I was deeply saddened last week to learn of the death of John Trefry. For those of you who have followed this blog, you will know that I have made reference to John’s story a few times. I met John and his wife Pam in hospital a few months after my accident, and the story of their experiences of living with quadriplegia was such an encouragement that I decided it needed to be recorded and somehow made available to others. So, about one year later, I went with a video recorder and interviewed John. His story was so interesting that it took two sessions, and even then I only touched the surface.
The period after the interviews turned out to be very difficult for me personally – the early years (and to a lesser extent still) at home trying to learn to live with my injury really beat me up. I did not, as a result, get the opportunity to finish my write-up of the story, nor to spend further time with John and Pam discussing it. Even so, he was very much on my mind during the tough times; I told myself regularly that if John could live such a full and meaningful life, then so could I.
in honour of his memory, Pam has given permission for me to publish my summary on this blog. I will thus dedicate the next few posts to that purpose. Please feel free to add your thoughts to the comments, and if you know John, your recollections.
The Trefry’s live at Sylvania Waters and as we pulled up at their house I couldn’t help but think of the Donahers, of 1990s BBC documentary fame. John and Pam have none of the shallow flashiness projected by that television series but they are down to earth Aussies, with the typical Aussie twang and straightforward manners. As she sees me being lowered on the hoist from the back of the van she breathes a sigh of relief, telling my colleague and carer Andrew that’s a good thing he had arrived with a disabled person. She doesn’t have much time for “normal” people, she observes; she much prefers visits from wheelies. Turning to me she is immediately aware that my catheter bag is full and so off she runs to get a bucket. It is the sort of no-nonsense generosity that sums up her character. I later learn that she is 70 years old but it is hard to believe. She is a willowy redhead, with the sort of height that gets taller and thinner in memory, and energy suggesting she is destined to be here for another three decades.
John is resting in the sun, a typical position for quads, who seem always to be soaking up the heat. Never mind that it is a typical January summer day. He wears a buttoned up shirt, long pants and woollen ugg boots. He is comfortably hunched into what looks like a new electric wheelchair, blue and shiny. Elbows resting on his lap table, his wrists hang loose and his fingers curl over. I recognise myself and it is a comforting feeling. We head inside, set up the recording equipment, and settle down to hear the story of this extraordinary life.
John was born in the New South Wales country town of Orange on 2 February 1941. One of 10 children born, he is one half of pigeon pair twins. Money was tight. John’s father had suffered for many years from tuberculosis, and could not retain employment. The family lived in a two bedroom home, with John and another brother sleeping on the veranda. It was, nevertheless, a happy home. In John’s recollections, the family had plenty of room (I wonder whether his mother felt the same), and they often made space for visits from friends and relatives. During the intermittent times when he had some respite from the symptoms of TB, his father took the family camping; heading out bush with the horse and cart intent on shooting rabbits.
Sadly, he passed away when John was 14, so he left school to work at the abattoir. His first job involved cleaning sheep carcasses and thereafter he moved into smallgoods making sausages and devon. John enjoyed his work, its collegial nature and the opportunity it afforded him to travel, transporting product around NSW country towns.
Outside of work John’s real passion was dancing. With seven sisters he had plenty of occasions to practice at home, and country towns hosted dance events most weekends. On one of these evenings John and two of his mates, Jim and Tom, decided to move on from a bush dance in Orange to another the town of Victoria. John was not a drinker and Jim, who was driving the car, was perfectly sober. It was well after midnight and about halfway there the car hit a block of concrete in the middle of the road. It was extremely unlucky. Apparently a truck had dislodged a drain, leaving it at a place that was almost impossible to miss. The car, an old FJ Holden, flew into the air and rolled into the paddock. This was in the era before seatbelts and headrests. Jim was thrown out of the car, but was mostly unhurt. Tom was killed instantly. John was left unconscious in the upturned car. He had suffered whiplash – without a headrest the accident caused his head tilted back over shoulders, breaking his neck; later discovered to be his sixth cervical vertebrae (C5/6) , leaving him a quadriplegic . Extracted from the car by ambulance officers, John was transported to hospital in Orange where the doctors had little hope for his recovery. It was the 2nd April 1959. John was 18 years of age.
