On being able to die, and but additionally now with the ability to swallow slurries—together with ice cream « The Story’s Story
A part of being able to die comes, I believe, from psychedelics; I wrote in “How do we evaluate our lives, at the end? What counts, what matters?”: “Bess (my spouse) and psychedelics taught me to like, and the significance of affection, and but too quickly now I need to give every thing again.” There’s an extended, yet-to-be-written essay about how psychedelics trigger me to see myself as a tiny instantiation of the huge, interconnected human entire, which is able to comfortingly go on even after I flicker out. Michael Pollan’s ebook How to Change Your Mind is nice and in addition covers a whole lot of existential territory. I’m on the lookout for a replica to cite from and might’t discover it, as a result of I’ve given so many copies away. Pollan describes the best way psychedelics are getting used palliatively for end-of-life care, which is, surprisingly the place I now discover myself. Fortuitously, I’ve a Kindle copy, and now I can authoritatively say that Pollan writes about how “researchers [have] been giving giant doses of psilocybin—the lively ingredient in magic mushrooms—to terminal most cancers sufferers as a means to assist them take care of their ‘existential misery’ on the strategy of demise.” Furthermore, for many individuals, “psychedelics [help] to flee the jail of self.” I assume I can say that psychedelics prophylactically assuaged my concern of demise, the best way Zofran is perhaps taken to forestall nausea.
Even earlier than the current circumstances, although, from psychedelics I discovered how not simply to know however to deeply really feel and internalize that we’re all a part of the present for such a short while, after which it’s another person’s flip, and that’s okay. Till science radically expands wholesome lives—which will probably be nice, nevertheless it’s not clear whether or not we’re close to to or removed from that collection of breakthroughs—we’re not right here for lengthy, after which we yield up the present, whether or not keen with grace or unwillingly with concern. However the different a part of being able to die comes from how a lot dwelling bodily sucks for me, a lot of the time, with a whole lot of struggles regarding respiratory and mucus.
The respiratory and mucus are associated; should you’ve spent a lot time round me, you’ve seen and heard that I’m endlessly attempting to hack up mucus—generally succeeding. Should you’ve not spent a lot time round me, take my phrase for it, and luxuriate in that no demonstration movies are included. I’m continually trying to clear the again of my throat and spit mucus up. The makes an attempt to hack up and spit out mucus can form of work for a brief time frame, however even after I hack up an enormous blob of mucus, the sensation of needing to take action once more, or drowning, returns inside a couple of minutes. Usually, I’m trying to hack up mucus that received’t fairly come out. I wrestle for hours in opposition to some plugs, understanding that they’re in my throat however unable to expel them. It appears like I’m heroically and single-handedly supporting the Kleenex business with all of the tissues I’m going by means of.
I can by no means breath usually. By no means. Not even when issues are going comparatively properly. Ponder what meaning. You’re in all probability respiratory usually proper now, and never even noticing that you simply’re respiratory, which is what my life was like till the massive May 25 surgery, which left me with out a tongue. The prior surgical procedure in Octoboer 2022—my first for the squamous cell carcinoma—and even the radiation from December 2022 to January 2023 weren’t simple, however I’ve described them to pals as “predominantly beauty harm.” My physique repaired itself tolerably properly in response to them. By March 2023 I might converse and swallow inside spitting distance of regular. Restoration wasn’t instantaneous however most of my authentic features and functioning returned. Strangers might need puzzled in regards to the neck scar, the place Dr. Hinni, the ENT who led the surgical procedure, eliminated all of the lymph nodes from the left aspect, as a result of squamous cell carcinomas of the neck often metastasize first to the lymph nodes. These lymph nodes have been all clear, main him to suppose that, after a profitable surgical procedure the place the margins have been clear, and radiation to kill any remaining errant cancerous cells, I’d be healed.
Throughout my first appointment with Dr. Hinni, in September or October 2022, after reviewing therapy choices, he leaned ahead, took my hand, patted me on the shoulder and stated, “Don’t fear. This isn’t going to be what kills you.” If this have been a novel, an editor would chide me for a too-obvious Chekhov’s gun. “Everybody is aware of what’s going to occur should you write this,” the editor would say. However I didn’t anticipate my life could be narrated by a heavy-handed horror writer. Joke’s on us. On April 26, 2023, the primary post-treatment PET scan confirmed a sizzling spot that turned out to be a squamous cell carcinoma on the base of the tongue. Half the tongue was supposed to come back out, and get replaced with a “flap” of muscle taken certainly one of my quadriceps. As a substitute, when Dr. Hinni acquired into the surgical procedure, he discovered that the most cancers had unfold throughout the bottom of the tongue, invading not solely the left lingual artery, which offers blood move to the left aspect of the tongue, however the precise lingual artery as properly. With out these arteries, the tongue can’t survive.
