Posted by DMC on Feb 17, 2010 in
Diary Today I was interviewed by a delightful young journalist, Alice, from the Cambridge Evening News, which publishes the regional newspaper. I agreed to the interview with the caveat that the emphasis of her article should be to publicise the blog and its objective of helping others, and so far as it is possible; to downplay me as an individual. Inevitably, there will be some element of that but I truly hope that she does do not overplay that aspect.
Tags: media, news
Posted by DMC on Feb 20, 2010 in
Diary I have been very badly let down by the press. (See 17 February entry). ‘My lovely’said I was naive to give the interview, in the first place – and how right she was – but the journalist, Alice Ryan, seemed genuine enough and assured me she would honour the caveat that I laid down, before agreeing to be interviewed, that the emphasis was to be mainly on the blog and the benefits that I hoped it was conferring on others. To be fair, she did ring me and read out the entire text (against recognised journalist practice ) which I was perfectly happy was a fair representation of our discussion. The problem came in the sub-editing, which was precisely the point that I made to journalist that I wanted to have some control over. Instead, the editor included a rather poor photograph of me in colour, on the front page with the caption “ Why I’ll take my own life”. Then inside, we see a full page and a third of text, under another photograph, this one covering two thirds of the page, with the caption “ I’m dying – and I’m going to do it my way”. This is definitely not the way I put it.(why am I surprised!). What I actually said, after explaining the progress of MND and how one can eventually end up lke a vegetable unable to speak or move or swallow, was:
“…… when it gets to my throat, I’m going have a couple of bottles of Bollinger, soft music, my family around me, the old photos out, and I’m going to slip away, while I can still do it myself”
Having said that, these comments were only made in the context of the current debate about assisted suicide and form a miniscule part of the interview but, of course, as we all know, good intentions and beliefs do not sell newspapers but sensational and dramatic headlines clearly do. I am deeply disappointed as these captions are clearly depressive and go totally contrary to the objective of this blog, which strives, through logging my own experiences, and those of much braver people, to be inspirational and forward-looking and certainly not about dying. Let us hope not too many people see the article.
This whole episode reminds me of the story of the Bishop who, when he disembarked in New York was asked: ‘What do you think about the prostitutes in New York?’
The Bishop, slightly bemused and totally perplexed by the question, enquired, ‘Are there any prostitutes in New York?’ and it was his enquiry to the question that formed the precise headline to the report of the Bishop’s visit. Well, that’s newspapers for you.
To top off great day I managed to repeat the backwards tumble down the staircase that occurred two nights before. Again from the top step crashing to the floor below, taking ‘my lovely’ with me, who was following behind me halfway up the stairs. Amazingly again no broken bones but more bruises and scrapes. Alice got me back upright and I was forbidden ever to attempt the stairs again. Fortunately, only yesterday Alice had had the foresight to have a bed set up at the end of the sitting room, anticipating the need at some near date, but not, I suspect, quite so soon. I am clearly indestructible, as one of my good friends has said.
Tags: fall, indestructible, media, news
Posted by DMC on Feb 22, 2010 in
Diary All hell let loose over the past two days as a result of the article in the Cambridge News. I have received calls directly or indirectly from The Daily Telegraph, The Daily Mail and the Sunday Times as well as calls from various BBC radio stations all requesting interviews. Whilst initially I acceded to the first request, that from The Daily Telegraph, ultimately realising how unhappy it was making ‘my lovely’ and my children, late last night, I rang the journalist and said I could not go ahead with the feature article. I have been too badly let down by the Cambridge News and whatever assurances she gave at the end of the day, with the best intentions in the world, she would not have complete control over the editorial substance or indeed sub-editing so I was not prepared to take that chance.
The problem is that there has been so much debate recently about the assisted suicide – almost every day someone confesses on the television at having ‘assisted’ a loved one ‘on their way’ because of unbearable pain or other – and the fact that very shortly a green paper will be published on the subject, has made this a hot issue and one which I suspect no national newspaper could ignore if I went ahead with a further interviews.
