In honour of John Trefry (2 February 1941 -14 August 2013) pt.2

this blog post continues story began here.

john trefrey 18aRehabilitation

The new spinal unit at Prince of Wales was housed in old army huts, having taken over premises that had previously been used as a military and repatriation hospital. It was 1961, John was 20 years old, and while a return to hospital might seem like a backward step, in fact this move was to mark the beginning of his journey toward adapting to life as a quadriplegic. Immediately upon admittance the injury was reassessed and a strategy for physical therapy implemented. In addition to a targeted exercise regime, John was given an upgraded chair and a better cushion (in those days they used checkerboard foam), and encouraged to sit up for long periods. Before long, he was able to spend the day in the chair and he was fortunate thereafter to have suffered a very few pressure sores.

Perhaps the most important part of his rehabilitation was the opportunity to learn from and befriend other spinal patients. There is no small comfort in living with others who share in and understand your challenges, especially those a little further ahead on the journey. And after many months in nursing home it was just good fun for John to be with people his own age. Outside physio, the spinal patients spend most of their time playing cards. John could manoeuvre a deck flat on the table, and bring the cards to the edge to review his hand. A special rivalry and friendship developed with patients from the nearby police ward, and it was this connection that enabled a uniquely lucrative fundraising effort.

Saturday’s were race days. Randwick racecourse was only around the corner from the hospital although John never made his way to the course. Instead, the spinal crew would listen to the races on the radio and have a bet with the SP bookie that made his weekly way around the wards. Illegal bookmaking of this kind was common in Australia at the time, and the industry had a well-known connection with police corruption and race rigging. It wasn’t long before recovering police suggested that the spinal ward take control of the hospital bookmaking. So, after the police ran the visiting bookmaker off the premises the boys of the spinal ward took control of the books, with the money that was raised funding entertainment and equipment. To ramp up the money raised, Peter Lloyd, the local car dealer, gave them access to his service bays. Tables were put out and set up for blackjack and other games. Word of mouth was sufficient to bring out the crowds for a Saturday night of illegal gambling. The police themselves would walk about, offer protection, and even play cards. In this instance, however, they took no cut for themselves, and the money raised went to fund updated beds, televisions, exercise equipment and money for taxis that enabled the wheelies to get out and about.

This was a period long before the electric wheelchair, so John pushed himself in a manual. This was doable on the flat although he needed help if there was any slope. Wardsmen would lift two or three spinal patients into the cab and fold up the chairs which were jammed into the boot. More often than not they visited the Pagewood hotel – another pub with an SP bookmaker! John believes that the hoteliers were happy to have the paras and quads around since the police tended to let things go when they were present.

On Saturday nights they would head into King’s Cross. Looking at John now this seems incongruent with his character but he assures me the cross was a different place. Of course it had its underbelly, but the spinal boys went to the hotel to enjoy the live music bands. It was the era before planning laws required buildings to be equipped with disabled access, but there were plenty of offers of assistance. Without much effort a couple of young strong men carried John and his friends up the stairs, chair and all. The only real worry was the impact of alcohol on those doing the carrying later in the night, but somehow everything was negotiated safely.

Illicit Company

For most of these excursions, John had company. Indeed, while paraplegics are essentially independent, as a quadriplegic John required assistance. More often than not, the troop of spinal patients were accompanied by nurses that were disobeying strict instructions not to socialise with patients. One of these “naughty nurses” was Pam. Originally from Wagga Wagga, Pam was a country girl enjoying the city, and enjoying spending increasing amounts of time with the handsome John. This gave her some problems at work. She recalls repeated instances of being called into the head nurse to be told off for her jaunts with the patients, but apparently this just made her more determined.

For a little while, the outings were just social, but it wasn’t long before Pam and John started to fall in love. There was, however, continued trouble with the matron, so to get around the issue, Pam transferred to the tuberculosis ward of the hospital. Thereafter, she merely had to sneak over the fence to visit John – and she did so almost every day, sneaking into the back of the hospital and often talking to after midnight. Pam remembers sitting up on John’s lap for hours; sometimes not realising that she was sitting on his catheter, she would get up and head home soaking wet (but happy). Three years later they were married.

I asked Pam, how she mentally transitioned from nurse to girlfriend? How did she decide that she could cope with a marriage that would require substantial lifelong care? She responded:

“I didn’t even think about it. We were in love, and it was as simple as that!” – A statement proved by their lifetime love.