Dr. Hinni additionally found that the tumor had in depth perineural invasion – that means it latched on to, and possibly traveled to the bottom of my tongue on, vital nerves controlling neck muscle groups and oropharyngeal sensation. A few of these cancerous nerves needed to come out, and I assume a minimum of one managed mucus, as a result of at the moment I really feel like a mucus manufacturing facility. The irritation from the large surgical procedure and the tumors creates but extra mucus. The radiation, which, whereas minimally affecting my most cancers, left me with the present of salivary gland adjustments, so now my physique produces a very thick, sticky mucous. I can’t correctly really feel that mucus as a result of I’m lacking sensation in half my inside oropharynx. Due to the surgical procedure and nerve elimination, I can’t swallow usually to clear the mucus. It’s tough to wrap my head across the data that I can’t really feel half my throat, as a result of it’s onerous to think about a extra pronounced feeling than the one I dwell with day in, day trip. This mutant mucus both will get created in my mouth or throat, or flows relentlessly downwards from the again of nostril.
Consequently, each breath enters my nostril or mouth and triggers a Rube-Goldberg-like chain response of distress. The mucus in flip captures my consideration and sends a sign that claims: “Hey, you possibly can’t breathe accurately. Attend to this.” With each breath, a sign registers, encouraging me to attempt to clear my throat or else warning my aware thoughts that I may not be capable of breathe. This occurs all day, every single day, as if on a mechanism whose set off to start out the method over is the second I lastly clear my airway. It’s like being in an ER with a beeping airway machine that by no means shuts off, ever, and might’t be fastened or silenced. Whereas I attempted to dismiss earlier surgical procedure and radiation as “beauty harm,” regardless of the struggles they introduced, that huge Might 25 surgical procedure is “structural harm.”
I’m like Sisyphus pushing his boulder up the hill, besides the boulder is mucus, which appears worse—a minimum of a boulder doesn’t stick with the hill. I’m slightly higher at swallowing than I was, however I can’t tilt my head again a lot to get sufficient of an help from gravity, as a result of my neck is so tight from surgical procedures, from scar tissue, and from radiation. Swallowing—one of many acts which may assist—is made far more durable by neck tightness. My neck is getting tighter, not looser, over time, as a result of radiation scarring tends to current many months after the therapy. And the world is crammed with post-operative scar tissue. And, possibly most significantly, that is the place the tumors are rising. I’m trapped on this tightening, constricting, gooey head-and-neck system that I can’t escape from and that causes me to continually be spitting into tissues or sinks or the bottom or no matter different acceptable receptacle I can discover.
My neck, and my universe, really feel steadily extra constricted.
After I’m infusing meals—which eats like 4 hours, each day—by means of the peg tube in my abdomen, the mucus issues turn into worse, as if my physique is readying itself to take meals in by means of the mouth, however none comes by way of the oral route. After I get up within the morning, or at evening, I’m dry, and the mucus plugs are even more durable to expel than they’re throughout the day. When I attempt to converse, I’m typically stymied by mucus rattling round and stopping my vocal chords from vibrating freely. To talk, I need to attempt to hack up mucus first, which isn’t a good way to start out or have a dialog.
So typically I really feel disgusting all day, every single day, due to the infinite effort to hack up mucus. Typically I succeed. It’s gross for me, and it’s gross for whoever is perhaps round me; pals are very well mannered to say that it’s fantastic, and I recognize the politeness, however even when it’s fantastic for them, it’s disgusting for me. I go away trails of spit-out saliva and spit-up tissues wherever I am going. All day I’m bodily weak. All day my physique hurts from lack of movement. These cancerous nerves had vital features, and, whereas I clearly perceive why they needed to be eliminated, they’re a part of the irreparable structural harm, which might’t be wholly assuaged. Should you’ve guessed that these bodily issues result in poor sleep, you’re right. I’m very totally different, in worse methods, than I used to be.
I search for upsides. I let Bess’s love succor and maintain me, I attempt to make progress, I’ve moments after I chortle, I have fun the wins—and but the bottom reality of being irreparably broken stays. The struggles with respiratory stay. The persistent intrusive ideas about whether or not this factor, life, is price it, stay. They’re not questions remedy may also help with. They’re questions intrinsic to the harm.
