Defeating the Ministers of Death

by David Isaacs

  FDR was holidaying with his wife, Eleanor, and their five young children on Campobello Island in Maine when they went sailing in the family yacht. On their return to the island, FDR went for a swim in a pond with the children and raced the boys home, 3 kilometres away.

  That evening he had fever and chills and his lower back was very sore. He felt nauseous and did not eat supper, but went straight to bed.

  Next morning one of his legs was weak. By evening he was unable to move it and the other leg was also weak. He was racked by fevers and chills. His legs, when not numb, were excruciatingly painful, and so was his back. He was unable to urinate and had to be catheterised. He was also severely constipated, needing enemas. His arms and shoulders grew weak, he became paralysed from the chest down, and he had difficulty breathing.

  At first the doctors prescribed physiotherapy, which caused Roosevelt agonising pain. Then he was transferred to New York, where doctors diagnosed polio. He improved slowly, and spent weeks trying to walk, but was unable to win that battle and never walked again.

  FDR was adamant that his disability would not stop his political career. Undaunted, he was determined to be seen as a normal man who just happened to be in a wheelchair. His upper body strength and physique became legendary. He went fishing, fought a shark that weighed over 100 kilograms for two hours solo and landed it successfully.

  His political advisers thought his physical infirmity would be interpreted as weakness and wanted to distance him from his polio. They made sure photographs only showed him from the waist up.

  His political career thrived. His courageous attitude to his illness won rather than lost him votes. He was a charming and engaging man. In 1929 he became Governor of New York, and in 1932 he won a landslide victory to become the first ever disabled President of the United States.

  FDR had many claims to fame, but one of his most lauded achievements was that he introduced the ‘New Deal’ policy that helped the United States out of the dreadful 1930s economic collapse. How telling that a disabled president should find a solution to the Depression.

  FDR devoted much energy to fighting polio. In 1927 he launched a hospital and research facility in Georgia dedicated to polio research, called the Warm Springs Foundation. In 1938, two years after being re-elected by an even bigger margin, he founded a not-for-profit organisation he called the National Foundation for Infantile Paralysis, in order to raise funds to combat polio.

  He invited wealthy celebrities to events on his birthday each year. At one of these fundraisers, vaudeville comedian Eddie Cantor, famous for his blackface minstrel songs, suggested jokingly that the public should send dimes (10-cent pieces) directly to the president. The inspiration may have been ‘Brother Can You Spare a Dime?’ (or ‘Buddy Can You Spare a Dime?’), a famous song of the Depression.

  The public, for whom polio was visible daily in the bodies of their friends, their family and their president, took Eddie Cantor literally. The White House was swamped with bags of mail full of dimes – nearly 3 million in total – and could barely cope. The name of the National Foundation for Infantile Paralysis was changed to the March of Dimes, a play on the name of a popular radio series called The March of Time.

  An early March of Dimes fundraising effort was selling badges for a dime. Every Christmas, booths were set up with slots where children could insert a dime to buy a badge.

  This extraordinary appeal to the masses has to date generated over 7 billion dimes, and the March of Dimes has donated US$500 million towards combating polio. It was one of the earliest and remains one of the most impressive examples of ‘crowd-funding’.

  In fact, FDR’s diagnosis of polio was never confirmed, and some modern physicians have suggested his illness was more likely to have been Guillain-Barré syndrome, a nervous disease of unknown cause. The appropriate tests, such as a lumbar puncture, were not done, so the true diagnosis is speculative. The symmetrical nature of the paralysis and the way it ascended from FDR’s legs to involve his chest and face are more typical of Guillain-Barré syndrome, whereas the fevers and chills and permanent paralysis favour polio.

  Regardless of the true diagnosis, FDR’s illness made polio famous, and he himself made a huge contribution towards eradicating the disease.

  Bert Flugelman

  Herbert (Bert) Flugelman was born in Austria in 1923 and fled to Australia in 1938 to avoid the coming world war. He became a budding sculptor and moved to England in 1951. A year later, aged 29, he was suddenly struck with polio, mostly affecting the muscles of his left leg and his trunk. Doctors in a London hospital told Bert he would never walk again.

