Rebuilding Jay Knight
Life after Guillain-BarrĂŠ syndrome
Rebuilding Jay Knight Life after Guillain-BarrĂŠ syndrome
By Emma Murray
This is my mate, Jay.
We used to sit next to each other at work. On Tuesdays and Thursdays we’d go for an easy five-kilometre run along the Yarra. On Fridays we had two dollar beers in the office kitchen. Sometimes on weekends we’d go to the football to watch his beloved Dees play. I left the company on the 17th of December 2012 — the day this photo was taken. Though we no longer worked together, Jay and I stayed good friends. On Wednesday the 23rd of July 2014, I received an email from Jay saying that he’d accepted a redundancy package, and had left the company in search of a change. He was busy that week but would email again soon to arrange a catch-up; just as soon as he got over the nasty cold he’d been fighting the last few weeks. I waited to hear back from him, but the reply never came...
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On Saturday the 26th of July, Jay was admitted to hospital with a mystery illness. Symptoms started on Friday evening when Jay tried to whistle for his dog, Riley, and found that he didn’t have the control over his facial muscles to do so. The next morning, eating his soggy WeetBix was impossible, and drinking was a challenge. By lunchtime Jay and his partner, Jo, were concerned enough to call a home doctor, who recommended that Jay go to The Royal Melbourne Hospital for further examination. After some basic tests in the emergency department, Jay was moved to the neurology ward for further observation. That night he went downhill. Fast. Whatever had prevented Jay from whistling for Riley on Friday was spreading throughout his body, paralysing his muscles. The weekend medical staff had suspicions about what was causing Jay’s condition, but he had to wait until the following week to have a lumbar puncture to confirm his diagnosis. Following the lumbar puncture, Jay was officially diagnosed with Guillain-Barré syndrome (GBS), a disorder in which the body’s immune system attacks the peripheral nervous system, resulting in spreading paralysis.
By this time, Jay was completely paralysed and had been transferred to the Intensive Care Unit (ICU). Unable to breathe or eat on his own, he had a tube inserted through his trachea connected to a machine that breathed for him, and a feeding tube inserted into his nose. Jay spent two months in the ICU. The illness only lasted a few weeks, but the resulting nerve damage and complications meant that his recovery would be slow. By the end of September Jay had regained slight movements in his feet and left arm, and he was able to turn and nod his head. After being sedentary for so long, Jay’s joints became stiff and his muscles wasted away. Unable to eat normally, his body weight plummeted to just 46 kilograms. From the ICU, Jay was transferred to the Respiratory Ward at the Austin Hospital, where he continued his recovery for two months — until he was able to breathe by himself. On the 26th of November, four months after first being admitted to The Royal Melbourne Hospital, Jay was able to move into the Royal Talbot Rehabilitation Centre — a specialist provider of intensive rehabilitation programs — to continue his slow recovery.
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I started shooting Jay’s life at the start of March 2015, three months after he moved into the Royal Talbot Rehabilitation Centre and seven months after his ‘bad cold’. Jay’s room is typical of a hospital environment — sterile. He personalises the space with small details: photos of his partner, Jo, and their dog, Riley; cards from friends; and Melbourne Football Club paraphernalia. On his walls hang copies of his weekly timetable — a relentless and repetitive schedule of therapy sessions to help rebuild his body. 5
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Since regaining the ability to swipe his iPad in late December, Jay has produced humorous weekly Facebook updates to inform his friends and family about his progress.
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GBS has dramatically impacted Jay’s speech. Music therapy helps bring back strength and control to his facial muscles, diaphragm, and lungs.
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The step is an important part of Jay’s rehabilitation; he has sixteen of them in his house and needs to be able to climb them confidently before he’s allowed to go home.
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In the evenings, Jay is given extra food through a tube in his stomach to ensure he is consuming enough calories. Tonight his partner, Jo, feeds him a protein shake.
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During the day, Jay’s diaphragm and muscles work together to sustain his breathing. When Jay’s muscles relax during sleep, his lung capacity decreases. He uses a respirator every night to ensure his body gets enough oxygen.
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Jay’s key health indicators are constantly monitored: heart rate, temperature, blood pressure, weight, and blood chemistry. Over the course of his illness, Jay has been jabbed with a needle over 200 times. 19
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“I can’t read any of the books in the library — I can’t turn the pages, but I like to go and look at the titles.” - Jay
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“It’s the disabled feeding the disabled! I used to get fed when I was in here, so I know what it’s like.” - Angelo
Angelo, a former resident at the Royal Talbot Rehabilitation Centre, returns for some outpatient therapy. He is still recovering from neuropathy — another type of nerve damage. Over coffee, Angelo tells me that Jay was an inspiration while he was living at the centre. “When Jay first arrived he couldn’t do anything. They had to hoist him on and off his bed like a piece of meat. To come here today and see him sitting up in his chair and moving his arm is amazing.” After coffee, the boys decide to get dim sims. Without a nurse present, Angelo has to feed Jay.
