To my friends, family and colleagues
In 1992, my company Hayes Davidson entered a competition for architectural illustration. I submitted 2 images in my name and a third in the name of Bob Hayes. This was all a bit of fun; no-one knew that there wasn't a partner called Hayes in the company and that Hayes was my middle name. Bob duly triumphed and won the prize; about £2,000 in today's money. After I did some research, 'Bob' and I donated the winnings to the MND Association. I had found out that MND, Motor Neurone Disease (ALS in the US) was a rare, rather cruel and terminal condition with no known cause, cure or treatment. There was an urgent need to support MND charities. This was the first charitable donation I had made and I was keen to make more.
20 years later, in early 2012 I found myself walking into a small windowless room at London's Charing Cross hospital. In 6 minutes I was told by a consultant that I had MND and that I was unlikely to live longer than 5 years. My body had been whispering clues to me for some time but it was only in March 2011 when I experienced a problem skiing that my body started to speak more clearly. 10 months of tests led to that room in Hammersmith.
I didn't broadcast news of my diagnosis as my instinct was to get on with life and shield others from the information. As long as the condition wasn't obvious, I was keen not to interrupt people's lives.
This is the first time I have written openly about the diagnosis and it's the first time that more than a very small group of people will hear about this.
I am writing now for a number of different reasons.
I'm writing this so the elephant in the room can be gently led away. It’s not realistic for me to continue to deny that something is wrong, to say that's it's just 'leg problems', or that the condition is simple, static or that my life isn't changing. There's a point where I have to accept that I am partially defined by a disease. Not beaten, just that it's unavoidably become a part of me. And there's a point when its not possible to deny that there is a bit of a battle ahead and that help will be needed. I hope it's a chance for those around me to accept this quickly, be reassured I'm ok, and I hope not feel too uncomfortable later when things become tougher. It's a gentle request to a wider group of friends to keep their radar on for me.
It's a thank you letter to the amazing people who have helped me so far. I hope that writing removes the pressure from family and friends who I asked to be discreet about my condition and who have been spectacularly kind to me over the last 3 years. I am stunned by the support and kindness that I have experienced and I cannot express my thanks enough.
Crossing this threshold allows me to openly help, increase awareness of, and support MND charities. The average lifespan for MND patients from diagnosis is 18 months ; the relative slowness of my condition means I have an insight into the disease and I want to help.
The positives: I'm in good spirits. I try and live more than one day every day. I enjoy doing a full day's work, and I have help. Life is good. I'm blessed that I have the love and support of a wonderful family and an amazing group of very close friends around me who have sustained me; friends who help, stay with me, cook, share films or theatre - and push me around, here in London or further afield. Since I was diagnosed I have skydived, floated in zero-gravity, swum between Mediterranean islands and travelled extensively. The assistance at train stations, airports and hotels often means golden-ticket privileges - and for passengers travelling with me. And my life is improving by being able to be increasingly productive and connected online.
I adapt as I can, and for the most part I am managing to accept change. There is a tedious reality to a typical day which involves crutches, the wheelchair, frustration, pulling myself up and down stairs on my backside (yes, I know. I will move soon x), sometimes putting on appearances, a struggle writing and increasingly shaky drawing. The guitars are looking a little unloved. Those who know me well will know just how difficult it is for me to accept help but thankfully I am over that hurdle. It’s not a simple condition; things will become complex and so I am trying to prepare and arrange help in advance. There have already been some challenges and I know there are tougher times coming but I try to live in the present, knowing that this week will be better than the next. I am trying to think about the time ahead as an adventure, albeit clearly with many unknowns.
I'm not giving up and I will beat the original 5 year lifespan projection I was given. MND shuts down the muscles bit by bit, but as long as life persists MND spares the brain, eyes and ears. Recently the consultants have defined it as a type of MND which if I'm lucky should allow me a few more trips around the sun.
Which all means a lot can still be done. I'm still full of projects and ideas, and I am especially focussed on doing things to help others. I have a clear vision of what I want to do and I'll do the very best I can using what I have in the time left.
I have no anger about what is happening and no fear. It's life. It's nature. We are all heading the same way, and I just have the benefit of a bit more information about my likely timetable which has allowed me to plan ahead ;
Over the last year, I have prepared Hayes Davidson, the studio of architectural artists I founded in 1989 to become a 100% employee-owned company. They are a marvellous group of people going from strength to strength, hugely talented and I care for them deeply. I will continue to work with HD with the comfort and knowledge that everything will be ok for them.
I have started the HD Foundation to support many causes, including MND related research and initiatives. I will continue to make gifts into the charity. I am donating the payments made to me from the work I do; from HD, consultancy and non-exec work. I have multiplied Bob’s original charitable donation a hundred-fold and it's my goal to multiply it many times more. I am working on development projects to be gifted into the Foundation and through which I hope to create more for charity. I am determined to do as much of this as I can while I’m around. I hope to send links to the HD Foundation website soon.
I am sending this to many people, and I am sending it to you for reasons that we together will know. I take great comfort from the idea that gentle cocoons of support can be made from multiple strands of kindness and connection, and knowing that from this everything will be ok for every one of us. I am looking forward to time that we might spend together, whether it be working, meeting, eating, enjoying life or just basking in the sun; all immense joys when shared.
I am at peace with what is happening and that life is likely to turn out shorter than I thought it would. I am always just so delighted that I have the chance to live at all. And there is still life left to live.
With much, much love