In those days many newly injured quadriplegics died quickly, suffering from infections such as pneumonia. John spent four days in Orange hospital during which time nurses did not even change his clothes. When it became apparent that he had a chance of life he was shipped off to Prince Alfred Hospital in Sydney, an eight-hour journey in the ambulance.
There was no dedicated spinal unit so John was transferred to the surgical ward. He was placed in traction. Lying flat on his back, a wishbone frame encircled his head, supported by calipers that were drilled in into this skull just above the ear. This was attached by a rope to a frame that travelled to the end of the bed where it supported two sandbags. The goal was to pull the spine back into place. It was an excruciatingly painful form of treatment, especially when pressure relief demanded the patient be turned every two hours; a process that took 4 to 6 people to ensure that his neck and head was kept still. The night-time was the worst, as his screams of pain reverberated through the quiet ward.
Listening to the story, it is hard to get your head around how he made it through this period. Was he an uncharacteristically hopeful person? Was he able to imagine a better future? No, he says. All he can remember is devastation. Here he was, stuck in Sydney, with his family more than a day’s journey away. There were no telephones on the bedside table and, even if the nurses had provided him access, his family was not connected at the other end. His only visits were from the Country Women’s Association, who would help him read letters from his family and draft replies. One month into his hospital stay his sister, moved to the city and took to visiting him on a weekly basis. It was, nevertheless, a lonely experience. John was trapped in a broken body, in traction, trying to get through the day with only a ceiling for company.
John was to spend seven months in hospital, five of these in traction. As a C5/6 quad, John has control of his shoulders, neck and head. He has biceps although little in the way of triceps, and he does have wrist extension that enables him to grasp objects (called a tenodesis grip). As John has since discovered, it is possible to achieve remarkable function with this level of injury. In 1959, however, quadriplegia was considered terminal, or at least completely debilitating, so throughout his hospital stay John was given very little help in the way of physio or occupational therapy – almost no preparation for any level of independent living. Following the removal of the calipers and his escape from traction, John was taught to sit in a wheelchair. After five months of lying flat on his back, it was a dizzying exercise. It took about six weeks before he could sit up without passing out (he notes that today’s patients have it easy, with electric beds that enable them to get used to sitting before being placed in a chair).
Rather than physical therapy, medical intervention was the focus; draining the lungs to help avoid pneumonia and fighting infection in the bladder. This was a period before indwelling catheters, and the bladder was allowed to drain into a bag of its own accord. This meant that the bladder never completely emptied, so urinary tract infections were frequent and sometimes fatal. John believes the fact that he was not a heavy drinker nor smoker – that his kidney was intact – help him survive this period. He also admits that he was just lucky.
Luck, of course, is always relative!
After seven months in Prince of Wales it was time to leave, but John was unable to return to Orange given the pressures of single parenthood facing his mother. Instead he was sent to Weemala nursing home in Ryde, at the site that was later to become the Royal rehabilitation Centre, Sydney (http://www.royalrehab.com.au/history.html). The home had been established in 1899 to accommodate patients discharged from hospital without alternate residence, and its entryway still proudly bore the tagline, “Home for the Incurables.”
20-year-old John was placed in a room with two other men aged in their 60s. The nursing home functioned on rigid gender restrictions, men downstairs women upstairs. Even the occasional concert placed men on one side of the auditorium and women on the other – institutions operating on conservative church-based moral dictates. Resources were limited and the quality of care marginal. John vividly recalls the dispensing of medicines. Tablets for all the residents on the ward were placed in a bowl and patients were asked to select their own based on colour of the tablet. John was never quite sure whether he was taking pain medication or a laxative! Meal times the basic: breakfast a piece of toast, lunch hot meal, dinner sandwiches. Many times they were given leftovers, stale sandwiches nearly or food. And since the nursing home retained the total amount of a resident’s pension, there was little opportunity to supplement ones diet.
Given limited staff, John was rarely placed in a chair. He spent almost all the time flat on a bed, staring at the ceiling. I find this hard to comprehend. I ask him what he did with his time? Nothing, he says. There was no television, and you couldn’t hold a book. At least his bed was wheeled to the common areas and he was left near other patients. They would talk to him, but there was an age gap of 40 years or so. Given he was not receiving physiotherapy the muscles that might have functioned were not exercised, so he could do very little for himself. If someone was willing to turn the pages, he could read a newspaper.
