“O reader, do not ask of me how I grew faint and frozen then – I cannot write it: all words would fall far short of what it was. I did not die, and I was not alive; think for yourself, if you have any wit, what I became, deprived of life and death. “
Dante Alighieri , ‘ The Divine Comedy: Inferno’
Prologue
Gustav Mahlers magnificent 8th symphony was composed in an intense 6 week period in the summer of 1906. Its an incredible creative achievement involving ‘around 1000’ people to perform the work (its often called the ‘Symphony of 1000’). Mahler composed it around the core idea of the redemptive power of love and creativity and a fundamental belief in the human spirit - the symphony itself being an example in evidence. I have always been interested in the romantic period of classical music but was particularly drawn to Mahler's 8th symphony. It had a profound impact me. I thought I would never be more in awe of an artist after a creative endeavour.
I am now.
***
I came to know Simon Fitzmaurice through my youngest brother Phil. Phil and Simon were best friends growing up. I am eight years older than Phil and was considered too old to mix with his peers so I never really got to know Simon when he was in full health. I lived the powerful friendship between the two young men vicariously, through stories Phil would tell me. I was always impressed by how much energy there was in any of their many encounters.
In 2008 Simon was diagnosed with Motor Neuron Disease and given 4 years to live. I remember my brother ringing me one evening that year and asking me about the diagnosis. I had some familiarity of the disease given my background in bio-medical engineering and so I gave him the grim knowledge I had on MND - an incurable, cruel and unrelenting disease that can end in what neuroscientist’s call a ‘locked in’ state.
Coincidentally, Phil and I were part of a multi-talented multidisciplinary team called MindGames in MIT Media Lab Europe that had worked on a brain computer interface a few years previous, to enable people communicate from a locked in state. We had been inspired by a book called ‘The Diving Bell and the Butterfly’ written by Jean-Dominque Bauby in 1995, who had suffered a massive stroke, was believed to be in a coma but was in fact ‘locked in’. He blinked out the book answering yes or no with blinks to letters he wished to write down. It is a beautiful book that was made into a film in 2007.
Our group worked on a wireless Brain Computer Interface called Cerebus that allowed somebody, using a binary interface, to communicate even if they had no motor control. Even to this day I consider it one of the most amazing projects to have been involved in and have made lifelong friends as a result of it.
I mention this because, in a strange twist of fate, after Simon was diagnosed with MND many of us that were getting to know Simon better as he struggled with his illness, went on a strange journey that mirrored that technological pathway.
Simon died two days ago. By all accounts the last ten weeks have been an extremely challenging time for him, his family and his closest friends. I really want this short tribute to let them know that their extraordinary son and friend had a profound positive and inspiring impact on so many of us. In some small way this may help lighten their grief.
Simon had a movie that he wanted to make. It was called ‘My Name is Emily’. As he says himself, he started writing the script with his hands and finished it by just moving his eyes.
As MND progresses, a disease which attacks the motor neurons in your nervous system (these are the control pathways to essentially manage muscles to allow the body to move), you eventually lose the ability to walk, to move your hands, to speak, to even breath. Without technology MND requires a relatively short amount of time to kill you (one very famous counter example to this is Prof. Stephen Hawkins who has had MND for almost 50 years).
As MND took abilities from Simon, he sought out different technological means so he could pursue the ambitions he had set himself. A wheelchair with stand up capability, a portable ventilator so that he could be looked after at home and crucially an eye gaze computer that tracked his pupils so that he could communicate and continue working on his film.
Its worth emphasising this point here. He wrote and directed a full length feature movie just by moving his eyes.
There were other challenges at every juncture along the way which he managed willfully with his magnificent family and friends, Doctors who wanted him to stay in hospital so he could ‘die’. Funding problems around homecare (he became one of the first people with MND to be home ventilated), light problems with the eye gaze computer when he was trying to write outside and so on….
That he was able to do so much under these constraints is testament to the remarkable human being that he was.
At one point, whilst he was still able to speak he asked me would it be possible to build an artificial voice for him (based on recordings of his actual voice) so that when he was unable to speak his children could still hear their Dads familiar voice as he communicated with them.
This is not a simple task it suffices to say. Speech synthesis is actually more difficult than speech recognition. However, we managed to get a team of volunteers together on the project and even some state of the art software just developed for this very problem but unfortunately we were unable to create the voice. We were tantalisingly close but there just simply was not enough time.
I still regret not being able to do that and I hope somebody somewhere makes this something obvious and easy for other people like Simon in the future. Its a more than worthwhile research challenge that deserves attention.
On a lighter note it was thanks to Simon that I took part in the MND Ice Bucket challenge. I had to manage the conflicting perspectives of my wonderful son (who thought the challenge was disrespectful to the use of our precious resource of water) and the fact that a good friend of mine had MND. To balance things out I decided to be drenched in ice water whilst squatting in a flower bed in my garden - the idea being that the flowers would get a watering at the same time. The visuals of me squatting in the garden, a look of intense fear on my face before the ice water was poured, broadcast to many people across the planet, did me no favours. I made Simons amazing wife Ruth laugh very hard which provided some solace. To this day, over dinner or over drinks, I am still reminded of my infamous squat when people have run out of things to laugh about. Thank you Simon for that.
