Aren't We All Always Some Kind of Specter

Isn’t it odd how illness reframes the passage of time from months and years to pills missed, hours between doses?

Share

Due to a long series of extraordinarily boring reasons, I was unable to get my enzyme prescription for a little more than two months. Heather, genius as she is, found supplementary replacements that were able to mostly carry the weight. Even an off-brand of my same prescription from Cyprus, which was quite impressive to find. Nevertheless, my prescription was for around 14-16 tablets per day which is about 994 pills across the 70-odd days I was without, and the bottles I was able to acquire were for around 60-80 pills each. In scarcity, there is learned tolerance. Now, this isn’t a disaster by any means - I’m able to reduce the fat content of my meals, reduce the size of what I eat, such that I can still mostly survive well enough. Though, I’ve found even when not inflicting symptom flares on myself, the enzymes also have a vital job of vitamin and protein absorption, which when disrupted tends to lead itself to a passive withdrawal of energies. I’ve explained this before, but it’s incredibly odd to feel exhausted but not really be able to place where I feel this way. The short way of describing this condition is a type of starvation, my body’s denial of the requisite materials for it to succeed.

This past week not only did I (finally) get my prescription back, but I also saw a director of gastroenterology who has published papers toward researching cures and dietary trends for biliary-system conditions.

You see, for the last seven months or so, while I’ve had a few addendums here and there toward the continuation of the treatment of my chronic pancreatitis, I’ve been fairly lost communication-wise. So, I sent a message advocating for myself: that I had an advanced imaging procedure back in October with minimal acknowledgement toward what it meant; that I had genetics paneling which came back negative in February with no notes regarding the “well, what now?” of it all. So I got a referral to this director, and suddenly the calls started coming in: the appointment I’d requested with a nutritionist was finally made with profuse apologies that the order for that appointment had never been addressed, several follow-ups regarding the availability of my prescription and the pushing of its availability from my clinic.

Truly this is not to place blame on any party, I know very well that the medical field is full with trials and strife, that the point of all these systems for communication and notes-tracking is, in some ways, to make the actual patient-diagnosis-treatment cycle more abstracted and therefore make it blend into the everydayness of it all. I suppose I have a patience for the people even if the machinery of it all will forever churn my ire.

I met with this doctor who did a few things fairly matter-of-factly that relieved me immensely: first, he acknowledged directly that I am absolutely in a state of chronic pancreatitis, that in fact about two-thirds of patients of acute pancreatitis will develop chronic pancreatitis; second, that the interpretation I’d been concerned about in my imaging last October was, in fact, quite concerning - that my pancreas has functionally been reduced-in-size by half - something that had not been spoken to previously; third, that I would almost certainly be on this enzyme treatment indefinitely; fourth, that there were certainly more tests and procedures capable of being done which he would now be ordering for me; fifth, he acknowledged that due to my disposition, my willingness to find out whatever’s wrong with me, my fairly noteworthy health in the context of being afflicted with an otherwise debilitating illness, I was an ideal candidate for experimental procedures should the upcoming tests continue to not reveal anything (and of which gave me the moment of realizing that, even if these procedures do not save my life, the information gained from them may one day save others’ lives who are healthy and for one reason or another have their pancreas giving out on them).

And there we have it: you know what I know.

In six days I will be honoring my Mother in the sixth anniversary of her passing. In the last few weeks, several beloved pets for people close to me have passed away. These days I would be lying if I said I couldn’t viscerally feel the passive grief most everybody is walking around the world with. The weight in the shoulders. The catch in even the most seemingly carefree of voices. I don’t know exactly what to call this grief, but I think it is an evolution from a distinctly millennial grief: the grief of “I don’t feel like I can have children in this world responsibly.” Not that one doesn’t wish to have children, but that they have let the disbelief or the (justified) cynicism overtake reproductive desire. The form it takes now I believe is rather close to a true Nihilism. That we have moved beyond a point where anybody’s individual actions can matter to a point of effecting the world into betterment; that the world is possible of becoming better.

