The Short Version
I believe in this: Truth + Love + Beauty = Strength. In fact, my life depends on it. I endured poor-prognosis leukemia, multiple rounds of chemotherapy, a bone marrow transplant, and open heart surgery - all for only a small chance of survival. The journey since has not been a recovery; It has been a resurrection. Lingering effects of the chemical and physical butchery are endless. So what. Maybe I’m still here because I try to make life extraordinary and not worry about its length. To some my adventures may not seem epic. In the context of anyone with my prognosis they absolutely are. Besides, I know the magic is in the daily details, the kinds of experiences we can all connect with after life slams us flat on our backs. I push myself to experience the magic of the wild places, making memories of breathtaking mountain trails rather than soulless hospital beds. My goal is to live the true and authentic story we patients needed to hear while confined for months in our hospital rooms, all the while emotionally tortured by our prospects of survival. We never did hear such stories, and that is shameful. In fact all of humanity needs more true and inspiring stories, not staged avatars of the real thing. We need to make this a social movement, living our own authentic epic story, and make the world more civil and beautiful along the way. To make this happen, I am presenting my unique journey and inspiration to any group who is interested.
I believe in this: Truth + Love + Beauty = Strength. In fact, my life depends on it. I endured poor-prognosis leukemia, multiple rounds of chemotherapy, a bone marrow transplant, and open heart surgery - all for only a small chance of survival. The journey since has not been a recovery; It has been a resurrection. Lingering effects of the chemical and physical butchery are endless. So what. Maybe I’m still here because I try to make life extraordinary and not worry about its length. To some my adventures may not seem epic. In the context of anyone with my prognosis they absolutely are. Besides, I know the magic is in the daily details, the kinds of experiences we can all connect with after life slams us flat on our backs. I push myself to experience the magic of the wild places, making memories of breathtaking mountain trails rather than soulless hospital beds. My goal is to live the true and authentic story we patients needed to hear while confined for months in our hospital rooms, all the while emotionally tortured by our prospects of survival. We never did hear such stories, and that is shameful. In fact all of humanity needs more true and inspiring stories, not staged avatars of the real thing. We need to make this a social movement, living our own authentic epic story, and make the world more civil and beautiful along the way. To make this happen, I am presenting my unique journey and inspiration to any group who is interested.
The (very) Long Version:
I grew up in the land of tobacco, shotgun shacks and the Ku Klux Klan. I entered school the year after desegregation. It was a horrible time and place, with an undercurrent of seething animosity toward anyone different. As sure as my life depended on it, I knew that I could never be a product of that world, so I decided to become a citizen of the planet. In the absence of mentors, that took me thirty years. Eventually I traded my ambitions for my passions and turned my profession into a mission. I made my life my life’s work.
The result was a journey through the human experience, both glorious and painful. Leaving behind a conventional lifestyle, I aimed to explore the world any way possible, often for months at a time. I built an off-grid home in the woods. I traveled the U.S. in a solar-powered Airstream. Although I often felt like a refugee, my goal was to find a new definition for living, and I did.
As a college-level environmental educator, I used modern technology to share with my students my explorations from anywhere on the planet. It was risky, expensive, and… incredible. I administered courses from four continents – from a train traversing Scotland to an outpost in the Ecuadorian Amazon. Sometimes my office was the tailgate of my 4x4. I learned the miracle of serendipity. A morning in a Buddhist temple or a run along the Continental Divide was blended into my online classes by afternoon. The response from students was remarkable. My courses filled instantly. My colleagues and I did great work.
As a college-level environmental educator, I used modern technology to share with my students my explorations from anywhere on the planet. It was risky, expensive, and… incredible. I administered courses from four continents – from a train traversing Scotland to an outpost in the Ecuadorian Amazon. Sometimes my office was the tailgate of my 4x4. I learned the miracle of serendipity. A morning in a Buddhist temple or a run along the Continental Divide was blended into my online classes by afternoon. The response from students was remarkable. My courses filled instantly. My colleagues and I did great work.
In the meantime, absent of a television or a watch, I enhanced my work by doing the most naturally human recreation possible: playing outdoors. Hiking, bicycling, and trail running: The Cairngorms of Scotland, the Darien of Panama, the Sonoran Desert. I was a mediocre athlete with no history of competition. I just went out and did it, absent of youth or talent. Eventually those hours on the trails became my sanctuary, as if I had found my religion.
The problem in creating a life so indescribably precious is the emotional devastation of losing it. Suddenly I could no longer run. Then I could barely walk. My immune system malfunctioned in strange ways.
On November 11, 2015, I was diagnosed with acute myeloid leukemia, a disease I believe I had fought for some time. Unfortunately it was the version that put me in the worst category of mutations and prognosis. My heart was involved and my aortic valve had failed. Death was close and real. Tethered to brutal chemotherapy and still healing from open heart surgery, I had to immediately end my work. Every single personal goal, along with the decades of effort to create a beautiful life, was swept away as if it never existed. Health, money, profession, lifestyle... gone. The future held nothing but misery, including months of confinement in a leukemia ward. There I would receive the most grueling chemotherapy available followed by a bone marrow transplant, and I would still probably die. If I did manage to survive, the long term side effects would inhibit me doing the exact things I loved. My sanctuary was gone. There was no case for continuing.
