Always Be Tending

Always be tending is a three-word statement that mirrors the trinity of what constitutes it: bodily function (anger about bodily function); work (or housework, specifically, or labor, generally); and money (and the lack thereof).

Tending is analogous to hustling. Both are simple yet unending acts that become complicated through their unendingness. To tend and to hustle is to work continuously from positions of precarity in attending to that which one is most without, whether health or money. I do not say “ability,” instead of “health,” because tending is more nuanced than that and does not always operate within the realms structured rhetorically by “disability,” “ability” and “differently-abled” and “person with a disability.” To tend is outside the realm of person-first disability language, because most of the mass of tending is the weight of work; not the weight of a rhetorical figure with a disability. Also because tending operates on multiple levels and is not always strictly about the physical capacities of a body. Sometimes it is about what a body with (or without) certain capacities looks like. Sometimes it is about when a body without capacities looks healthy. Sometimes it is about health.

Where care is most often thought of and defined as also a trinity, of “labor/work, affect/affections, ethics/politics” (Bellacasa 5), one could speak of tending similarly—even as I remain deeply unsure that tending is even analogous to care or care work; while deeply intertwined, I think it is more accurate to think of tending as situated alongside care, but something separate and distinct from it. Much in the same way one might say that hustling is about an urgent need for money and less about having room for critiquing late capitalism. But this trio is useful for opening different dimensions of tending, and so one could say: Tending is daily work, diligence (and anger and bravado) in that work, and the neurological structures that shape or contribute to these daily actions, thinking about them, and thinking about the possibilities for their continuation. By this latter instance I mean to include the effects and ethics of long term opioid use, chronic pain and the physiological changes it causes in terms of Central Nervous System (CNS) reorganization and grey matter loss that becomes equivalent to aging as well as, broadly, the bodily nature of a systemic illness that move into zones seemingly separate from those conveyed by the term, in my case, pancreas; although, appropriately enough, pancreas is from the Latin for all flesh. While this describes the materiality of the organ and its texture, it is a useful aptonym for always calling to mind the breadth of what tending (must) attend to.

Inasmuch as tending speaks simultaneously to what one tends to do, that is, what is habit forming, tending is also about the way that these neurological structures and the material and physical proximities generating them implicitly shape our un-thought-about actions; or what we do everyday and think of as the daily, and therefore as the not needing to be continually considered. By this I mean to include both the moments that I forget whether I have already taken my medications—and the pill cases that therefore become urgently necessary and the way that pill cases spread out around my house further shape the material reality of those of us who live here—as well as the moments when it becomes apparent that certain habits have material, socioeconomic and political underpinnings that cannot be thought of as separate from the actions themselves. This latter category includes the moments I walk through certain areas of Boston that tend to gather higher concentrations of drug users, particularly opioid users, and both my consumption of and my habit of carrying around with me a pill case of both daily and emergency strength painkillers takes on significantly different meaning. These moments also allow us, as any discussion of habits and what is habit forming must, to consider what interrupts habits: The visceral moments when I am next to people nodding out on public transportation, only feet away—and materially, physiologically, not much different from—the opioids in my own body.

But we must also tend to the visceral moments that are less easily explainable, that do not immediately make themselves apparent, that are upsetting. In the spring of 2017, Aaron Hernandez committed suicide while serving a prison sentence for a murder, although immediately after having been acquitted in a second suspected double homicide. Hernandez was a former New England Patriots football player who had been a constant presence on local radio for several years during the course of these trials as, essentially, the figure of speech Former New England Patriot Aaron Hernandez. Not an ardent football fan—although, prior to this point, I did appreciate the graffiti common around Boston of Free Brady—I gave no attention to this situation until the moment of his suicide. Because it was only in this moment that what was actually front and center, fully present, was Hernandez’s agency. Because it was only in this moment that what was front and center, fully present, was Hernandez’s agency?

Immediately after his suicide, a particular narrative emerged in media coverage: Would the state release his body to the family so that Hernandez’s brain might be sent to the Boston University Chronic Traumatic Encephelopathy Center? What would it mean about his actions if it was found that he suffered from a chronic neurological disease caused by the repeated head injuries of his entire, childhood-onward, football career? Alongside this narrative about traumatic brain injury and agency emerged several important legal and financial repercussions that could arise should evidence of CTE be found: would his convictions be thrown out? Would the NFL pay out his estate or even damages on top of that? And, most viscerally for me, was the question of whether he had committed suicide knowing that the NFL would only pay his estate in the event of his death, that his fiancé and child would never be supported as long as he was in prison.

