I have to admit that I found the latter part of 2008 hard. A combination of career issues, financial issues, health issues and relationship issues conspired together to make the last few months stressful and challenging. I would have been able to manage any one of the issues on their own but combined together, it made for a difficult time. I know that there are many others with significantly more challenging lives to deal with (see later) so the purpose of starting the story like this is not to draw attention to my difficulties. It just serves as a way of letting me state that at the end of last year I honestly felt I had lost my way….
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In 1998 I read a book that genuinely changed my life. The book was extremely short (about 120 pages) and was essentially a diary of a man talking about simple human experiences like describing the love for his children, the enjoyment of simple things like taking a bath or visiting the beach. What made the book remarkable was how it came to be written. The author had been in a medical condition known as ‘locked in syndrome’, a condition where a person ‘appears’ to be in a coma but has full sensory capability but no motor capability to react. The author was in this condition for a long time before it was realised that he was not in a coma at all but actually fully conscious. He effectively wrote the book by blinking. An aide would present him with the letters of the alphabet one by one and he would blink once to pick the letter he wanted to write. The author was Jean Dominique Bauby and the book was the Diving Bell and the Butterfly. A marvellous film based on the book went on general release recently.
The book was an incredible inspiration to me. I was really struck by the wisdom in the book. Bauby, despite (or perhaps even because of) the prison he was in, was able to notice simple, beautiful aspects of life often sadly missed in our busy lives. He was able to transcend his circumstances and, to me, became a shining light of how the human spirit can prevail in the most challenging of circumstances.
However, we were lucky that Bauby prevailed and that the Diving Bell and the Butterfly was written. It could so easily have been the case that the butterfly was never heard beating away inside the diving bell. And Bauby unfortunately passed away days before the book was published.
At the time it made me ask the question how could technology have helped Jean Dominque Bauby?
Many years later in Media Lab Europe we developed a system called the Cerebus brain computer interface which was a system Bauby could have used to write his book. Sadly, a little bit like the story of Bauby, Media Lab Europe closed before we could complete the Cerebus system.
Although the Cerebus system was a marvellous academic endeavour, it was an exercise in rationality on my part. If I am honest about it, I had made no real emotional connection between the Cerebus invention and the plight of Jean Dominque Bauby. Developing a brain computer interface was just a scientific pursuit as far as I was concerned. This essential truth did not bother me till last week….
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Only the people closest to me call me ‘Gar’. It’s the rare use of this abbreviation of my name that makes it very special to me. The people I deeply trust and love use call me this when some powerful connection between ‘us’ has been established…..
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I visited my son at the beginning of January 09 for his birthday. He is now 13, a teenager, and he is growing into a marvellous confident capable young man with every year that passes. Even though I do not get to see him as often as I would like, the time spent with him is precious and life giving to me. He is growing more assertive as he gets older. On this occasion he asked his mum could he take his first day back at school off.
‘It’s like this Mum’ he said.
‘It’s the first day back at school and I would prefer to spend it with Dad. I don’t get to spend as much time with my Dad like other children. I think it’s only fair. Besides we will do very little on our first day back’
He got the day off and we had a great time together. This is the first time this has happened. It really brought it home to me that physical presence is essential for a good relationship. Nothing beats a good face to face connection with somebody. It made me question that with all our marvellous technology to have facebook connections etc all over the planet are we really nurturing good relationships? Because we can spend a lot of time in cyberspace keeping those connections going at the expense of spending some life giving face to face with people that matter…
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Just before Christmas a young man called Stuart Mangan came to my attention. On the 5th April 2008 Stuart was tackled in a rugby match and ended up paralysed from the chin down. He is now entirely dependent on his family and friends for all his basic needs. He was 24 years of age when the accident happened.
I was asked by various people could technology help Stuart in any way and would I get involved in the project (there was a lot more to it than that but the details are not important here).
To be absolutely honest, I was reluctant to get involved. It was not because I did not see the cause as a worthy one – on the contrary, spending time and resources to improve some bodies life is something I passionately believe in – its just that I was not in a good place, I had little energy to devote to problems other than my own and I was deeply concerned about creating false expectations. I really had lost my way.
The other big challenge I was facing is that, now days, when I see a young person suffering or struggling I see my son Osian through their eyes. I think of how I would feel if Osian was suffering in the same way?
