‘Very Much alive’ by Paul Jameson


How a terminal illness inspired a life of adventure, meaning and purpose.

When we hear about people faced with a terminal diagnosis, many of us may ask ourselves ‘what would I do’, ‘how would I react’?  In this moving, uplifting and inspiring book, Paul Jameson gives his truly action packed, honest and very personal reply. 

Diagnosed with Motor Neurone Disease (MND), a life-changing and life-limiting condition, Paul has chosen to embrace the time he has left and to live life to the full.  In the process, he learned a lot about himself, about how society views death and dying, and how it might be possible to make positive changes through action and entrepreneurship.  In ‘Very Much Alive’ Paul shares this knowledge and takes us to some of ‘the surprising and wonderful places’ that his MND has taken him.  His ‘can do’, ‘just get on with it’ personality radiates from every chapter.

In the 5 years since Paul, now 62, was diagnosed, he has endeavoured to make every day count.  To pack in as many experiences as possible and to savour, and learn from, each and every one of them, good or bad.  He also reflects that, ‘Over the last five years, I’ve reached a state of contentment, inner peace and happiness that I’ve never had before’.   He adds, ‘I think we as a society have got it badly wrong about death…approached in the right way, the knowledge that our time here is limited can be the most life-enhancing thing there is’. 

As well as fulfilling his emotional and physical bucket list, Paul has raised over £200,000 for the MND Association – an achievement recognised when he was awarded a British Empire Medal by the Queen in 2020.  A serial entrepreneur and successful businessman, Paul also wanted to put his extensive experience to good use.

‘After my diagnosis, I started to think more about how I wanted to be remembered and the legacy I wanted to leave for my family’, Paul tells us.  This included messages to his children and making sure everything was in good shape on a practical level, and also recording details of his funeral arrangements.  He wanted to be able to talk openly to them about it, without fear or discomfort.  ‘I really believed that this approach would help my family grieve and become the final part of my legacy.’

Finding nothing online, Paul decided to create something that could be of genuine benefit to society by helping people to deal with the hardest inevitability of all.  So he set up Aura Life, an online platform which aims to provide a better end of life experience for people, whilst trying to remove the fear of dying by opening up the conversaton around death.

And what of his funeral wishes?  True to form, Paul wants his funeral to reflect his life and personality.  He says, ‘I wanted to let people know that I’d had a wonderful and happy life and felt that should be celebrated.  I wanted my ending to be different – whacky, fun-filled, humorous, nothing serious and followed by a heck of a party.’

Paul told whiteballoon that the main reason he wrote the book is that he always regretted not really knowing his father, who died when Paul was 14.  He reflects, that he wished he’d known ‘the real him, what made him tick, strengths/weaknesses, beliefs and philosophies’.  The book, he feels, is a way of ensuring ‘that future generations will always have a reminder of the real me – a lasting legacy’.  Paul’s legacy will be not only this wonderfully positive and uplifting book, but also Aura Life, and the very real difference that the money that he has raised will make to the lives of others living with MND.

All profits from the sale of this life-affirming book go to the MND Association, which funds research, improves care and provides support for people with MND, their families and carers.

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