For three days, I did little but read everything I could about Hernandez. And looked at images of him. In all of the most readily available photographs of his initial arrest and trial, Hernandez is shown in images that closely align with the conventions of Renaissance portraiture, from his Baroque facial expressions, emphasis placed on his torso instead of full-body shots, and the array of people around him but situated firmly in the background. It is how saints were painted during the moments marking their sainthood. These images only served to further intensify the hysterically visceral affect surrounding this situation and its media coverage.

And this visceral intensification also did little to assuage my feelings that, in fact, Hernandez’s death had nothing to do with me. I was not, am not still, a huge Patriots fan. I did not follow the trial. But the question of whether chronic and progressive brain changes caused by repeated physical experiences had contributed to a hyper-visual, immediately apparent action that carried with it legal, financial and familial consequences—and how much of which these consequences Hernandez could have, did, make choices about—can be said about many situations. In the case of both long-term opioid use and chronic pain, let alone the myriad other material experiences we have that carry unknowable or unapparent effects, when I think I am just (simply?) tending, what is it I am really doing?

*

The sometimes visual nature and the sometimes paradoxical visual nature of tending links it all the more deeply to hustling. Because the hustler is also a figure structured, first and foremost, by the material object of money; the socioeconomic condition of not having enough; the behavioral, affective and neurological effects of this condition; the visible, rhetorical and popular figure of the person who engages in hustling, which is to say, hustling is also about pride and bravado. The hustler is proud of their hustle and uses their bravado as a key strategy in a successful hustle.

Linking tending and hustling may seem somehow gratuitous. But it serves a key purpose here: to hustle is understandable. Whether you are a millennial with a side hustle or have been listening to hip hop for years, there is a figure of the hustler that exists. This figure is not neutral; it is not neutral that your visualization of hustle is a black man. But to allow for this, not without notice, is to allow for a tender gesture, an offer of understanding and compatibility: here, an analogy.

The tender is also a figure structured, first and foremost, by the material object of an illness; the socioeconomic condition of not having enough health; the behavioral, affective and neurological effects of this condition; the visible figure of a person who engages in tending and, through the actions made necessary by a lack of health as well as the effects of an illness, appears to have made it. That is, the tender may look like healthy. The tender may look healthier than you. The tender may or may not be proud of their appearance of health. The tender may or may not overemphasize this appearance, or this pride, and the appearance of health may or may not directly affect the nature of their tending. On the one hand, the tender may overemphasize an appearance of health through their use of clothing that accentuates a thin and muscular body when worn to a job interview. The tender can do so because of a weight loss of 25 pounds over the course of their illness and the way that a lack of fat makes one’s muscles stand out—and must do so in order to get the job. On the other hand, the tender may be at their most comfortable when engaged in a style termed invalid chic: When I am lying on my velveteen couch in a leotard and a favorite sweater with a heating pad between the two.

*

Through remaining with (and being) tender, we can also think more deeply about how tending may be alongside but separate from care or care work. A carer is one who gives care, who cares about, the affect of which—and the ethics of which—are structured by emotions like concern, worry, affection, love. Tender is both one who tends to, who is engaged in tending, but also always one who is experiencing tenderness; who feels physical pressures of biological, neurological, financial, gastrointestinal, familial, and professional structures on and within a body always in some amount of physical pain. Although the majority of our appointments are spent sitting and talking in his office, my doctor always spends several minutes first physically examining me. These examinations are recorded in his dictated notes as what does and does not seem to cause pain: negative by auscultation, negative by palpitation, moderate upper right quadrant tenderness with mild guarding. This variety of physical actions—auscultation, palpitation, prodding, tapping, guarding, also listening, applying, engaging—are ways of describing the moving through the world of the tender body, or the body of the tender.

Tender is both the subject position as well as the subjective position. Tenderness is always felt under applications of pressure, or to the touch. At the same time, applying is something you both do to pressure (apply pressure) as well as to yourself (applied herself diligently). Meanwhile, prodding, whether done to assess pain or to goad someone into telling you an answer, is always done to gather information. The information garnered through prodding is of value to both parties: the person under pressure learns what it is that produces a response within themselves.

