When you’re robust and things go wrong, recovery happens quickly: the hamstring aches for a few days, then returns to functionality. The broken arm is an annoyance, but the cast comes off and it’s not hard to hit the gym and build back strength. The cold or flu might linger, but it dissipates. I used to be robust and, like most robust people, I unconsciously assumed robustness as the natural state of my world. Now I’m not, and the painful premature slide from robustness to fragility is foregrounded every day. After my initial Oct. 20, 2022 surgery, I recovered relatively fast; sure, I woke up with a piece of my tongue gone, but I could swallow watery smoothies the night of. I rapidly got up and walked unaided. Though the surgery aftermath and recovery were uncomfortable, I could perform the bodily functions necessary for discharge from the hospital—namely, peeing. So, I peed the night of, which got marked in my medical chart, and the day after the surgery I got to go home. I achieved independence fast.

Back then I had a lot of physical margin for illness: I lifted weights, I didn’t eat much sugar, I used a Levels Health glucose monitor (rice is much worse for glucose levels than I’d realized). The surgery could have been much harder and thus the subsequent recovery harder, but it wasn’t and my baseline level of health made me better prepared than if I’d ignored nutrition and motion. I had some social margin, too: I was in a relationship with my now-wife, Bess,* who helped tremendously: it’s hard to do life alone, and it’s harder still when sick.

Bess was there when the news came down that the tumor showed bad features, like “perineural invasion” (PNI) and “extension through the base of the mouth into the geniohyoid,” and I got assigned radiation therapy to the head and neck. During the roughest stretch I was taking 10 – 15mg of Oxycodone every three hours, on top of gabapentin,** Tylenol, and ibuprofen. Yet I’d prepped for radiation, too, as best I could: I resumed going to the gym as soon as I could, and I ate as much as I could get down in order to try gaining weight.

During an education session about the radiation process, Dr. Patel, the radiation oncologist, emphasized the need to conscientiously comply with radiation mitigation strategies and avoid, if possible, hospitalization for radiation side effects. He said something interesting—well, he’s an interesting person who says many interesting things, but this one stood out—the people who wind up hospitalized and struggling are usually the ones who are alone. No one is watching and helping, and they consequently don’t have the strength or ability to mitigate the potentially devastating radiation side-effects. Having stumblingly endured radiation with help, I see how and why someone without help wouldn’t be able to do all that needs to be done. Apparently, there are a lot more of those people than I’d naively thought. The articles and books about the increasingly loneliness and disconnection of Americans are manifested in the healthcare system.

During radiation I suffered from many maladies, but not loneliness or lack of aid. Bess, for example, made me a steady diet of Kodiak Cakes and smoothies. The Kodiak Cakes were the unanticipated, relatively high-protein staple of my diet. Usually I cook, but Bess ensured that I ate even when the thought of food made me feel a range from “ennui” to “dread.” Thanks to Bess and my family, I had not only the physical robustness, but some social and financial robustness, too.

When you’re fragile, one thing going wrong cascades into other things going wrong. That first cancer surgery wasn’t pleasant, and I wouldn’t recommend it to friends, but it was successful, in that Dr. Hinni, the ENT who performed the surgery, got clean margins and removed lymph nodes (none cancerous) from the left side of my neck. The radiation series left me with a literally stiff neck and other weaknesses, but, as I wrote in “Life, swallowing, tasting, and speaking after a total glossectomy (meaning: I have no tongue)” the damage leaned cosmetic more than structural. I tried to recover from the radiation, and I did well enough to teach an English class that began the first week of February, 2023.

In Antifragile: Things That Gain From Disorder, Nassim Taleb claims that “Some things benefit from shocks; they thrive and grow when exposed to volatility, randomness, disorder, and stressors and love adventure, risk, and uncertainty. Yet, in spite of the ubiquity of the phenomenon, there is no word for the exact opposite of fragile.” He’s right in that “Some things benefit from shocks” (emphasis added) but, if the human body benefits from the shock of having part of one’s tongue removed, and then radiation therapy, I’m not aware of it and haven’t experienced any benefit. Some stressors, like the squat and deadlift, are good for the body. Others, like tongue removal or chemotherapy, are not, though they’re better than cancer. Taleb says that “Complex systems are full of interdependencies—hard to detect—and nonlinear responses.” Cancer likely qualifies as the sort of thing that creates a nonlinear, negative response. Friends and acquaintances have expressed shock and worry that I’m the one who got hit with squamous cell carcinoma (SCC) of the tongue: I have no risk factors and a bunch of relatively healthy habits.

After the recurrence and the “salvage surgery” that left me tongue-less, I’ve become fragile. Immediately after the surgery, I couldn’t walk unaided, because a huge piece of muscle and tissue had been removed from my left thigh to create the “flap” of tissue that inertly replaced my tongue. A fall would likely have been fatal. The last essay I wrote, “What in the hole is this? A medical mystery story,” is essentially about the dangerous medical cascades I’m prone to. Someone poor experiences a financial shock as a disaster someone with more money can withstand or even barely notice; someone sick experiences even a minor medical problem as a disaster, because, after a certain critical mass of illness, no setback is actually minor:

As of October 20, I’ve undergone a year of medical harassment / treatment, though I’m unlikely to undergo another. I’ve been conditioned by experience to always expect a new problem. Perhaps the most recent is Augmentin causing a fungal infection in a place where one really does not want a fungal infection.

