MY FRIEND BARRY CORSCADEN is an enigma; relentlessly funny and deeply insightful. He says he’s going to write a book called “Something Comes from Something”. After some years, though, he has found that all he needs is the title. It says all he needs to say.
Last year many of the seemingly small ‘somethings’, that I and others around me created, aligned and became something bigger. So Barry has had many occasions this year to shout in triumph at me “you see, something comes from something!” So, I am going to try to draw the map of how we got here. How 2014 was the year that some of our projects began to crystalise.
Four and a half years ago a fall left me paralysed from the waist down. Stuck in hospital, physical pain and rehab for the first 18 months, with the benefit of hindsight now looks like the planning phase. I was figuring out if I would get out of the hospital bed and if I did what I would do with the rest of my life, Simone, my fiancée was researching who in the world was creating a cure for spinal cord injury and how we could join them. My family and friends were starting to think about how they could ensure I returned to an independent life. And because apparently ‘something comes from something’, all of this meant that we spent the following few years working hard on many small, disparate projects.
Mark, Stoke Mandeville Hospital 2010
It was never clear if or when the ‘somethings’ on which we were working would pay off, or how exactly they were related to each other, but we pressed on. And then, 2014 began with a bang.
Science
In early February Trinity College Dublin, had an exhibition called Fail Better. It was a celebration of trying and not succeeding, leading to better tries, better results – and sometimes better failures. The Science Gallery asked me to exhibit and I set about convincing The Christopher and Dana Reeve Foundation that featuring Christopher Reeve’s power wheelchair, “Superman’s Wheelchair”, would be an important exhibit.
“Fail Better” Exhibition, Science Gallery Dublin 2014
I was able to do this because I had come to know the Reeve staff and board over the past year through my and Simone’s roles as board members. We had been asked to join the board because when we were in Boston for a week in 2013 a friend had arranged for the Boston Globe to interview me about my small projects aiming for a paralysis cure, and when I met someone who knew someone in The Reeve Foundation she was able to send them that article which told my story – a story which they recognised. Lots of ‘somethings’ which meant they trusted us to fly Chris’s chair in from the Reeve Foundation offices in New Jersey to Dublin.
The impact of the exhibit was really interesting to us. Not only from the comments of the people who came to see it, but the fact that 10 years after Chris’s death, his drive and energy live on in such symbols as his chair. It also had a huge impact on me. I had to write the piece explaining the exhibit and, in the process of doing so, I had to tell myself my story. To remind myself why I was doing what I was doing and to take stock. I suggested that Christopher Reeve’s empty chair represents both the failure to cure paralysis and the compulsion to pursue progress. That I may no longer be the adventure athlete I was before I broke my back, but that I was now an explorer, inspired by the vision of another explorer – Christopher Reeve – travelling in his tracks.
Move to Los Angeles
And, then we packed up and moved ourselves to California for three months. The year before we had started to create our first major scientific collaboration with US-based scientists and technologists. My aim had evolved to be a catalyst for collaboration between the diverse siloes looking at a paralysis cure. So, Simone, my colleague Piers White from Mark Pollock Trust (www.markpollocktrust.org), my robotic exoskeleton and I took part in a study in UCLA. The scientists’ initial aim was to experiment with robotic walking while adding innovative transcutaneous electrical stimulation of the spinal cord and a drug to see what, if anything, might happen. And, surprise, surprise something came from this first something of its kind. Something really exciting.
Los Angeles 2014
In short, when the scientists stimulated my damaged spinal cord at three sites simultaneously I was able to initiate and sustain oscillating step-like movements of my legs when they were placed in a gravity neutral position in slings off the end of a physiotherapist bench. Stimulation also significantly enhanced the level of assistance that my damaged body could generate while the exoskeleton was carrying me.
Fundraising
This year our Life Style Sports Run in the Dark events (www.runinthedark.org) gathered 16,000 people in 50 cities around the world. As I sat at the start line in Dublin I thought about the night of the first run in 2011. It was only 16 months after my fall and I was just out of hospital. It was wet, cold and desperately emotional as I sat in my new wheelchair with Simone at the side gates of Trinity College Dublin cheering on the 2,000 runners who were doing laps of my old university.
Mark at the inaugural Run In The Dark Dublin, 2011
That night we met so many people, old and new friends, but meeting one man in particular stuck in my mind. I don’t know his name or where he is from but he stopped mid-lap to tell us that he was running because his daughter of only four years of age had just been fitted for her first wheelchair. He said that during a terrible time for him and his wife, they had been following my blog and that my being open about how I was suffering but looking for hope had “kept them going”.