Tender is also about moments when experiences, ideas and invisible materialities are made physically present: as recorded notes, and in the legal sense of tender as a form of payment or to “formally offer a plea or evidence, or money, to discharge a debt.” Tender as an object of the legal system draws a connection between the importance of physical evidence and the body under pressure within a spatialized area of power, which is jurisdiction. Being tender, needing tender, and operating in moments of tenderness all the more links tending to hustling. Both tending and hustling are simultaneously affective structures and physical, financial, objects with legal implications. Inasmuch as tender can be a form of, or offer of evidence, one can ask: what is it that tender proves? What does tender provide information about, whether about the person experiencing tenderness or the one, or the structure, producing it?

Tenderly is a quality of care situated in movement: to complete an action tenderly. It is to move carefully, probably slowly, out of love and fear. To move tenderly within one’s own body is to maintain careful, diligent, awareness of all the things that might be about to hurt. Almost everything I do, the way I schedule my days, what I choose to eat, and so on, I do out of fear of pain. At the same time, although tender might seem to assume an inherently fragile quality, it is more so a quality of any and all flesh. We talk about tenderness most in relation to muscle aches and bruises, but we also talk about meat this way. To tenderize opens a space in which tenderness is desirable. Perhaps part of this desirability comes from the fact that tenderness is always relational, always between two things: pressure has to come from somewhere.

*

It has been found, after several months, that Hernandez did in fact have chronic traumatic encephalopathy. The disease progression was severe: he is said to have had stage 3 CTE, out of a 4-stage progression. I make drawings of the images that are released of slides of his brain. These images would have been unintelligible to those painting Renaissance saints; they are about as unintelligible now as they would have been then yet have taken on such importance and centrality to the ongoing media coverage of this announcement. One journalist asks whether “those brown spots and perforations in his brain [are] signs of every single hit he took.” This is not a question that it is really possible to answer. Are these images like NASA images, hand colored in the absence of color? How much rests on these brown spots, in these perforations? The decisions of courts, of the NFL? But money doesn’t have a heart, let alone the ability to understand photographs that are images of a brain.

On Friday, I’ll go to the hospital to swallow a camera. This camera will be swallowed while it is flashing; each flash will light a photograph and it will ultimately send thousands of photos to a monitor I’ll be wearing that will string them together, turning my intestines into a 7 hour, 6 minute video. This capsule endoscopy comes in a long string of holiday-related procedures: not only is the fasting I’ll have to do appropriate for its taking place on Yom Kippur, but my partner will be taking me to the hospital on our five-year anniversary.

Later, leaving the hospital, I will be walking home carrying groceries. A bag of apples next to a water bottle, a deep crinkle and a slosh, provides a good sense of what it must have been like for the camera. I will not see the video it creates, and this is the way I will understand what it was made up of.

Asking money, the courts, the NFL, to understand these images is yet another instance in the recent history of extending legal jurisdiction further and further into the neurological. Judges have always had to decide what it is that makes people commit the acts they do and what repercussions are therefore appropriate. The only real difference is that, now, we can—and must—talk about these determinations in terms of neuroscience. It’s no longer about the mind of a killer, the psychology, but about the brain of a killer. Is Aaron Hernandez responsible for his actions—able to be held responsible—or a person with a brain disease? Who was responsible for his brain? What can informed consent be in a field shaped by emerging science?

I also want to take a moment to notice the language and metaphors we rely on in these discussions: a field is an area of information shaped by science, but it is also where the mass of that information comes together (and apart). A court is always an area populated by teams, only sometimes in a game and sometimes in judgment. Tender is a subject position, a subjective position, but also always a form or offer of something physical, valuable, something that can re-balance the scales; evidence.

The idea that what is neurological is within the jurisdiction of courts is also key to understanding how different opioids are from other drugs: simply being in possession of opioids does not determine illegality of use, unlike cocaine or amphetamine, for example, where there is no way to be in possession of those substances legally. It is determinations, made in written laws and CDC guidelines and hospital policies, about types of usage set in time that differentiate legal from illegal usage. In other words, it is only because I take my medications at certain times—neither too frequently nor infrequently, as the latter can be taken as evidence that I’m instead re-distributing my medications—that makes my usage legal. Is timing alone enough to make a determination that someone’s use has become illegal? This says nothing of feeling. And how is it that addiction to an otherwise or occasionally legal substance should be illegal? All opioids, all relationships to opioids, are substantial. Does the CDC, the legislature, take into account the neurology of chronic pain, too? Whose pain is legal? “A man who is warm cannot understand a man who is cold.”

