'I thought my polio was over, but not any longer'

FIRST-HAND; Tony Gould tells how he coped with new symptoms 30 years on
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Indy Lifestyle Online
I CONTRACTED polio 36 years ago, in April 1959. I was doing my National Service in the Brigade of Gurkhas and my battalion had just moved from Malaya to Hong Kong. When I became delirious, the medical officer thought I had typhus and shipped me off to hospital. The chief doctor there recognised what was wrong - though he did not immediately tell me - and warned that my breathing might become more difficult. Within hours I was struggling, unable to move or breathe without a supreme effort. When they shifted me into an iron lung, I thought it was a coffin and tried feebly to resist. But if this was a coffin it brought relief; once I gave in to its rhythms I was able to breathe again.

I was weaned out of the lung over a period of weeks. When the doctor thought I was strong enough to bear the news, he told me I had polio. Polio? At first I was impressed - it sounded so grand. It took a while for the implications to sink in. What was polio? A virus apparently, which attacked the nerves in the spine and cut off the impulse from the brain to the muscles, causing the affected muscle fibres to shrivel and die. The unpredictable element was not knowing how much of the initial damage was temporary and how much permanent.

Once out of the iron lung I was flown back to England, where I learned to walk again with the aid of a calliper and, first, crutches, then sticks. I thought I was on course for a full recovery, so it came as a shock when the doctor told me they'd done all they could for me. I was invalided out of the Army and had to come to terms with being crippled.

In the same month and year that I contracted the disease in Hong Kong, the international footballer Jeff Hall died of it in England. Before the end of the Second World War polio had been a comparatively rare disease in Britain. But the late Forties and early Fifties were the polio years here as elsewhere, the time when parents grew anxious as the summer approached and kept their children away from swimming pools where the disease was thought to spread.

Though polio was never a killer on the scale of cancer and heart disease, it was feared because of its capacity to maim young and healthy bodies. Despite this universal fear, take-up of the Salk vaccine when it became available in this country in the mid-Fifties was sluggish. Jeff Hall's death changed that. The message finally got through to teenagers on the terraces at football matches and in the Mecca dance-halls. Emergency clinics were set up, and there was such a run on the vaccine that further supplies had to be flown in from the United States.

Polio first made its presence felt as an epidemic disease at the end of the nineteenth century in Scandinavia and the United States. But the Americans made it their own - for two reasons initially. One was that the first major epidemic took place in New York and the surrounding states in 1916; the other, that five years later Franklin Delano Roosevelt fell victim at nearly 40 to what was then known as infantile paralysis.

The "conquest of polio" was an American - perhaps the American - success story of the Fifties. Jonas Salk, who developed the vaccine in 1954, became an instant celebrity. But that was not the end of the story. Within a few years of its triumphant launch, Salk's vaccine, which required injections, had been superseded almost everywhere in the world by one that could be taken orally (on a sugar-lump, until the dentists objected), developed by his great rival for polio honours, the late Albert Sabin. Between them these two medical scientists effectively put paid to polio, in the West at least.

Now - in the West, and particularly in the United States - the focus has shifted from disease control to the plight of thesurvivors of the massive polio epidemics of the late Forties and early Fifties. In America there are some 650,000; in Britain, in the region of 30,000. And their lives have been cast into jeopardy by alarming symptoms of fatigue and new muscular weakness suffered without warning 30 to 40 years after the initial attack. Variously known as Post-Polio Syndrome and the Late Effects of Polio, the new ailments are still a medical mystery, but their effect has been dramatic. In the same way that Americans set out to conquer epidemic poliomyelitis (and succeeded in that), individual polio sufferers, following FDR's example, determined to triumph over it in their own lives. The great thing about polio was that it was not a progressive, degenerative disease like muscular dystrophy or multiple sclerosis: what you gained, you held.

This comforting illusion enabled polio people to go about their lives as though they were not disadvantaged. This was called "mainstreaming". It meant competing on equal terms with the able-bodied and denying one's disability. It resulted in some remarkable success stories; think of the Israeli violinist Itzhak Perlman, or the British pop singer Ian Dury.

What the new weaknesses experienced by "old polios" highlighted was the fragility of their hard-won position in the world of the "normals". With the loss of muscle power and the onset of debilitating fatigue, the proud boast of independence acquired a hollow ring. For the first time, in many cases, polio survivors sought out one another and compared notes. People were both surprised and comforted to find that what had once seemed so unique was in reality part of a common pattern.

I, too, had been so busy "mainstreaming" and "denying" my disability over the years that I had simultaneously both overvalued and undervalued it. I had overvalued it in the sense of regarding my experience of polio as somehow special, and undervalued it by not allowing that it had made any substantial difference to my way of life. Certainly, I'd always regarded this as a pivotal episode in my life; but I had also thought it was over.

I don't any longer. The knee on my "good" leg may be cracking up a bit but so far, mercifully, I have been spared the more alarming Late Effects of Polio. Yet I have learnt that however impressive a recovery you make, you don't "conquer" or "overcome" polio, you merely adapt to the limitations it imposes and - if you're fortunate - discover within yourself resources you might not otherwise have found. A Summer Plague, Polio and its Survivors, by Tony Gould, is published by Yale University Press at £19.95.