In the past I did not have emotional connections like this to relate to when I saw suffering. I was always able to observe suffering in an abstract way and once again put no emotional investment into the experience. I am sure this is useful in a time of crisis but to be honest I am not very proud of it. I would rather be like my brother who bursts into tears at the slightest hint of human suffering;)
Anyway, despite my reservations I agreed to get involved…..
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A day or so after visiting Osian in Wales this year, I found myself in Las Vegas for the Consumer Electronics Show (CES). CES is the biggest technology trade show on the planet and if you want to find out what is current in technology, go to the show and immerse yourself in geekdom and gadgets.
I was particularly struck by the keynote addresses given by Craig Barrett, Chairman of Intel and John Chambers Chairman and CEO of CISCO, two of the most influential people heading up two of the most powerful technology companies in the world.
Both men gave deeply moving accounts of personal experiences they had had in the developing world and urged the technology industry to embrace opportunities there. They both championed the line that ‘you can do good and do well’ and that this mantra was the way forward for the technology industry.
I was really struck by the fact that it was a personal, face to face meeting with people in the developing world that inspired these two powerful men to come to the conclusions they had come to. Real human connections can inspire. Real human connections matter…..
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One evening late on, a day after the CES show, I found myself being drawn to a really beautiful woman behind the bar in the hotel I was staying in. I decided, despite my aging years and diminishing charms, I would have a go at chatting her up. I thought I was getting on fine till I worked out that the woman was only nice to me when I kept her tip box full. Even the simple things in Las Vegas cost you money. In fact the whole damn place is one big ugly monument to the accumulation of wealth. It’s an ugly monolith raised to give reverence to our most primal instincts of fear and greed and made palatable through clever advertising using strong sexual imagery.
The following few days were wonderful. A good friend of mine and I, rented a 4WD(well he rented the car and I sponged a lift) and we took a few days circling the grand canyon and spending time in some of the less well known but stunningly beautiful national parks in southern Utah. It was cold, and just at the end of the snow season, so we found ourselves almost alone in many of the parks we visited.
Another great friend, John Moriarty, who passed away two years ago (and whose birthday is the 2nd January – one of the reasons I am writing this today) was deeply inspired by the Canyon. I now really understand why. In contrast to the ‘transactional’ nature in ‘artificial’ Las Vegas where everything costs you money (including despair!), here was nature, through awesome natural beauty, raw and free, inspiring the higher instincts of wonder, thankfulness and reverence to the divine.
We really do seem to have lost that wonderful instinct. In short, as John Moriarty often reminded me, one of the first things we did as conscious beings was to raise standing stones to give reverence to the Gods….just reflect on that and then think of Las Vegas…..
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I came back from America the day before Obama was inaugurated as president. Things were looking up. I had read Obamas book, ‘The Audacity of Hope’ in Kenya in 2005 (it was in every bookshop long before he announced his intention to run for the presidency mainly because his father was Kenyan). The book is a wonderful eloquent treatise on how an empathetic man views leadership in our troubled world. On reading the book I truly wished I had that kind of empathy.
I remember putting it down and saying to myself at the time wouldn’t it be wonderful if a man like Obama could get into a significant position of power.
Fingers crossed…..;)
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I made an arrangement to visit Stuart at his new home in London for the 29th January. Just before Christmas I met some of his family to get their permission and guidance on how technology might be able to help Stuart. He was to be moved out of hospital to a flat in Notting Hill where he would get 24 hour care and support though the British Health system. This would take a few weeks to sort out so the end of January seemed like a good time to arrange the visit. Given all that happened I am so glad it worked out this way.
The basic plan of action was simple. Stuart was able to speak really well but was struggling to get standard speech recognition software to understand him. About 25% of his speech was being recognised. I was to bring over some recording equipment so as to be able to analyse his speech to see was it possible to ‘equalise’ it so that a computer could better recognise what he was saying. There are very powerful mathematical techniques that may be able to tackle this problem. My PhD might actually be useful for something!
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I arrived in London surprisingly nervous and down. As I made my way by Heathrow Express to Paddington, I could not get it out of my head that here was a young man who had suffered a tragic accident but whose marvellous family had rallied around to support and manage the situation. What would I do in the same situation? Would I have the mental resolve to face such a challenge? Would I be able to meet people’s expectations? I was actually genuinely plagued with doubt.