The preceding paragraph also helps explain why travel is no fun. Friends have asked if I want to do a dream vacation. I see where they’re coming from, but until recently I was relentlessly exhausted by surgery, chemotherapy, and infection. I’m doing somewhat better, but I still feel on the verge of catastrophe. Weight is part of it: I’ve lost around 40 lbs and worry about starvation. That is not a joke. Most of my calories are injected into my peg tube, and I “eat” from pouches of Liquid Hope. The TSA won’t let Liquid Hope pouches through airport security theater, so I have to check them in a bag. If I show up somewhere and my bag—containing the food I have to eat, the syringes I have to use to inject it, and so forth—doesn’t, that’s an immediate crisis. I can’t buy peg-tube food in a grocery store. If I don’t have, or lose, medications like antibiotics when I need them, that’s a crisis. I don’t know what the next potential crisis might be, but I want to avoid it. Acquiring Covid on an airplane or in an airport could result in a crisis.

Crisis, disaster: those are always lurking in my mind, sometimes consciously and sometimes unconsciously, and everything I do or, more often, don’t do is controlled and informed by the disaster worry. The number of things I can do shrinks, and the number I can’t grows. I mourn what I could do in the past and can’t now, though I seek to emphasize the positive aspects of the here and now. Fragility means feeling like my body is betraying me, every day. It’s looking in the mirror and seeing a half-dead ghoul looking back. It’s the cruelty of disfiguration. It’s the choking on food. It’s the full body rash and my skin cracking and peeling from the petosemtamab infusions, it’s the cuts on my thumbs and heels that won’t heal properly. It’s the fear of catching a cold, because I already have so many problems with mucus. It’s the social isolation, “social isolation” being another term for “social fragility,” because speaking is now so hard that casual chat isn’t casual and subsequently doesn’t happen. The words coming out of my mouth trip over each other like drunks incoherently trying and failing to get out of a car successfully.

The sick really inhabit their own—our own—world. Beyond being isolating, it’s the world of missed connections. I read the David Brooks book How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen, and it describes the fragility of true, intimate connection and how you can miss a momentary something and inadvertently degrade the moment:

I realized that I have to work on my ability to spot the crucial conversational moments in real time. I have to learn how to ask the questions that will keep us in them, probing for understanding.

It’s easy to miss these moments in conversations with friends, and it’s almost impossible to force them. We can try to set up conditions for the crucial conversations, but truly having those conversations is unpredictable, like good ideas: good ideas sometimes arrive at the most unexpected moments, but the people who are actively seeking them out and trying to harvest them are more likely to find them. My ability to seize the promising conversational moments has been retarded, though not yet entirely eliminated. I’m still trying to have Brooks’ crucial conversations with friends, however much I sense the relentlessly missed connections. I say something that’s too garbled to be understood; my friend stops and asks for clarification; we never quite achieve the right rhythm. Brooks speaks of talking to a dinner partner who said that: “He’d be in the middle of an important meeting with someone and his mind was always going back to reconsider something that had already happened or leaping forward to think about something he had to do later in the day.” Too late, Brooks realizes:

That was an important confession! I should have stopped him to ask him how he had become aware that he had this weakness, had this flaw marred his relationships, how did he hope to address the problem?

The moment is lost to time. For me, fragility means so many of those moments are lost to time, or they never happen due to exhaustion, nausea, and the challenges of speaking at all. I try to compensate via writing, but the writing is still a compensation. Most people don’t like writing and can’t maintain relationships primarily through text. I have a few friends who are like me and can, but I recognize that that ability is rare and weird.

My life feels like it has, and I have, been reduced and reduced and reduced. One friend wrote to me that: “NO, SUFFERING DOES NOT MAKE YOU LESS HUMAN.” He’s probably right, and yet I waver in believing him. Suffering might be the human condition, the link that binds us, but in limiting the way I connect with other humans, it somehow makes me feel both far from everyone else and also further from myself. Maybe my friend is right and being human means being isolated by the unique experience of our own personal decline and mortality. We ultimately face it alone, together.

Still, it’d be nice to feel like the “together” part isn’t being degraded by my deficits. You miss something in the conversation, and that miss degrades the connection a little. The parallel to the body’s fragility is probably obvious, but, to make it explicit, fragility means that missing something might initiate a crisis that ruins your body altogether. It might mean dying. It means losing days and days to medical treatment. A single ER visit for a dislodged PEG tube, the replacement of which takes two minutes now that the tract is fully formed, still somehow eats up at least five hours of a day. That’s five hours I don’t have to spare, but at least the PEG tube replacement is a simple repair (I know: I sound like a bike in the shop). At what point is something beyond repair? At what point am I reaching the point of no return? Do you always know the tipping point? I don’t think I do, not now, but the final tipping point is close, and at some unknown, lurking point soon I’ll fall forever.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

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* She has her own Substack, too, per the link.

** Gabapentin dampens nerve response and consequently has the unfortunate side effect of dampening sexual ability and response to near non-existent, so it’s testament to the discomfort of radiation that I continued to take every dose on a fixed schedule.