Ending the War Within
Pondering inner and outer autoimmunity
We have been trained to think we are discrete, separate individuals occasionally colliding. But we are interconnected, interwoven at every level, cells within a vast pulsing metabody. Whatever and however we fight, we are only ever fighting ourselves.
Too Much, Too Fast
When I experienced my first ms flare I was barreling through life trying to make it as a yoga teacher and performance artist in one of the most expensive cities in the world. I was chasing health through juice fasting as a way of bettering myself, but I think I was also trying to make myself disappear. I was hungry, insecure both literally and figuratively, and overwhelmed by the pain of loving a person who was decidedly unavailable. I was keenly aware of being “too sensitive” to the feelings and stimuli within and around me, and scrambling to survive in subcultures that were not designed for people like me. And in a moment that still rings across time, I wished out loud that I wasn’t so sensitive.
Within a few weeks I had lost feeling from my toe- and finger-tips up to my mid-torso, replaced with a pins-and-needles dullness like my body had been dipped in wax. After many months and alternative treatments without knowing what I was treating, the worst of the numbness subsided. Other symptoms would come and go over the years without me realizing they were connected. The numbness returned to my hands just after the pandemic began. This time I had insurance and access to enough different doctors that I was finally able to get a diagnosis, over 13 years after the first occurrence. Until recently, I seldom spoke about my symptoms for so many reasons: shame that I wasn’t better at taking care of myself - like getting sick was my fault, ignorance about the ways my various symptoms were connected, the general ableism of this society, hope that whatever had happened was cured, terror when it came back.
Once I had enough test results to understand what is happening to my body, I started trying to make sense of it in a way my poet’s mind can comprehend. Multiple sclerosis is immune cells attacking nerve cells, usually in the central nervous system. I have signs of damage in my brain, spinal cord, and eye. My most obvious symptoms are considerably reduced feeling and dexterity in my fingers, reduced clarity and color perception in my right eye, fatigue, brain fog, depression, anxiety, insomnia, and joint and muscle pain. Some things fluctuate and some are continuous. A few I’ve experienced most of my life but were exacerbated by the last flare. All of them are frustrating, but as an artist who uses my hands and eyes to work and live, some of the symptoms are heartbreaking in ways I am unable to fully articulate. While I’m taking what physical medicines I can, I need to reckon with the many emotional and mythic levels of this illness if I’m ever to find peace.
Enemy, Mine?
In the body, our immunity is an organized intelligence with operatives in most systems. There are little warrior cells in our skin, bloodstream, glands, and lymph nodes that are supposed to protect us from unhealthy visitors, move out diseased cells, and protect the health of the organism. A well functioning immune system is efficient and mostly invisible, apparent only as destroyed pathogens leave the body through phlegm or the heat of a fever. It functions unconsciously, automatically responding to perceived threats.
In a society, soldiers and police are an organized intelligence with operatives everywhere. They are supposed to protect the most vulnerable people, serving general wellbeing through devotion to the common good. A well functioning military (I imagine) would be mostly invisible, showing up to repair a bridge or stop invaders.
In a body with autoimmunity, immune cells are confused and attack the body’s own cells, mistaking them for intruders. In a sick society, soldiers and police attack and harm people, often the most disenfranchised, those most sensitive to the lack of socioeconomic balance, mistaking them for threats.
Eventually every part and everyone suffers from the misdirected force.
It is common to perceive these as isolated experiences. To insist there is just something wrong with my individual body. The frame of my soldiers attacking my feelers could be a weightless metaphor for a purely physical and distinct phenomenon.
But we are far too permeable and fractal for that.
Microscopic nerves resemble mycelium in their branching and connecting, and they distribute information in similar ways. Our lungs look like tree roots and branches. A cell looks remarkably like a city.
The barrier between me and the world is only a few cells thick, and we exchange electrons with everything we touch. Separation is an illusion.
Putting the Weapons Down
I’ve spent most of my life in the throes of conflict between the imperative of productivity and the call of creativity. Commitment to art has usually won, but not without shame and the sense that I am failing at earning my place in this world. Blaming myself for not being able to “make it” rather than examining the drive towards achievement regardless of consequence.
With such confusion, in retrospect it is not surprising that some parts of me lost sight of what we are protecting and who should be allowed to grow. That they started damaging the parts that feel and determine what commands to give. And now the orders that govern the whole organism are coming from a damaged place. The damage reinforces itself. I keep needing to ask what is corruption, and how do we tend it when our methods are, themselves, corrupted?
As this nation devolves towards a kind of feudal-corporate fascism with a veneer of conservative extremism, I feel compelled to investigate the ways I play authoritarian with my own nerves and muscles. The ways I try to force my body to cooperate, or push past my needs for rest and pleasure. Or how I numb out when emotional or physical pain is overwhelming, usually through addictive behaviors that are ultimately more damaging. If we want oppression to end, we need to learn how to stop bullying ourselves, and interrogate the gravity of obedience.
This isn’t a practice of blaming myself for getting sick or trying to just positively think my way out of it. Punishment and bypassing are part of our collective psychosis. Instead, I get to be curious, radically curious, profoundly curious.
What is our relationship to control? What is it to participate and contribute without needing to think we know the answers? Without trying to impose our perceptions of morality on bodies - our own or other people’s. What is safety? How do we actually protect life? Can anyone truly be well in an unwell world? Who is the arbiter and what are the markers of wellness? How addicted are we to being at war? Can we choose other ways?
We have mistaken domination for protection and punishment for accountability. The urge to police each other cannot be trusted in a profit-driven yet disembodied world. I cannot fight myself anymore. I need to be able to feel to know where my boundaries are and what healthy relating could be. The antidote to this systemic attack on feeling, internally and culturally, is to cherish our feelings. To celebrate the sensitivity that remains. To learn how to both serve and savor life. To hold on as tenderly and fervently as we can to what we haven’t lost yet, to what still lives.