Radio review: Dealing with a shock diagnosis

Nuala McCann

Room 5 Radio 4

What happens when a diagnosis changes everything?

One afternoon, journalist and broadcaster Helena Merriman walked into a doctor's surgery and was given a shock diagnosis. When the news was delivered and her time was up, she said goodbye and walked out in shock.

The poet Raymond Carver wrote movingly about such a moment in his life in a poem he called “What the doctor said”.

“He said it doesn't look good

he said it looks bad in fact real bad

he said I counted thirty-two of them on one lung before

I quit counting them

I said I'm glad I wouldn't want to know

about any more being there than that”

There's an element of black humour about it, especially at the end when Carver finds himself jumping up and shaking the doctor's hand… he may have even thanked him, habit being so strong.

Room 5 is a series of programmes produced and presented by Merriman with people faced with a shock diagnosis.

Merriman asks how we cope when our bodies and minds no longer behave as we want them to.

Bex was a young eager student when she was struck down with a mysterious illness.

It rendered her helpless, psychotic and living in utter fear.

She suffered seizures, became paranoid and hysterical, could not be on her own.

Bex ended up in hospital suffering from seizures almost every hour, unable to speak and hearing voices.

It all seemed to point to psychosis.

But a neurologist happened to see her in the ward, clutching a large fluffy penguin. He wondered why she was so attached to this penguin and he wondered also if her condition might be something else.

It was encephalitis – an inflammation of the brain that can happen when your immune system turns on the brain and attacks it.

The disease was only discovered 15 years ago and typically affects young women in their 20s and 30s.

People have been sectioned because it looks like psychosis, but if caught, it is very treatable.

Recovery proved a long, slow process.

Encephalitis means patients can become more childish, they regress developmentally.

Bex could not get her words out, she lay in hospital as her mum brought her books to read:

“Winnie the Pooh ... I thought I should be able to read Winne the Pooh, I'm 20 years old. I looked at the pictures and it was quite exhausting trying to read. I didn't know how to re-learn.”

She became an adult trapped in the body of a toddler – she couldn't say what she wanted, tantrums became the only way to react.

The diagnosis led to the correct treatment and a way forward… but it was a painstaking journey.

This is more than a short series about rare diseases or misunderstood conditions.

Merriman starts from a base of shared understanding.

She creates a sound picture that makes these individual lived experiences all too real.

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