Creativity in an Online Community as a Response to the Chaos of a Breast Cancer Diagnosis

IntroductionA catastrophe is often considered to be a final decisive event, resulting in a disastrous end. Two recent examples of catastrophes satisfying this definition were the 2012 super storm Sandy in the United States of America and the 2011 floods in Brisbane, Australia. The progress of these disasters was reported worldwide, yet coverage soon disappeared from the headlines, leaving people to deal with the aftermath of rebuilding homes, businesses and lives. The diagnosis of breast cancer is an individual’s catastrophic event. While not on the community-wide scale of the disasters mentioned previously, it can have disastrous effects on the individual as well as their family and friends. At the moment 1 in 8 women can expect to have a breast cancer diagnosis. In Australia alone this means approximately 1,375,000 people are likely to receive this diagnosis in the course of their lifetime. This article addresses how breast cancer can and does prompt women and their supportive friends, families and partners to become more creative as a result of the breast cancer (BC) diagnosis. In these cases, creativity—defined as doing something a little differently or thinking outside the square—can offer some remedy for catastrophe. Becoming totally involved in the creative moment, so as to lose all track of time and forget the trials and worries of BC, is referred to as flow. Flow is an “optimal experience” in which “people become so involved in what they are doing that the activity becomes spontaneous, almost automatic; they stop being aware of themselves as separate from the actions they are performing” (Csikszentmihalyi 53). This is one fruit of the creative process. This article refers to women as having breast cancer because the majority of people diagnosed with BC are women. However it is acknowledged that men constitute 0.8% of the total number of people diagnosed with BC (Breast Cancer in Australia). Responding to public concern, a range of charities has been formed to support people with breast cancer. One such charity is Breast Cancer Care WA (BCCWA). Together with the Australian Research Council (ARC) and Edith Cowan University (ECU), BCCWA supports an online community for people with breast cancer, Breast Cancer Click (Click). The membership of Click includes several male Clickers who are partners and supporters of Click members with BC. The Click online community consists of people with BC and their supporters, as well as health care practitioners and researchers. Those members with breast cancer are very interested in learning more about BC and supporting others in a similar situation whereas the health care practitioners and researchers are both supporting those with breast cancer and exploring the possibilities offered by online communities, to enhance their professional skills. Members of Click could be described as a community of practice, “groups of people informally bound together by shared expertise and passion for a joint enterprise” (Wenger and Snyder 139), in this case a passion for responding positively to a BC diagnosis. Wenger and Snyder go on to say: “People in communities of practice share their experiences and knowledge in free-flowing, creative ways that foster new approaches to problems” (140). The Click community helps foster creativity.Many of the verbatim quotes used in this article are taken from the www.breastcancerclick.com.au (Click) website. Instead of identifying a speaker with a personal attribution the term “Clicker” is used, and then qualified as a Clicker with breast cancer (BC) to differentiate the author from a Clicker who supports someone with breast cancer (Supporter). The Click website provides every member with an opportunity to express themselves and they often respond creatively to the challenges that confront them. The Chaos and Catastrophe of a Breast Cancer Diagnosis When a woman is first diagnosed with breast cancer, it is often as a result of her bi-annual mammogram. She expects a routine visit but is advised instead that she requires further investigation because abnormalities have been detected. This is not what she expected. Probably all previous mammograms have been normal. The personal catastrophe occurs when the woman receives a definitive diagnosis of breast cancer. Chaos is added to catastrophe as the patient and her family struggle to grasp the meaning of the diagnosis and the multiplicity of treatment options. For some, the diagnosis is quickly followed by another catastrophic event, the removal of one or both breasts. For others the catastrophe occurs by increments. This is evident in a member’s blog on the Click website,More surgery [...] dammit!!!!!!!!!! I just want this over NOW. The whole lot. I want my hair back, I want my working life back, I want the smile back on my man's face. I want ME back. I want to dance again. I want to have a conversation with friends that doesn't include my diagnosis or prognosis [...] short term, long term [...] any bloody term!!!! (Clicker BC) People with a breast cancer diagnosis do not always have an endpoint in sight, or an acceptable endpoint at all, and the chaos of treatment and recovery is focused on coping with the present and the next treatment on the horizon. This Clicker uses her blog to help her deal with the next stage of a seemingly interminable round of surgical and chemotherapeutic procedures which have thrown herself, her family, her friends and her work life into chaos. Other Clickers immediately responded to her angst with messages of support and understanding. Had this clicker not written a blog, she would not have received this support and consequently she may have coped less successfully with her treatment. Given the chaos and catastrophe inherent in a breast cancer diagnosis, what else can individuals do that makes a positive difference to their lives as they deal with the “treatment, wait, check” cycle that is the medical response to breast cancer? Creativity Arising from Chaos When people receive a life threatening diagnosis such as breast cancer, they sometimes choose to think outside the square, to do things a little differently, to change the way they relate to others, to learn a new art or craft or to take up a musical instrument. Being creative seems to provide distraction from the treatment, and may be something to look forward to when the treatment is over. Some choose to participate in a formal creative therapy program, others seek out a creative pursuit which they can do at home. For some women with a breast cancer diagnosis, joining the Click website is itself a creative act. Contributing to an online community with a common interest in BC which gives them unconditional support, such as Click, also provides them with new skills and allows other people to benefit from their advice and experience: Hi everyone. I know we all have different ways of dealing with our cancer. Mine has been to be more mindful of the wonders around me and savour every possible moment of joy. I have decided to start my own Blog to give myself a creative outlet and share my experiences. (Clicker BC) There may be a number of reasons for participating in an online community of people with breast cancer and their supporters. Whatever the motivation, it requires a person to think laterally and learn new skills in how to navigate and post to a website. A newbie member enters a relationship with people she hasn’t met. She can choose to create a new persona using an avatar, or simply devise a username which represents her online. Creativity, Click and Flow Susan Nesbit, an Associate Professor in the University of Manitoba’s occupational therapy department, was diagnosed with BC in 2000. She used “everyday creativity to maintain a good attitude and positive spirits” and refers to Csikszentmihalyi’s concept of “flow” to explain the gratifying experience which occurs when someone fully participates in an activity:that I am doing it for its own sake, and when I become so involved […] that I become spontaneous and almost automatic, I am experiencing flow. My energy flows smoothly, I feel relaxed, comfortable, energetic and totally absorbed, losing track of time. (Nesbit 63) Richards (489) describes creativity as having two conditions: one is originality and the other is meaningfulness. She argues that everyday creativity “in the multitudinous activities of day-to-day life […] has been conceptualised as a survival capability” (489). Click allows members to share this everyday creativity, inspiring a creative response in others. One Clicker (BC), who produces handmade cards at home, was inspired to hold a Skype card-making education session for rural and remote people (with and without BC).Today is a day of craft for me. I held my first remote workshop […] and it was a huge success. Just made a couple of Father's Day cards for a customer and decided to share some of my work with you all. I'd love you to take a peek at my album [...] doing what I love to do was and is my therapy to get me through each new crisis xxx. (Clicker BC) It seems this Clicker first achieved flow through the act of making cards for her own pleasure and then maintained that flow through the planning and execution of an online card making class, which was a great success. She found something that helped her to take control of her life and to live more fully and at the same time gave others the opportunity to do the same. The success of this session might inspire this Clicker to conduct more sessions for others, while those attending the session who may be battling a serious illness, might also achieve flow through absorption in the card-making process, then maintain flow through the positive responses they receive from recipients of these cards. Ripples in this online creative space reach out towards a widening pool of card makers, assisting them to cope with chaotic occurrences. Creative Therapy

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