Perhaps I was spending too much time thinking (and despairing!) and not enough time concentrating on getting to Stuarts house but in any case I got lost. I decided to walk from Paddington Station to Stuarts house, (about a 15 minute walk if you go the right way) so as to familiarise myself with the community where he lives, but took a wrong turn somewhere and ended up disorientated.
Then out of the blue I came across a ‘sign’ that to anybody else would have meant absolutely nothing. I found myself staring at a signpost that said ‘Garway Rd’.
You might consider me mad at this point. I suddenly felt that everything would be fine. I had found my way. I was on the right path. It was a subtle, gentle and deeply affectionate gesture. It made me smile. It made me feel hope.
Garway road led me to the hotel I had booked into. It was called the UMI hotel and for the briefest moments it felt like a welcoming shelter (before I saw the rates of course). I had a quick chat with the hotel staff and then made me way around the corner to Stuart’s house.
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Stuart is an extraordinary young man. He has taken on the challenging circumstances he has found himself in with a positive attitude that is truly humbling. He is on a ventilator which means that he needs 24 hour care. He has side to side movement of his head but no backward or forward motion which means that when he travels in a car his head needs to be fixed which can be very uncomfortable. Every morning he undergoes a 3 hour procedure to get himself washed, medicated via suppositories, his muscles massaged, his body hydrated and fed. The ventilator gives a fixed supply of oxygen, via a hole in his neck, 24 hours a day but on occasion he needs to have extra oxygen pumped into his lungs so that his vision does not blur. His body temperature has to be constantly checked because he has no feeling from the chin down.
And yet, despite all that, he remains positive and hopeful and enthusiastic about life.
He told me the story of what had happened after the rugby tackle, details I was completely unaware of. He had stopped breathing for 8 minutes after the tackle and had slipped into a coma. It transpired that a qualified paramedic at the rugby game kept him alive via CPR during those crucial 8 minutes before the ambulance arrived. He was rushed to hospital and the initial prognosis was that he might have brain damage beyond the break in the upper park of his spine. Stuart underwent a number of operations later to stabilise his spine but it was still not clear if he would speak again.
During a family visit, when they were reliably informed that Stuart was still in a coma, he got their attention by blinking furiously at them. Over time he was able to spell out words in the same way that Jean Dominique Bauby blinked out his book.
Speech therapists got involved and as Stuart came off his medication he began to be able to make sounds. He only had (and still has) control over his upper throat muscles and so he had to learn to swallow food and manipulate his mouth in a different way. He had (and still has) no control over his lungs so he had to learn a new way to control and modulate the air to make the sounds he wanted. Over the course of a couple of months he made rapid and extraordinary progress confounding everyone involved. His sheer force of will and drive made all the progress possible.
I suddenly realised that I was now effectively meeting Jean Dominique Bauby.
To all intensive purposes, had Jean Dominique Bauby been able to develop speech the way Stuart had done he would be communicating in exactly the same way. There was no barrier to protect me from an emotional connection to the person in front of me. The diving bell was lifted and I could see the butterfly.
Now I really did understand the metaphor. Now I had the emotional connection. Now I had skin in the game.
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So what is this all about?
I was tempted not to write anything at all and let the story speak for itself and then I thought it is probably better to write down what the story means to me as it was the inspiration for writing it in the first place.
So don’t read this bit if you have come to your own conclusions!
The whole unlikely sequence of events has made me realise that genuine real human connections matter and implicit in this is that every person matters. I do think we are moving away from this fundamental point and need to get back on track rapidly.
Were we to start thinking about how technology can improve human life for those in challenging circumstances and indeed encourage the next generation of inventors and entrepreneurs to think this way, then we would do society and the world a great service.
Were we to start thinking about how technology can actually make more real human connections happen (and I mean real in terms of encouraging people to sit down face to face and engage emotionally with one another) then we would be doing society and the world (particularly the western world) a great service and we might encourage more invention of technology that serves a deep societal need but also makes business sense. (Craig Barrett and John Chambers now agree with that!).
Perhaps with a stronger focus on people and relationships then it might not feel like we have lost our way.
And of course there is always hope even when it seems that there is only despair – you just have to look carefully for the signs.
Thanks John.
Thanks Stuart.
GMcD 2/2/09
