Part 12

Seize the day

When I first had the stroke its effects filled all my thoughts and every moment of my days. It was there when I woke in the morning and as I struggled to climb out of bed and endeavoured to follow my normal routine. It never left my side or my consciousness. Over a year after my stroke – that big detour in my life – and I wonder if I am back on track, following my ordained course. I glimpse back at this unfamiliar and difficult path to see how far I have progressed along it.

One day I visited a new stroke survivor with Gillian. The first questions he asked of us were how had our lives changed since we had had our strokes?

‘Did we have a new or profound insight into life? Had we had a religious experience?

How had we come to terms with our altered selves?’

I thought about this, and although I had not had a near death experience, consciously I knew that I could have died and my belief in my own immortality was being tested. What first jumped out at me was the concept of procrastination. No longer do I put off until tomorrow all the joyful things that I could do today. I look around our house and realize that I have indeed been practicing what I preach.

I decided to update our bedroom with new curtains and a doona cover to set off and complement our beautiful new bedroom furniture in Australian hardwood. What better time was there to do it but now. I chose brocade material in antique shades of olive green, gold and a dusky rose. I made a bedspread, pillow cases, cushion covers, and swags and ties to go over the new gold curtains. New pictures on the walls, a gold and cream mirror and cream lampshades put the finishing touches to the room. With a new outlook on life I deserved a new out look.

Old favourites

Graham’s teddy, his birth present and my 100 year old doll take pride of place on our new tallboy. Edward Bear Esquire, or Ted for short looks a bit worse for wear after all these years. Perhaps we should call him Fred Bare (thread-bare), as he is thinning out in a few places, but that would be cruel. Even his growler still works after all this time. However, his voice is a little huskier than it was when he was just a young cub.

I received my porcelain-faced doll for Christmas during World War II. New dolls were not available for purchase. Only essentials for the war effort were being produced and no politician would ever consider that a doll was a necessary item. Plenty of little girls, if they had been consulted would have disputed this logic but nobody listened to them.

My mother had scoured the papers and answered the advertisements and at last managed to procure two secondhand dolls, one each for my sister and me. Unknown to us, as we slept each night, she created a wardrobe of clothes for the new additions to the family. With ration books and little coupons to be exchanged for the necessities of life, there was no category for doll’s clothes. Mum cut up part of her wedding gown to provide the material for a bridal outfit for each of our dolls and fine white sheeting, trimmed with tiny pieces of lace was fashioned into their underwear.

We could not believe our good fortune on Christmas morning when we beheld our beautiful dolls. We were even more amazed when we discovered that there was actually elastic in their panties!

‘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.