Une lettre d'amour pour le réalisme dans l'obscurité de la vie

Mark: When I went blind at 22, I read this quote in Viktor Frankl's book Man's Search for Meaning: "He who has a why to live can bear with almost any how." It is by Friedrich Nietzsche and it stayed with me; it became my credo. It summarises Frankl's experience and analysis of his experience of years in a Nazi concentration camp. As another TED speaker, Andrew Soloman says, "Forge meaning. Build Identity." When I broke my back, I continued to ask myself "Why?" Not "Why me?" but "Why am I doing what I’m doing?”, "What is my purpose now?" This book and this credo reminds us to look forward and to fill our lives with great things, so there is less space for the bad and the sad things to fill.

Mark: I first read the Admiral Stockdale story I tell in our TED Talk in Jim Collins's book, From Good to Great, just before I went to the South Pole. The book is based on empirical and qualitative data and is a unique insight into leadership and what brings companies (but really the humans working within them) from being just good to being great. Even when I was just blind, facing into the extreme situation of my own choosing — a race to the South Pole — this story instantly spoke to me. I have since read the stoic philosophers, but the Admiral Stockdale conversation is what I return to when I need reminding, in particular this part where Jim Collins writes: "Then he Stockdale grabbed me by the shoulders and he said, 'This is what I learned from those years in the prison camp, where all those constraints just were oppressive. You must never, ever, ever confuse, on the one hand, the need for absolute, unwavering faith that you can prevail despite those constraints with, on the other hand, the need for the discipline to begin by confronting the brutal facts, whatever they are. We’re not getting out of here by Christmas.'"

Simone: We chose this talk and the three listed below it from many much-loved and used talks because they communicate from a unique place — complex subjects made story in such a perfect way that they are in fact telepathy. We, their audience, absorb them by osmosis and they become part of us in a way we can't even explain. They are master classes in human connection, masquerading as excellent public speaking. So much of them are part of our lexicon now. "Keep your eye on the prize; hold on," a line from Bryan’s talk is a much-needed reminder when in the tough and newly explored territories and courage is the only fuel.

Simone: This book came out long after Mark was injured and after we had joined the Reeve Foundation board, where we learned so much that we needed to learn. Funded by Reeve, it is an incredible resource for anyone dealing with paralysis and interested in powering the train heading for the cure. Kate's husband became paralysed and she has lived and learned what every good patient advocate needs to learn — how to support the other good people in this global science, philanthropic and business community who are making this moon shot a reality.

Simone: This paper is a handbook for catalyzing change. HIV/AIDS was the incurable disease of our time. Yet, it now has such a meaningful therapy, it has been effectively cured. People living with HIV now can have almost untraceable levels of virus in their systems and live almost normal life expectancies. How did this happen? One of the co-authors of this paper, Michael Manganiello was Dana Reeve's best friend and supported and worked with Christopher and Dana when Christopher broke his neck. Mark and I met him when we joined the Reeve board some years after we met his work through our research. If you want to organize in order to change the world, you’d be helped by reading this paper. "Back to Basics" explores how the HIV/AIDS advocacy movement revolutionized patient engagement.

Simone: Personal memoir and everything else, Eve shows the force the courage can be the face of the extremes of some of our existence — violence, fear, pain and seemingly pointless and gratuitous suffering. But it is her connection so beautifully made between the body and the world, how all our suffering is connected and how we can heal it by understanding and observing the link between the personal and the global that is so vital. From her creation of the Vagina Monologues and the V-Day Rising movement to this incredibly important memoir, we owe Eve so much.

Simone: This was our gateway drug into the addiction that is understanding neuroplasticity. When Mark was in hospital, I read this book from cover to cover twice and then on audio on my phone. Written in beautiful narrative from qualitative research by an author on his own voyage of discovery, it explains how only in the last 15 years we have really understood that the brain and the spinal cord are plastic. They are not set systems incapable of change and adaptation, which had been a scientific certainty until then, and how this scientific certainty had held up much of the ground breaking research happening now. It is also a journey into the existential, a way of understanding ourselves as human beings and where we and our experiences fit into the world.