“Jega’s leaving.  Leaving Ward 1.”  Paul Berry greeted me, with a grimace that screwed up his face, as I approached where he was sitting, out in the sun, in his foot operated electric wheelchair, beside the entrance to Royal Perth Rehab at Shenton Park.

“But I’m just dropping off another referral to the Late Effects Clinic for her.” I replied, aghast.  What would we do without Jega?

“That’s OK.” responded Paul.  “She’s cutting her hours back - going to concentrate on the Late Effects Clinic now, so I’ve heard.”  Phew, I was relieved.  But I could see that Paul was not too happy about losing Jega, as his own Ward 1 physio.  She had been there, looking out for him for more than 20 of the nearly 50 years Paul had spent here, doomed to live out the rest of his days in hospital, because he still needed to go into the iron lung at night, as without a conscious effort to breath, Paul would stop breathing.

It was early October 2005 and I had not seen Paul since the Polio Reunion we had held in June this year.  I had been so pleased when Paul had told me that Matron had allocated him a nurse and Birds respirator for the afternoon so that he could attend.  A wheelchair taxi had been booked to transport him to and from the Wheelchair Basket Ball premises venue at Osborne Park.  He had stood out, head and shoulders above the crowd, enjoying every minute of it, talking to many of the 200 or so fellow polios and former staff from the “old days”.

Paul had declined my offer for him to be a guest speaker on the day.  “My voice is not strong enough now.“ he had said.  It was a day for reminiscing on past polio days.  I knew a lot about “the old days” as far as Paul was concerned, having interviewed him a few times over the years.  I learnt more of his younger pre-polio days, at Paul’s recent funeral.

A quiet, reserved man, often with a twinkle in his eye, many WA people know of Paul, but not a lot about him personally.

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Paul was born 30 Oct 1928, the youngest son of Cyril and Ida Berry.  He had a brother Basil, 10 years older and a sister, Bernice 6 years older.

As a young child Paul grew up in Busselton and was constantly in trouble.  Apparently he fell into a horse trough and nearly drowned.  He fell 4 feet out of a window landing on his head and another time swallowed a screw, causing his sister some anxious days until the screw was passed, just to mention a few of his early calamities.

Some years later, the family moved to Geraldton where his father, involved in the building trade, was contracted to build the Geraldton Roman Catholic Cathedral and the nursing home, Nazareth House.  Brother Basil was involved in designing of the buildings.  Paul attended school at CBC there and had fond memories of fishing with a bamboo pole.

Around the time of the beginning of World War 2, they moved back to Perth settling in the Leederville area.  Paul went to St Mary’s Roman Catholic school there then CBC in Perth.  His memories include playing in the water at Lake Monger, swimming at Crawley Baths and Scarborough Beach, involvement in sport including sprinting, singing soprano and witnessing a Tiger Moth crash into the reeds at Lake Monger.
Paul left school to take up an apprenticeship as a carpenter/joiner in the family business. As a young man he played tennis, went horse riding at Inglewood, went to the usual dances and family weddings, was a talented driver and even owned a fancy sports car - a soft-top Morris Minor.  Happy family holidays at Safety Bay, catching whiting in dinghies, walking across to Penguin Island on the sand spit and trips in the truck with cold drinks in a fridge on the back.

Paul became involved with sailing, initially building himself a small 2-man boat.  He joined the 14 foot dingy club and for 2 years sailed Club boats before buying his own, called “Victor” in 1952.  Then he bought another with a light-weight racing shell that he called “Ventura”.  In 1954/5 he sailed in Adelaide, representing WA and coming in third.

In 1955 Paul bought a new boat which he took to Melbourne racing in the 14-foot Sailing Championships at Christmas.  It was not long after his return, in February 1956 that out sailing on the Swan in his racing dinghy one Saturday, Paul having felt off colour a bit for a few days, a dose of the flu’ he thought, noticed some muscle weakness.  He found he was having difficulty trimming the sails.  The next day, Sunday, accompanying his brother and family to visit the Santa Maria College Chapel that his brother was building he found he was having trouble carrying one of his little nephews around.  The boy seemed heavier than usual.  That Monday he decided to stay home in bed.

When Paul didn’t turn up for work for a couple of days, his parents being away in Bunbury and Paul being at the Edinboro St Mt Hawthorn family home on his own, Basil went to check up.  Finding Paul very ill, Basil called the doctor, who took one look and ordered an ambulance to take him to the Infectious Diseases Hospital at Shenton Park.  Paul was having great difficulty lifting his arms and legs but managed to walk into the ambulance.  15 minutes later on arriving he could no longer walk off and that night was put in an iron lung as he could no longer breath on his own.

This was a very frightening time for Paul’s family.  Realising how sick Paul was, Basil took Paul’s car and drove to Bunbury to try to find his parents.  They rushed back greatly distressed.  Perth was in the throes of another Polio Epidemic, similar to that of 2 years before in 1954.

Paul had been experiencing pain in his arms and legs which made him restless in bed.  He recalls rolling out of bed and hitting the floor.  “Things became a bit vague after that.” He said.  “I found I couldn’t swallow and they put a naso-gastric feeding tube down my nose and a tracheostomy.  I was in an iron lung and they tipped the beds up for postural drainage.  I ended up with bedsores on my shoulders and elbows.  I was completely paralysed and lost so much muscle that I was basically just skin and bone.  There were 15 iron lungs going – 2 or 3 to a room.  There were 15 deaths that year from polio.  I was one of the lucky ones.”

