I met Mark when he was just blind. I had returned home to live in Dublin after the odyssey that was my 20s, educating my interest in human rights and equality in university, traveling the world, like my nomad grandmother. And during a two-year stint working in Madrid, dancing many nights till morning in salsa clubs. When I met Mark, he asked me to teach him to dance. And I did.
They were wonderful times, long nights talking, becoming friends and eventually falling for each other. Mark had lost his sight when he was 22, and the man that I met eight years later was rebuilding his identity, the cornerstone of which was this incredible spirit that had taken him to the Gobi Desert, where he ran six marathons in seven days. And to marathons at the North Pole, and from Everest Base Camp.
When I asked him what had led to this high-octane life, he quoted Nietzsche: "He, who has a Why to live, can bear with almost any How." He had come across the quote in a really beautiful book called "Man's Search for Meaning," by Viktor Frankl, a neurologist and psychiatrist who survived years in a Nazi concentration camp. Frankl used this Nietzsche quote to explain to us that when we can no longer change our circumstances, we are challenged to change ourselves.
Eventually, I did rebuild my identity, and the Why for me was about competing again, because pursuing success and risking failure was simply how I felt normal. And I finished the rebuild on the 10th anniversary of losing my sight. I took part in a 43-day expedition race in the coldest, most remote, most challenging place on earth. It was the first race to the South Pole since Shackleton, Scott and Amundsen set foot in Antarctica, 100 years before. And putting the demons of blindness behind me with every step towards the pole, it offered me a long-lasting sense of contentment.
As it turned out, I would need that in reserve, because one year after my return, in, arguably, the safest place on earth, a bedroom at a friend's house, I fell from a third-story window onto the concrete below. I don't know how it happened. I think I must have got up to go to the bathroom. And because I'm blind, I used to run my hand along the wall to find my way. That night, my hand found an open space where the closed window should have been. And I cartwheeled out. My friends who found me thought I was dead. When I got to hospital, the doctors thought I was going to die, and when I realized what was happening to me, I thought that dying might have been...might have been the best outcome. And lying in intensive care, facing the prospect of being blind and paralyzed, high on morphine, I was trying to make sense of what was going on.
And one night, lying flat on my back, I felt for my phone to write a blog, trying to explain how I should respond. It was called "Optimist, Realist or Something Else?" and it drew on the experiences of Admiral Stockdale, who was a POW in the Vietnam war. He was incarcerated, tortured, for over seven years. His circumstances were bleak, but he survived. The ones who didn't survive were the optimists. They said, "We'll be out by Christmas," and Christmas would come and Christmas would go, and then it would be Christmas again, and when they didn't get out, they became disappointed, demoralized and many of them died in their cells. Stockdale was a realist. He was inspired by the stoic philosophers, and he confronted the brutal facts of his circumstances while maintaining a faith that he would prevail in the end. And in that blog, I was trying to apply his thinking as a realist to my increasingly bleak circumstances.
During the many months of heart infections and kidney infections after my fall, at the very edge of survival, Simone and I faced the fundamental question: How do you resolve the tension between acceptance and hope? And it's that that we want to explore with you now.
After I got the call, I caught the first flight to England and arrived into the brightly lit intensive care ward, where Mark was lying naked, just under a sheet, connected to machines that were monitoring if he would live. I said, "I'm here, Mark." And he cried tears he seemed to have saved just for me. I wanted to gather him in my arms, but I couldn't move him, and so I kissed him the way you kiss a newborn baby, terrified of their fragility. Later that afternoon, when the bad news had been laid out for us—fractured skull, bleeds on his brain, a possible torn aorta and a spine broken in two places, no movement or feeling below his waist—Mark said to me, "Come here. You need to get yourself as far away from this as possible." As I tried to process what he was saying, I was thinking, "What the hell is wrong with you?"
"We can't do this now." So I asked him, "Are you breaking up with me?"
And he said, "Look, you signed up for the blindness, but not this." And I answered, "We don't even know what this is, but what I do know is what I can't handle right now is a breakup while someone I love is in intensive care."
So I called on my negotiation skills and suggested we make a deal. I said, "I will stay with you as long as you need me, as long as your back needs me. And when you no longer need me, then we talk about our relationship." Like a contract with the possibility to renew in six months.
He agreed and I stayed. In fact, I refused to go home even to pack a bag, I slept by his bed, when he could eat, I made all his food, and we cried, one or other or both of us together, every day. I made all the complicated decisions with the doctors, I climbed right into that raging river over rapids that was sweeping Mark along. And at the first bend in that river, Mark's surgeon told us what movement and feeling he doesn't get back in the first 12 weeks, he's unlikely to get back at all.
So, sitting by his bed, I began to research why, after this period they call spinal shock, there's no recovery, there's no therapy, there's no cure, there's no hope. And the internet became this portal to a magical other world. I emailed scientists, and they broke through paywalls and sent me their medical journal and science journal articles directly. I read everything that "Superman" actor Christopher Reeve had achieved, after a fall from a horse left him paralyzed from the neck down and ventilated. Christopher had broken this 12-week spell; he had regained some movement and feeling years after his accident. He dreamed of a world of empty wheelchairs. And Christopher and the scientists he worked with fueled us with hope.
You see, spinal cord injury strikes at the very heart of what it means to be human. And it had turned me from my upright, standing, running form, into a seated compromise of myself. And it's not just the lack of feeling and movement. Paralysis also interferes with the body's internal systems, which are designed to keep us alive. Multiple infections, nerve pain, spasms, shortened life spans are common. And these are the things that exhaust even the most determined of the 60 million people around the world who are paralyzed.
