Writing Illness, Writing Life

‘Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well  and in the kingdom of the sick.’ 

Illness as Metaphor, Susan Sontag


In 1984, my viral friend, the Human Immunodeficiency Virus (HIV) entered my life. For the next eight years, I was asymptomatic with no physical symptoms at all. From November 1991, my health degenerated. For the next seven months until early June 1992, I lived with a range of illnesses: infected salivary glands, shingles, Vincent’s Disease in the gums then shingles again. My weight went from 80 to 59.6 kilograms. I became a Biafran refugee from the 1960s Nigerian Civil War.

During those months, a lump, five or so centimetres high, grew on the rear of my tongue; I’d dubbed it Mount Vesuvius. It turned out to be a tumour and, in the middle of June, I was diagnosed with my first non-Hodgkin’s Lymphoma.

One wren-blue June morning, I sat up in Bed 3 in 17 South, the ward for people living with AIDS-related (Acquired Immune Deficiency Syndrome) conditions at St. Vincent’s Hospital, Darlinghurst, an inner eastern suburb of Sydney and decided  to write my story.

Since the late 1970s, I’d collected personal papers – letters from gay and lesbian friends, leaflets advertising gay dances at suburban town halls, posters detailing demonstrations – that represented my involvement with the gay and lesbian political and social movements.

With the diagnosis, the enthusiasm for collecting pieces of paper resumed, but took a different fork in the road of my life. From that time on, I kept reports of blood tests, copies of time sheets showing sick leave from work, letters from doctors and keeping a journal. 

All these words on these texts told stories; all these consonants and vowels were useful for filling the silences of history with the stories of individuals and communities affected with and by the HIV pandemic.  

For several years after the diagnosis, I delayed recounting the tales of my journey with HIV. The reasons for this deferral were curious as I only partly understood the delays in the flow of creative juices spilling onto the white pages. At the same time, I did understand some of the reasons. One was laziness and other slow-moving activities in all their permutations. Another set of reasons were distractions like paid work and washing the toilet bowl and interventions like falling-in-love.

In 1995 and 1996, I made starts on my memoir, its working title, Notes from the Devil’s Sidewalk. It was named after a line of lyric, ‘You just landed on the devil’s sidewalk’ from the song ‘Devil’s Sidewalk’ by Graham Parker and the Rumour.   

But the primary reason for the lag was some kind of inner inertia, an inability to clean away the accumulated grime from the windows of my memory and, at other times, an incapacity to describe the emotions as if the hinges on the wooden shutters covering these windows were fused tight.

In a repetition of history, I was diagnosed with a second non-Hodgkin’s lymphoma in the rectum.

It was 1997. February. Just after my fortieth birthday.

Once again, a life-threatening condition entered my life without an invitation like a gate-crasher at a private party.

During the four month’s convalescence, I started the memoir again, this time progressing further than previously. Even for a third time, the occasion was not right; ultimately, my energies flagged. In part, this was due to the effects of a short course of chemotherapy and, in part, due to studying part-time at university, travelling two-hundred and fifty kilometres there once per week then returning home on the same day.

With these attempts, it was as if I knew the words on the page were too thin to represent these experiences, as if the writing could not cope with the responsibilities of representation. In the end, I always heeded the advice of an intuitive voice reminding me that the time was not now.

Two years later, I made several more starts on the memoir. Again it was not the right time. Possibly even these attempts were still too close to the time of their occurrence. I felt that it wasn’t a matter of time healing, but more of time revealing that this procrastination was necessary, that I required more time to describe these life-threatening conditions and the deaths of friends.

These extra years also highlighted that I wasn’t comfortable with memorialising these memories on the page as intuitively I felt it was another kind of passing, another kind of death and that I needed more weeks and months to attain a certain kind of detachment. 

In 2002 and 2003, I was awarded the Northern Rivers Writers Centre (now Byron Writers Festival) Residential Mentorship. With these attempts, I was certainly writing more, but using a hybrid form of narration: quotes, letters, short dramatic episodes and long-form creative non-fiction.

In a practical way, I was still searching for ways to write about living with HIV, to write about living with illness, death and joy, without being maudlin. A second practicality was writing about a pandemic while still living in the middle of it.  

Around this time, I read ‘Dead Ends: Notes on Self, Death and Representation’ by David McCooey, an Australian writer, musician and academic in an issue of Meanjin (Vol. 57.1, 1998), a well-established Australian literary journal.

