How poetry helps Motor Neurone Disease sufferer vent frustration and raise funds

It is the only one of his fingers he can still move.

The rest have been stilled forever, paralysed by the fatal degenerative condition Motor Neurone Disease.

But with that one finger, Frank has found a way to express the frustrations and the anger that come with the disease that is slowly killing him – and a way to celebrate the things he loves: his wife, his children and grandchildren, and the joy of a life well lived.

Frank, 60, is a poet – though he modestly denies that, referring to himself as “just a rhymer”, or on his tongue-in-cheek business cards as “An Erse in Verse”.

The MND has all but paralysed his upper body, but his legs still work, and he stands at his computer keyboard at home in Dalkeith, tapping out poetry with his one good finger.

It is moving, entertaining and brutally honest Scots verse, and as well as providing an outlet for his thoughts and feelings, has been published in a pamphlet to raise money and awareness for the charity MND Scotland. His work has also inspired the charity to issue a call for other MND sufferers, their families and carers to write poems and submit them for publication on their website.

Frank’s life changed with just one word, spoken at the end of an unpleasant medical test.

The former HGV driver recalls that day at the Western General: “They stick long electrodes into your muscles and listen to the signals. At the end of half an hour when they’re done, the guy that did the test said ‘sorry . . .’.

“By that time I knew enough about MND to realise that basically I was getting a death sentence.”

Five years on, Frank has lived twice as long after diagnosis as most MND sufferers. Wife Jeanie has given up her job at a sheltered housing unit to care for him, washing, dressing and feeding him, even helping him to clear his throat when his weakened muscles mean he cannot cough properly and starts to choke.

He suffered minor symptoms of MND for several years before he was diagnosed, but hadn’t registered that anything was seriously wrong.

It was only when he found himself struggling to recover from shoulder surgery that he was referred to a neurology consultant at the Western and underwent testing.

He says: “Over a period of ten years before I was diagnosed I had symptoms but didn’t know what they were.

“Pens used to fly out of my hand for no reason whatsoever, I used to get a twitch on the right side of my nose. I simply never really paid any attention to them before.

“I’d heard of MND, but like a lot of other people I hadn’t a clue what it was.”

After the test revealed his diagnosis, he sat down with a consultant to talk about the future: “We had a long chat about how it would progress – in my case slowly.

“I was told two and a half years from diagnosis to death is average. I have a slow version and over the last five years I’ve lost, I would say, 80 per cent or 85 per cent of my upper body strength and mobility.

“Some people it affects their legs first, other people it’s very quick, some people like myself it’s very slow.

“I started to lose power in my right hand straight away. It’s spread now into my left arm, my back, my shoulders, my chest.”

He uses a ventilator at night to help him breathe, and every day drinks two high-nutrition drinks in addition to his normal diet, because his difficulty swallowing means he has lost weight.

The disease has not only taken its toll physically, but inevitably puts pressure on his relationship with Jeanie.

The couple obviously get on like a house on fire and are devoted to one another – she is the subject of many of his poems – but they both admit the change in circumstances has been difficult.

Frank says: “It puts a strain on us. My wife is now my 24/7 carer and she has to wash me, dress me, feed me, get me a drink. Basically without my wife I would be in a care home.

“I can still walk, not far – but that’s to do with breathing, because MND affects your breathing as well.

“It’s extremely frustrating and it causes you a great deal of stress as it progresses,” Frank says.

“The less I can do for myself, the more I expect from my wife. A case in point being I have my keyboard there, which is remote, and the battery ran out. I couldn’t change the battery and my wife had to do it. It caused a bit of frustration, I was going ‘change the bloody battery woman’.

“I don’t always expect to have things done instantly, but if the carer is caught up doing something else and I’m having to wait – I stand up to type with my finger, and when my thought process carries on and there’s nobody there to actually do what I want to do, that becomes extremely frustrating and that’s when I get angry.”

Jeanie, sitting beside him, says: “We don’t look ahead six months down the line, we just take each day as it comes. If you were to think about what’s ahead, you’d never get up in the morning.”

She finds solace and distraction in gardening and decorating. For her husband, the computer and his poetry have been “a life saver”, she says.

He began writing ten years ago during a period of unemployment but stopped for ten years when he was working again. Then, after being diagnosed with MND and retiring, he joined a writing group and took along the poems he’d written a decade earlier.

His first poem about MND was a scathing, angry, piece called The End, in which he railed against death with anger and expletives, making it clear that he intended to fight death – until a time of his choosing: “The MND thing came about through anger at Terry Pratchett being diagnosed [with dementia] and him saying that he would choose his time to die, which I agreed with. The public reaction to him saying that was terrible, that he should choose to die – and that made me angry. The first thing I wrote was called The End, which goes along these lines.”

But his writing was not all angry: “After I’d written that I thought ‘it’s not all bad news, there are people in the world that are worse off than me’ and started writing about other things.”

He has penned his memoirs in verse, and lighter episodes, such as his recollections of admiring the backsides of women on the beach in Majorca.

He says: “I wouldn’t say I was a poet. I’m a rhymer. I found myself in a more comfortable zone when I started writing in everyday Scots language, the same way that I speak. I found it was less of a strain and I could say what I wanted to say.”

He takes great pride in having helped MND Scotland, raising £200 so far with sales of the booklet.

Writing has also helped him keep his mind active and creative, rather than sinking into depression, he says: “It keeps the thought process going, you can lose yourself in it and it’s a way of getting rid of some of the frustration. People normally can talk about what they see, what they do, their work, kids etc and if they’re normal, and busy, it passes by. Whereas I’m no longer normal and I’m certainly not busy, but I can form all the thoughts in my head and then type them out put them into rhymes and just basically get rid of my frustration.”

Gorebridge Creative Writers Group is organising a fundraising event for MND Scotland at Woodburn Club on August 10. For more details e-mail [email protected].

Bad Day

Ye wake up… ye’r tired

Ye’r have’n a bad day

Ye’r body’s?… no wired

Head fur the stair

Ane step at a time

Move slowly forrit

Until ye get there

Will ye use the stairlift?

Or will you walk?

Ye’r hae’n a bad day

It’ll be hard to talk

When ye get tae the bottom

Ye’v ran oot’y braith

Aye it’s a bad day

Ye’r grey . . . like a wraith

Still ye made it

Ye kin hae a wee smile

Feels like a marathon

It took a wee while

Ye’r huv’n a bad day

Ye shoogle ye’r tea

Huv tae get up now

Ye’r need’n a pee

Get’n dressed

Get’n claithes oan

It’s no really fun

Get ye’r self ootside

Hae a sait in the sun

Feel its warmth oan ye’r face

Cuddle ye’r wife

It might be a bad day

But a guid bloody life