  Refusing to accept this, Bert discharged himself from hospital. He had a bed erected on the roof of his London house and, with the help of friends, gradually got back on his feet. He would thenceforth always have a tilt and walk with a limp, but he steadfastly refused to let polio impair his art, which, on the contrary, flourished. Bert’s courageous approach is reminiscent of Australian author Alan Marshall who, in his wonderful book, I Can Jump Puddles, describes the horror of realising he could not use his legs after contracting polio at age six and his courageous battle to live as normal a life as possible thereafter.

  Over the next three years Bert exhibited at the Piccadilly Gallery in London and the Barone Gallery in New York. He returned to Australia in 1955 and fashioned a career as an academic and a major sculptor. His magnificent work Cones has been exhibited in the Sculpture Garden at the National Gallery of Australia in Canberra since 1982. Bert exhibited on several occasions at Sculpture by the Sea in Bondi, New South Wales; a photo of one of his pieces, Tetrus, is used to advertise the event each year.

  In 1977 Bert was commissioned to make a sculpture to adorn a new pedestrian precinct in Adelaide, Rundle Mall. Bert produced two superimposed silver balls. His favoured title for the work was On Further Reflection, but the authorities preferred the simple Spheres. On the day the sculpture was unveiled, the Adelaide Advertiser used the headline ‘Bert’s Balls in the Mall’, a story Bert would often tell with a wicked grin. The sculpture has become an Adelaide icon, and has forever since been known as Bert’s Balls or The Mall’s Balls. The image appears on postcards, key-rings and posters, sometimes using the phrase ‘Adelaide’s Got Balls’.

  For years Bert and his partner Rosie lived in splendid isolation in a small hillside community in New South Wales called Jamberoo, only accessible by four-wheel drive, where lyrebirds would scamper across the road. He had few neighbours, but one was a close friend and fellow artist, Guy Warren, a painter. Bert had achieved his fame as a sculptor, but had painted in his youth. One evening over dinner, when a bottle or two of wine had been consumed, Bert bet Guy that he could paint as well as Guy could. Guy issued a challenge that they would each paint the other and submit their portraits to the highly prestigious Archibald Prize for portraiture at the Art Gallery of New South Wales. Bert’s painting did not make the cut, but Guy’s portrait of Bert won the 1985 Archibald Prize. Bert’s stance shows the characteristic body tilt that is a legacy of polio, with the muscles wasted more on one side of the body than the other. Guy depicts Bert with wings, inspired by the hang-gliders who would leap off Jamberoo Mountain, but with a possible nod to Icarus. Guy called his portrait Flugelman with Wingman.

  Only later did Bert tell Guy that the name had special resonance because Flugelman means ‘flying man’ in German.

  All about polio

  Polio is almost as ancient as smallpox. People with limbs withered by the disease are depicted on Egyptian stone carvings called steles dated to 3500 years ago.

  Polio – or poliomyelitis, to give its full scientific name (from the Greek meaning ‘inflammation of the grey matter of the spinal cord’) – has often been called infantile paralysis, although FDR’s and Bert’s stories show it could also hit adults.

  The list of famous people who had polio as children and went on to lead highly productive lives is a long one. It includes actors Alan Alda, Mia Farrow and Donald Sutherl
and; musicians Neil Young, Ian Dury, Joni Mitchell and Pinchas Zukerman; artist Frida Kahlo; authors Sir Walter Scott and Arthur C Clarke; politicians Kim Beazley and Paul Martin; and sporting personalities Jack Nicklaus and Wilma Rudolph. But these stories of famous people who have heroically conquered adversity hide the extent of the human misery caused by a truly dreadful disease. Polio is the ‘cripple’, legs crumpled underneath him, crawling across courtyards and up church steps in Mexico. Polio is the deformed beggar with a withered, stick-thin leg and contorted spine begging in the streets of India or Africa, China or Vietnam. Polio is the child hobbling along on crutches. Polio is babies, children and young adults in iron lungs because they cannot breathe for themselves.

