This resulted in causing us great embarrassment as there was nothing left holding up our underwear. The utter luxury of using six inches of elastic for our dolls was unbelievable. It was enough to get our knickers in a knot just thinking about it.
There was no hesitation on my part in choosing a name for my beautiful new doll. The wonderful stories of Christopher Robin and his friends by A.A. Milne had been read to me each day. I knew no-one who could be a better role model and hero for a five-year old than a child who dared to question her elders on the origin of God.
‘Elizabeth Ann said to her Nan Please will you tell me how God began?’
Elizabeth Ann, my new old doll who knows everything, sits beside Ted. He wears a pair of century-old wire spectacles, complete with lenses, and is still waiting for me to finish his brocaded vest. She is dressed in a cream lace Edwardian creation and dreams of the feathered and lace hat needed to complete her outfit.
Just along from the old friends on the tallboy is a lacquered stud box inset with gold leaf flowers. It appeared in my hands underneath many layers of grime and dirt. I had salvaged this dingy piece of junk from my father’s garage as we cleaned up all the accumulated treasures of a lifetime of memories. By the time I had washed and scrubbed it clean its beauty was evident. It had belonged to one of my great grandfathers and now has been given a new lease of life.
It has given me a great deal of pleasure to have created such a friendly atmosphere with all my sewing and renovations. The smile stays on my face as I walk into this room each day and I am already planning additional makeovers for the other rooms in the house.
Shades of lavender
The lounge room was next on my list. After moving the furniture around to give a new look to the room, I decided to update the soft furnishings. The coarse open weave scrim in tones of oatmeal and brown that covered our windows was replaced with fresh white voile and smoky blue draw curtains. To complete the ambience, I made swags and ties, and cushions for the couch in shades of lavender, blue, pink and green. By placing our large mirror opposite the window, the room now appears twice the size and the garden reflection repeats the colours inside and outside the house. I love to spend time in this light and sunny room and through the open windows the various scents from the garden drift in on the summer breeze. The perfume of the roses and the aroma of the lavender bushes fill the room and overwhelm my senses.
Rites of passage
There is plenty I can do in my local stroke group and as a committee member of the Stroke Association of Victoria I am kept fairly busy. With Alli’s help I became the editor of the quarterly newsletter of the Stroke Association of Victoria. I also served on a committee to update the corporate image of the Association.
I accompanied Gillian on many of her trips to visit other stroke groups around Victoria. I went with her to the Alfred Hospital. We were given permission to visit all new stroke patients and encourage them and their families with our stories of survival. We were also invited into a number of nursing homes to inform the staff of the many needs of the stroke survivors in their care.
Gillian and I would often visit stroke survivors who had contacted her, just as I had. We spent time listening to and encouraging both the survivor and the carer so they could achieve the very best outcome that was possible. I also did these visits alone, but found it was more beneficial if we went together as we could engage each person separately and learn of their individual concerns.
The carer’s greatest concern was in trying to juggle the role of the loving supporter while supervising the rehabilitation and at the same time the need to manage the family responsibilities. There was certainly a need for assistance for the carer and to have a strong support system working with them. It would be an invaluable service to offer all families affected by stroke the opportunity to partake in life coaching sessions to enable them to learn how best to manage their altered life conditions. Strategies to assist them in coping with a change in the family dynamics would make life easier. A balance must be arrived at where the carer can be supportive and encourage independence in the survivor, and yet not be swallowed up by the demands made of them. Carers contribute so much to the welfare of the stroke survivor and it is important that governments recognize this and give greater assistance to these willing workers. Their mental health and physical wellbeing are essential in maintaining the standard of living for their charges.
The survivors told us of their desire to be independent and their feelings of frustration when they were unable to do so. The depression that follows the realization that they can no longer do their normal activities has to be addressed promptly. The work of the Stroke Association of Victoria is paramount in helping both the survivors and the carers. The motto for this group is Never give up.
The Croydon Stroke Support Group that I attend is for stroke survivors and for carers. At the meeting, a carer can spend time talking about their own experiences with other carers and sharing their strategies. Or a carer has the opportunity to speak to one of us as survivors to find out how we have managed a particular situation. For the survivors, there is the opportunity to gain insights into how we have tackled the obstacles in our lives. Just being with others who have had similar situations that we can identify with allows us to realise that we are not facing this alone. We no longer feel isolated or different and know that the others understand how we feel.
Part 13
Isaac
One situation I found hard to tolerate during my rehabilitation was the attitude of some of the professionals that I met at this time. I know I had some brain damage, but I was not mentally deficient. I felt disappointed that I was only given repetitive exercises to do. Having to screw nuts and bolts together only to then have to unscrew them again destroyed any sense of achievement that I might have had, Mentally stimulating challenges that exercised my mind as well as my body would have given me a sense of pride in myself.
