Nostalgic policies shouldn't extend to diseases

I've seen first-hand the damage polio can do - it shouldn't be given another chance in future

When I was three years old, I lost the ability to walk. It happened gradually at first: a struggle to stand up here, a lack of balance there. But things soon deteriorated. Short distances became tricky, while slopes and stairs were near impossible. One Friday afternoon in April 1990, my parents took me and my failing legs to the Royal United Hospital in Bath. By the next morning I was seeing a neurological specialist.

The initial suspect was a spinal tumour. Several days of tests followed; there were X-rays, blood samples, nerve stimulation, and a lumbar puncture to extract spinal fluid. As the results came in, the diagnosis shifted towards a rare condition known as Guillain-Barré syndrome (GBS). Named after French neurologists Georges Guillain and Jean Alexandre Barré, GBS is the result of a malfunctioning immune system. Rather than protecting my body, it had started attacking nerves, spreading paralysis.

Sometimes the sum of human wisdom is to be found, as writer Alexandre Dumas put it, within the words ‘wait and hope’. And that was to be my treatment, to wait and to hope. My parents were given a multicoloured party horn to check the strength of my breathing (there was no home equipment small enough for a toddler). If the horn failed to unroll when I blew, it meant the paralysis had reached the muscles that pumped air into my lungs.

There is a photo of me sitting on my grandfather’s lap around this time. He is in a wheelchair. He’d caught polio in India aged twenty-five, and had been unable to walk since. I’d only ever known him like that, his strong arms wheeling uncooperative legs. In a way, it brought familiarity to this unfamiliar situation. Yet what linked us was also what separated us. We shared a symptom, but the mark of his polio was permanent; GBS, for all its misery, was usually a temporary condition.

So we waited and we hoped. The party horn never failed to unroll, and a lengthy recovery began. My parents told me GBS stood for ‘Getting Better Slowly’. It was twelve months before I could walk, and another twelve before I could manage anything resembling a run. My balance would suffer for years to come.

As my symptoms faded, so did my memories. Events became distant, left behind to another life. I can no longer remember my parents giving me chocolate buttons before the needles. Or how I subsequently refused to eat them – even on a normal day – fearing what would come next. The memories of games of tag at primary school have faded too, with me spending all of lunchtime as ‘it’, my legs still too weak to catch the others. For the twenty-five years that followed my illness, I never really spoke about GBS. I left school, went to university, completed a PhD. GBS seemed too rare, too meaningless to bring up. Guillain-what? Barré who? The story, which I never told anyway, was over for me.

Except it never ended for my grandfather. His disease – caught before a polio vaccine became available in the 1950s – was not bad enough to require an iron lung, but he did need an iron will to overcome the stigma that came with being in a wheelchair. Stigma that meant people would doubt his abilities, or overlook him for job opportunities.

So it was astonishing to read reports last week that Robert Kennedy Jr’s lawyer and ally has petitioned the US Food and Drug Administration to revoke approval of the polio vaccine, based on what seems like a misunderstanding of the available evidence. Much of US recent politics has been driven by nostalgia, with people yearning for a bygone era that didn’t necessarily exist in reality. But the paralysing effects of polio did exist in the US during the 20th century, and it’s not something politicians or their allies should make happen again.

The above is adapted from the opening chapter of The Rules of Contagion. You can read a longer ‘look inside’ preview or order the full book here.

Cover image: CDC