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Jay’s partner, Jo, visits him every night. She arrives straight from work — just in time to help Jay with dinner. Since Jay first fell ill, eight months ago, Jo has spent just one evening at home.
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After being fed by tubes and other people for eight months, Jay is able to eat a full meal by himself using modified cutlery and a splint. 28
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Jay does three sets of ten repetitions on the leg press. He started with an eighteen-kilogram load, and his weaker right leg constantly flared out. He now pushes thirty-six kilograms, strongly. 31
Jay steps up and walks on the treadmill without using the handles for support. 32
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In the pool, Jay moves without assistance. With the water supporting him, he can stand and walk by himself. His therapists leave him to move freely, and for an hour he is independent. 34
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With no therapy on weekends, Jay is kept entertained by a constant stream of visitors. Today a group of Jay’s old work mates drop by to see him. They sit on the deck of the Mellor Unit and reminisce about old times.
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Jay is allowed home for day visits over the Easter long weekend. The excursions are an opportunity to discover potential problems before he moves back for good. 43
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Jay’s parents fly over from South Australia to join Jay and Jo at home for Easter lunch. 45
With Jo’s assistance, Jay walks upstairs to his bedroom for the first time in eight months. His dog, Riley, watches on.
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“My boys.� - Jo Exhausted by his climb, Jay sits on his bed to rest. Riley jumps up to his lap for a pat, and Jo leans over to join in. 49
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Jay opens the door to his bedroom balcony and waves at his parents in the backyard. His Dad takes a photo with his phone.
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Back at the centre, Jay has been moved to another room for his final weeks. After having a room to himself for almost five months, he now shares one with someone else.
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Jo joins Jay to undertake carer training at the centre. Jo has stopped working to become Jay’s full-time carer, today she learns how to assist Jay with basic daily tasks like bathing, going to the bathroom, and shaving.
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“I bought the over-toilet seat, and the non-slip bath mats.� - Jo
Jay and Jo check the list of things that need to be done before Jay goes home for good. 59
Jay has the feeding tube pulled out of his stomach. The pain is intense but temporary, like ripping off a band-aid.
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It’s the day he’s been waiting for — at long last Jay is moving back home. Unable to use his hands, Jay turns his iPad on with his elbow and waits for Jo to pack up his things. Amongst the bags are countless medications, high-calorie protein drinks, and Jay’s respirator.
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Jay farewells his physiotherapist, Krista, and nurse, Shirley. Over the course of his five month stay, Jay jokingly kept a list of his top-five nurses — Shirley was one of them. 65
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Bed number 37 is empty, ready for the next resident at The Royal Talbot Rehabilitation Centre.
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After being wheeled in five months ago, Jay walks out of the centre with the support of his walking frame. 69
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Acknowledgements
First and foremost, I would like to thank Jay and Jo for being so generous with their time. I am very grateful for being allowed to shoot such a personal story. This book would not have been possible without the assistance of staff and patients at the Royal Talbot Rehabilitation Centre — thank you for your cooperation and interest in the project. To Rob Gale and Jessie DiBlasi: thank you for your constant support and guidance on all aspects of the project. Finally, I would like to thank my editor, Cara Clewett, for her advice on the structure and copy of the book.
ABOUT THE PROJECT
This book has been produced as part of a joint project between the Diploma of Photo Imaging and the Associate Degree in Professional Writing and Editing at RMIT. This cross-disciplinary collaboration involved establishing professional relationships between editors and photographers, with editors assisting photographers in varied ways to support the presentation of their photographic narratives in book form. “The collaborative experience for the Photo Imaging students gave them insight into both the methodology and approach taken by writers and editors. This complemented and refined the learning that was taking place within the construction and development of their narrative projects – a real-world experience.” – Jessie DiBlasi, Robert Gale (Photo Imaging teachers) “Working not only collaboratively but across disciplines provided complex challenges for the editing students involved. Creativity, flexibility and patience proved crucial. In responding to, and supporting, each photographer’s vision, the editors deepened their knowledge and understanding of the publishing process and diverse editorial roles.” – Stephanie Holt (Advanced Manuscript Editing teacher) “These exciting and stylish publications are the result of highly successful collaboration between students from the School of Media and Communication. The project mirrors contemporary industry practice, demonstrating the strength of RMIT’s vocational education in the creative arts.” – Clare Renner (Deputy Dean, Vocational Education) Photograph on page 2 © 2014 Jo Zantuck All other photographs © 2015 Emma Murray Text © 2015 Emma Murray This book is copyright. Apart from any fair dealing for the purposes of private study, research, criticism or review, as permitted under the Copyright Act, no part may be reproduced by any process without written permission. Inquiries should be address to the creator. Printed by CPL Digital 117 Thistlethwaite Street South Melbourne VIC 3205