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I have an illness that , officially at least , has no cure. There are promising experimental treatments , sure, but there is not a single FDA approved treatment. And most of us don't even get palliative care for the symptoms. The quality of life of this illness is so low that for awhile, I didn't know how people lived with the reality that there are no treatments. Now I realize that they don't live with that reality. I remain convinced it's an impossible reality to accept, one that would tear a person apart.

I have never lived with that reality. 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 been an affectless automaton. At one point in my illness when I got a lot worse , probably from my brainstem compression becoming 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 illness.

Since then I have become more and more vacant. And 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. And 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 to survive, have had to compartmentalize; 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, more fuelled with rage. Much of the time, I’ve slouched toward oblivion; curled up into the tiny space afforded to me by my illness, but now that my body has started to awaken, I am hurled into awareness of the gulf between what I wanted and what I became.

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 me in particular. The quasi-buddhist, quasi-nihilist advice to simply adjust oneself constantly to ones circumstances, no matter how bad they get, always turned my stomach. It’s not an exaggeration to say that I have probably stayed alive and stayed looking 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. ]

When survival means "mere survival", not growth or thriving, I oppose it. When it means vegetating at the lowest step 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 accepting being forgotten by the entirety of the world, I oppose it. when it means accepting mediocrity and radiating oblivion, I oppose it. is it fruitless and vain to "oppose" an evolutionarily conserved instinct? probably. but who cares? It's also 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. so don't fault me for trying to find my way away from the magnetism of false hope.

It's your choice how to interpret what I say about survival, to what extent I mean this literally. it's all contingent on what realities and situations there are available to choose from. Of course 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?

Postscript

There is one hypothesis among me/cfs scientists that the illness is a homogenous response to heterogeneous stressors, a sort of hibernation. (Specifically, "dauer", a state of hypometabolism found in c elegans).

That in a sense, my body is intelligent for having chosen "mere survival" over options like heart attack, cancer , etc that might be "normal" responses to the same stressors my body has encountered--environmental toxins, infections, etc.

I find it plausible , based not just on the available scientific evidence but also based on my experience. it does feel like my body has traded made a tradeoff between quantity and quality of life. It does seem like being sick has made me experience time in geologic phases/increments.

It is unnerving to realize how quickly one can adapt to that , how quickly one begins to accept sleepwalking rapidly through highlight reels of weeks and then months and years. and that is part of my reason for wanting to actively oppose whatever in me is willing to compromise with that and do whatever it has to to cope.

The mere survival isn't waking, living, dying or dreaming, but a painful, liminal state directly between life and death.

On some nights sleeping out in the desert , I feel like I'm 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 could be ocean, and instead of the messiness of any conventional method of suicide I like to imagine I could just wade out into that ocean and disappear forever.

I have been fascinated by Christianity for a little 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 Nietzsches view, Christianitys opposition to wordliness 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 I have good reason to think this for reasons I'll answer in another post), the idea of "wordliness" takes on a new dimension of meaning. If the modern world has contributed to making me very ill, ghostlike ; and furhermore 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 "worlds" that are poison worlds, that are now overtaking the earth which is the ground for all being; really something borne out of weakness? Is a vehement opposition to a form of being-in-the-world that means accepting ones slow senescence at the hands of Capital , destroyers of the earth, Moloch, all of those animated bodies of the unliving that populate our new "world" , really the same as a ressentiment-borne rejection of the earth and the body?





I am rejecting survival in favor of life in its fullness or death in its open promises. I am rejecting the "world" in favor of the earth, and in favor of the potential worlds that don't marginalize me.

while I may not follow many of Christianity's tenets, the worldliness that may have been worth defending against its 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.