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Me, Myself and Lyme

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Earlier this year I launched my second novel, Anatomised, which explores the impact of Lyme disease. There’d been a nine-year hiatus since the publication of my debut novel: A Portrait of the Arsonist as a Young Man. Convention says the second book can be harder to write than the first as the author sometimes hits a creative brick wall, so a time-lapse between the two isn’t unusual. A decade, however, can start to look more like retirement than a creative break.

Anatomised was definitely much harder to write than my first book, though my problem wasn’t in the fresh-ideas department. On the contrary, I was brimming with material and raring to go – until I was bitten by a tick and everything in my life unravelled. I found myself trapped in a black-windowed, monolithic building on the corner of Survival Street at the intersection of Life and Death. The terrifying symptoms of Lyme disease were initially mistaken for many other life-changing conditions, misdiagnosed as two strokes, a possible brain tumour and multiple sclerosis. Meanwhile, the raging infection was undiagnosed and untreated. It was therefore given time to take hold, spread, cross my blood-brain barrier and even destroy parts of my brain. As my own lights dimmed, the devastation of Lyme disease lit up the MRI scanner.

Within months I lost my livelihood (fiction mentor and creative writing tutor at two universities). I lost the ability to walk, to stand, to read, to write, to even think straight. There seemed little hope of me writing anything more than my own obituary. I was forty-four, had been riding the crest of a wave, and then I was sucked under, lost to a freakish riptide.

As a novelist and historian, I’m often asked about autofiction; the place where autobiography and imagination overlap. Anatomised is fiction, but it has facts at its heart. It tells the story of a middle-aged couple whose lives are turned upside-down by a mysterious illness that threatens to crush their dreams. It explores dark subject matter, but the main protagonist is a stand-up comedian so there are lots of lighter moments as it moves between harrowing, humorous and heart-breaking.

Just before I got sick, I was poised to write a romantic tragi-comedy set on an idyllic holiday island. It was to be pure, if dark, escapism; a beach read; a philosophical “Mama Mia”; a masterpiece. In my wildest dreams it would top the Times bestseller list, be optioned, turned into an award-winning film, a standout musical, a Chekhovian play, a Netflix TV series, and I would make a fortune that King Midas would be proud of! But soon after my long brush with death, after discovering the huge and rapidly growing numbers of patients experiencing Lyme disease around the world (a majority of whom had no voice), I parked the rom-com, re-set my moral compass, shifted my creative focus, and prepared to set off in a new direction. But first I had to get better.

It took over two years to be diagnosed and treated for Lyme, and then several more years to make a gradual, if incomplete recovery. Miraculously, I started to form coherent ideas and words. Sentences flourished, paragraphs piled up. It was as if I’d risen from a tomb, like a Lyme Lazarus, and I’d come back to the living with an important story to tell. The question was: should this tale be factual or fictional, memoir or novel?

Writing a semi-autobiographical novel allowed me to safely revisit the past; to explore exactly what went wrong, and still goes wrong for Lyme patients, from shambolic diagnostic processes to denial of treatment. Mistakes were made through ignorance, accident or inexperience, at other times through old-fashioned obstinacy and obstructionism. Sadly, similar errors and misjudgments are still being made with Lyme patients across the globe – every day. Anatomised writes some of these wrongs and wrongdoers, setting the record straight in the hope things will change for the better, because they must.

The process of reliving trauma in such detail was overwhelming and exhausting, but it also provided purpose and motivation; a reason to drag my ravaged, aging body out of bed. After a Eureka moment, when I suddenly understood how the story would end, I knew I was on the right track. Ironically, although I was reinventing the past, I never looked back.

Could I have written this story as straightforward memoir? In theory yes, in practice no. The truth is Anatomised did begin as non-fiction. I initially wrote 30,000 words as memoir but I gave up. The life I’d left on the page felt dead and flat, like the tragic two-dimensional outline of a Hiroshima Shadow left on the walls of buildings decimated by the atomic bomb. I pressed delete and wrote another 15,000 words of creative non-fiction, first from the viewpoint of my wife and then a close friend. There was life in this reawakened memoir and moving silhouettes, but still there was no depth of field. Facts remained facts, cold and cadaver-like. When I sat down to write, I sank further into the quicksand of the past, experiencing what I now believe to have been post-traumatic stress disorder. Lyme almost killed me, and now I was destroying myself all over again.

