A personal account of working on the StrokeLine
As a Social Work student, my University requires me to trawl through numerous theories, and then to take a postmodern approach turning each theory inside out and reinventing them. In 1954 Carl Jung cautioned that “Theories are the devil needed to orientate certain points of view but to be regarded as mere auxillary concepts that can be laid aside at any time.”
With these words of caution in mind, and a level of weariness of our society’s medical model, I was confronted by many callers on StrokeLine desperately seeking a sense of meaning through the tumult that had been thrust upon them. Reading Desney’s article in enableme I came to realise that by emphasising the unique experience of grief, and the subsequent myriad choices and possibilities that followed, allowed the individual the opportunity to construct new meanings related to their loss. These points are echoed by many people affected by stroke in books, blogs and articles written as either self-therapy or to aid others in their struggle against the lived experience of grief and loss. Emma Gee’s inspirational and powerful story comes to mind here. Of course as Desney points out “the long and often unbearable voyage through an anguished inner landscape into a newly configured meaningful world” is one not taken lightly. To me the key here appears to be a high level of reflection and later acceptance. In my personal experience these are not provided by either tertiary education or life experience, and may be understood only in part by a personal experience of terrible loss. Grief is the response to loss, and the central process of grief is to make sense of the loss through the development of meaning. Recovering stroke people grapple with this process with the sword of Damocles ‘Fatigue’ hanging not over their head but inside their head. Described to me by stroke recoverers as a brain fog not cured nor abated by rest or sleep.
Meaning making is the means by which people construct beliefs and ways of thinking that allow them to continue to live and survive in the unpredictable environment of life post-stroke. This process of meaning making is a neglected area in our present ‘selfied’, ‘spotified’, obsessed with ‘now’ society. Perhaps in the past, meaning making was the domain of religion? Although the explanation that “this is part of God’s plan” offers little solace to stroke recovery. Perhaps it was once provided by the wisdom of elders in an intimate community. For whatever reason there appears to be a void for people to either reflect or find a sense of meaning in our seemingly ever increasing complicated society. Even for those enlightened enough to have established a meaning in regard to ourselves and our world, this can be subject to fracture after experiencing a major life event such as stroke. In allowing a personal, unique and dynamic definition of meaning and achieving validation of this, a person can re-join the race to be human. At this point I think, is where the Stroke Foundation, with its resources to document stories and human ability, enters the picture. Its role is to provide not just empathy but a shared validity for all feelings associated with recognised and unrecognised loss.
Perhaps inspiration can be found in the First Australians who have suffered every conceivable loss and still persist to find meaning in the telling of powerful stories of survival and recovery.
Check out Desney’s interview and blog here:
https://www.strokefoundation.com.au/blog/2015/07/23/interview-with-stroke-survivor-desney-king