From paralysis to prose: How I came to write a book to help you through shit times

Image credit D Kelleher

1987 – I was twenty-five years old and holed up in the intensive care unit at the National Neurological Hospital in London, stricken from head to toe with Guillain-Barré Syndrome. Symptoms: total paralysis. Prognosis: uncertain.

Guillain Barré Syndrome is a bizarre illness. It attacks the myelin sheath that transmits messages along one’s peripheral nerves. One day my toes went numb. A week later I found myself in hospital, unable to move, breathe or speak. An unscratchable itch on my leg could propel me to the brink of insanity. Dust fell into my eyes and I couldn’t blink or wipe it away. I could not call out for assistance.

Upon learning of my perilous condition, my mother had dropped everything, packed a suitcase and flown from Sydney. Now she sat by my bedside for twelve hours a day, every day.

Each night mum grabbed a few hours sleep at her friends’ house; Chrissy and Ralph were devotees of an Indian guru by the name of Swamiji. When Swamiji heard of my situation he began to call my mother and tell her of his visions for me. ‘I see yellow,’ spake the guru. The next day mum arrived at the hospital laden with armfuls of daffodils and yellow tulips. She filled all the vases in the room with them. Two days later, Swamiji called again: ‘I see purple.’ Out went the daffodils, replaced by swathes of irises. Mum herself was dressed in a purple silk kimono that she’d borrowed from Chrissy. Then Swamiji made a personal appearance at the ICU, without shoes. Through his flowing grey beard he blew into my chakras. Matron tried to hustle him from the room but Swamiji resisted her. At that point Sister Mary entered the scene.

Sister Mary had been hospitalised for an acute attack of Multiple Sclerosis but was now on the bounce back. She busied herself by ambling from ward to ward with her walking stick, rescuing the souls of fellow patients. Some of those ingrates did not wish to be saved but in me she found a compliant mark. Being fully paralysed I didn’t have much choice in the matter.

Sister Mary visited most days and sprinkled my motionless body with Lourdes water that she kept in a plastic bottle. She left a specimen jar by my bed containing some small pieces of black stuff. ‘Relics of Padre Pio,’ Sister Mary said. Not being much of a Christian I didn’t cotton on to the significance of these. I was quite taken aback when I later learned that they were bits of the charred remains of a revered Catholic priest.

Swamiji blew and Sister Mary sprinkled and as they did so the two of them fell into meaningful discussion of matters philosophical and theological. They could not see eye-to-eye about how best to save me but each of them gave as good as they got. Their conversation continued; Swamiji took to calling Sister Mary on the wheelie payphone on her hospital ward. She would then appear at my bedside in high dudgeon: ‘I had your friend Swamiji on the phone last night. He’s a very irritating man.’

‘He’s not my friend,’ I wanted to say, but I couldn’t speak.

Since I was hooked up to a ventilator, my only means of communication was by a tortuous method of blinking at an alphabet board. It was tedious and often upsetting for all concerned. Mum sat by my bedside week after week. Sometimes she read out the crossword clues and then patiently tried to decipher the answers that I blinked. But mostly she read aloud books by P.G. Wodehouse. She voiced the characters of Bertie and Jeeves and played up the ridiculousness of their awful scrapes. Mum had no way of knowing that inside my waxen, immobile body I was aching with laughter. Those books were written with a lightness and sense of the absurd that helped me to find the funny side of my own predicament.

During months of rehabilitation – learning to walk, talk, write and do everything that I thought I had mastered as a toddler – I sometimes entertained the fantasy that I might one day repay my debt of gratitude to the universe and to the NHS by retraining as a nurse. I examined the qualities required: tolerance, compassion, self-sacrifice, an ability to look at blood and vomit without fainting… and I knew the truth: that me becoming a nurse would be about as useful to the world as Tony Blair becoming a Middle East Peace Envoy.

No, nursing was not to be my vocation. But I’ve never forgotten how those long afternoons with Jeeves and Wooster helped me to escape the terror and confusion of being paralysed.

The Elegant Art of Falling Apart is published by Unbound. Follow Jessica on Twitter and follow the progress of The Elegant Art of Falling Apart on Facebook.

Recent Posts on Arts

• Children’s Books: Recommended read – 'A Monster Calls' by Patrick Ness
• Made in Chelsea – Series 5, Episode 11: Louise plays and wins at Spencer's game
• The Returned: 'Simon' - Series 1, episode 2
• Interview with Tre Mission: Grime going global
• Something For The Weekend in London: June 14-16

• Bonnielad

  I’d prefer it if the Independent didn’t feel the need to write words like ‘Sh*t’ in a headline, just to be ‘cutting edge’. So juvenile, hackneyed, and makes me feel less of you.

• leconfidant

  What is the difference between hackneyed and common parlance? It didn’t register with me as cutting-edge. A lot of the people I communicate with routinely use this word to describe something really unpleasant.

  Anyway, good article I say.  There but for the grace of god.  It was pure luck she didn’t get landed with one of the really uncaring, unfriendly nurses covered in recent articles.

• anonniemuss

  I accidentally clicked the Like button on your comment so I’m writing just to say “Shit.” It does have its place every now and then.