“I want my family to know that I’m as happy in death as I was in life”
13 May 2020
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Paul Jameson, 60, is the founder of Aura, an online platform where people can record their last wishes and leave messages for family and friends. To mark Dying Matters Awareness Week with this year’s theme ‘Dying to be heard’, he tells ehospice about his experience of living with Motor Neurone Disease, and his aim to change people’s perceptions of dying.
Four years ago I was running a children’s play equipment business with my brother. I was very engaged with my three children who were still in full time education, and I played a lot of sport, mainly tennis, golf and cycling. In short, I led a very active and full life.
In late 2016 I noticed that I was starting to slur my words. This was particularly noticeable after a couple of drinks. I remember feeling embarrassed that I was doing this, and the feeling that my friends must have thought I’d been on the booze too much.
On June 12th 2017, I was diagnosed with Motor Neurone Disease (MND) by my neurology consultant after months of tests. It was a shock, as I knew MND is a terminal illness with no known cure. What made it more shocking was to be told that the average life expectancy was around two years.
My wife took the news well. In fact she had suspected for a while what the diagnosis may be, as she’s a GP and had seen patients with the same symptoms. If anything the diagnosis has brought us closer together. We felt it was best to tell our three children before telling the rest of our extended family - we gathered them in the kitchen and broke the news. There was shock, tears, disbelief – a very emotional moment, but we hugged each other and the children showed an amazing level of support, positivity and belief that I would find a way through this set-back. That evening we spoke for many hours in a very intimate way, which helped us develop an even stronger bond.
I’m a very positive, philosophical person. There may have been a few days of anger, where I thought ‘why me?’ but my immediate reaction was to somehow turn this negative into a positive, and I started thinking about how I wanted to live the final years of my life. This included many bucket list activities as well as charitable work, as I felt I wanted to give something back to others who were less fortunate than me. One specific day, only a few days after my diagnosis, my tennis buddies came over and we played some tennis followed by a few too many bottles of wine. In one evening, we’d started planning my bucket list, which included climbing Mount Kilimanjaro and also putting on a big charity day at our local tennis club.
I’m lucky where others are not. MND progresses at different rates and my progression appears to be slow. My symptoms only affect my mouth region which causes speech and swallowing difficulties. I have found ways to communicate using a range of electronic devices. Day to day I feel fine and I’m just getting on with life as best I can and trying to stay positive and happy.
It has been difficult to start the conversation about my end of life plans. I have updated my will and started to write down my wishes for my funeral, charity legacy, end-of life care plan, and organ donation, pending putting these on Aura when the site goes live. What I do believe is having all my wishes, practical information and personal heartfelt final messages on a platform like Aura will help me open up the conversation with my family. So I’m getting all the information ready and then I hope to have a better conversation when they’re on the platform.
Doing all the research for Aura really helped me make plans. For example, I didn’t know some of the options for my funeral existed - I was unaware of what a direct cremation was. I’m keen to have a no fuss, low-cost funeral, don’t want to burden my family with additional costs at this difficult time for them, so my wish is to have a direct cremation and for my family not to have to wait in a cremation queue at the local crematorium.
I hate the word funeral, it’s far too sombre. It should be an event that celebrates life, mine certainly will be. I want it to be a happy and joyous occasion filled with music and laughter. No black suits or dresses, everyone should wear bright colours. Of course, I would hope there may be some tributes from the family and friends, but the mood should be celebratory, not serious.
I also feel that dying is taken too seriously! It’s going to happen to all of us, it’s not an unfortunate thing that just happens to a few people. So we need to just accept it, it’s the circle of life. It would greatly help society, the death experience and the grieving process if we all talked about it, and discussed death and dying more openly. We need to lift the taboo on the subject.
The single most important thing I want my family and friends to know is that I’ve had a fantastic, privileged and fulfilling life with no regrets. My family and friends have all been a huge part of this and made it possible. I want to do everything I can to help their grieving process. If they know that I’m as happy in death as I was in life, then this should greatly help them. I want them to be happy for me, not sad, and move on quickly with their life in the knowledge that I’ll always be there, if not in person, then in a virtual world on Aura.
I would like to be remembered as someone who gave it everything in life, had many friends, set an example, enjoyed himself and died in peace with a smile on his face.