Most who I speak with have an utter catastrophic vision that we as humanity have well-and-truly moved beyond a point of recovery. This isn’t to say they won’t continue attempting to do their best, to be kind, to care for those around them, but rather it’s saying that there’s no hope feeling these actions. In one way, it moves me to know that even with no hint of reward, no thought toward redemption, humanity will still, mostly, attempt to do good. In another, witnessing the heaviness of this grief, grief over the loss of possibility, the loss of hope, makes me weep.

When I was sixteen I remember distinctly sitting on a ventrilo (a server-based voice chat system) channel with my late 30-something World of Warcraft guild leader who had lost a grandparent and was crying over it. I had no idea what one was supposed to say in grief, so I listened for a long while. Again, because I didn’t know what to say, I mostly talked about how I admired them, and how I’m certain that in death, even if their grandparent hadn’t noticed all of the good qualities of them in life, they would be able to witness all the ways in which they’d turned out well enough. This prompted them asking how old I was and telling me I have an old soul. The irony here being this was already a year after I was forced to change guilds and move servers because my previous guild leader had been grooming me.

I have been trying to dive into the memories of this era more effortfully lately. Understandably, a response to being groomed, I don’t remember much of the particulars of my time playing WoW. This era after-the-fact, though, was mostly with a handful of people: a handful of older Canadians living in British Columbia, one girl about my age who, of course, we attempted to e-date, and this guild leader and his wife. He was a former marine cryptologist, which I thought was utterly fascinating, especially for his general disdain for literature which I was quickly learning my love toward. All of the older individuals in this guild were chronically ill without exception; that’s how they found each other apparently, through a chronic illness forum.

All of my life has been filled with meaningful online relationships refueling my love of other people. World of warcraft, kink communities, the various dutch and australians who I met playing Tribal Wars 2, poetry twitter and its ability to connect me to people who I love so dearly, my D&D group who see me more often than just about anyone else in my life, even the random group I stumbled upon with Old School Runescape all nourish my faith and ability to meaningfully connect with people beyond exact-match parameters of belonging.

It humbles me now, writing this, that the bricks had been laid out before me all along: my involvements with online communities was always marked by their ephemerality. One could come and go as they pleased in most of the aforementioned groups without much note, the only connection most of us had to each other was some anonymized screen name. And so in this way, I was always learning a passive acceptance of grief that, should they so wish it, any individual in these communities could leave tomorrow and say nothing, and I may be sad about it, and I may remember them nostalgically, yet this changes nothing about the fact of the matter: that I have no ability to connect with or continue my relationship with them.

Even more poignantly than my intimacy with grief, though, were the two primary themes that people held in common across these groups: I was always finding myself attracting or drawn to those who were most in-question with themes of either their personal health, or their queerness. There are an astonishing number of individuals in my life who credit me with their realization that they were not straight, or that they ought transition. And there are an astonishing number of debilitatingly chronically ill individuals who I met online, or whom most of my correspondence now is online. The poignancy here becomes a reminder: no matter how sick I get, I must never doubt one’s ability to find those who would give them space, comfort, or sparks of joy, especially in the face of immense suffering.

I will end this meandering discussion and observation toward sickness and grief there and share a few themes of my life lately.

I really haven’t been reading lately. It’s quite a ferociously busy work-period for me, and as such even writing time has been sparse. That said, what I have been writing has been fantasy short stories which continue exploring and expanding the world I’ve created for the fantasy novel I wrote. Part of this is practice, and part of this is just the sincere joy of trying to tell a story that my loved ones will enjoy. I’ll link a few below that I am especially fond of but do comment or share any that you liked, and I’d be happy to tell you more.

Other People’s Poems continues, delightedly. We’re almost to our two-year anniversary! Some personal highlights for me involved witnessing individuals taking notes at our readings, putting together personal syllabi and reading lists and making their own notes toward craft and poetics; having our first four-person featured reader evening followed by our first entirely under-30 cast of featured readers.

Generally? Obsessed with crop tops and showing off my tummy.

Really love the new Slayyter album.

Really hoping to write to you all more frequently. Let us see what delights time makes of us, huh?