So, having given an undertaking to ‘my lovely’ and the children that that is the end of it, i.e no more media, I have weakened in one respect where one of the Nationals ‘were so excited about the blog’ that they have asked permission to publish some choice extracts with a promise of no accompanying editorial, other than a short introduction, and have offered to send me the precise extracts giving me complete freedom over any that I wish to delete (or indeed add) and control over the headline. I have said neither yes or no to this proposal but have promised ‘my lovely’ will have the final word, she will go through and decide on any deletions or addition. When she is completely happy I will also let the children see what is proposed and hear their views but I suspect they will agree with their mother.
What a business! I deeply regret having started with the anticipation of extending the readership of the blog to thousands more people, some of whom might have to derived some small comfort or pleasure from it and instead ending up with a great deal of aggravation.
Tags: media, news
Posted by DMC on Feb 24, 2010 in
Diary In the event, the Daily Telegraph were true to their word and reproduced precisely what we had agreed to. So hopefully that is the end of the media frenzy. As a result of that article and the previous ones appearing in the Cambridge News and the Daily Mail, my e-mail box has been red hot with messages from all over the world, all of which, I’m glad to say, were complimentary and though some came from people with MND themselves and others from their carers, some from individuals who were just inspired by the blog which I found particularly encouraging. One, example, read as follows:
“Hi professor. i am a young guy in China, reading your blog is really help me a lot.
I awlays complaint when I am in some bad situation before, but now you make me know how to face trouble, how to have a positive attitude to our life. i really appreciate.
Now, I am definately sure nothing can beat me.
Anyway, we celebrate the Chinese new year (the tiger of the year) in our country. i wish you professor a good health like tiger, all the best in the new year.”
I have reproduced this precisely as it came to me, warts and all, but before anyone sniggers at this spelling and grammar, ask yourself how good is your Mandarin? What a wonderfully inspirational response this is. To think that this young man is not sick, dying or depressed but just inspired by the blog. It makes me feel very humble and certainly inspires me to go on writing it.
As a result of the two falls downstairs and being absolutely prohibited by ‘my lovely’ to make any further attempts to go upstairs, I have now slept in the sitting room for the last two nights. A strange sensation after the best part of 50 years in my beautiful four poster upstairs. However it was not as weird as I thought. The good thing is that I can still manage to get out of bed by swinging round and clutching onto an adjacent heavy armchair, If I need to go and have a pee in the middle of the night. This, instead of yelling for help from ‘ my lovely’. I’m spoiling her beauty sleep.
Tags: blog, media, news, sleep
Posted by DMC on Mar 4, 2010 in
Diary As I said about, yesterday, a very pleasant young man, Duncan Johnson came to see. Having seen my blog, he decided he would like to include a profile of him a future copy of the Journal. I suppose as much as anything what I have done over that time may be of passing interest to some young surveyors starting out on life. Anyway we had a good chat, and lunch at The Cricketers – Jamie Oliver’s dad’s pub -and Duncan made a few notes but absolutely promised not to mention assisted suicide which has caused such a storm in the recent media exposure from which I and my family have suffered.
The massaging of the fluid in my hands is now a daily occurrence.’ My lovely’ has generously added it to list of the many other duties that she now has to perform for me, having seen both Ali and Mel ( Plumb) the neurological physio, demonstrate the technique. In addition we do a few minutes of arm circling with the arms pointing vertical towards the ceiling to stop the shoulder joint getting too stiff. I really cannot understand why I was not recommended to both of these activities many months ago which I’m sure would have helped to extend the use of both hands and arms. I shall raise it at my next assessment in April.
When looking for an article on the New York Times on the web, I came across what claims to be cure for MND a drug or pills by the name of Troneton. Of course this is a scam, as is set out on the ALS/MND support forum group page. I’m just surprised that the advertisement is allowed to continue to make these extortionate claims and that the server has not banned the entry.
Tags: exercise, media