With out these nerves between my neck and mouth and nostril, and with out a good skill to swallow, my lot is consistently preventing the mucus assaults. I really feel like a human mucus manufacturing facility. What’s the top of this? When is the top? Typically, I’m prepared for it.
Look, because you’re in all probability pondering it, and earlier than you level it out, let me say that I’m conscious that there’s worse struggling on this planet than hacking up mucus and feeling like I can’t breathe. There are displaced individuals in war-torn nations, and individuals who might have skilled horrible brutality or seen horrible brutality visited on their households or pals. There may be the savagery and prosecutable cruelty the Russian army is inflicting on and in Ukraine. Comparatively, there are individuals worse off than me who appear to seek out methods ahead in direction of significant lives. In some methods, my materials universe remains to be spectacular, and I’m blessed with love.
Napoleon Chagnon’s memoir Noble Savages: My Life Among Two Dangerous Tribes — the Yanomamo and the Anthropologists talks about what on a regular basis life among the many Yanomaö, a collection of native peoples and tribes then dwelling in Brazil and Venezuela, is like. Chagnon says he’s “not ashamed to confess that” when he first met the Yanomamö, “had there been a diplomatic means out, I might have ended my fieldwork then and there.” The bodily circumstances have been that robust. Chagnon writes: “think about the hygienic penalties of tenting for about three years in the identical small place with 2 hundred companions with out sewers, working water, or rubbish assortment, and also you get a way of what each day life is like among the many Yanomamö. And what it was like for a lot of human historical past, for that matter.” To Chagnon, the village smells of “decaying vegetations, canine feces, and rubbish.” Yanomamö males seem to spend so much of their lives with “strands of darkish inexperienced snot [dripping or hanging] from their nostrils” due to their fondness for snorting a hallucinogenic drug referred to as ebene. Males regularly have interaction in small-group warfare and an enormous proportion of grownup males die in struggle, by the hands of different people. An enormous proportion of grownup girls die in childbirth, and plenty of are kidnapped after which forcibly married to certainly one of their abductors or into their abductors’ group. And that’s regular life. Possibly that was regular life for many people in most of human historical past, as Chagnon notes. I’ve by no means spent a lot time fantasizing about dwelling in a previous time, as a result of life then was overwhelmingly filthy, principally impoverished, and there wasn’t entry to primary antibiotics, not to mention chemotherapy, radiation and medical trials. A future period? That I can and do think about. I additionally think about that I might’ve give up fieldwork even with out a diplomatic means out. Possibly not on the primary day, however as near it as I might get.
“Regular” is a difficult phrase meaning all kinds of conditions. Wherever we develop up is regular. Regular for me now means coping with the mucus and drowning sensations. I really feel current struggling keenly. Sufficient struggling makes an individual really feel lower than human, together with me. People can get used to a lot; can I get used to my issues? I’m not the primary to marvel, as Bess did: “How much suffering is too much?” Viktor Frankl wrote extensively about struggling and human life, most notably in Man’s Search for Meaning (a favourite ebook). “Yes to Life: Viktor Frankl survived the Holocaust and created a brand new psychology by which the seek for that means—not pleasure or energy—is mankind’s central motivational power,” by Samuel Kronen, is about Frankl, and it describes how “Life carries the potential for that means below any circumstance.” I purchase that argument, albeit with a heavy emphasis on the phrase “potential.” The hole between the potential and precise is commonly giant, and it’s as much as the person to seek out and create that means in life.
Frankl’s endurance and his obvious skill to not merely survive however to thrive is exemplary; I’m undecided how properly I’d do after discovering that “Aside from his youthful sister, who managed to flee the nation, everybody in his quick household, together with his pregnant spouse, Tilly, died within the Holocaust.” In Frankl’s model of psychotherapy, which he referred to as logotherapy, “One might even say that the that means of life is different individuals.” So how does one go on when the opposite people who find themselves most vital to you’re murdered? Frankl’s life and writings are his reply. Like Dan, he appears to have developed a shocking skill to go on and stay constructive within the face of adversity. As a lot as I like Frankl, I discover myself leaning away from this: “No quantity of anguish or adversity can really take away our humanity, he says. Being human precedes our capability to be productive, useful, and even mentally sound.” I wonder if being human is a binary factor or a matter of levels; I lean in direction of the latter, which you’ll be able to see in my remark about how sufficient struggling makes an individual really feel lower than human.
