Mere Survival: Notes on an Enduring Illness by Walker Storz

For most of the time I’ve been sick, I haven’t been able to cry. It’s as if my body hasn’t had the spare energy to process grief, or really any emotions. After all, how can you process a trauma when the trauma is ongoing?

I have an illness that, officially at least, has no cure. There are promising experimental treatments, but not a single one approved by the FDA. Most of us don’t even receive palliative care for our symptoms. The quality of life with this illness is so low that, for a while, I didn’t know how others lived with the reality that there are no treatments. Now I realize they don’t live with that reality; it is an impossible reality to accept, one that would tear a person apart.

I certainly have never lived with it. And although my life—youth, social life, vocation, ability to make art—has been stolen from me, I haven’t grieved much. I have to smile through physical and emotional pain. My body has become an affectless automaton.

The official name of my illness is myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. There is one hypothesis among ME/CFS scientists and researchers that the illness is a homogeneous response to heterogeneous stressors, a sort of hibernation. In other words, my body chooses “mere survival” over a heart attack or cancer, what might be considered “normal” responses to stressors I have encountered such as environmental toxins or infections.

I find this hypothesis plausible, based not just on the available scientific evidence but also on my personal experience. It does feel like my body has made a tradeoff between quantity and quality of life. It does feel like being sick has made me experience time in geologic increments. It is unnerving to realize how quickly one can adapt to this, to accept sleepwalking rapidly through highlight reels of weeks, then months, then years.

At one point when my illness got worse, I started to tolerate listening to music a lot less. Listening to music was one of the last things that tied me to who I was before I got sick. Since then, I have become more and more vacant. Given that I have not been offered much in the way of palliative care, I have opted to distract myself from pain and boredom by scrolling the internet, consuming forgettable and numbing content, using a phone as a narcotic. I have become someone that would have been unrecognizable to the ambitious artist and musician I was years ago. I have become the worst possible thing: boring.

I have had some moderate upswings from some of the experimental treatments I’ve done recently. But every time my body starts to recover, grief threatens to overwhelm me. I start to tear up. I start to have emotional responses to music. I start to reckon with the enormity of what I’ve lost over the past three years.

I have turned away from this grief in order to survive. But mere survival is something that I now have a strong distaste for. Every time I get a tiny taste of health or normality, I become less apathetic, less okay with a life of compromise, angrier. Much of the time, I’ve slouched toward oblivion, curled up into the tiny space afforded to me by my illness. Now that my body has started to awaken, I am hurled into awareness of the gulf between who I wanted to be and who I have become.

A lot of the generic advice offered to people with chronic illnesses about coping has been almost perfectly tailored to elicit the worst possible response from someone like me. The quasi-Buddhist, quasi-nihilist advice to simply adjust oneself constantly to one’s circumstances no matter how bad they get has always turned my stomach. It’s not an exaggeration to say that I have stayed alive and continued to look for experimental solutions for my illness only by taking the exact opposite approach, that of never accepting this unjust and terrible reality.

But perpetually deferring reality comes at a cost.

I have been fascinated by Christianity for a while, not just as an outsider, not just through some kind of academic anthropological lens, but as a different kind of encounter. What Christianity means to me is represented in the geometry of the cross, Christ’s unremitting orthogonality to the world. In Nietzsche’s view, Christianity’s opposition to worldliness was borne out of a hatred for life due to a kind of envy for those who are overflowing with it. But if any aspect of my illness is due to exponentially increasing pollution and environmental toxicity, which is a scientific question that still needs to be answered (but which I have good reason to believe is true), the idea of “worldliness” takes on a new dimension of meaning.

If the modern world has contributed to making me very ill, and if the social world has left me in the margins, then is this opposition to that world really slavish envy and resentment? Is an opposition to the “poison worlds” that are now overtaking the earth, ground for all being, really something born out of weakness? Is a vehement opposition to a form of being-in-the-world that means accepting one’s slow senescence at the hands of capital, Moloch, all of those false idols that destroy the earth, really the same as a resentment-born rejection of the earth and the body?

When survival means “mere survival,” not growing or thriving, I oppose it. When it means vegetating at the lowest level of the hierarchy of needs, I oppose it. When it means wasting away in the dark for years with no solid hopes of recovery, I oppose it. When it means being forgotten by the entirety of the world, I oppose it. When it means accepting mediocrity and oblivion, I oppose it. Mere survival isn’t waking, living, dying or dreaming, but a painful, liminal state directly between life and death. I am rejecting survival in favor of life in its fullness. I am rejecting the “world” in favor of the earth, and in favor of the potential worlds that don’t marginalize me.

It is the reader’s choice how to interpret what I say about survival, to what extent I mean this literally. I’m not a philosophical pessimist. If there is a chance at life that is more than mere survival, a good chance of healing, I choose that over death. But is there? It may be fruitless to always hope for a cure in every breathless press release about ME/CFS research, and yet we don’t fault people for trying to find hope.

While I may not follow many of Christianity’s tenets, the worldliness that may have been worth defending against asceticism, and the vibrant, healthy bodies that may have been opposed rhetorically by Christianity, may no longer exist. We may not, for very long, have a world left to defend. All that’s left then is the perpendicularity of the cross.

When you drive west out of the city of Las Vegas into the desert at night, it feels like dropping off the face of the earth. The city’s glimmering lights quickly fade away, and one enters into what seems at first to be a vast emptiness. When your eyes adjust, you find yourself in a new world. On some nights sleeping there, I have felt like I am at the edge of, or even in the middle of, a giant ocean. The wind becomes white noise becomes pixels becomes waves breaking on the shore. The darkness itself could be an ocean. I imagine I could just wade out into it and disappear forever. ♦

Walker Storz is a musician, artist, and writer living in Vermont. His work covers the themes of faith, suffering, and illness.