On Being a Realist

On the 18th July 2010 I was lying in the acute ward of The National Spinal Injuries Centre in the UK. It was two weeks after my fall, I couldn’t feel or move my legs, I was pumped full of morphine and despite all of this I was feeling lucky to be alive.

As I lay there in the middle of the night I wrote a blog called, ‘Optimist, Realist or Something Else? I was surrounded by guys who were paralysed from the neck, chest or waist down and I was better off than many of them and worse off than some. I could acknowledge that they were paralysed but the question that I could not answer was: “Am I going to be one of these guys?”

And, as I wrote the blog I remembered a book that I had read called ‘Good to Great’ by Jim Collins. He spoke about the Stockdale Principle, a principle based on the experience of long-term prisoners of war and how the optimists were not the ones who survived. Realists did. The reason for this was that the optimists thought that they would be free soon, so they never faced the reality that they may never get out. As a result they were constantly disappointed, demoralised and died in their cells. Whereas the realists dealt in facts, faced the reality of their current circumstances. They were the ones to survive.

This is why I titled the blog Optimist, Realist or Something Else? In those first couple of weeks I questioned if I should be super positive and say – I will make a full recovery – and risk being a Stockdale optimist. I also wondered – should I be a realist and embrace the fact that my legs are not working and therefore are unlikely to recover? But if I did that I feared I would potentially shut off the power of my mind and body to recover in ways that we don’t yet understand.

Looking back I can see how being an optimist was the easy option because it doesn’t demand an examination of the facts. Yet my reluctance to be a realist was misplaced and left me looking for something else. But there is nothing else, being a realist is the only option.

Now, as a realist I have been able to deal in all of the facts. The fact is that I have a catastrophic spinal cord injury. The fact is that I am paralysed and cannot move anything below my waist. The fact is that finding a cure has proven to be impossible up to this point in history. But it is also a fact that human history is made up over and over again of accounts of the impossible made possible through human endeavour.

I don’t believe that there is any need to worry about being a realist. Being a realist allows us to examine the full suite of options and that includes as much despair, as it does acceptance and fantastical hope.

Mark in Wheelchair

I’ve Gone Part-Time Paleo!

There have been phases in my adult life when people squeeze my shoulder and say, “you must be training hard“. The problem is that it usually coincides with times when I have been doing little more than training myself to eat a mix of cheese and ham served up on various white flour products. Chunky? Yes. Fit? No.

 

When you are paralysed you are told to reduce your calorie intake to 1500 calories a day, which is really low. Really hard to maintain. And last year, during our 3-month research study in Los Angeles, I could have gone either of two ways. The omnipresence of pizzas, burgers and Mexican food was such that I feared the shoulder squeeze treatment at the end of the trip.

 

But we also had access to really healthy, tasty food where we were living. In Culver City I ate almost daily in Tender Greens where I had grilled tuna with a salad of Kale, parmesan, roasted garlic vinaigrette and garlic herb crostini.  When we weren’t there or at home, we ate across the road at LYFE Kitchen where every dish was less than 600 calories. My personal favorite was chicken, mushroom and spinach penne made with whole-grain pasta, green onions, lemon zest, parmesan and cashew cream sauce. This was only 570 calories and the portion size wasn’t really compromised due to the ingredient choices. Check out the cashew nut cream rather than dairy cream!

Tender Greens LA

And, when it was easy to get fast, healthy and tasty food, I chose it. By the end of the trip I had lost just over a stone in body weight (8 kgs).

 

But back in Ireland between May and December I went back to my old routine. Too many paninis and pizza. Too many bad choices and a worrying number of “you must be training hard” comments.

 

But on the 22nd of December, as our documentary film Unbreakable screened I got an email from James Statham. James runs a company called Paleo Meal Deliveries and he offered to work with me. His company delivers chef prepped meals to people each week. The microwavable meals are homemade, nutritionally dense and are low carb, gluten and dairy free. He offered to sponsor me, delivering a 3-day meal plan including breakfast, lunch and dinner each week to my door. In return he asked for nothing. After a month I have noticed that nobody has squeezed my shoulder and accused me of training. But they have commented that I’ve lost weight.

 

I think it is all down to access to good food. In the main I am eating well and the right amounts now that leaves me calorie room on a weekly basis to eat out the odd time or to have the odd treat. If I feel hungry in between, Simone has packed the freezer with LYFE Kitchen smoothie recipe bags that we can blend in our new Nutri-Bullet. It’s raw kale, fresh ginger, banana, cucumber, apple juice and lemon juice. So, we’ll see if my kale smoothies and 9 Paleo Meals out of 21 eating options will keep me motivated to make good choices for the rest of the month.

Lyfe Kitchen Smoothie

I’ve Gone Part-Time Paleo!

There have been phases in my adult life when people squeeze my shoulder and say, “you must be training hard”. The problem is that it usually coincides with times when I have been doing little more than training myself to eat a mix of cheese and ham served up on various white flour products. Chunky? Yes. Fit? No.