My physics training tells me that Newton’s Third Law of Motion defines that work is done when the point of application of a force moves in the direction of that force. In other words, if there is no movement or progression, there is no work. If you keep hitting your head against a brick wall and the wall does not move, you have not worked. All that you have achieved is a splitting headache. Yet in all the effort that I undertook I never moved forward. My self-esteem would have been uplifted if some of the bolts and screws I had laboriously connected together had stayed together. They could have formed part of a toy or a useful appliance instead of being recycled for the next person.
Maybe each of us could have been given a crochet hook, or a pair of knitting needles and some wool and been encouraged to produce something useful. Knitted or crocheted squares could be sewn together to create a rug for a nursing home or sent to World Vision for a needy child in a refugee camp. Comfort bears, scarves or small jumpers could have been introduced into our program as homework pieces. The knowledge that we were helping someone less fortunate than ourselves would have given us a great boost to our confidence and proof that we could still be useful.
Walk in my shoes
I believe it would benefit all physiotherapy and occupational therapy students if they were given the opportunity to experience for themselves how our deficits affect our lives. Part of my training at Peter MacCallum Institute had been that as students we were to understand what it would be like to be one of our patients. We had to tolerate lying on the treatment bed, perhaps with our heads immobilized with heavy sandbags to prevent any movement on our part, while being wheeled into position under the large x-ray machine. We learnt how it felt when someone accidentally bumped the bed. An overwhelming sense of dread spread over us when we saw the huge machine hovering over our bodies. It cert
ainly taught us to be considerate of our patients and aware of their fears. We knew we had to be careful moving the bed around and not jarring the nerves of its passenger. We could identify with the disorientation that occurs when one is lying down and is unable to see where they are going. Understanding how our patients felt gave us greater insight and we could empathize with them.
If it were possible for all the current Physiotherapy and Occupational Therapy students to only use one hand for a day, they too might gain in understanding how a stroke survivor carries out his daily tasks. If the dominant hand of each student was constrained into a clawed position for twenty-four hours and the students were expected to prepare and cook a meal, cut up their food and feed themselves, shower and dry and dress themselves they would learn some valuable lessons. More difficult to organize, but never-the-less useful would be to attach a thin blade, like one on an ice-skating boot, to the sole of one shoe and the students would have to balance themselves on this when they walked around.
Practical and helpful suggestions to make life easier for stroke survivors would be most appreciated. Offering advice that makes moving around more difficult and dangerous is not in the best interests of the survivors. One Occupational Therapy student suggested to one of my friends that she should rearrange her efficient kitchen layout, instead of the safe environment where she could move around without her walking stick in her one functional hand. The student considered that by moving the refrigerator further away from the bench therefore increasing the distance the stroke survivor had to walk unaided, the more she would benefit from the imposed exercise.
Cheers
Once when I was speaking to a group of recent stroke survivors, I emphasized the importance of continuing their rehabilitation at home. They had now finished their time of being supervised by the various physiotherapists and occupational therapists at this community health centre. It was time for them to take charge of their recovery and to do it without support.
I reinforced the necessity of continuing to do the exercises they had been given to do. However, unless they understood the reason behind each exercise and its relevance to their recovery, they would most likely forget to do it. One exercise I suggested they continued with variations was in having to lift up a glass tumbler and then put it down and repeat these actions over and over again. Instead of using an empty glass, I proposed that they do this exercise with a small amount of wine or beer in it. After ten or more repeats of the exercise they could reward themselves with a sip of the drink. The group responded enthusiastically to my suggestion and cheered loudly. However, the staff was horrified and shocked by my words. ‘You will turn them all into alcoholics’.
It is very important to set realistic goals for ourselves to keep us motivated. We also need to reward ourselves when we have faced these challenges and conquered them rather than berate ourselves for a poor performance. It might take some time to see an improvement, but we still need to keep on trying and not give up because we set our expectations at too high a level.
Our lives have been compromised by our strokes and we have to live within our abilities, but we can test the boundaries every day and challenge our limitations. It may work, it may not, but we need to try and never give up or settle for anything less than our very best selves.
Part 14
Detour
I had almost completed this book when I began to explore the idea of publishing this manuscript. My initial purpose in writing this book was for my husband Graham to read it. As an engineer he was a very practical man. Only what he could see with his own eyes was real. If he did not see it, it did not exist. Because my deficits were invisible to him, he determined that I had none. I had hoped that my story would give him insight into what I still felt and what was still missing for me. Every time we met old friends or new acquaintances he would proudly announce that I had had a stroke but was now completely recovered from it and that I had no continuing disabilities.