“When we were in the iron lungs, it was pretty heavy nursing.  For a wash or a linen change it took 4 nurses and a physio or trained staff.  The physio did passive movements twice a day.  Bedpans were rubber and to use one it took 3 people – one to lift your bottom, one to work the ressus equipment while the lung was open and one to put the pan under.  Many times I got left  for hours “on the throne.”  They’d forget to come back to take us off.  After 6 weeks - they didn’t know what muscles were left, so they would come around and open the lid of the iron lung up and say “breath!”  I soon realised I couldn’t and that was very frightening.  They did this twice a day just to check. After a while I could manage a couple of minutes and I was so relieved when it was closed again.  Gradually they increased the time but if they went too fast they would have to reduce it again.  I got to the stage where I was out of the lung in the morning till noon, back in for an hour then out again for the afternoon then back in again at night.”

“While this was happening they were also doing lots of passive movements to regain use of other muscles.  I regained the use of my legs and some breathing muscles, though it was always harder to breath lying down.  I needed a conscious effort to breath so still needed to go into the iron lung at night. Breathlessness wakes me if I fall asleep without being in the iron lung.  I have always feared falling and knocking myself out.  I might not be found in time.”

Initially there were 3 people left dependant on iron lungs in Ward 1 after the 1956 polio epidemic.  By 1959 there was only Paul and Alex Hearn left.  They shared a room for 12 years.  Alex died in 1968.  After renovations in the ward in 1968/69 Paul was given a 2-bed room that was set up with an ordinary bed he could lie on as well as the iron lung.  He had a built-in wardrobe put in and a shelf above the bed for his books.  Paul had a TV and a  reading frame to enable him to read the paper.  Books, he had put on top of the iron lung and used his tongue to turn the pages.  Later he got a button phone that he could use by grasping a stick or pencil in his mouth, enabling him to dial up numbers.

Paul was able to walk around the hospital and would go out for lunch at his parents on weekends.  He would go home propped up with pillow in the back of a Vauxhall truck.  He tried using a chest Cuirass with bellows attached but it wasn’t powerful enough.  Paul had a portable cough machine too, that he took with him to help clear secretions in his lungs.  This was built from a vacuum cleaner motor and took some skill to use.  He had another more permanent cough machine set up in his room as well.  In later years Paul also used a Birds respirator to help expand his lungs during the day when he is out of the lung.

Over the years many contraptions were invented to assist Paul.  Not all of them worked.  There was a reading frame that held a book above the head to read in an iron lung.  This greatly relieved the boredom of staring at the ceiling.  There was a specially built chair for his very upright posture he needed to stand or sit.  A pedal powered wheelchair was tried but this was not very maneuverable so that was disregarded.  Another one was a feeding machine with a knife and fork that was operated by his foot and knee.  He used it for about 12 months to feed himself but then gave it up.  “It was too complicated.” said Paul.  “The food went cold and really it was easier to have someone feed me.”

Over  the years Paul got out to go to the footy.  He was a strong West Perth supporter.  He was made a life member of the 14-foot Dingy Club and would watch races from the car.  Family and friends would visit him often.  It was never a task but always a pleasure to visit Paul.  His parents visited him every day until they were too elderly, then Paul would visit them at the nursing home in Glendalough instead.  They cared for him and he cared for them.  But Paul was never dependant on them.  Early on he acquired a block of land which he later sold and invested the money so that he never lived off a pension.  Paul was financially independent.

In the early 1960’s Paul learnt typing with one toe on an electric typewriter.  Then in 1964 he started learning to paint with a brush attached to his toe.  Shirley Kidd was one of his painting teachers and he had to start from scratch.  The first painting he took home with great pride and gradually his collection has grown.  Family and friends spent hours searching for topics and photos for his paintings.  Many he sold to maintain his independence.  A number were used for Christmas cards with the Paraplegic-Quadriplegic Assoc.  Others he gave to friends.  One was donated to the Post Polio Network of WA to raffle to help raise funds.  In latter years he was accepted to paint for the Foot and Mouth Organisation, a real triumph for Paul.

In 1981, the Year of the Disabled, Paul visited the Bullsbrook School to speak to the children about living with disabilities and how people manage.  Bullsbrook and Mandurah were the furthest he got away form his iron lung and he always took his portable cough machine with him.  He featured at the Royal Show for 4 or 5 years demonstrating how he painted with his toe.  From 1982 – 85 Paul did an Art History course at Tech.  For 4 years he used a tape recorder placed on top of the iron lung to record his assignments and exams.

In 1989 Paul was approached with some information from NZ on the Late Effects of Polio and asked to help set up a group in Perth.  His queries amongst other polios he knew soon brought the Jupps into the picture and so the Post Polio Network of WA came into existence in Aug 1989.  Paul has been a foundation member of the Network ever since.  The Network has managed to reach over 2000 polio survivors living in WA over the last 16 years enabling more understanding and treatment from doctors, hospitals and other health professionals.

In 1989, Paul was set up with a foot-operated electric wheelchair as by this stage he also was getting weaker.  This proved a great boon to Paul, enabling him to get out and about again under his own steam.  He traveled to the shops in Daglish, church in Shenton Park, traveled on the train, went to school reunions and went out with friends.  When he traveled as far as the Wembley Bottle Shop to pick up cans of beer, the staff at the hospital really started to become concerned.

Paul was often seen watching the traffic pass on Selby St outside the hospital.  His electric chair gave him back some relative independence.  Paul became a legend in his time. He will be greatly missed but never forgotten.