On another occasion, as the day got closer to him actually going on set and directed his movie, he asked me would it be possible to get a hold of a Google Glass unit. He saw this as the ideal tool for what he needed to do on set. Eye gaze technology is notoriously susceptible to changes in ambient lighting and so trying to track eye pupils whilst outdoors can be troublesome. Google Glass would have the advantage of being very close to the eye and potentially be less susceptible to the same lighting challenges.
The problem was that Google Glass did not have eye tracking capability in it (yet) so he asked me to see would it be possible to convince Google to incorporate it! Simon had a very inflated sense of my capabilities it suffices to say;)
Remarkably however, we managed to bring over a very senior executive from Google in San Franciso, who visited Simon and brought with him a Google Glass unit. He revealed that there was a lot of internal discussion about the possibility of incorporating eye gaze tracking into Google Glass in the future and that should it happen, they would be more than willing to involve Simon.
Obviously that was too late for Simon but the meeting gave him a huge lift as it did me. We even named the new Google Glass version together as Google Fits should it ever see the light of day!
I maintain that were ‘Google Fits’ to be released to the world with eye tracking capability, it would be one of the greatest enabling inventions for many people with disabilities, and with this wonderful need served would be a successful commercial endeavour. I totally credit Simon with revealing this possibility to me (and hopefully to the world).
Simon wrote a remarkable book using his eye gaze computer. Its called ‘Its Not Yet Dark’. For me personally it is this centuries equivalent book of ‘The Diving Bell and the Butterfly’. The book was written as a letter to his children and family and charts the love story between himself and his wife Ruth, together with the various stages of MND as the disease took an iron clad grip on his life. The book exudes life, love, energy and positivity whilst making you cry at the same time. Simon’s titanic spirit pours out of the book and you close that final page feeling humbled and blessed having read it.
I was involved in a very unique project over the last decade or so where myself and some friends (all considerably younger than me;)) would play a soccer game every Sunday in a notorious prison in Dublin, on the prison courtyard against the prisoners. I could write a book myself on the profound conversations and interactions with the inmates over the years. I circulated Simon's book in the prison and many of the most hardened inmates were deeply moved by the contents and the story. I never got to tell Simon this but even the title ‘Its Not Yet Dark’ lit a candle in some of the darkest places in our society.
It suffices to say that it is compelling reading and highly recommended.
Simon got to make his movie. Its called ‘My Name is Emily’. I was able to see the movie in Tasmania with my own family. Its a beautiful film that is full of warmth and little touches that truly embody Simon’s philosophy of love transcending all. I really enjoyed the film as a film in itself. There are really beautiful shots of Ireland (places very familiar to me) and the acting is fantastic. However knowing the extraordinary story behind the making of the film makes it all the more special. I am sure Simon would like the film to be judged on its own merits but I think it is impossible not to view the film in an entirely different light once you know the extraordinary circumstances in which it was made. In a strange kind of way, the back story draws out the spirit and soul of the film giving a unique and beautiful view into Simon’s magnificent mind and view of the world. I felt all the more enriched watching the movie because of this.
A documentary of how the film was made was also done and has just been recently released. I have not yet seen it but am making arrangements to get a copy (that is a hint to anyone of influence reading this!). I would love to hold a private showing of both the documentary and the movie here in Tasmania as a way of inspiring people to seize the day. I have no doubt that would happen….
About ten weeks ago my family let me know that Simon had been admitted to hospital and that the prognosis was not good. The muscles around his eyes were beginning to fail and so communication was becoming more and more difficult. Simon had always said he did not want to end up ‘Locked In’. If he lost his ability to express himself then that was the final straw for him.
I thought of our Cerebus invention many times over the last few weeks. We never pursued the next stage of the invention for reasons too long and complicated to go into here. It has prompted me to think again about what might be done with that invention. That may well be another story in the brewing.
Over the last 9 years, Simon has inspired me in so many ways. I doubt very much I could take on the challenges of MND the way he did. I doubt if I could have retained that singular focus on his creative goal with the amount of distraction and difficulties that he had to overcome. He has however left me with a deeper, more profound appreciation for life in all its guises. He has left me hopeful about our potent creative capabilities and the crucially important role it has to play in our lives. He has left me with a truly powerful sense that the human spirit can prevail in the most challenging circumstances and he his left me knowing that friendship and family and most importantly love are what makes the world go round.
I have been listening to Mahler's 8th symphony over the last few days. I do that sometimes when I need a lift (not everyone's cup of tea I am the first to admit!). When I think of the central idea of celebrating love and creativity and the human spirit, I think of Simon. He was the embodiment of that core idea. As beautiful and inspiring as Mahler's 8th is, it is now in second place as a creative feat in my mind.
‘Its Not Yet Dark’ - that is my new mantra.
Simon Fitzmaurice, may you rest in peace. That said, resting in peace does not really work for you. I have no doubt you will emblazon a path and brighten the stars wherever your tinsel soul bursts through the heavens. Your magnificent, courageous, creative spirit is sorely missed. Farewell my friend.
GMcD 30/10/17