In the essay, McCooey commented that there had been very little death in his family. This paralleled my life at that time. My only experiences with death until then were the passing of my maternal and paternal grandparents, the four of them all distant figures.

Although I knew friends and many gay community members who were ill and died, only one or two deaths affected me personally, directly. At the same time again, there was the ever-present communal mourning, the Sydney Star Observer, a gay community newspaperof those years, was full of pages with obituaries. Another facet of our community’s bereavement was well-known faces suddenly disappearing from the pubs and bars of the gay commercial scene.

Later in the essay, McCooey observed that ‘Sitting at my computer, I kept arriving at dead ends, intellectual cul-de-sacs that illustrated the impossibility of talking about death.’ In another parallel, I experienced these same ‘false starts’ with writing Notes from the Devil’s Sidewalk as McCooey felt with writing about death.

In the intervening years, I had crafted poetry in the name of HIV. I found and find this form of writing has precision and its condensed language-use represents specific moments in pithy little gems of striking imagery and words that burn our imaginations.

In 2009, I published a poetry chapbook, The Scarlet Moment (Picaro Press). Some of the poems in this collection like ‘The Scarlet Moment’ and ‘Suspension’ encapsulate luminous moments in this pandemic. For several years after the chapbook’s publication, I re-wrote a couple of poems from it as well as new ones representing junctures through my 1992 diagnosis.

In The Scent of Roses, Mary O’Hara’s account of her childhood, she writes ‘ … to be forgetful of death is to be forgetful of life, whereas thinking of one’s death is an act in which life begins once more to appear as a source of light. A man who knows death also knows life. The converse is true; the man who is forgetful of death, is forgetful of life also.’ The seed of my story was ‘a source of light’ buried deep in the loam of my memories. It followed that writing a memoir in whatever form had stayed with me for many years and that this ‘light’ was also a set of illuminations in tracking the course of the non-Hodgkin’s lymphoma as well as the revelations it yielded.

By the mid-teens, the time seemed opportune.

In 2013, I was awarded the 2014 Dorothy Hewett Flagship Fellowship for Poetry. The fellowship was a three-week residency at Varuna Writers’ Centre at Katoomba (NSW) in the Blue Mountains. The intended project was a full collection of poetry, describing the first ten years – 1984 to 1992 –  of living with HIV. During these weeks, I wrote a number of poems, thus starting a collection.

However, with more time to reflect at home after the residency, I realised that poetry was inadequate to represent the wider scope of these experiences. Then I went full circle back to the hybrid form: poetry, letters, journal entries, long narrative and quotes.

At this point in time, the poems I’d written were put to one side as the memoir became my primary goal. In May 2014, I was the recipient of an Australia Council writer’s grant. This was a wonderful development as it literally bought me time to write. At the same time, it caused a degree of panic. It forced me to sit down every day (I did and do mostly anyway) and write to produce something.

Writers are readers; or should be; yes, should be. It followed that I read widely through all these years (and continue to do so), but especially as a part of the grant period. For example, I read all the Australian memoirs written in the name of HIV. Holding the Man by Tim Conigrave and Take Me to Paris, Johnny by John Foster were (and are) my favourites.

It was through reading widely that I stumbled on a peer-reviewed essay that was revelatory. In ‘Breaching the Social Contract: The Migrant Poet and the Politics of being Apolitical’, Danijela Kambaskovic writes about ‘the ghoulish categories relevant to every migrant’s life: trauma, nostalgia, non-belonging, ‘ghost identities’, the conflict of smugness and survivor’s guilt, the need to speak up … and to not speak up (96).’ Her words jumped from the page, lit my eyes and illuminated the pitch-dark ‘inertia’ of the last many years.

She writes further that ‘Trauma sits in the soul as an experience which is impossible to talk about, an event too big and unwieldy to articulate, and the traumatised person struggles with the process of talking about it, then gives up, feeling that the experience will be diminished by the inadequacy of words.’ (101)

Yes, yes, yes, I thought at the time. That’s me. Why didn’t I realise this years ago? Her observations connected deeply to ‘the deferrals’, to my words being ‘too thin, too fragile’. I’d perceived of myself as being  ‘greatly affected’ by the events I’d lived through, but never ‘traumatised’. It was a word that I didn’t entirely relate to and still feel ambivalent describing myself as this. Yet it did give me a greater understanding of my lack of writing process..

