one of the most interesting things I have found in this whole process is the dislocation of my perception from time. when i went into the emergency room, i had this profound experience of timelessness that has really stuck with me. there are these lights that create a perpetual kind of midnight, a sense that there is only 2am and it is always 2am no matter what time of the day it is. there’s also a sense of uncertainty about when you will be seen and you are sitting in one place without a lot of change other than the minimal bustle of nurses and patients around this big desk.
i found that i had this ability to wait that i had not really appreciated before. i knew that it could potentially be hours and hours between each little interaction and so i sat, often without anything to do, without expecting anything, just watching things happening, feeling my body and doing nothing. i haven’t felt a sense of my mind being so clear, i think, ever and all of those commentaries about not trying suddenly started to make sense to me.
i have been TRYING to meditate for my entire life because effort seemed like the thing that made my activities better. instead, i think that maybe there’s this latent animal thing inside me that’s just cool with stuff, happening or not, just sitting, kind of idling. I can watch things, but none of them really have anything to do with me. i notice that sometimes the things set off a cascade of thoughts in my head and i don’t resist them or push them away or engage with them much because i am so exhausted and they jut eventually float off like twigs in a stream as though they were never really there to begin with. it kind of feels like i cracked the code but when i think that i know that i’m lapsing back into this mindset where i want to do things right and good and try really hard and succeed and effort, effort, effort.
it seems like there’s this directive in my life that says “let go, nothing matters.” it’s kind of surreal and sometimes i wonder if i’m dissociating (which i might be), but other times it just feels so restful that i figure i must be onto something, nothing does matter. all this stuff that i was letting stress me out just went away, in a second, in a flash of total—disruptive, explosive—change, it all went away and i survived and continue to exist.
one of my symptoms also caused this radical shift in my appearance. one of the major veins that channels blood away from my face and neck and arms is being constricted by the tumour. it feels pretty awful but also causes my face and neck and arms to puff up, effectively doubling the size of my neck and puffing out my cheeks and face like someone who’s allergic to bees. when i happen to see myself in the mirror, my skin seems to be flipping out, all red and spotty and my face is huge and puffy.
at first, it was really scary to see such a radical shift in my appearance but i was assured by my medical team that that particular symptom isn’t life threatening, just uncomfortable and strange. so, i looked at myself and over the weeks that i got to know this new face, and in getting to know it, to begin to recognize it anew. i described it to a friend as a cherub version of me. i also kind of look like my mom, who’s become rounded in her old age. in the end, i find that i kind of like it and though i will be relieved when i stopped feeling like an overstuffed sock, i came to realize that my face, the face that i had been counting on all these years, is also temporary.
as i get older, my face changes. i might become rounder like my mom and, i think i might be more okay with that than i once was. at this moment, the thought of getting wrinkles and gaining weight sounds absolutely blissful because it will mean that i survived this illness. i have been self-conscious about my face and body for most of my life, probably a potent mix of gender dysmorphia and the kind of wholesale body shame sold to our young girls. as i have started to embrace myself (and the ever innovative youth have expanded the possibilities of aesthetics into even such things as “goblin-core“) i have started to think, it’s okay to feel weird and small and kind of vaguely resembling a elf you might meet, an overly enthusiastic side-character in a RPG. the possibilities of what might be considered beautiful are expanding in our culture and in my own life, as i look in the mirror and think to myself, it’s okay to be sick and to look sick and to have the effects of that sickness reflected in my face and body. i didn’t do anything wrong and i don’t have to be beautiful right now.
this body has become something infinitely more precious as i have realized how temporary it is. it keeps giving to me even as a tumour takes over the majority of my lung cavity. it fights for life, for MY life and i am so incredibly grateful. i don’t really care so much that my face sometimes looks like a pumpkin, even though it has wounded my vanity a bit, because this face is me and it is fighting to preserve the life that i have been given, so pumpkin or no, it is a gift.
i think your 30s and 40s might be that time when the struggle for identity starts to wind down and you finally start settling into your body like a suit that fits. all of that gawky struggling is over and i realize how profoundly awesome getting older really is. the cult of youth is a total crock. we should all be striving to be grandsires, at least i know that i am. i appreciate the wisdom that i have fought for in these 38 years. i know what i like and what feels good to me. i don’t wear tight shoes or ill-fitting clothes. i accept that the things that i like don’t always make sense to other people. i accept that other people’s narratives of me might conflict with my own but that my own story is the one that matters.
i am trying to write that story now, in a way that makes sense to me, in a way where i can be a tender human animal within a circle of care. none of the things that i thought mattered matter. the only thing, when it comes down to it is the effects we leave on other people, the times that we were kind and helped other people’s lives to be just a little better. i am going to remember that more than anything moving forward, that in one of the darkest moments of my life, it didn’t matter what i looked like, what i did for a living or if i had any money, it was the kindness that lasted, the kindness that meant something. it was the people who i had touched and who touched me that made the difference, that stayed when everything else was gone.
i don’t know with 100% certainty that i will get through this but i do know that i will try to approach the challenges of my life with what grace i can muster. i will approach this situation as all others as a journey to be taken earnestly, which may bare the fruit of wisdom as all journeys of suffering do. perhaps as i process these pearls, i can impart a few more moments of grace into the world as well, as we continue to face what seem like insurmountable challenges in our shared world. it seems immutable but it is not. the obstacles seem insurmountable but they are not. what seems solid can melt into the air in a split second and everything can be different. the only constant is change. the only thing we can rely on is change and if we can help each other, the disaster won’t ever really come, because the kindness will be there to catch us.
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