Over 16 months in hospital, Simone and I were presented with the expert view that hoping for a cure had proven to be psychologically damaging. It was like the formal medical system was canceling hope in favor of acceptance alone. But canceling hope ran contrary to everything that we believed in. Yes, up to this point in history, it had proven to be impossible to find a cure for paralysis, but history is filled with the kinds of the impossible made possible through human endeavor. The kind of human endeavor that took explorers to the South Pole at the start of the last century. And the kind of human endeavor that will take adventurers to Mars in the early part of this century. So we started asking, "Why can't that same human endeavor cure paralysis in our lifetime?"
Well, we really believed that it can. My research taught us that we needed to remind Mark's damaged and dormant spinal cord of its upright, standing, running form, and we found San Francisco-based engineers at Ekso Bionics, who created this robotic exoskeleton that would allow Mark to stand and walk in the lab that we started to build in Dublin. Mark became the first person to personally own an exo, and since then, he and the robot have walked over one million steps.
It was bit of an early celebration, because actually it wasn't enough, the robot was doing all of the work, so we needed to plug Mark in. So we connected the San Francisco engineers with a true visionary in UCLA, Dr. Reggie Edgerton, the most beautiful man and his team's life work had resulted in a scientific breakthrough. Using electrical stimulation of the spinal cord, a number of subjects have been able to stand, and because of that, regain some movement and feeling and most importantly, to regain some of the body's internal functions that are designed to keep us alive and to make that life a pleasure. Electrical stimulation of the spinal cord, we think, is the first meaningful therapy ever for paralyzed people.
Now, of course, the San Francisco engineers and the scientists in UCLA knew about each other, knew about each other's work. But as so often happens when we're busy creating groundbreaking scientific research, they hadn't quite yet got together. That seemed to be our job now. So we created our first collaboration, and the moment when we combined the electrical stimulation of Mark's spinal cord, as he walked in his robotic exoskeleton, was like that moment when Iron Man plugs the mini arc reactor into his chest and suddenly he and his suit become something else altogether.
Simone, my robot and I moved into the lab at UCLA for three months. And every day, Reggie and his team put electrodes onto the skin on my lower back, pushed electricity into my spinal cord to excite my nervous system, as I walked in my exo. And for the first time since I was paralyzed, I could feel my legs underneath me. Not normally—
Thank you.
It wasn't a normal feeling, but with the stimulator turned on, upright in my exo, my legs felt substantial. I could feel the meat of my muscles on the bones of my legs, and as I walked, because of the stimulation, I was able to voluntarily move my paralyzed legs. And as I did more, the robot intelligently did less. My heart rate got a normal running, training zone of 140 to 160 beats per minute, and my muscles, which had almost entirely disappeared, started to come back. And during some standard testing throughout the process, flat on my back, twelve weeks, six months and three whole years after I fell out that window and became paralyzed, the scientists turned the stimulator on and I pulled my knee to my chest.
OK, start, go, go, go, go, go. Good, good, good.
Yeah, yeah, go on, Mark, go on, go, go, go, go, go, wow!
Well done!
Do you know, this week, I've been saying to Simone, if we could forget about the paralysis, you know, the last few years have been incredibly exciting.
Now, the problem is, we can't quite forget about the paralysis just yet. And clearly, we're not finished, because when we left that pilot study and went back to Dublin, I rolled home in my wheelchair and I'm still paralyzed and I'm still blind and we're primarily focusing on the paralysis at the moment, but being at this conference, we're kind of interested if anyone does have a cure for blindness, we'll take that as well.
But if you remember the blog that I mentioned, it posed a question of how we should respond, optimist, realist or something else? And I think we have come to understand that the optimists rely on hope alone and they risk being disappointed and demoralized. The realists, on the other hand, they accept the brutal facts and they keep hope alive, as well. The realists have managed to resolve the tension between acceptance and hope by running them in parallel. And that's what Simone and I have been trying to do over the last number of years.
Look, I accept the wheelchair—I mean, it's almost impossible not to. And we're sad, sometimes, for what we've lost. I accept that I, and other wheelchair users, can and do live fulfilling lives, despite the nerve pain and the spasms and the infections and the shortened life spans. And I accept that it is way more difficult for people who are paralyzed from the neck down. For those who rely on ventilators to breathe, and for those who don't have access to adequate, free health care. So, that is why we also hope for another life. A life where we have created a cure through collaboration. A cure that we are actively working to release from university labs around the world and share with everyone who needs it.
I met Mark when he was just blind. He asked me to teach him to dance, and I did. One night, after dance classes, I turned to say goodnight to him at his front door, and to his gorgeous guide dog, Larry. I realized, that in switching all the lights off in the apartment before I left, that I was leaving him in the dark. I burst into uncontrollable tears and tried to hide it, but he knew. And he hugged me and said, "Ah, poor Simone. You're back in 1998, when I went blind. Don't worry, it turns out OK in the end."
Acceptance is knowing that grief is a raging river. And you have to get into it. Because when you do, it carries you to the next place. It eventually takes you to open land, somewhere where it will turn out OK in the end.
And it truly has been a love story, an expansive, abundant, deeply satisfying kind of love for our fellow humans and everyone in this act of creation. Science is love. Everyone we've met in this field just wants to get their work from the bench and into people's lives. And it's our job to help them to do that. Because when we do, we and everyone with us in this act of creation will be able to say, "We did it. And then we danced."
Thank you.
