The short version:
I don't know why I’m still here. Besides, the future for me is uncertain. I survived worst-prognosis leukemia, multiple rounds of brutal chemotherapy, a bone marrow transplant, and open heart surgery - all for only a small chance of survival. Lingering effects of the chemical and physical butchery are constant and endless. So you know what my first daily accomplishment is? Getting out of bed. And then I just get on with desperately trying to make an authentic life. So what. Maybe I’m still here because I chose to make my 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. I push my beaten body to experience the magic of the wild places, with the hope that my final day will be on a breathtaking mountain trail and not in another soul-less hospital bed.
I don't know why I’m still here. Besides, the future for me is uncertain. I survived worst-prognosis leukemia, multiple rounds of brutal chemotherapy, a bone marrow transplant, and open heart surgery - all for only a small chance of survival. Lingering effects of the chemical and physical butchery are constant and endless. So you know what my first daily accomplishment is? Getting out of bed. And then I just get on with desperately trying to make an authentic life. So what. Maybe I’m still here because I chose to make my 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. I push my beaten body to experience the magic of the wild places, with the hope that my final day will be on a breathtaking mountain trail and not in another soul-less hospital bed.
The (very) long version:
In an odd way, this helped: I grew up in the land of tobacco, shotgun shacks and the Ku Klux Klan. I entered school the year after desegregation. Few people today understand this: it wasn’t just black versus white; there was an undercurrent of seething animosity toward anyone different. It seems heartbreaking now, but as a kid I felt safer carrying my little Cub Scout pocket knife to school, and when I finally had enough one day in the eighth grade and stood up to the worst bully on campus, he didn’t attack me. He went home and killed his parents. It was a horribly dysfunctional place and time.
As sure as my life depended on it, I knew that I could never be a product of that world.
So I became a citizen of the planet.
That took me thirty years.
In an odd way, this helped: I grew up in the land of tobacco, shotgun shacks and the Ku Klux Klan. I entered school the year after desegregation. Few people today understand this: it wasn’t just black versus white; there was an undercurrent of seething animosity toward anyone different. It seems heartbreaking now, but as a kid I felt safer carrying my little Cub Scout pocket knife to school, and when I finally had enough one day in the eighth grade and stood up to the worst bully on campus, he didn’t attack me. He went home and killed his parents. It was a horribly dysfunctional place and time.
As sure as my life depended on it, I knew that I could never be a product of that world.
So I became a citizen of the planet.
That took me thirty years.
My wife Deborah and I created an extraordinary life of our own design. 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, we explored the world any way possible, often for months at a time. We built an off-grid home in the woods. We traveled the U.S. in our solar-powered Airstream. We were gypsies, we were refugees. Our goal was to redefine living, and we did it.
As a college-level environmental educator, I used modern technology to share with my students our 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 our 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 and peers was extraordinary. My courses filled instantly. My colleagues and I did great work.
The result was a journey through the human experience, both glorious and painful. Leaving behind a conventional lifestyle, we explored the world any way possible, often for months at a time. We built an off-grid home in the woods. We traveled the U.S. in our solar-powered Airstream. We were gypsies, we were refugees. Our goal was to redefine living, and we did it.
As a college-level environmental educator, I used modern technology to share with my students our 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 our 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 and peers was extraordinary. 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 its loss. 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 had probably fought for a considerable time. It wasn’t just any version, but the one with the worst mutations and the worst 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 tender my resignation. 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.
Yet that was not the worst. This was: I was the primary caregiver to my brave wife, who was battling metastatic cancer and her therapy was no longer working. Deborah and I sat on my hospital bed together and worked out the scenarios for who might go first.
As an individual and a couple, how do you prepare for that?
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.
On November 11, 2015, I was diagnosed with acute myeloid leukemia, a disease I had probably fought for a considerable time. It wasn’t just any version, but the one with the worst mutations and the worst 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 tender my resignation. 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.
Yet that was not the worst. This was: I was the primary caregiver to my brave wife, who was battling metastatic cancer and her therapy was no longer working. Deborah and I sat on my hospital bed together and worked out the scenarios for who might go first.
As an individual and a couple, how do you prepare for that?
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 like a cruel joke … I kept not dying.
My doctors were either neutral or mildly resistant to my approach: “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 faces 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. 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.
A week before my scheduled discharge, five poker faces 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. 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.
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, Deborah and 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.
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.
When such devastation happens in our lives we have to ask: Where did I go wrong? Perhaps there is no wrong. Still, in my previous life, I could have been even more brave. I could have been even more authentic.
As individuals maybe we can change the world – or maybe not – 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 instead of imminent death. Maybe that is why I am still here.
Today, I am a returning citizen of the planet, hopefully affecting 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 share this life of love and resurrection. I cannot possibly do it alone.
When such devastation happens in our lives we have to ask: Where did I go wrong? Perhaps there is no wrong. Still, in my previous life, I could have been even more brave. I could have been even more authentic.
As individuals maybe we can change the world – or maybe not – 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 instead of imminent death. Maybe that is why I am still here.
Today, I am a returning citizen of the planet, hopefully affecting 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 share this life of love and resurrection. I cannot possibly do it alone.
