Hey all. ~1 year PFS. There’s not much I want to say about the concrete aspects of the disease here.
My purpose in this entry is partly to instead ask the community how they’ve managed to hang on, or perhaps what that looks like when they’ve been struggling to stay above water for such a long time, and all seems lost or too far away. Partly, this is also for me vent as well.
I’m not asking about the method of finding hope. I’m familiar with that terrain. Rather, I suppose I’m asking how one buys into the normative claim that it’s all worth it when every fiber in your being tells you that it’s not.
Like Hume’s famous adage, you cant derive an ought from an is. In other words, while it might be the case there are certain general means for carrying on, for me, right now, thinking about spending time with friends, or pursuing a hobby, or finding something that brings me joy, or anything else, just falls short because there’s almost always this shadow, now hanging overhead, silently sapping my energy, or else otherwise looming in the distance. Those stratagems might work most of the them, but I don’t feel compelled to try them.
I know how to find meaning. I don’t know, right now, how to muster up the will, or how to shift my mood, or how to remember the feeling in my body of wanting to take the first step, yet again, towards joy and healing. I don’t feel like the I-ought-to-find-some-joy-in-this is enough right now. I don’t even feel like trying to get to a second-order wanting; of wanting to want to get better or feel hope or joy.
I used to feel like I was an optimistic nihilist. Someone who, like the absurd hero of 20th century existentialist thought, lives with conviction and purpose in a world devoid of sympathy or purpose for humankind and our toiling, our grasping at some thread to guide us. I cannot become religious, and I pray that I never feel so inclined, so for me, this is all there is, and that’s how I want my metaphysics to remain. Only now, instead of hugging my boulder like the tragic Grecian hero Sysiphus, I’m not so sure I should, nor am I sure that the struggle to find joy is actually enough.
In his famous essay, Camus ends by stating that “one ought to imagine Sysiphus happy,” and for a while, for the first 27 years of my life prior to PFS and chronic illness, I could always gloss over the glaring problem of why we ought to imagine Sysiphus happy without justification or warrant, because the answer was apparently pragmatic rather than absolute: you must imagine that the struggle is enough, because the alternative is death. This pain is enough, but only if you first accept the premise that you ought to live; if you accept the premise, than the conclusion of accepting one’s condition as being sufficient is almost a tautology, or at least not illuminating. Surely avoiding suicide at all costs entails living by any means necessary.
But what about when I don’t accept the premise?
Beyond my battered body and mind, I see a planet on fire, a world sliding into fascism and strife, a technocracy emerging from the cradle to make us all infantile in its place, as unpaid, vapid data troves, a pandamic that ravaged hundreds of millions of people, leaving an unfathomable amount of lives to contend with a similar, long term, potentially permanently disabling condition, and billions upon billions of people who will inhert this trash heap, once a veritable paradise among the stars, now sullied by greed and parochial short term gains over long term utopic planning. I see a fiend beyond the paltry means I have to describe its wickedness.
And me? An end point evolved to fear death, suckle on an endless loop of fleeting pleasure, and cling to my mortal shell, no matter how ill befitting it may become, because one must imagine me happy despite the privation? Or, because otherwise, what remains but a longing for the infinite void?
Once, as a young man, I had an ego death from a drug induced seizure, and I lost everything for a while. My words, my concepts, my categories, my gestalt, my past, my future, my very self. But before that, before I slowly pieced this mosaic back together, there was nothing, not even an awareness of that very nothingness. It felt eternal, and very, very still. It was beautiful.
Perhaps this is just a mood, a moment, a melancholia that will pass, and with it, day will break and I’ll accept the premise again that life worth it. That it has to be. For now though, I would by lying if I said that I dont long for some ineffable slumber.
I dont know. How are the veterans here fairing when they encounter a mountain that demands kneeling, from which they cannot move?
I seem to have lost the way forward.