I grew up in Worcester from the age of 7, but when I was 19 I moved to London, where I spent most of my working life. As an 11-year-old, a friend of my parents had a cine camera, and I started making films. In my teenage years my friends and I had fun making more story-based films, like a spoof on James Bond, and other skits. I edited them in the old-fashioned way, cutting and rejoining the film—a nightmare really—and now they’ve all been digitised, although I say it myself, they’re quite good. Some of my friends went on to become actors, and one, Rob Edwards, has remained my closest friend.
In London, initially I worked for a bank, which I didn’t enjoy very much, but they gave me an opportunity to work in their computer centre. IT was a new direction for them at the time, so they were keen to recruit people who wanted to learn new technologies. We were clearing cheques in a huge centre in Moorgate, which was full of machines through which millions of cheques were read, then sent out to the bank branches round the country. We were all about my age—nobody over the age of 25—and although I hadn’t intended to develop a career in IT, I could see this might be a career opportunity, and it was fun working with such a young team.
I had hoped to find work in the film business, but although offered a job, the wages wouldn’t have even covered my rent. I had been really interested in filmmaking since boyhood, particularly the technical side of it, how films actually got made, but without financial support it was never a possibility. Eventually I left the bank, and my computer skills got me jobs with 2 oil companies, then with a software business where I ended up as director. My working life remained in IT until about 2000; in fact, I was part of a company advising businesses on the Millennium Bug—remember that?—which was interesting because nothing much actually happened; although I would say that was because we did a great job!
I became a bit bored working in IT and started working as a business advisor in EU projects, mainly in the creative industries. That took me all over Europe which was exciting, and I made some films as part of the process. Under the major European project Erasmus +, which was mostly about young people and education, one was in Turin. It was a very similar idea to Jamie Oliver’s “Fifteen” scheme, taking disadvantaged kids off the street and teaching them cookery. For that I project managed about a hundred and twenty filmed interviews.
Quite early in my London life I met my wife Ann at work. We married and settled in north London, where we brought up our son Christopher. Ann has a background in psychology, working for the NHS in the treatment of drugs and alcohol, and worked in Watford when we lived in Finchley. Ann’s mother, now aged 95, lives in Taunton, so travelling from London to help out became tricky. So, when Ann retired from the NHS we decided to move here to Seaton in 2013, after renovating this house. I was commuting to London for my work from Axminster station, which was easy. Then I had the stroke.
It was a strange thing because I had thought there was nothing much wrong with me; I was reasonably fit. I met somebody for a working lunch in London and began to sense something wasn’t right. My words started disappearing. My companion didn’t notice (because she talks quite a lot), and just thought I was a bit quiet. When I got back to the office I couldn’t write, or read, or speak, and ended up in University College London hospital (UCL) where they said I’d had a bleed on the brain. I was there for 5 days, mainly to get my blood pressure under control. I was never told the stroke was because of any one thing, but high blood pressure was a lot to do with it.
When I got home my motor functions were all ok, but my speech was poor, and I couldn’t write, or read. So, we booked some speech therapy, for which we had to wait 2 months. There was then 6 weeks’ therapy, and that was it. They helped me with word finding ability, and got me a programme on the computer which helps me retrieve words. But you’re told it’s unlikely you’ll get much better; after 3 months, the improvement tends to plateau. It was intensely frustrating. My body worked ok, my awareness was unimpaired, but I couldn’t communicate, and it’s called Aphasia.
The only way to improve the condition is not to give in. Some people accept their situation and stop trying to get better, but I just kept at it. It was very hard; I couldn’t drive for at least 6 months, when I was undergoing treatment at the Royal Devon and Exeter hospital. The speech therapy, which was very good, was done here in Seaton, and I was lucky that Ann, with her background in psychology, was able to give me reading exercises every morning, which were particularly helpful and kept me on track.
During my year’s recovery, I met the Aphasia support group, (then called Living with Aphasia), in Exeter, run by Barbara Chalk, an ex-speech therapist. They’re now called Say Aphasia. She told me their reason for existence was because Aphasia sufferers have nowhere else to go, and it struck me that something needed to be done about it; I decided to put together a documentary film. I had just started by filming a performance with the Living with Aphasia choir when the pandemic hit. I spent the next year planning the rest of the film, and after restrictions it was another year before I finished the project. I managed to raise some money though JustGiving, but it wasn’t enough because although many people helped voluntarily I needed to pay a few people for their services. So, I raised some more through Kickstarter, and with a contribution from The Tavistock Trust for Aphasia there was enough to complete the film. Rob Edwards did the narration, and I paid someone to do the research, the motion graphics, and a script editor. My PR is Carolyn Abbott who has been vital in the promotion of the film through social media, which is available on YouTube and Vimeo, and can be found at http://tipofmytonguefilm.com/
The film is aimed at two target audiences. The “professionals”, e.g. GP’s, whose direct experience of Aphasia may be limited, and Speech Therapists who may be able to use the film as a training resource. I’m a member of the British Aphasiology Society, for whom I’ve done a presentation which went down very well, and I’m hoping they will be able to offer some funding next year for more filming. The other target is the people at the sharp end of the experience; the carers, the spouses, and of course those who are on their own with very inadequate support, apart from people like Barbara. People in the NHS tell me what a marvellous thing we’re doing, but they either have no money, or time, or neither, to improve their service. And through the film I’m trying to raise general awareness of Aphasia, in a world which is overwhelmed with so many people with so many health problems.
This year I plan to do a podcast with Rob Edwards. We will be doing different podcasts for each different form of Aphasia, and I will be bringing in more people to interview, hopefully including some medical professionals. One acquaintance of mine, a clinical neuropsychologist, told me when he was a child, his granny had Aphasia and was completely non-verbal, although we now know she would have been aware of everything that was going on. In those days everyone just thought she’d gone gaga.
I play walking football at a club in Axminster, who have given me some more money towards my project. I will be giving this to Barbara Chalk, who is considering using the donation to teach Aphasia patients to work with iPads and apps designed for their condition. These days I occasionally struggle to find a word. My reading is ok but in very short bursts, and sometimes I lose the thread. And as I get tired, I begin to lose words so I can talk rubbish sometimes. It’s all in my head, none of it’s gone. It’s on the tip of my tongue.