Unfortunately, he never had the chance to read my words. In June 2002, Graham was diagnosed with cancer and my priorities changed immediately. The family all rallied around to support him. Surgery was suggested as the best option and we went ahead with this in the September. The report from the surgeon was very hopeful. He told us he had successfully removed all the cancer and that Graham had a good chance of beating it and having a full recovery. At the three months post surgery review we all held our breaths and were thrilled to hear that there was no sign of the cancer returning and all the tests were clear. Graham was looking fit and well, working again and enjoying life with his beloved CFA and our family.
As the six months review drew near we were quietly optimistic although still slightly anxious. The doctor had told us if every test was clear at this time it was likely that the cancer would not return at all. Our joy at being told that all tests were clear and that there was no evidence of the cancer was overwhelming. We left the doctor’s rooms in high spirits. The surgeon had reassured us all was well and to plan ahead for the future. Graham was planning to finish up his work and retire in the next couple of months. We raced out and bought ourselves a new caravan, ready to take with us on our extended trip around Australia. Our old caravan had done its duty taking our large family for many unforgettable holidays throughout Victoria. Now we could enjoy the luxury of a caravan built for only two.
We decided first though to visit our daughter Fiona and her husband in California and enjoy a leisurely time in the Napa Valley tasting as many as possible of the local wines. Then off to the Canyon Lands by car to explore the incredible scenery I had discovered there earlier. We had been invited to stay with friends in Chicago and had mapped a course across Canada to Alaska and a sailing down the Inner Passage passing by the glaciers and the small islands that dotted our route. Our passports were in order and we were counting the days to the start of the rest of our lives.
It came as a great shock to all of us when six weeks after being given the good news that he was free of cancer that Graham suddenly and unexpectedly died. He was gone and the bubble of our hopes and dreams burst around me exploding into tiny fragments. My expectations for our future evaporated in a moment.
Dark days
The dark night of bereavement and grief settled down around us. As a family we all gathered together to help each other through this sad time. The families returned from overseas. Sandra and her family from Samoa and Fiona and her husband from America came to join with us in this time of mourning. We managed to gain support and strength to survive those first days comforting each other as we had to come to terms with our loss. The daughters had lost their father and the grandchildren had lost their Poppa. It was hard for me to come to terms with the fact that I had lost my friend of forty seven years and my life partner of forty years. There had been no time to say our goodbyes or even any awareness that time was running out for him. So much we had wanted to say now could never be said. It was all too late. I felt so lost and alone. I revisited how I felt when I had had the stroke and relived the pain and suffering of loss and death of the old self.
All the colours of my life drained away. I felt I needed to hide away and took to wearing only black clothes just like the stagehands in the old Chinese operas. They were always present in the background, moving the sets around but appeared invisible to the audience. The latter’s attention was held by the colourfully clothed actors and followed their actions. The stagehands in their black outfits did not exist and neither it seemed to me did I. The blacker and larger my clothes were, the easier it was for me to become lost in their depths and disappear from sight.
It took some time – months not days – for Rae and Alli to try to persuade me to introduce some colour into my life and to learn to celebrate that I was still alive. I realised I felt cheated. I had waited so long for our retirement when we would be able to have time to do all the things we had planned and now it was never going to happen. I believed Graham would be feeling even worse than I felt. I was still here and therefore c
ould still carry out our dreams but for him they were gone forever. We had thought we had at least another twenty years of life expectancy ahead of us. Now the grandchildren had no Poppa but at least they had me to continue our relationships.
Memories of our life together would come flooding in unannounced and I would feel myself turning around to share that thought with Graham only to realise he was no longer here to share it with me. Those memories were mine alone now. If I wanted to share memories with others then I had to share experiences with them. I would have to start living again and forging new relationships with the family.
Silver linings
Life goes on for the living even if we wish it would not. The sun still rises each day and sets each night, and no matter how hard I try to hold my breath, I still keep breathing. The first few weeks after Graham died are still a blur. I have no idea what I did or where I went. However, as the days passed by I realised I had to start looking for some positives in our lives.
How incredibly lucky that Graham, two weeks before he died had had the opportunity to be present at Latrobe University for the conferring of degrees. Our daughter, Fiona was presented with her Doctor of Philosophy qualification. We have some wonderful photographs of the two of them together. Fiona dressed in her brightly coloured academic robes and her floppy black velvet beret and her father with the broadest smile lighting up his face.
How blessed we were that his death had been so sudden. He did not have to experience the chemotherapy and its harrowing side effects. We had been spared the heartbreaking time of perhaps watching him slowly succumbing to his cancer. Dying a little every day before our eyes and knowing that we were helpless to change the outcome for him.
His death was swift and terrible without any of us having the opportunity to be with him or to have a chance to say goodbye. It still upsets me when people around me complain about the discomforts of aging. They are depressed because they can no longer do the various activities that they once could do. My response to these unhappy souls is that getting older is better than the alternative. At least you are still alive.
Left of Tomorrow Page 13