I wish I could thank him in return. His words made us think we might be doing something right, motivated us to what has become a mission to find and connect people worldwide to fast track a cure for paralysis. That man’s something he gave us has been so fruitful. Since that night in 2011 over 30,000 people in total have been involved in Run in the Dark and the money they raised allowed us to spend those three months in Los Angeles, allowed those scientists to have a paralysed body and its robotic exoskeleton for three months. Time most test subjects simply cannot give on an ongoing basis. It will allow them to publish papers, raise more money and do further experiments all aiming at commercialising these interventions, these therapies and getting them onto shelves in doctor’s offices and into other people paralysed like me.
Awareness
As soon as we arrived and settled in Los Angeles we were off again. This time to Washington on foot of an anonymous invite to the White House for St. Patrick’s Day. When I got the email invitation to The White House I had to check it wasn’t spam. I didn’t believe it was real. But it was. I didn’t find out until late in the evening of March 17, 2014 how the invite came about. The something, it seemed, was a piece I had done for the American embassy a little while ago to celebrate John F Kennedy’s visit to Ireland. Someone remembered and when he heard I was in the US, asked that I be invited.
Taoiseach Enda Kenny spoke of the Irish “… capacity to endure and to adapt, to survive and to thrive; to know fear, to know loss, and yet to conscript new generations to courage and vision …” then saying: “Mark Pollock, whom I see here in front of me, without sight, without the capability of walking, yet he has done extraordinary things in the sense of his vision and his courage of what we can do with our shared humanity.” All of this meant that after the speeches, Simone and I met President Barack Obama and first lady Michelle Obama, Vice President Joe Biden, the Taoiseach and Fionnuala Kenny, all of which meant we could put the topic of spinal cord injuries on this very global agenda.
And, another link in our US connections began About 18 months ago when Paddy Cosgrave gave me the opportunity to speak at Founders, part of the Web summit in Dublin. I invited the audience to come and see me walk in my robot in Trinity. One of those people was David Rowan the editor of Wired magazine in the UK. He asked me then to speak at Wired in London which I did and when we moved to LA he introduced me to the people who produce TEDxHollywood, all of these somethings meant that this year I was able to talk about the UCLA study in front of a truly global audience. (Watch Mark’s TEDx talk at https://www.youtube.com/watch?v=7rMYfiRNT7g ).
TEDx was in late June and my talk was titled “Expecting Problems As We Explore Possibilities”. It was an incredible opportunity to speak on this platform and the conversations that followed fed into our other major project that we brought to fruition in 2014 – our documentary film “Unbreakable – The Mark Pollock Story”.
Back in 2010, two months after my fall, RTE screened a documentary about my adventure race to The South Pole. Ironically the director and my friend, Ross Whitaker and I had called it: “Blind Man Walking” and the night it aired in Ireland I was decidedly not walking. I was in the acute ward of Stoke Mandeville Hospital in England navigating the shock of paralysis and multiple debilitating infections. My family and friends and I were all in shock and I suppose initially I thought I was going to make some measure of recovery. So, when Ross came to visit we agreed he would bring his camera and keep on filming with the proviso that if we ever got to the point that we didn’t want to finish the documentary, if I didn’t recover, then we would scrap the footage.
And I didn’t recover, but that no longer seemed to be the point. The point is that we are heading in that direction and having some footage of the early very painful days in hospital as well as of the work we did in Los Angeles this year all became a big something – our film. Our documentary opened at the Light House Cinema in Dublin in October 2014 for an extended run, followed by an at times sell-out national tour. Award-winning director, Ross Whitaker and the team created a powerful film that has enabled us to meet and talk with people all around Ireland.
The Future
So I wonder now, what all these somethings, facilitated by so many fantastic people, will turn into next year. We are working on the international release of Unbreakable for 2015 which is exciting as a project but we hope useful too as we try to get paralysis onto the global agenda. We are also in the process of extending our Los Angeles study to explore what effect long term use of stimulation, robotics and pharmacology will have. So, I hope to be back walking in my Ekso Bionics robot while stimulated so we can learn more about whether this can be a viable therapy for other paralysed people.
The injuries that I suffered in 2010 have left me paralysed. But after navigating a path through intensive care and the devastating shock of paralysis, I and a growing we, started by doing something. That something has gathered pace and last year felt like we reached the end of the start up phase. It feels like we’re getting ready for making a bigger impact. Now, we are focused on extending this groundbreaking research and helping translate that research into real therapies in the community as soon as possible. So, as we reflect on last year and plan for 2015, I want to thank all the people who have supported me to try somethings that I hope will make a significant impact on the global problem of paralysis. There is much more to do but we are making progress – thank you.
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