Not sure what I was expecting when I was asked to allow a film crew into my house but I wasn’t quite prepared for the amount of equipment that came in with them…….. The cameraman, producer and presenter, Victoria
Miller Macdonald, (personal joke) were all wonderful people and clearly very good at their job. The amount of furniture moving and filming that is needed for such a small piece was staggering.
I must confess to thinking that the interview would appear melancholy because I wasn’t sure which bits they would leave on the cutting room floor. However, I think the piece was very well balanced and showed positivity as well as reality. The only negative, if there could be one, was the reference to me ‘suffering’ on the web site, but I think both myself (and Julianne Moore in her interview) reaffirmed the notion that we do not suffer, we ‘struggle’ with the disease. Victoria commented that I only paused to think of the right words briefly. What she wasn’t aware of was the two hours I’d spent prior to their arrival reading and re-reading my notes to ensure I had some words in my head. This is all part and parcel of the everyday adaptions you have to make to fit into normality.
My special moment in the piece on the news programme on Friday was when Julianne Moore actually remembered meeting me. I’m sure it was genuine and not stage-managed as her eyes lit up. I’d said to her that she had the advantage over me as she could choose to remember our meeting, whereas I would forget. Well the memory is still very clear in my mind and the photographs and signings provide an even clearer picture. She has, through making one film, raised more awareness for dementia than I could ever wish to do. She had done so much research before playing the role and it certainly showed when she spoke to us.
I have a very short shelf life in my ability to raise awareness and have told the Alzheimer’s society to make use of me while I’m able. I’m a very private person who has allowed anyone who cares to, read about me and my experience of living with dementia. It’s my way of speaking out for those who feel they have to remain silent through embarrassment.
Not everyone will agree with what I have to say or the way I say it, but it would be a sad world if we all had the same thoughts and feelings. All I want is for my words to evoke dialogue and discussion. I’m not embarrassed to have dementia. It is a brain disease that can affect anyone.
After the film crew had left, I couldn’t remember half of what we’d filmed and some came as a total surprise when it was shown on Friday!!
They always say experts make things look simple – next time I watch a 5 minute interview on telly, I’ll know the amount of effort and time it has taken to produce.
Thank you to all those who sent txts, emails and kind comments. Another wonderful experience thanks to the Alzheimer’s society.
p.s. The fact that I’m awake at ‘silly o’clock’ means that ‘normal o’clock’ isn’t an option. This means I missed the fabulous news that Julianne won the BAFTA last night. It also meant I missed her thanking me, Christopher and Gillian in her acceptance speach. and in her interview with the press afterwards. The fact that she remembered us and bothered to mention us was very very special.