Chapter Two: The Day My World Changed

Published on 2018-09-15

It was the summer of 1991 in Maine, a year after my decision to commit to Ghost Nets. I woke in my studio. I had been living in the building 24/7 holding a 30-day vigil in preparation for a Medicine Wheel in August. The occasion was the formal launch of the Ghost Nets restoration project as art.  I had planned a lot to do that day and was ready to bound from my bed into action. Bear’s large black head was resting on my chest, his way of reminding me that it was time for me to get up: he needed to go out. I could see, smell and hear the ocean between the planks of my studio. The walls were just one layer of spruce boards. The welcome fragrance of wood mixed pungently with the sea. It reminded me that I would have to get to work and do a lot of repairs on this building if it wasn’t going to fall down around my ears one day as I stood at my easel. I was awake and ready to get up to let Bear out. But nothing happened. 

The message I was automatically sending from mind to limbs was disconnected. I tried several more times. After a great effort and too much time, I was able to roll my head to the right to look into Bears eyes. The small muscles around his eyes looked worried, baffled and tense with discomfort to me. I was worried too and also baffled. Signals from brain to body were not firing my nerves the way they should have. My conscious message to my muscles, “get up,” was having no impact at all on my relationship to gravity or my own physiology. My body was ignoring my mind. The results of willpower and intentionality I had taken for granted my entire life until that morning did not lift me from the bedding I had arranged on the floor where I'd spent the night. My willpower did not lift me one inch from my horizontal position. There had been ne other experience in my life, when Bear was a puppy that was something like that morning. In 1979, I had an argument with a horse when a semitruck sounded his horn to scare us as he drove by, and I fractured my skull when I lost the argument to calm down. For a year, I was laid low. But then, I had no will to recover except my misery. My baffling struggle then was over how my brain couldn’t activate my will as I had counted on my entire previous life but I COULD move and think. This time I had plenty of will and no misery. I could think but no amount of willpower was having an effect to change my reality. I could not move. 

I kept trying. I tried again and then again. I continued to try to move my body for two hours. At first, my response to this novel experience was only puzzlement. As dawn began to pass into midmorning, I began to slide from confusion into a state of unmitigated panic. That was when I knew Bear and I had a serious problem. There was no phone in my studio. I didn’t expect visitors. I had to solve this problem myself. What I would learn later, after three separate doctors diagnosed my symptoms, was that I had a serious case of Chronic Fatigue Syndrome (CFS). I had heard of CFS. It would strike others. I felt sorry for them. It sounded terrible. Not me. But it WAS me that morning. That sunny morning, my life changed forever. 

CFS can strike quickly like that, without warning. As in nature, an imperceptible event can easily snowball and devastate an entire system before there is a chance to recognize, understand or mitigate the damage. No one knows yet what causes CFS. The cause or identification of the precipitating event remains unknown but my systemic devastation was very clear. CFS would eventually teach me that my own body might embody the same ideas about collapse and adaptation I was applying to and analyzing in a larger world. That morning set my feet even more firmly on the path to a premise about environmental restoration through art that was as private as it was public. My devastating experience became the seed of what I would come to describe as the development of trigger point theory: how a very small point in a very large system might be the thread to pull to effect an orderly restoration of a degraded ecology. 

But that was later. Years away from that scary morning. But soon, I would come to understand that I would spent the rest of my life from that day forwards knowing that at any moment my body might fail me again, my predictable responses might vanish like smoke without warning, even in a crisis, whether or not I was prepared, alone or in the company of others. That fact inspired a great deal more humility, compassion and patience than I could have ever previously imagined or desired. I would have to learn to routinely and continuously monitor myself. I had to be prepared for the possibility of imminent helplessness and dramatically reduced capacities. After I was diagnosed, one doctor said, “the good news is you won’t die. The bad news is there’s no cure.” 

That first sunny morning of the rest of my life, all I knew was that I was having a terrifying experience of helplessness. Bear never made a sound as the morning sun slowly moved the shadows of the window sashes across the floor. Bear never left me. He never moved while I couldn’t move. I eventually made my body move from prone to upright. I’m not sure how I finally accomplished that task. I glanced out my window over my right shoulder to the nearest island to my south and thought of all my plans for the day, for my future. Then I managed to walk down the stairs I had recently built to the front door of my studio and could finally let Bear out.

The next several years were problematic. Briefly, I tried to return to New York City but I couldn’t cope with simple tasks there. It was too physically demanding. Carrying groceries left me devastated for the rest of the day. Walking Bear was an ordeal, Herculean and devastating to attempt, especially on those days when the elevator wasn’t available in the sixth floor apartment building where I lived. I retreated back to the island, in defeat. Back in Maine for the winter, it was torture to try to complete large paintings in small increments of attention. Previously, working large that been a delight. I had reveled in the act of dancing in the space of the imagery with my paint-loaded brush. I had always been a slow painter. Now the rate of production became glacial but as the years passed, a body of work began to aggregate. But now, each day usually had humble goals, at the minimum, at least one 4”x4” drawing and one walk in the paths I was creating on the site. Sometimes only one or the other, sometimes neither was possible.

The years passed slowly but the site transformed. Very slowly, I came to understand how to focus my limited stamina and personal resources. This is also how nature revives a degraded system. Nature finds the refugia of interstices between two rocks and lets a bird deposit a seed there wrapped in the fertilizer detritus of defection. I looked for the tiny changes in my circumstances, detritus of insight wrapped in my despair and frustration that moved life forward on the site. Slowly, I began to understand the rules for how agents might interact to identify and activate a trigger point. This insight, that there are rules for how humans might regard events and agents to interact with and to effect each other was another step towards trigger point theory. Time became an event like a sonata unspooling over long stretches of time: long stretches of experience defined by the tempi of change, wending between harmonies and dissonances over the course of the ten years of Ghost Nets. It would almost be another twenty years before I could fully apply trigger point theory on more ambitious scale or initiate a sonification of what I was analyzing. Almost thirty years into the future, that would be The Blued Trees Symphony.