He may no longer be able to play his beloved guitar – or even hold a camera after a photography career spanning almost 40 years – but cheerful dad-of-two Phil Graham, 62, is just glad to be alive!
Chirpy Phil was so keen to raise awareness of the disease that almost robbed his wife Janet, 50, of her husband – and the couple’s two boys Daniel, 29, and Padraic [correct], 25, of a much-loved dad – he penned “I’m Going Nowhere” during his ongoing recovery.
The title is inspired by a particularly dark event in which Phil, 62, almost died.
But the book is certainly not all doom and gloom, with its funny anecdotes in which Phil describes “the humorous side of spending 10 months in hospital”.
Phil’s inspiring zest for life, despite the fact he has been left partially paralysed by the condition, also shines through, reflecting the gratitude he feels that he is “still here” and his determination to enjoy his premature retirement as best he can.
Phil said: “The night I nearly died, hospital staff worked for five hours to keep me breathing. It was very traumatic.
“Writing the book, I had to revisit experiences that had been quite frightening. But it’s a book of hope.
“It’s about how we coped with a life-changing situation – and how I’m so happy to have cancelled my appointment with the grim reaper!”
With infectious enthusiasm, Phil describes the book as “positive” and hopes it will raise awareness of the condition and provide helpful advice to sufferers – at the same time as being realistic about life after the condition.
“When I came out of hospital, my life had inevitably changed. But I decided my condition didn’t have to be life-limiting. I can either let it bother me or I can get on and enjoy life as best I can.””
Phil Graham, GBS survivor
Phil makes no secret of the life-changing nature of GBS, and while he insists he is determined the condition won’t limit his life, he does touch on his sadness at the fact he will never play the guitar again – something he has been passionate about since the age of 14.
After a career spanning almost 40 years as a photographer, he is also coming to terms with the fact he can no longer even hold a camera.
“I was in hospital 10 months and I was paralysed,” he said.
“I went through hell and also saw other people that had GBS going through hell. When I came out of hospital, my life had inevitably changed. But I decided my condition didn’t have to be life-limiting.
“I can either let it bother me or I can get on and enjoy life as best I can.”
At 62, Phil, from Bishop Auckland, adds he “doesn’t want to be working anyway!”
“I just want to concentrate on good things,” he said.
“I did see some people come into hospital who didn’t go out. They died and I saw that. That’s helped me have the attitude that life’s great and yes, there are things I can’t do now, but I’m still here.”
Sharing time with his wife and sons – “great guys” who he says he has always been close to – is now his priority.
And although he can no longer play his beloved guitar, he still enjoys singing with electric acoustic folk rock band, Share The Darkness.
“I’m 62 and I’m out there, gigging!” he laughs.
“I’m not exactly getting 18-year-old groupies, but I’m out there.”
Phil is now looking forward to the launch of his book on Saturday 21 November, from 11.30am to 1pm at Park Head Country Hotel, New Coundon, Bishop Auckland.
He praised the support of the hotel, where Janet works, throughout his illness and recovery.
He has also praised the treatment he received at The James Cook University Hospital and support from charity GAIN – Guillain Barre and associated inflammatory neuropathies.
Phil said: “I got exemplary treatment at James Cook. The staff on wards 25 and 26 were brilliant.
“Every penny from the sale of the books is going to the GAIN charity so, hopefully people will buy it.
“At the book launch, we have Dr Neil Archibald from The James Cook University Hospital, who is going to do a 10-minute presentation about what GBS is and Caroline Morris from GAIN is coming up to talk about the charity and what it does.”
Phil adds everyone is welcome, including carers of those with the condition – who also need support during a very stressful time.
To attend, call 01388 602479 or email firstname.lastname@example.org
What is Guillain Barre Syndrome? (GBS)
GBS is an uncommon illness causing weakness and loss of sensation. It is named after two French physicians, Guillain (pronounced Ghee-lan) and Barré (pronounced Bar-ray), who described it in 1916 in two soldiers who were affected by a paralysis but later recovered.
It affects about 1,500 people in the UK every year and can occur at any age from infancy onwards. It is more common in men than in women, is not hereditary or infectious and is not caught from or transmitted to anybody else.