While I had all but quit working in mid-2011, by the end of 2012 I withdrew from worldly life in order to honour the limitations of chronic illness and disability. My goal was to live entirely within my limited circle of capabilities and learn to translate the language of my body in a new way. Part of this strategy leaves room for the idea that, over time, the circle of capabilities may expand. As a result I have always kept a space open for returning to work.
This wasn’t the only reason I kept a work-related space open in my way of living. Making a beneficial contribution to the lives of others and serving the story of humanity to the best of my ability has always been important to me. And to be honest, I’ve found it helpful to protect this space so that I could have something pleasant to imagine for myself, something to look forward to.
Beyond that, it’s fundamentally difficult to not work and continue to feel worth anything in this society. We tend to equate productivity and activity with self-worth and the value of our lives. Logistically, one must produce enough to keep a roof over head and food in the belly. Morally, we are obligated to not become a burden to society or to give into limitation and weakness. These are powerful and intense cultural currents that aren’t easy to swim against.
And so I have built and maintained this little room in my way of living and doing illness dedicated to work. The door has remained closed for much of the last four-plus years, but the room is airy, clean and ready to have the curtains thrown back to let in the light, at any time. At random intervals I find myself dreaming and scheming about what it would be like to open my Work Room and invite others in.
Yesterday, as I was recovering from a visit from friends, I was having trouble concentrating, feeling deeply fatigued and worn very thin. As is often the case at these times, my mind was over-focused on inward racing thoughts. And, as is also common under these circumstances, some of those thoughts were antagonistic and agitated.
I woke this morning with one of same thought patterns in my mind, but with a much less defensive answer. As I journaled it out, it dawned on me that I may have just articulated something profoundly important to my way of living and doing illness.
Why don’t I just go get a job – or volunteer, or something? Because, over decades of creativity, experimentation and persistence, the results remained consistent: relapse, destabilization, meaningless suffering and overall negative outcomes. Additionally, regardless of the strategy employed, these results began to show themselves within weeks of initiating each and every attempt. All efforts to adapt and continue yielded intensified, often more damaging, results.
I have read that over half a dozen times since typing it out, hesitating to move on from it. It’s not that I haven’t known this. Essentially, this understanding is what brought me to letting go of work in 2011. However, I imagined that I was walking away from a damaging pattern with a beloved activity and, somewhere along the way, I would learn to enact it differently. Now I have come to a bend in the road where I realize that if I continue I will leave all signs of the activity behind, with no hope of seeing it again. That’s different.
Is it possible that I could some day hit on a strategy unique from anything I previously attempted, supportive and flexible in the extreme, allowing me to work without harming myself? Sure. Why not? But is looking for that strategy, holding out for the moment of sufficient improvement, a worthwhile use of my life? What would happen if I really took my experience seriously?
When a primal defining force like illness shows up, there is a conflict between letting it change everything and fighting to keep life as unchanged as possible under the circumstances. I read recently that when the person (family, community etc) affected by this primal force can remain open to it touching everything it is there to touch, whatever is left of life exists for that person (family, community etc) to learn about, make meaning from and remain faithful to.
If you’re reading this, my Work Room no longer exists. And my practice of patience, gratitude, love & grief has taken me deeper than I ever really wanted it to.