John’s most vivid recollection was a question he once asked the matron. “How long am I going to be in here?”
She replied, “When you come in here son, you don’t come to get better. You slowly get worse and die.”
I am flabbergasted. I ask John whether this advice demoralised or motivated. We sometimes imagine people like John as being somehow more heroic, more stoic than we are, and yet the reality of living with disability is that you are not only physically dependent, but also psychologically dependent upon the care of others. Unsurprisingly, John describes the months of horror and isolation and the depression that ensued.
Dark times are rarely permanent and for John it was the encouragement of family and friends that birthed hope. Sometimes little things make a difference. A friend of the family from Orange started nursing at Weemala, and she gave John extra attention – even sneaking him extra provisions (and the power of food should not be understated). When his sister heard of the matron’s prophecy, she insisted, “This is not going to happen to you.” Another of his sisters moved to Sydney, and it was decided to start taking him out and about. As often as possible his brother-in-law would manhandle him into the back of their old Dodge car and take him home for lunch or out and about the town. John recalls the awkward interaction with strangers. Many people simply did not know how to relate to people with disabilities. Parents would ensure their children gave him a wide berth. Shopkeepers would rarely address him directly. Waitresses looked to his carer to find out his order. But whatever the difficulties John was starting to live again.
He decided he needed to get out of Weemala. The timing would prove fortuitous, as a place had become available at the newly established spinal unit at Prince of Wales hospital, Randwick. The only difficulty was that the nursing home did not want to let him go. And since they controlled the entirety of his pension, his family decided a kidnapping was in order. Pretending to take him out for a day visit, they whisked him away to Prince of Wales.
……… to be continued.
phil mooreAugust 19, 2013 at 5:30 pm
Thank you for writing about such hard topics
Melanie MullenAugust 19, 2013 at 7:50 pm
Wow, what an amazing life story. Looking forward to the rest…. So glad we’ve come a long way in medicine and care since 1959 – bet you are too Shane! Lol
Shane CliftonAugust 19, 2013 at 8:44 pm
jaymcneillAugust 19, 2013 at 11:01 pm
Thanks for writing this Shane. This man was obviously an outstanding person. I feel claustrophobic just thinking about being in one position all day – hell. It makes me grateful for the burden we carry – although everyones story is relative I guess. Looking forward to the next instalment.
Vic & Robyn CincAugust 20, 2013 at 9:59 am
An incredible story Shane, looking forward to hearing more. You narrate so well with such empathy and it is so good to hear the reality of this wonderful man’s life and honouring him as you do..
Clare HarrisonAugust 20, 2013 at 11:14 am
Hi Shane, I am sitting next to Don (confined to bed with pressure sore)and John’s story has greatly encouraged him. Before reading it he had a deep down feeling of walking a tightrope; he didn’t know any other quadriplegics who’d lasted 44years, and he’s even outlasted some of his able bodied friends and family. To know someone made it a good ten years further has made this day in bed a lot brighter. Thanks for making the effort to write and do it so well; John’s life is very significant to all of our family, and we have a special regard for his family. Don also wants to say that although it seems a home that will not let someone go because they get their pension seems from another era, it is happening today in other ways. After spending more than 18 months fighting for funding when his mother was elderly, he was awarded 35 hrs which has been hijacked by an organisation in Brisbane who will not allow him to transfer the money to a local organisation that would better suit his needs and charge a lot less for admin. He’s tried every way possible for the last 9 months, (including disability services who speak to him as though he is a whingeing child) and only has legal avenues left. Just what you need when you’re trapped in bed.
We are looking forward to the rest of the story, and hope you might add a photo for us.
Shane CliftonAugust 20, 2013 at 2:29 pm
give my regards to Don, Clare. Glad to hear the story was an encouragement to him. After 44 years, it sounds like his story needs to be gotten together– including the sorts of challenges you are now describing. It is not good enough when services that are meant to provide relief at stress. Shane
In honour of John Trefry (2 February 1941 -14 August 2013) pt.2 | Shane CliftonAugust 24, 2013 at 2:00 pm
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