During the period of their courtship, they sometimes travelled together from Randwick to Orange, riding with a friend in a black Buick. No one from home knew they were coming; his family had no telephone, and they would turn up at 2 AM in the morning, waking everyone, and turning the house upside down as a place was arranged for them to sleep. At other times, they travelled to Pam’s family in Wagga Wagga, flying with a friend who was a pilot on a DC3 Fokker aeroplane. The trip normally went smoothly, but John recalls one instance when, while exiting the craft, the platform gave way and he fell 2 m, landing on top his pilot-friend. John was concussed, but otherwise unhurt, but his friend received a broken leg for his effort.

It wasn’t too long before they decided to marry. Neither was especially religious, but Pam was Catholic, so they asked a local priest to conduct the ceremony. He refused, being of the view that Pam shouldn’t marry a quad, taking the typically prejudiced view that the marriage could not be consummated. Of course, both John and Pam were not the sort of people to listen to that sort of nonsense, and they subsequently found a priest who would bless the union. They were married at Randwick Catholic Church 28 August 1965.

They started their marriage full of love but absolutely broke; no house or car and almost no assets. This was to be John’s first time living as a quadriplegic outside of the hospital, but they had great difficulty finding accommodation. As soon as people discovered John was in a wheelchair, they refused the rental; such with the prejudices of the day. Eventually, they managed to rent a unit at Ashfield, smack bang on Parramatta Road. It was decrepit, dirty, and noisy, but they were just delighted to live together, and so transformed a dump into a home – of sorts.

Not too much time later, John and Pam approached a lawyer, and with his help were able to fight for compensation from the RTA; not a huge sum by any measure, but enough to give them a sufficient deposit that, with the help of the Commonwealth Bank, they were able to purchase a block of land and build a home at Sylvania waters. At the time (date?), this was an out of the way suburb, and little did they know that the location of their little home would become a highly desirable waterside suburb. All this time later, they still live in this little house. And there is something fitting about this plain and small dwelling, surrounded by mansions and excess; a house that somehow represents the humility and also the beauty of this family – as against the flashy pretense of so much that surrounded them.

It was during this period John got a job. These were the days of widespread prejudicial employment practices, but John found a place with the newly formed Paraplegics Association (later renamed ParaQuad) operated a workshop to provide employment for people with SCI. In the early days, the tasks they performed were relatively menial. John recalls sorting buttons, removing those with split eyes from the remainder; another time they removed rusty knobs from batteries; and again they sorted bottle tops.

While such work seems tedious, John recalls enjoying himself. He was working out what he was capable of and developing his skills. He had to determine how to perform jobs with limited function, and this required planning and inventiveness. When he was not working, he was ordinarily treated as an invalid, incapable of doing anything for himself, but the work gave him the opportunity to contribute to something bigger. Work was also a social outlet and he notes that, “I learned more from other paraplegics and quadriplegics than I did from any doctor.” Early on, the money was poor. John earned about two dollars a day, which wasn’t much more than the cost of the transport to get to and from work. Money wasn’t really the point. At a time when quadriplegia made a person an invalid, John proved at ParaQuad that he could make a vital contribution in the workforce.

In the years that followed, John took on different roles and expanded his skills. He wanted to learn to drive, so imported hand controls, adjusted to take into account the limitations of his quadriplegia,  were fitted to his car. Pam taught him to drive on a block of vacant land at Sylvania Waters – steering his way around survey markings for new buildings. In addition to hand controls for braking and acceleration, John operated the blinkers by buttons on his headrest. The strange movements he made as he went round corners apparently earned him some surprised looks from passengers. To get in and out of the car, John used a slide board, but he needed help. This meant, obviously, that he needed someone either to be with him or, alternatively, assistance at either side of the trip. His family recall the beep of his horn when he arrived home, and arguments about whose turn it was to get him out. Since most of his driving was done between home and ParaQuad, it was normally the case that Pam helped him into the car at home, and then a member of the ParaQuad helped him out at the other end. Later, John was one of the First people to have a hoist attached to the roof the car – making the transfer much more manageable.

So John was a forerunner – and it wasn’t too much time later that ParaQuad added an engineering arm to its offerings, managed by John, who could pass on his love for driving to other people with SCI. Some years later on, John also joined the sales team, answering phones and assisting his fellow quads and paras to purchase various products vital to their care. John earned a degree of fame amongst the sci community of being able to find resources to solve any problem. Altogether John ended up working at ParaQuad for 40 years before retiring. Throughout the course of his employment he moved around different departments within the organisation and did what he could in the light of his emerging talents and limitations. John never earned a fortune, nor was he a prominent executive, but he enjoyed his work – and was loved by everyone who encountered him.