When you are paralysed you are told to reduce your calorie intake to 1500 calories a day, which is really low. Really hard to maintain. And last year, during our 3-month research study in Los Angeles, I could have gone either of two ways. The omnipresence of pizzas, burgers and Mexican food was such that I feared the shoulder squeeze treatment at the end of the trip.

But we also had access to really healthy, tasty food where we were living. In Culver City I ate almost daily in Tender Greens where I had grilled tuna with a salad of Kale, parmesan, roasted garlic vinaigrette and garlic herb crostini. When we weren’t there or at home, we ate across the road at LYFE Kitchen where every dish was less than 600 calories. My personal favorite was chicken, mushroom and spinach penne made with whole-grain pasta, green onions, lemon zest, parmesan and cashew cream sauce. This was only 570 calories and the portion size wasn’t really compromised due to the ingredient choices. Check out the cashew nut cream rather than dairy cream!

Tender Greens LA

And, when it was easy to get fast, healthy and tasty food, I chose it. By the end of the trip I had lost just over a stone in body weight (8 kgs).

But back in Ireland between May and December I went back to my old routine. Too many paninis and pizza. Too many bad choices and a worrying number of “you must be training hard” comments.

But on the 22nd of December, as our documentary film Unbreakable screened I got an email from James Statham. James runs a company called Paleo Meal Deliveries and he offered to work with me. His company delivers chef prepped meals to people each week. The microwavable meals are homemade, nutritionally dense and are low carb, gluten and dairy free. He offered to sponsor me, delivering a 3-day meal plan including breakfast, lunch and dinner each week to my door. In return he asked for nothing. After a month I have noticed that nobody has squeezed my shoulder and accused me of training. But they have commented that I’ve lost weight.

I think it is all down to access to good food. In the main I am eating well and the right amounts now that leaves me calorie room on a weekly basis to eat out the odd time or to have the odd treat. If I feel hungry in between, Simone has packed the freezer with LYFE Kitchen smoothie recipe bags that we can blend in our new Nutri-Bullet. It’s raw kale, fresh ginger, banana, cucumber, apple juice and lemon juice. So, we’ll see if my kale smoothies and 9 Paleo Meals out of 21 eating options will keep me motivated to make good choices for the rest of the month.

Lyfe Kitchen Smoothie

Something Comes From Something

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

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.

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“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.

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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.

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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.

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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 ).

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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.

Unbreakable audience standing ovation

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.

“Unbreakable” documentary film Irish tour coming to an end

The Unbreakable film Irish tour is coming to an end and it has been incredible to get the chance to discuss our story at the post-screening Q&A’s with so many people around the country. We have learnt a lot and it means a great deal to Simone and I to know that we have your support behind us as we push forward in our aim to find a cure for paralysis. Alan Bathe of Roslyn Park College (pictured with me below) wrote this poem and he read it at one of our Dublin screenings – it is just one example of the amazing and thought provoking responses we have received from audience members around Ireland.

Mark and Alan Bathe from Roslyn Park College after an Unbreakable screening

Will You Walk Again?

by Alan Bathe, Roslyn Park College

– Inspired by Mark Pollock’s Unbreakable film

Only happiness on your face,

While at a steady pace,

You draw your audience into your story,

Emotional, riveting, no fury,

As peaceful as a hummingbird,

Tackling things which are undesirable and immense,

Your token is your word,

Makes your sweat rinse

Oh! Mighty Man, Are you a wrestler?

Or a warrior? Not a meddler!

Saint? Angel? Maybe the both,

Ah sure you know you have an angel looking after you,

I wish the same on my boat,

At sea as I enjoy the elegance, as you do,

We enjoy journeys, different ones,

With every breath in our lungs!

“Will you walk again?” asked by us,

Angels do inspire us.

Collaborating in Los Angeles

I have been in Los Angeles for the past two months. I’m part of a team that includes a Russian, an American or two, the Irish and British, several Indians, a Finn, of course all of you that got me here and a Robot. We all bring something different, but we are all working towards the same thing: understanding more about human movement. Even the Robot. This is the short-term goal but my aim remains – to help to fast-track a cure for paralysis.

 

I am approaching this the way I approach athletic pursuits. So, I’ve been breaking my personal bests in my Ekso Bionics robotic legs adding over 10,000 steps a week. Piers White, head of The Mark Pollock Trust (www.markpollocktrust.org) is moonlighting as my trainer and Simone George, my fiancée, provided our intellectual integration into this world of active scientific advocacy.

 

Mark,Piers, Yury and Parag UCLA 17 April 2014

Mark,Piers, Yury and Parag UCLA 17 April 2014

The titans with whom we are privileged to collaborate at UCLA are led by V. Reggie Edgerton, distinguished professor of integrative biology, physiology and neurobiology, Yury Gerasimenko, Ph.D., St. Petersburg’s Pavlov Institute’s professor and director of the laboratory of movement physiology and Dr. Dan Lu, MD,Ph.D. As I train in my robotic exoskeleton their team of scientists are tracking what is going on, if anything, in my paralyzed legs. Our primary objective is to determine whether we can improve posture and stepping using two novel ways to neuromodulate (excite and affect) the spinal cord.