I’m not ready, or possibly keen, to maintain the positivity and meaningfulness of Frankl or Dan. Sooner or later, to my thoughts and temperament, it’s not price happening. However I can’t exactly demarcate level the place there’s an excessive amount of struggling or an excessive amount of privation, although I’ve thought-about many eventualities. That I’m nonetheless right here, proper now, signifies the current privations aren’t an excessive amount of. Not but. A lot has been taken from me, however I nonetheless have Bess’s love. I can nonetheless locomote. Speech is garbled however potential. Every single day I’m attempting to make a superb and generative day, and I remind myself that there are a lot of issues I can’t management, however, as each Frankl and the Stoics emphasize, I can management my angle.
Regardless of the mucus, I’ve some victories: I can swallow some meals and have gotten steadily higher at swallowing. Possibly a month in the past, my buddy and speech pathologist (in that order) Jessica Gregor helped train me to swallow once more. Swallowing with out a tongue is difficult. Do it unsuitable and no matter you swallow goes into your lungs, inflicting coughing and presumably worse. However when somebody with out a tongue, who hasn’t swallowed for 2 months, learns tips on how to swallow once more, the second of swallowing features a sense that one thing goes into the lungs, even when nothing is.
There’s a trick to swallowing after your tongue has been taken: you must tilt your head again, provoke the swallow, swallow strongly and intentionally with out hesitation, after which do a throat-clearing sound and movement. That throat-clearing sound and movement forces air up and out of the lungs, closing the epiglottis in a transfer referred to as a “glottal cease,” which successfully closes off the airway and makes the esophagus the one possibility for meals to journey by means of. If there’s any materials factor in the best way, like just lately swallowed meals slurry, then the air may even assist that substance be routed into the abdomen, not the lungs.
With Jessica, I swallowed some ice cream slurry: the Van Leeuwen’s honeycomb taste. We melted it and blended it with some additional milk, to skinny it. And, though I used to be intensely skeptical that this could end in a significant sensory expertise, there are style buds in the back of the throat and esophagus. So I might style ice cream. Since that evening I’ve tried a number of issues. Something acidic, like lentil-soup slurry with an excessive amount of lemon, doesn’t work properly but. Something salty, similar drawback. However savory meals work and so do candy ones. There’s a enjoyable bakery and wine store in Tempe referred to as Tracy Dempsey Originals that we’ve been going to. Tracy Dempsey makes spectacular ice cream flavors—significantly her cardamom with fig jam. It seems I can eat issues like cookies and brownies in the event that they’re blended with milk or espresso.
Tough, crumbly, and dry issues aren’t any good, however something that may be made right into a clean, fairly constant slurry, I ought to be capable of eat. All of a sudden I’m speaking with Bess about stopping by FnB (our favourite restaurant in Arizona, and conveniently down the road from us) to order meals and mix it. We tried that too quickly—I wasn’t prepared but—however will attempt once more. That’s the human wrestle: to fail, to be taught, and to attempt once more. The universe is huge, chilly, and detached, and it desires to eat you. However I’d prefer to eat too. And being given the possibility to take action once more, after I thought I might go the remainder of my life with out taste, is not any small factor.
The victories aren’t full. The mucus nonetheless interrupts consuming: something I swallow appears to get trapped in mucus. So I swallow some meals, and, after I’m performed, I’ve to hack up food-infused mucus. There’s no clear path, I assume, from mouth to abdomen with out traversing a mucus swamp. The mucus swamp appears to extend the drowning sensations from slurries, and the feeling that meals goes down the airway, even when it’s not. Jessica did a “Fluoroscopic Swallow Research,” which basically means taking an x-ray video of me swallowing, to see the place the swallowed substance goes. It confirmed that I’m not swallowing into my lungs, although each time I swallow I really feel like I is perhaps. That sensation, just like the drowning sensation from mucus accrual, is disconcerting, however what can I do about it? Little or no, it appears. Mucinex, suction, saline nebulizers and growing my water consumption does one thing, form of, however not sufficient. For nonetheless lengthy I dwell—and Bess has a superb lead on a medical trial, in addition to an essay within the works about how the medical trial course of truly works (and the way insane the method is)—the drowning sensation will probably be haunting me.
However I do get to style some ice cream once more, earlier than the top.
Should you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
See additionally: “How much suffering is too much?“