How does one carry on in the face of utter despair, legitimate hopelessness, and such comprehensive and entire loss - not just a loss of life, but a loss of living? I didn’t know.
I read the books, I listened to the talks, but realized that this wasn’t suffering that could be healed through a mantra or a mindfulness workshop. This was suffering real and big and immediate. So even though I ached to just end things immediately, I changed my paradigm: I didn’t exactly give up. I gave in. If I was going to die today or tomorrow or next month, I would do it my way, and until then try to live in grace, love, beauty and truth.
How does one carry on in the face of utter despair, legitimate hopelessness, and such comprehensive and entire loss - not just a loss of life, but a loss of living? I didn’t know.
I read the books, I listened to the talks, but realized that this wasn’t suffering that could be healed through a mantra or a mindfulness workshop. This was suffering real and big and immediate. So even though I ached to just end things immediately, I changed my paradigm: I didn’t exactly give up. I gave in. If I was going to die today or tomorrow or next month, I would do it my way, and until then try to live in grace, love, beauty and truth.
Right, so what does that mean? It means that: Simultaneously plugged into chemo-poison and life-preserving drugs, I rode an exercise bike pointed out the hospital window overlooking San Francisco. I refused to wear a hospital gown, preferring to die in my own clothes. I ate everything I could tolerate, including a pizza nearly every day. I walked a marathon around the leukemia ward dragging my IV pole. I stayed out of the bed except to sleep and rest. I never turned on the TV. I made small preparations for how and where I would end things. And … I kept not dying.
My doctors were either neutral or mildly resistant to my approach. I heard, “Your chances are dismal.” “You’re taking me out of my comfort zone.” “Yes, we can talk about your end of life options.”, or my favorite: “This is where you are on misery mountain.”
A week before my scheduled discharge, five poker-faced doctors gathered around me and said: “I am sorry Mr. Willson, but we can no longer find any reason to keep you here. You are being discharged early. But don’t celebrate.”
What?
Locked for weeks in the sterile and soulless hell of a leukemia ward is a lesson in sensory deprivation. If I could feel the wind on my skin and die immediately it would be a celebration. Still, I could not celebrate the months of being witness to the faces of my fellow patients, filled with such misery and gut-wrenching fear, knowing that some would not leave, and some would not survive. That horror left a permanent scar on my soul.
A week before my scheduled discharge, five poker-faced doctors gathered around me and said: “I am sorry Mr. Willson, but we can no longer find any reason to keep you here. You are being discharged early. But don’t celebrate.”
What?
Locked for weeks in the sterile and soulless hell of a leukemia ward is a lesson in sensory deprivation. If I could feel the wind on my skin and die immediately it would be a celebration. Still, I could not celebrate the months of being witness to the faces of my fellow patients, filled with such misery and gut-wrenching fear, knowing that some would not leave, and some would not survive. That horror left a permanent scar on my soul.
I directed my anger to this: Forty-six days after my bone marrow transplant, drugged and incoherent, with my patched heart flopping inside my chest, I managed the E’roica vintage bicycle ride through the hills of central California on a fifty-dollar 1965 Austrian-made Puch. I never told my doctors. My point? I could be miserably sick in bed or I could be miserably sick riding my bike. Besides, it would be an epic failure, except … nothing failed.
I latched onto that idea. In a way, it was a relief having nothing to lose. So between weekly medical appointments and bouts of mind-bending sickness, I would escape to the mountains, strap my IV tubes under my shirt and hike and run the trails. After running a half marathon at 6000’ along the Lake Tahoe rim trail, I waited two days, and then did it again just to make sure.
I latched onto that idea. In a way, it was a relief having nothing to lose. So between weekly medical appointments and bouts of mind-bending sickness, I would escape to the mountains, strap my IV tubes under my shirt and hike and run the trails. After running a half marathon at 6000’ along the Lake Tahoe rim trail, I waited two days, and then did it again just to make sure.
And then I went back to San Francisco and quit my doctor.
It’s like this: Our medical establishment is good at keeping people from being dead, but we are failures at saving lives. Saving my life was entirely up to me, whether it was a life of one day or a decade.
As individuals possibly we can change the world, but we can certainly change our own version of it and the immediate sphere of life around us. We can just do something – anything – to set free the magic of serendipity, and then see what happens. That is all I can focus on, immediate and imminent life. Maybe that is why I am still here.
Today, I am a returning citizen of the planet, hopefully effecting change and inspiring others. I'm running across endangered landscapes, sharing what I've learned, and proving that we can be more than a set of daunting circumstances. I figured that if I somehow survived this nightmare, that would be my new profession, to be my own social movement, even if it is a movement of one.
As individuals possibly we can change the world, but we can certainly change our own version of it and the immediate sphere of life around us. We can just do something – anything – to set free the magic of serendipity, and then see what happens. That is all I can focus on, immediate and imminent life. Maybe that is why I am still here.
Today, I am a returning citizen of the planet, hopefully effecting change and inspiring others. I'm running across endangered landscapes, sharing what I've learned, and proving that we can be more than a set of daunting circumstances. I figured that if I somehow survived this nightmare, that would be my new profession, to be my own social movement, even if it is a movement of one.