I started the grant period on 1 July 2014, wrote every day, and finished at the end of October 2015. I acquitted the grant in January 2016.

I now had a 90, 000 word manuscript of various forms of writing, tentatively titled Fragments through the Lurghi.

But again, I was still dissatisfied with cross-genre form or ‘mosaic’ as I described it. I finally realised that long narrative, as most memoirs are written, was the optimum way forward. Over the next two years, I made a couple of major structural changes to the manuscript. One was changing the journal entires either by deleting some if they didn’t convey anything important or creating a dramatic scene from the bare bones of the entry, that is, dialogue, character, setting and so on.

A second change was the receipt of my medical records from the Taylor Square Private Clinic in Darlinghurst, Sydney from the mid-80s to the early noughties. This was a very significant structural change. I not only had to portray doctor’s appointments as interesting and vibrant episodes, but this documentary evidence challenged and, at the same time, alerted me to the inadequacies of my memories.

And this is where the slipperiness of memory comes into play. I’d already had a stand-alone memoir called ‘Welcome to the Club’ published in Meanjin in 2010. This piece described the first twelve months (12) of living with HIV and was based solely on my recollections.

Yet memory is a trickster. She is unreliable, slippery, random. He plays jokes with each of us. They lean back in the lounge and laugh as we, as you, as I claim with absolute certainty, with absolute surety that a  snippet of conversation or the colour of a car that turned the corner on that fateful day, happened.

Well, sometimes a recollection is accurate; sometimes it is askew; sometimes it’s recollections of several memory threads rolled into one.

By October 2017, I had a 74,000 word manuscript; this had had numbers of partial edits. At the end of the year, I had Fragments edited by a professional editor. She wrote a lengthy report and suggested more alterations. One of these was that I wasn’t talking about myself enough and a second was to think of myself as a ‘character’ in my own  book. The second suggestion did feel a bit strange. I felt as if I was constantly hovering above myself and watching my own life as a movie.

So off I went again, renaming it, Fragments through the Epidemic. In March 2018, I started the Post-Manuscript Assessment draft & completed it in September 2019. And yes, it was edited twice completely by myself and partially by a mentor through the 2019 Olvar Wood Mentorship (Queensland Writers Centre).

Back to poetry! Through 2018, I did a paid mentorship with Mark Tredinnick, a well-known Australian poet, essayist and teacher. At the end of twelve months of intensive work, I had the manuscript ready for my second poetry chapbook, Conspiracy of Skin (Ginninderra Press, 2018). In September 2019, it was awarded a Highly Commended in the prestigious Wesley Michel Wright Prize for Poetry (Melbourne Writers Festival).

As of now, Fragments through the Epidemic is a memoir, a slice of my life. It is a collection of my memories, structured chronologically and in episodes of varying length, of the first ten years from 1984 to 1992, of living with my viral friend, the Human Immunodeficiency Virus or HIV. At 92, 386 words long, it awaits the light of day for a publisher.  

Do you have something to say? Submit to The Write Life.

About the contributor

Related Articles

How to be a writer. Write.

Susan Lago who teaches composition and literature at CUNY / Queensborough Community College on how to become a writer.

Altered imagery

Warren Paul Glover is a British-Australian screenwriter, playwright, poet and actor, living in Sydney, Australia.

Glykerini with Lemon

Sophia Kouidou-Giles explains how 'the key is in the stops and starts' when translating.

LEAVE A REPLY

Please enter your comment!
Please enter your name here

More Like This

Don’t Kid Yourself! by Mike Smith

Writer, poet and playwright, Mike Smith discusses the power and pitfalls of ambiguity.

Becoming a wing-thru: Part 6 – Finding Self and Avoiding Wastage

The penultimate part of Sarah Leavesley's 7 part essay, Becoming a wing-thru.

20 books from the 1920’s that you should read

Dave Kavanagh selects 20 favourite books from the 1920s.

Green Horses on the Walls by Cristina A. Bejan

Historian, theatre artist and poet, Cristina A Began explores the background to her poetry and explains what she hopes it will achieve in the future

Active Voice

“I read your story”, my friend Richard told me last week, before pausing to add, gently, “Is everything OK?” I’d sent him...