 

Reggie and Yury are long time collaborators with Susan Harkema. Together they have had what I believe is the most exciting breakthrough in spinal cord injury therapy since the 1940’s when Professor Guttman figured out how to keep people with spinal cord injuries alive. Susan Harkema Ph.D. is the rehabilitation research director at the Frazier Rehab Institute in the University of Louisville and director of the Reeve Foundation’s NeuroRecovery Network. Simone wrote about us meeting her in my previous blog. They just published their research showing significant victories over paralysis. Published in the medical journal, Brain, they describe what they witnessed after implanting electrical stimulators into the damaged spines of four paralysed men.(See more here)

 

All four men were as completely paralysed as I am; two of the four had some sensation below their injury. They can all now voluntarily move their hips, ankles and toes and have displayed improvements in their overall health, including an increase of muscle mass and the regulation of their blood pressure. All four men are also able to bear weight independently.

 

Reggie Edgerton, who has been conducting fundamental research in this area for 38 years, says: “This is a wake-up call for how we see motor complete spinal cord injury. We don’t have to necessarily rely on regrowth of nerves in order to regain function. The fact that we’ve observed this in four out of four people suggests that this is actually a common phenomenon in those diagnosed with complete paralysis.” And Susan Harkema says: “We have uncovered a… new intervention strategy that can dramatically affect recovery of voluntary movement … even years after injury”. When she joined us at The Science Gallery’s Fail Better exhibition she described her initial reaction to her patient moving his toe as simply: “Holy s***!” After all the purpose of the study was to learn more about nerve pathways, not to make patients move.

 

So, they now know what I have suspected to be true. I plan to support the next phase of the epidural implant research in every way I can; this is something Simone and I have been doing for the past year in our roles as directors of the Reeve Foundation. While I will not personally benefit from the epidural implant just yet – the subjects for the next phase of this human trial will have broken their backs higher up than I broke mine – this is for good reason. They want to repeat what they have learned in the first four subjects, including better understanding improvements in blood pressure and the cardiovascular effects of paralysis, some of the things from which my lower injury spared me.

 

I also plan to continue to explore ways that this electrical stimulation technology might, with other interventions, produce wins for people with all types of spinal cord injury. That is why the Trust has moved us here to LA right now, and why I am walking on and on and on, one step at a time. We continue to balance acceptance and hope: to be excited enough by the possibilities this collaboration presents to have made it happen, all the while accepting that I will roll home in my wheelchair in a few weeks content that the scientists have useful data with which to progress this work on behalf of all those living with paralysis.

 

Meeting Scientist Dr. Susan Harkema, Ph.D.

For the first time ever I’ve got a guest blog and it is from my fiancée, Simone George. She has been with me in good times and in bad. And, she is alongside me on our quest to find a cure for paralysis. Over to you Simone…

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“This photo was taken when Mark, Mark’s trainer and friend, South Pole Simon O’Donnell and I travelled to the US to meet a number of scientists who are looking at spinal cord injury recovery. I can’t quite remember now why we are laughing. Dr. Susan Harkema, Ph.D. is incredibly accomplished, bright and focused on her work. I have been reading journal articles about her since Mark broke his back. Then I met her and she is also warm, funny, kind and so, so passionate about giving people like Mark some victories over paralysis.

The machine Mark is sitting in measures the torque muscles create. So, if you or I were in the position shown in the first photo we would be asked to kick out our leg and the machine would measure the power in the right quadriceps muscle. Mark cannot kick out, so the pads stuck to Mark’s thigh allow the therapist to electrically stimulate the nerves that make the quadriceps contract, the quad should contract and create some torque and a kick – POW!

But functional electrical stimulation has never worked particularly well for Mark. This is probably because of the damage to his spinal cord at L1. Specifically his right quadriceps would never contract. This photo was taken just after Susie’s expertise in action meant that Mark’s right quad finally fired and did so with some gusto. She also got such a good contraction out of his right calf muscle that his right abdominal muscles contracted in involuntary aggressive stomach crunches. This sort of nerve signal confusion is not uncommon and scientists believe it is because the damaged spinal cord reorganizes. Maybe that is why we were laughing in the photo…

Christopher Reeve and the doctors and scientists working with him wrote about improvements in his paralysed body as a result of stimulating his muscles to contract. These were the articles that I read over and over when Mark was in hospital in 2010. I also read many of Dr. Harkema’s articles and was able to tell her that for some reason her name had led me to picture her as an Asian gentleman. To be able to work with her now, to even meet her has been a privilege. Dr. Harkema’s Ph.D is in physiology and working through a collaborative partnership in Louisville she is also the National Director of the Reeve Foundation’s NRN, a cooperative network of cutting-edge rehabilitation centers designed to provide therapies by translating scientific advances into activity-based rehabilitation treatments.

The Mark Pollock Trust allows Mark to collaborate with scientists like Susie and for us, as people living with the effects of a spinal cord injury, to advocate for their work. In this case Mark also lent his injury to her laboratory to look at and left Louisville with a novel stimulation program that Mark and Simon have put into action in the gym ever since. The Trust’s ultimate aim is for the best of these therapies to be available for the entire spinal cord injured community.”

-Simone-



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