On the verge of giving up on writing (if I’m honest, on life itself), I stumbled across the names of Jack and Alice Mann that I had jotted randomly in a notebook, intended as material for a totally different story. Searching for safe emotional distance, I started to write in the third-person, viewing the rollercoaster ride from their shoulders. The fictional floodgates opened. Creative lightning lit up my sky. I wrote feverishly and unfettered for a year. My imagination muscles were flexed, my fingertips burned. Never in a million years would I wish Lyme disease on another person, yet I had to give it to Jack. I watched the comedy of the Manns’ lives unravel into tragedy as if my own survival depended on it; not so much a thinly-veiled autobiography as a heavily-draped curtain on a stage (quite fitting for a forlorn stand-up). Even though Jack and Alice were imaginary, I felt a colossal guilt and apologised to them daily in my head. I still do.

It isn’t rocket science: writing is good for a person. It is self-coaching, self-counselling, self-soothing. It is selfish in its taking from the world, like a sponge sucking water, but it is selfless too in its wringing out and pouring back. Sometimes it’s even mixing metaphors, because writing is gardening for the soul. It is weeding bad things out and planting new things in. But each writer must find their own allotment, the form and shape that best expresses their voice and vision; what they feel or think most profoundly and honestly about the world they live in. For me, fiction rather than memoir is the place I most effectively hunt down truths about what it is to be a human being. Fiction allows a writer to move ideas beyond the realm of “what happened” into the exciting realm of “what ifs”. Ostensibly, Anatomised is about Lyme disease. Arguably, it could have been written as a memoir entitled: “Me, Myself and Lyme”. In novel format, I wanted to confront Lyme, but also to escape it. I needed to surprise myself as a writer, and therefore the reader. Even though dark places exist within, behind and between the pages of Anatomised, readers aren’t absolutely sure what is real and what isn’t, and that’s how it should be. A story reflects its own truth.

All writing has the potential to be liberating. You may not write the wrongs that make the whole world sing, but the process can be psychologically curative; a meditative medicine for the mind. It can provide consolation, comfort and sometimes liberation. It’s true, you can’t cure Lyme disease or other chronic illnesses or traumas with words alone, but you can share your story. You can use what’s broken to reach out and illuminate the darkness. As Leonard Cohen wrote: “there is a crack in everything, that’s how the light gets in”.

I remember the first story I had published. I’d just thrown away a perfectly successful career as a medieval historian in the pursuit of an impossible dream to become a fiction-writer. When one of my short stories won an international literary prize, my love-affair with writing fiction rather than fact took root. It began to pave the road to creative writing, lecturing posts, the publication of my debut novel, a collection of short stories, editing anthologies and interviewing famous novelists at literary events, including Nobel Laureate, Kazuo Ishiguro. I wrote that first short story under a pseudonym Cassi Hart, an anagram of “catharsis”. Fifteen years on, now in my fifties, the Muse of Catharsis has left her mark on me and on the skin of my pages, like coolness from the softest of calamine kisses. And her kiss doesn’t age.

Anatomised took four years to complete and, despite good reviews, it probably won’t appear on many shopping lists let alone a bestseller list! That’s a shame, as some of its profit will go to international Lyme charities that offer patients a lifeline. It may have been the hardest story I’ve ever had to write but the process soothed my soul, it made me wiser. It probably saved my life, and who knows…maybe it could help save others?

So, as we grow older and wiser, here’s to writing wrongs, flexing imagination muscles, soothing souls, and hunting down the truth of our lives; in fiction, in fact.

Article Copyright: A F McGuinness

Andrew McGuinness is an award-winning author. His traumatic experience of Lyme disease has formed the basis of his new novel Anatomised

Website – www.afmcguinness.com

Buy the book here.

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