  Those are the survivors. In a chapter entitled ‘Little White Coffins’ in his book The Cutter Incident, Paul Offit quotes a New York social worker who said of a young mother in 1916: ‘There were three little hearses before the door; all her children had been swept away.’ In his novel Nemesis, American Pulitzer Prize–winning author Philip Roth recounts a polio outbreak in Newark in 1944. Roth describes the sheer terror polio creates in the frightened, bewildered community. There is a desperate dearth of information. Parents are powerless as the disease spreads rapidly and seemingly at random, sentencing child after child to die or be crippled.

  Polio is an infectious disease caused by the poliovirus, which enters the body through the intestinal tract (gut). It is caught by inadvertently swallowing food or water infected with faecal matter from an infected person. The virus can stay in the faeces for some weeks, during which time it can be transmitted to other people. While polio is thought of today as a disease of poverty, in the past it affected rich and poor alike, due to the lack of safe water and sanitation.

  Most infected people stay asymptomatic (have no symptoms) and recover without any long-term ill effects. But a sizeable number develop an influenza-like illness with fever, sore throat, headache, vomiting, fatigue and limb pain. A few will experience neck stiffness due to meningitis. One in 200 of those infected develops flaccid paralysis (floppy weakness) of their muscles. The paralysis usually affects several muscles and is characteristically asymmetric, affecting one side of the body more than the other, as shown by what happened to Bert Flugelman. The muscles often become wasted through lack of use.

  Polio most commonly affects one or both legs, and can result in skinny, deformed legs. At its worst the legs will become twisted up under the poor victim, who has to drag himself or herself along on his or her hands. The arms can also be affected, but this is less common. The trunk is the next most common site, and this can lead to a bend in the spine called a scoliosis, resulting in a tilted body.

  If the breathing muscles are involved the patient might be unable to breathe adequately, which is why some people used to be kept alive in an artificial respiration machine called an iron lung. (Most were able to breathe on their own after a few weeks, but an unfortunate few spent the rest of their lives in the machines.) Occasionally the swallowing nerves are affected, causing what is called a bulbar palsy. Poliovirus damages the motor nerves (the nerves that make the muscles work), though the sensory nerves remain intact. Patients often have excruciating muscle spasms: imagine having cramp that persists for weeks.

  We do not know why some people develop paralysis and others remain well, although it has been shown that paralysis tends to occur where there has been recent trauma, for example in a leg that has received an injury or an intramuscular injection. It has even been known to occur in the muscles used for swallowing if the victim catches polio just after a tonsillectomy. I looked after one poor boy affected in this way, and he had to be fed by a tube through his nose because he could not swallow properly.

  Many people who develop paralytic poliomyelitis recover at least some of their muscle function, but for an unfortunate few the paralysis is lifelong. To add insult to injury, some polio sufferers have a recurrence of weakness late in life, a condition called post-polio syndrome.

  When I was a schoolboy in rural Hertfordshire in England, there was a home neaby for people handicapped by polio. A sign on the road warned drivers: ‘CRIPPLES CROSSING’. One day a motorist stopped and asked for directions, because he could not find a place called Cripples Crossing on his map. The staff laughed when they heard about it, but polio is no laughing matter for those permanently disabled by it.

  Sister Kenny

  As well as many victims, some of whom showed remarkable heroism, polio produced heroes who fought to overcome the ravages of the disease. Elizabeth Kenny (1880–1952), the daughter of a poor Irish farmer and his Australian wife, was born in Warialda, New South Wales. Her parents called her Lisa. The family later moved to a small town called Nobby near Toowoomba in Queensland, where her mother home-schooled her.

  At the age of 17, Lisa broke her arm while horse-riding. During her long convalescence in Toowoomba, her orthopaedic surgeon, Aeneas McDonnell, lent her his textbooks. She was intrigued by the drawings of the bones and muscles and how they worked, and started to teach herself anatomy. She asked Dr McDonnell if she could borrow a skeleton to see how the bones moved, but he told her this was not allowed – skeletons were strictly reserved for medical students. Undaunted, she made her own model skeleton from ropes and pulleys.

