April 24 2014 Latest news:
by Sam Blewett, Reporter
Friday, December 6, 2013
When left virtually paralysed due to terminal motor neurone disease, giving up can seem like the only viable choice.
Not for the Rev Michael Hore, 63, the rector of Saint Laurence Church, Upminster.
Instead, he has carried on fighting; publishing his thoughts on a blog.
“He is being kept alive by a ventilator and he wears a breathing mask all the time. It blows air into his lungs to keep him alive,” said his wife, Rosalind.
“He can’t do the up-front things any more like the services.”
With just a little movement remaining in his left hand, he manages to drive his electric wheelchair.
However, despite his near-paralysis, Mr Hore remains the rector, running the Church of England parish.
“I can’t walk, I can hardly move anything, so I have to rely on machines,” he said.
He uses a speech recognition program on his computer to write sermons, services and his monthly articles for the church magazine which he then puts on the blog.
“It’s slow and frustrating but, if I don’t do it, I wouldn’t be able to produce anything on the computer,” he said.
Within the parish, they work as a tight team.
Mrs Hore reads the sermons her husband writes, while an associate priest, the Rev Kevin Skippon, takes the services. Most church meetings are now held in the rectory as Mr Hore is practically housebound.
Louise Hough, of the Motor Neurone Disease Association, said: “About half of people will pass away within 14 to 21 months from their diagnosis.”
Mr Hore was diagnosed in September 2008 just a year after he moved to the parish when he noticed severe muscle cramps, weight loss and breathlessness.
The weight loss, he found out after visiting a doctor, was due to muscle deterioration.
“Looking back I had it for some years before that,” he said. “But you don’t go to the doctor with cramp.
“It came as a shock but life has to go on. There’s no point griping about these things,
“You have to make the best of things.”
With his attitude he has inspired his congregation.
His wife said: “In the church magazine people have been very impressed by his determination and his faith.
“People who might have problems of their own may be really helped by things Michael says and does.”
He put his writing on the internet to reach more people.
Mrs Hore added: “I think it is also because I have nagged him as I really think the things he says would be helpful to others.”
How does he keep going, working nine to five daily, despite having surpassed the life expectancy from diagnosis?
“The church is everything to him, it’s his whole life and career,” said Mrs Hore.
“That, and he’s always been a bit of a workaholic.”
Mr Hore’s blog can be found at mjhore2012.blogspot.co.uk
I have no right to be indignant about being ill. No one, least of all God, has been unfair to me. I am not a victim of injustice. It is simply a matter of fact: I suffer from motor neurone disease.
People often ask me how I am. I could answer with full honesty: “I’m suffering from motor neurone disease, which is a debilitating and terminal illness in which the nerves gradually close down. The truth is, I’ve lived longer than most people do with this condition, but as time goes on I am becoming more and more physically disabled...”
I am surprised by the joy I find in the birds and wildlife I see from my windows. I savour my food more than I did in the past (surely, it tastes better than it used to). I find myself more deeply moved by music and poetry, and even the emotions of a trite television play. I am grateful for the opportunity to sit and think without the distraction of a busy life. The value I place on relationships, particularly with those close to me, has become much more important.
What I find more difficult is the loss of small things. I can no longer hug my wife or help with the cooking. I have had to stop eating Jelly Babies as they are likely to get stuck in my throat or “go down the wrong way”. My fingers are too weak to change channels on the television. One of the most upsetting things was when I had to have my wedding ring cut off because my hands had swollen (the ring has now been enlarged and is back on my finger).
If people ask me how I am, I would much rather tell them about the positive things in my life: the things I can still enjoy, how I maintain a sense of humour, the ways in which I can still be of use to people, my continuing journey of faith, and the many ways in which I still feel blessed by God.
Make no mistake, I would very much prefer not to suffer from motor neurone disease. When it was diagnosed it seemed like a catastrophe; it still does. It has changed my life. But – and here is the strange thing – some of the changes have been for the better.
One of the things that enables me to carry on despite suffering from MND is the belief that I can still be of some small use to people.
I will not give up until I have fulfilled those things I feel called to do.