Family Man

In 1970, John and Pam adopted their son Richard, and three years later their daughter Michelle. It is not my place to tell the details of the story of their family life. When presenting the moving eulogy at his father’s funeral, Richard stated that “they were the luckiest children ever to be chosen by a mum and dad.” This is not to suggest that John was a softy. Richard described unique strategies of discipline necessitated by the chair and his physical limitations – and his own revenge undoing the wing nuts on his dad’s chair. He went on to describe their families adventures, the “ripper good times” they had. He noted that although family life might have looked unusual, in fact it was completely normal. Truth be told, I’m not sure I believe him – I get the impression that their family life was too loving to be counted as merely “normal” in this age of family breakdown and divorce. what is clear is that disability wasn’t a detriment to family life. No doubt it created challenges, but with the strength of character of Pam and John, disability was transformed into the rich tapestry of a flourishing family.

The Final Years

In the Christmas period of 2010/2011 John was riding as a passenger in the back of the family’s van when, while stationary at the lights, a car smashed into their rear end. John was thrown forward and the impact upon his fragile spine necessitated a series of hospital visits. It was during one of these that I had the privilege of meeting him. John might have been in recovery, but he wasn’t one to feel sorry for himself and instead functioned as the ward encourager, telling his stories and providing hope to many of us who were struggling with a newly acquired injury. While John was able to return home – thanks to the extraordinary care of Pam – he had lost some of the hard won function that had enabled him to live for so many decades with a remarkable degree of independence. He never completely recovered, and was to suffer various injuries in the period leading to his passing on 14 August 2013.

John will be greatly missed by his family and many friends – and even by those of us who only had the opportunity of a brief (but meaningful) encounter. His has been an extraordinary and meaningful life. He leaves behind a loving wife, children, grandchildren, and innumerable friends. He also leaves a legacy. It is the promise that happiness and fulfilment is possible in the midst of hardship and disability. Of course to attain it, one needs the sort of character that John embodied; his gentle determination, his patience, his resilience, his kindness, his friendliness, his love of life.

In memory of an Australian hero.

n.b. apologies for delay in this post – circumstances of the week have kept me away the computer.

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John Trefry, 50 Years a Quadriplegic

I am working on a research project – or at least I am starting to think about a research project to see whether it has legs. My interest is in the connection between virtue and human flourishing. That sounds complex, but what I am thinking about doing is interviewing long-term quadriplegics in an effort to discern what it is that is has enabled them to flourish over the long term in the face of immense challenge. There are some horrifying and depressing stories in the spinal community, and there are some amazing stories, and I would love to be able to record some of them; the good and the bad, and try and discern whether there is any meaning to be found.

Last week I had the privilege of recording an interview with John and Pam Trefry. They are robust and powerful 70-year-old Australians, and John has been a spinal patient since 1959, aged 18. At a time when quadriplegics had a life expectancy of weeks and months rather than decades, John went on to survive and flourish as a C5/6 quad – and he has done so now for more than 50 years. John has a similar level of injury to my own (I am C4/5), and I find it hard to imagine 50 years in such a body.

Anyway, his story is far too long for a blog post, but I thought I might give you a few titbits. John spent seven months in hospital (five months in traction with a wishbone frame drilled into the skull) before being transferred to Weemala nursing home in Ryde, which bore a sign over its entry that read, “NSW Home for Incurables” (for those of you familiar with the spinal community, this site was later to host the Royal rehabilitation Centre, Sydney –http://www.royalrehab.com.au/history.html).

John spent most of his time flat on its back, since the nursing home did not have the staff resources to get him up regularly in a chair. What did he do with his time? Not much. There was no television, and he couldn’t read – his arms could not hold a book. He was, at least, wheeled outside and into common rooms where he was able to talk to the residents. Of course, they were mostly over 65 and John was 20 – he shared a room with two other men the youngest of whom was 65.

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 in here to get better. You slowly get worse and die.”

It is hard to fathom what it is like to be 20, stuck on your back staring at the ceiling and receiving this sort of encouragement. This is the Hotel California masquerading as a nursing home (you can check out any time but you can never leave). I asked John what it was about his character that enabled him to get through this (he was later transferred to a spinal unit at Prince of Wales hospital that changed his life). He says that on his own he was depressed – feeling utterly hopeless and impotent. What got him through was the support of others. When he told his sister what had been said she insisted, “this is not going to happen to you.” She was later to find a way to move him to a spinal rehabilitation unit in Prince of Wales hospital.

The lesson, I think, is that the character traits that enable us to flourish in the face of hardship are not our own. We get them from the support, from the strength and determination of others. Where would we be without our family and friends? That old matron probably had it right. Slowly getting worse and waiting to die.