  Later she volunteered at a small maternity hospital in country New South Wales and learned nursing on the job. By the age of 30 she had set up her own practice at the family home in Nobby. She was a true ‘bush nurse’. She never formally qualified, but wore a nurse’s uniform she’d had made. She did not charge any money, and would ride on horseback to see any patients who requested her help.

  In 1911 she was asked to see a young girl on a farm and found the girl was paralysed. She had never seen anything like it, and contacted Dr McDonnell for his opinion. He replied: ‘It sounds like infantile paralysis. There’s no known treatment, so do the best you can.’

  Elizabeth used hot packs to relieve the girl’s muscle spasms and moved her limbs to mobilise her. To everyone’s relief, the girl recovered. When twenty more children in the district developed polio, Elizabeth treated six of them, who all improved.

  Stimulated by her success, she opened a cottage hospital in the nearby town of Clifton. However, soon afterwards war broke out. She asked Dr McDonnell to write a letter vouching for her nursing prowess and in 1915 was appointed as a staff nurse in the Australian Army Nursing Service. Elizabeth worked on troopships, tending to wounded soldiers who were being transported back to Australia. In 1917 she was promoted to first lieutenant in the nursing service, which carried with it the title of sister.

  After the war, she went back to Nobby and resumed her home nursing career. She proudly called herself Sister Kenny for the rest of her remarkable life.

  Sister Kenny’s inventiveness was exemplified in 1927 when she designed and patented a special ambulance stretcher, the Sylvia Stretcher, to try to reduce shock in patients requiring transport. This innovation was prompted by an accident on a neighbour’s property. Seven-year-old Sylvia Kuhn sustained horrific injuries when she was standing behind her father on a plough and her dress caught in the machinery. Sister Kenny took the door off a room in the farmhouse and strapped Sylvia to it to stabilise her for transport by truck to hospital. Sister Kenny decided the existing stretchers were not suitable for carrying a badly injured and shocked patient, and within weeks she had designed her own. She patented it in Australia, New Zealand, the United Kingdom, France, Canada, India and South Africa. The prestigious London-based Institute of Patentees and Inventors awarded Sister Kenny their Gold Medal. The regular royalties from the stretcher plus her war pension were often her sole source of income while she was working on the treatment of polio.

  Sister Kenny moved to Townsville, and in 1934 she leased a room in the Queen’s Hotel on the seafront and set up a clinic treating patients recovering from polio paralysis and cerebral palsy. It was the first nurse-led research establishment in Australia.

  The prevailing
medical opinion was that patients should be immobilised and should wear splints, callipers and braces to try to correct deformities. Sister Kenny thought this was nonsense. She felt that immobilising the muscles would only make things worse. She used hot baths and hot cloths to relax patients’ muscles, moved their affected limbs passively and persuaded the patients to move their own muscles actively. (This was what Bert Flugelman was later to do for himself.) We now know that the muscle wasting and contractures (permanently bent joints) of polio are exacerbated by lack of use, so Sister Kenny was absolutely correct.

  The Queensland Government sponsored a meeting in Brisbane for Sister Kenny to demonstrate her methods to doctors, but she was ridiculed. To be fair to the doctors, Sister Kenny talked about ‘incoordination’, ‘mental alienation’ and ‘spasm’ – terms of her own invention – as the causes of paralysis, which made the doctors doubt her expertise. She even claimed that strength was transferred from her massaging fingers into the patient’s muscles, which was way too mystical for your average Queensland doctor. On the other hand, when did white male doctors ever listen to a woman, let alone one who was not even qualified?

  Totally unfazed, Sister Kenny responded vehemently to their criticism, using her impressive results as her argument. She was supported by the parents of children whom she had treated, and within two years the Queensland Government had set up polio treatment clinics using her techniques in Townsville and Brisbane. The Brisbane clinic attracted polio victims from other states and even from overseas. Soon more ‘Kenny clinics’, as they were by then known, opened in Queensland and other States.

  In 1937, Elizabeth Kenny published a book, Infantile Paralysis and Cerebral Diplegia. She was invited to England to demonstrate her ‘Kenny method’; grateful parents paid her fare. The English doctors were just as shocked as their Queensland counterparts at her recommendations to mobilise patients and stop using splints.