A lifetime in an iron lung: courage in the face of a cruel disease

Stricken in childhood by polio, Dianne Odell had spent six decades encased in the machine that kept her alive until a sudden power failure this week. Guy Adams salutes a woman of rare fortitude

For the first time in almost 60 years, Dianne Odell's family home was silent yesterday. Only a string of well-wishers interrupted the eerie calm that pervaded the house where, for as long as anyone can remember, a noisy electric motor had powered the massive "iron lung" pumping air in and out of her body.

Just 24 hours earlier, thunderstorms had blown trees on to a power-line near the modest house in Jackson, Tennessee, setting in train a tragic series of events that would shut down an enormous metal machine that had kept the 61-year old woman alive since she was a toddler.

Shortly after 3am, Ms Odell's father, Freeman, and brother-in-law Will Beyer realised that their emergency generator had failed to kick in, and attempted to fit another artificial respirator. When that wouldn't work, they tried pumping the iron lung manually in a last, desperate attempt to feed air into her lungs.

But Dianne Odell could not be saved. She died a few minutes later, finally falling victim to the appalling condition that had first touched her life at the age of three, and would eventually turn her into a remarkable and world-famous symbol of suffering – and hope. "We did everything we could do, but we just couldn't keep her breathing," Mr Beyer said yesterday. "Dianne was a very unique person. But she had gotten weaker over the past several months and she just didn't have the strength to keep going."

Ms Odell was believed to be the world's longest-surviving victim of polio to have spent almost her entire life inside an iron lung, a now virtually obsolete medical device that keeps patients alive by forcing air in and out of their paralysed bodies.

She had been confined to the 7ft, 750lb metal tube – which mostly remained in the living room of her parents' home 80 miles north-east of Memphis – since 1950, when she had fallen victim at the age of three to a severe case of "bulbo-spinal" polio.

This crippling disease, which has since been eradicated in the developed world through vaccination programmes, forced doctors to encase her in a sealed cylindrical metal container, which produced alternately positive and negative pressure that allowed her lungs to expand and contract. Although experts at the time gave her just a few years to live, Ms Odell remained lying on her back, with only her head extending from the mechanical device, for nearly six decades.

She was cared for by her close family together with a community of friends and admirers, with whom she made eye contact through an angled mirror. Despite the difficulties of Ms Odell's condition, she managed to get a high-school diploma, take college courses, and even write a children's book about a "wishing star"' called Blinky – all from the confines of the living room of her home at 133 Odell Street.

A small television set was mounted on a frame above her head and operated with a blow-tube. She wrote on a voice-activated computer. And over the years, as her fame grew, she touched the lives of thousands of supporters and fellow-sufferers around the world.

For her 60th birthday party in February last year, she was painstakingly transported inside the machine to a local hotel, the last time she would ever leave the house. Tributes poured in from Hollywood stars – including the actress Jane Seymour and her husband James Keach. Al Gore also paid homage.

"Dianne was one of the kindest and most considerate people you could meet. She was always concerned about others and their well-being," said Frank McMeen, a family friend and president of the West Tennessee Health Care Foundation, which ran a fund to help finance her treatment.

"Each of us grows into our world, but Dianne's world was a bed in her living room. But as we took people to meet her, they also became her world, and she adapted. She tutored children; she spoke to the Rotary Club; she became a remarkable person who managed to do a great deal with her life. Right now, her family is suffering from their loss. But her legacy will provide comfort."

Behind Ms Odell's achievements were her mother, Geneva, and father, Freeman, who were determined to care for her at home, even when Medicare, the public health insurance scheme, announced that it would only fund her treatment if she were moved to a nursing home.

In addition to raising the $80,000 it cost to care for Dianne each year, they devoted themselves to making her life as normal as possible. Freeman, a Second World War veteran and professional telephone engineer, installed a speakerphone system connecting their home with the Jackson Central-Merry High School, so that Dianne could listen in to lessons during her teenage years.

She later used the device to study at Freed-Hardeman University in Henderson, Tennessee. Although her condition eventually forced her to withdraw, she was awarded an honorary degree from the institution.

In 2001, Ms Odell used a voice-activated computer to write a children's book about a small star who wanted to become a "wishing star" in order, she told interviewers, to show youngsters, especially those with physical difficulties, that you should never give up. She even became a political activist, helping to canvass for state senators via telephone.

Although in recent years she suffered from a series of mini-strokes, her death came as a shock to fellow victims of polio, who regarded her as a poster-girl for the handful of Americans still forced to use iron lungs on either a constant or occasional basis.

"Her story leaves me with mixed emotions," said Richard Daggett, a polio survivor from Downey, California. "Obviously, she triumphed for very many years, despite tremendous health problems, and that's joyful. But while we all must die eventually, the circumstances of Dianne Odell's life and death make it particularly sad for her family and friends.

"An iron lung can be a strange place to be. It's not unpleasant most of the time. You are comfortable and of course you are kept alive, but it can be frustrating if, for example, you have an itchy nose and are totally unable to scratch it. But it's as gentle a form of artificial respiration as you can hope for."

Joan Headley, of Post Polio Health International, a charitable organisation in St Louis, said that about 30 people in the United States still rely on iron lungs, although few users are confined to them all the time. No one keeps records on the longest confinement. "Some people just use them to sleep, but Dianne was an extreme case," she said. "But for all that, she went to school and she got an education, and she made people aware of the plight of other polio sufferers, so we have to admire her."

In Jackson, a town of about 50,000, the community that has for decades rallied round the Odell family, are determined her name should survive. Frank McMeen said yesterday that any remaining money in the Dianne Odell fund will be used to set up an endowment for disadvantaged children. The iron lung will be donated to the local museum.

At the Church of Christ, where the Odell family worship, they will say farewell next week – and may draw comfort from the words of the woman who was incarcerated for so long. "I remember walking to a ball game with daddy," she once said. "And I remember being on a train. It seems like I can remember playing out in the mud one day. But I've had a very good life, filled with love and family and faith. You can make life good or you can make it bad. I've chosen the good."

Killer disease on verge of extinction

Polio, or poliomyelitis, is an extremely infectious disease that invades the nervous system and, within hours, can cause total paralysis. It mainly affects those under five and can be fatal. It has no cure but is preventable through vaccines and has nearly been defeated. In 1988, there were more than 350,000 victims. Last year, according to the World Health Organisation, there were only 1,313 cases worldwide, mainly in Nigeria, India, Pakistan and Afghanistan.

Before the introduction of vaccines in the 1950s and 60s, polio survivors in industrialised countries were ensconced in an "iron lung" – a massive, two-ton set of bellows that breathed for them, hiding all but their head. There were more than 1,000 in use in the UK in 1939 and many people crippled in the outbreaks of the 1950s spent their whole lives inside one. They were gradually phased out and replaced by machines that allow patients to move around. In the US, in 2004, there were still an estimated 40 people in bellows.

Even the poorest, most unstable countries are capable of eradicating polio if they receive consistent funding for immunisation. Somalia declared itself officially polio-free in March. But it only takes one infected child to endanger a whole country, as was seen in northern Nigeria earlier this decade when religious leaders boycotted immunisations for fear that they were part of a Western conspiracy.