David’s Story

Telling Your Story

A Positive Speaker learns about autobiographical storytelling

As a positive speaker with Hepatitis SA, I relished the opportunity to participate in a two-hour online workshop titled “Telling Your Story”. It was delivered by Jenny Valentish, a well-known journalist and author of the book ‘Woman of Substances,” which investigates the female experience of alcohol and drug use. In this 2-hour online Zoom workshop, participants were interested in expanding their creative skills and increasing their knowledge, while collectively expanding their personal and professional toolkit. Valentish’s presentation focused on building capacity for workers in the Alcohol and other Drugs (AOD) fields who were interested in exploring the therapeutic power of writing stories to

support clients to then tell their own stories. There was also an abundance of content for those considering telling their own personal story, which was my main interest. As a woman now 62 years of age and “nanny” to three grandchildren, I find myself telling them endless stories from my past: memories from my childhood, the valuable lessons learned, powerful quotes and the values my parents instilled in me—all these contributed towards building positive character. I clearly recall that whenever my father taught me a lesson I usually felt lectured or preached at in a way I resented. As the storyeller to my grandchildren, I am mindful of delivering in a different manner so they can respect and appreciate, as I now do, those valuable lessons and precious times.

Valentish says there are many reasons why we tell stories. We tell them to be heard, to pass on wisdom, to gain perspective and to document information that may be useful later. As a Hepatitis SA Positive Speaker I tell my story to educate others, pass on experience, share knowledge and as a way of making sense of past decisions or choices that were not always the wisest. Taking responsibility for your actions and your past regrets, and having control over how your information is presented or remembered is important. Valentish spoke passionately about “writing from the scar, not the wound”. Most participants related well to this metaphor and this is something I have grappled with before as a speaker. Is it possible to overshare and have too much detail? And how can we be careful not to relive the trauma or shame within the story over and over? I think this is a concept that you need to explore and be comfortable with before you share or write your story or support clients to do the same. This may alter over time as you change, your children grow up and your parents pass on and the lens you view the world through expands. A useful indicator for me is, who is the audience and what are they looking for? Balance this with your vulnerability and generosity of spirit. There was a list of memory prompts provided as part of the presentation to assist with gathering information for stories which I found very useful. They included ideas such as music, Google Earth, medical and criminal records, other people’s recollections, and priorities or turning points at key times or ages throughout your life. How you structure your story can be done chronologically by utilising a timeline to work from, or you can write about a theme and pick the parts that fit under each anecdote. The term “crusades” was described by Valentish as a way of keeping on track when writing a story. It is a technique to ensure you keep referring to and checking the focus on those key points throughout the writing. Narrative therapy was presented as a useful way for the writer to reflect on the dominant narratives that are used to tell a story. There are comments that can give yourself a hard time, such as, “I am a bad mother”, “I always fail”, “it is all my fault”. The idea is to deconstruct these negative thoughts and instead look for and practice finding your resilience, courage and strength. Other practical advice Valentish spoke about throughout her presentation included the use of humour, writing in the third person, utilising a theme, considering a description in the form of a review, and the use of

metaphors. These are all potential ways of presenting your story. As everyone’s story is unique it is necessary to consider focusing on what works best for you and your style of writing. Other tips suggested were to be sparse, don’t run away with your internal thoughts and lose the reader, recognise that a reader can read between the lines and work it out without excessive explanation, and avoid creating a ledger of bad deeds by repeating yourself and focussing on a story of shame. Valentish advised that there will be many drafts before you are satisfied with the final version, and that it is then a good plan to ask people you trust to read your work and provide feedback. The story’s opening can describe the most exciting moment that hooks in the reader right at the beginning, or that you can leave the cliffhanger until the end, but such decisions will depend on where you want to take the reader. I really enjoyed the workshop and recommend anyone taking up this opportunity, next time it is offered. I gained a real benefit from participating in this training, sharing ideas with others and being inspired by people’s creativity. Thank you to Hepatitis SA for suggesting this workshop to me. And please visit Jenny Valentish’s website at valentish.net for further information. v

Kath Leane

David’s Story

When treatment, and everything else, goes wrong

Ihave been reading this magazine for a long time, perhaps since its inception! I have always been interested to read other people’s stories of living with hep C. The time has come for me to tell my tale. I have been living with the hep C virus for over 30 years, contracting it some time in the mid-to-late ‘80s. In my late teens and early twenties I discovered that injecting various drugs was a wonderful form of escape. My need to obliterate myself during this period was the result of having been sexually abused in my early teens by the leader of a NSW Church of England Boys Society group. After hitting rock-bottom at the age of 23, I moved interstate to start afresh. Slowly my life got back on track and my career started taking off. I felt relieved that I had gotten through that dangerous period without dying from an overdose or

contracting HIV. Little did I know there was a danger lurking inside me. During the ‘90s life just got better. I got married, my wife and I bought a house together, and my job was exciting and satisfying. I was still drinking and smoking pot, but in relative moderation. In the late ‘90s my GP got me tested for hep C and the result came back positive. It was crazy to think that this virus had been with me for at least 10 years, as I was asymptomatic. I remember attending an information evening put on by what was then the Hepatitis C Council of SA, and my GP referred me to a liver specialist. At first the specialist appointments were just monitoring my health. However, once interferon became available in the early 2000s, my specialist recommended that I undergo treatment. From my own research, and reading accounts in this magazine, I decided that the risk/ reward of taking interferon was not acceptable to me. Unfortunately, this led to me ceasing to see my specialist, as every session would be a stand-off between his recommendation and my refusal. Life continued: I got divorced, gave up pot, but kept drinking and occasionally taking recreational drugs. My job was taking me on overseas trips, and I loved it. I met a new partner, fell in love, and we had a son in 2008. As the new decade got underway, I started to hear about the exciting new drugs that were being developed to treat hep C. This eventually led to me having my GP refer me to the RAH liver clinic in 2015. Now that I had a son—I love being a father—I wanted to rid myself of this virus. There was always this feeling that at any time it could make its presence felt, and now I really had something to live for. Amazingly my CT, MRI and fibroscans showed that my liver was in reasonable shape, with only moderate fibrosis. I was one of the first to start on daclatasvir/sofosbuvir direct-acting antivirals in March 2016. My specialist put on me on a 3-month course. I stopped drinking, saw my psychologist regularly to help me keep on track, and tried to be as healthy as possible during the treatment. The blood tests at the end of the 3-month course came back with no virus detected. I was excited but I knew that we had to wait another three months to see if the treatment had been effective. I remember sitting at my desk at work after having the 3-month follow-up blood test. The phone rang and it was my specialist. He told me I had cleared the virus!! I just sat there for a while taking it in, then I shot off an email to my parents telling them of the good news. While thinking about who to break the news to next (only my immediate family and very close friends were aware of my hep C status), the phone rang again. My specialist said he had read the pathology report in the wrong chronological order. The latest results showed my ALT’s had increased again and the virus had returned. I was shattered. Instead of doing the sensible thing and continuing to see my psychologist or draw on help from those around me, I did what I had always done in times of crisis. My drinking ramped up and I stated taking drugs a little too recreationally. I could not believe I was one of the less than 5% that didn’t respond to treatment. I missed my next appointment with the specialist. However, he rang