My experience of the media

Over the last couple of weeks I’ve been fortunate enough to be given the opportunity to experience many meetings with the media.

I had the wonderful experience of Channel 4 invading my living room. It really was a joy, if slightly scary experience… I did comment that I was disappointed that the word ‘suffering’ was used in the heading to the clip on the web, however, the presenter Victoria Macdonald, has redeemed herself and I had a text from her last week apologising and saying she has now got it changed – I imagine that those that write the article are often not the ones to put together the words on the web.

Jim from the BBC came to pick up his video camera last Thursday. He was a joy to work with and is involved in so many different projects. He was interesting to talk to and interested in what I had to say. His interpretation of our story is due to be screen early April, but the date is still to be confirmed.

Tom from the Guardian also did a good job miraculously reducing all the words me, Keith and Hilary had provided to fit the 2 page article he wrote on Still Alice – find it here:

http://www.theguardian.com/film/2015/feb/10/still-alice-alzheimers-accurate-dementia-sufferers-verdict

I said yes to all these because I thought they would write as I would write and accurately interpret the thoughts I wished to reveal. I have to put so much work into preparing for an interview to try to make sure all the right words are in my head – or at least some of them. The woolliness of thoughts is such a nuisance but that’s how I experience life on a daily basis. The challenge of preparing for interviews has certainly worked my sluggish brain so I see that as a bonus.
However, I also said no to quite a few. I wanted to get my voice out to as many people as possible but not at the expense of devaluing what I had to say. So I said ‘no’ to those which just didn’t feel right. I made the fatal mistake of saying yes, and then no to one tabloid. I naively thought saying no would be the end of it. I didn’t expect to continue to receive calls and email asking me to change my mind. Lesson learnt.

What all these ventures have produced are dialogue and that is exactly what I wanted. The comments, as always, to any article were very mixed. What a sad world the place would be if we all agreed with one another. With regards to Still Alice, those that criticised the film for concentrating on Alzheimer’s have missed the point I believe. The movie makers could have made 1001 different films and for each there would have been some who dismissed it as unreal or sentimental. What I see in the film, is a watchable, realistic portrayal of one persons experience. It is there to raise awareness and start conversations. It couldn’t possibly portray everyone’s experience of dementia as each is as different as the individual themselves.

Simply go and watch the film for what it is – a Hollywood interpretation of a brilliant novel of one person’s journey through dementia – simple as that. It’s due for general release on March 6th.

I’m just one of the many voices of dementia of the moment. None of this is done for personal gain,  apart from giving me the personal satisfaction of having my views heard.  As I’ve said before, my shelf life is short so I’m trying to make the most of it and raise awareness at every opportunity. I’ve still got much to say, so until I lose the ability to articulate, I’ll continue to stand on my soap box.

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

5 thoughts on “My experience of the media

  1. Wendy, I find you inspirational and look forward to your blog. My mum has Alzheimers and has it for a long time now (she is 89!!). I started reading your blog in an attempt to understand mums journey. Even now she can still make us laugh out loud and still shows signs of her razor sharp wit despite her condition! Good luck and best wishes to you. ps we live in West Yorkshire, isn’t Yorkshire great!

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  2. Hi Wendy, you’re such a great advocate and it’s a true delight reading your endeavors in your blog. Keep up the excellent work and thank you for being so inspiring! A big hug, Eloisa

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