How does the informed consent Aaron Hernandez may or may not have been able to give compare to my decision (or that of anyone else right now) to start taking opioids 25 years into the opioid epidemic? Should I know better? What is there to know? Will taking opioids for the rest of my life be better or worse than being in pain? What does it say of me that, in some ways, what this question comes down to is: is losing my mind worth it? These are impossible and mostly inaccurate questions, though, because of the unpredictable (yet assumed) qualities of tenderness: We are most able to move tenderly, carefully, with attention, (only) because we think we won’t have to forever. We also often think that the best thing for sore muscles is to keep working out; how it’s always better not the next day, but the day after.

*

In those brown spots and perforations, I see enormous tenderness. Aaron Hernandez had only one documented concussion during his entire college and professional career; it is being found that what correlates more strongly to CTE progression is not number of concussions, but length of play. NFL players on the starting line run into each other with the force of about 20G, which is not unlike driving a car at 80 m.p.h. into a brick wall, only it happens about 1,000 times throughout the year for an NFL player. Remembering being at the bedside of a player who was suffering from amnesia following a concussion, NFL agent Leo Steinberg remarked: “It terrified me to see how tender the bond between sentient consciousness and potential dementia and confusion was.” (“League of Denial”). Cynically, I see the capitalism and protection from liability inherent in his “potential.” Perhaps more optimistically, I think of a tender bond: one that holds the potential for flexibility, for give and take; glue that is not quite set; a tendon.

This statement is heard in the PBS Frontline documentary “League of Denial,” based on a book of the same name, which details over 20 years of denials and faulty science commissioned by the NFL to ostensibly look into “the concussion problem.” Earlier in the film, the former Steelers star Mike Webster is shown near the end of his life, during a period of profound depression and erratic behavior. Confused, tired and unable to answer the question put to him—and not really able to explain his difficulty—he stops, repeats that he’s so tired, and reaches off-screen for a cup of coffee. There is so much of all of us in that gesture.

                        ***

I recently found a scrap of paper in a notebook with a phrase on it that I used to think of often: “The impossibility of drowning while looking at a picture of water.” In the eight years since the first time I thought this, the phrase has become more like a mindfulness exercise then a way to avoid actual drowning. The work of being a daily survivor–the way that after “someone dies: frenzied construction of the future…futuremania” begins–has slowed, maybe stopped altogether. It’s not that I’m not still dying, it’s that I’m definitely not dead, not now. Something altogether softer has replaced the frenzied work not only of future construction, but past reconstruction (or the search for why I got sick in the first place, still unanswered). Tenderness has set in. Or, if “Shalt thou feed on Death that feeds on men/Death, once dead, there’s no more dying then,” let’s say I’ve been fed.

I’m not alone in the setting in of tenderness. For many in chronic illness, after a while “The wonder of having a reprieve lessens. The excitement of dramatic improvement fades. The imminence of death gives way to mundane pursuits.” (Charmaz 249). After how long? Is eight years reasonable?

It’s not that I was wrong before, not at all. But this was inevitably what was going to happen. Is this what acceptance feels like? Maybe. If so, it is indeed mundane. Even when my head feels empty or filled only with to do lists or I think I’ll never write anything worthwhile again, you can bet I can still tell you exactly what recipe I made the day before (two cups of flour, a half teaspoon of salt, eight ounces of cream cheese, two sticks of butter; a double batch of rugelach dough). This mundaneness is the feeling of the about to  in being about to die having lengthened or simply recceeded. It’s a bit boring, to be honest. Every once in a while (to make it less boring?) I think: I’m eight years into an average fifteen year post-diagnosis survival rate. And then I think: No.

Every crisis memoir was written before and ends before this boredom sets in. Where is the book by a sixty year old woman who’s been sick for forty years? Does that person just stop mentioning it? I’m forgetting, of course, that it won’t be like this forever. Later, sometime, I’ll reread this and think how lucky, also stupid, I was to have been bored.

Is it acceptance or some shallow valley, which I just mistyped as value, between the peaks of PTSD? After all, I had an illness that could have killed me and then it stayed. I’m just trying to get on with my life now, have been, but will this come back to haunt me? Almost definitely.

*

I may have given up on reconstructions of the past, but I recently agreed to undergo genetic testing, looking for markers of hereditary pancreatic disease and predisposition therein. The force of my excitement has been surprising. I thought I didn’t care about the why anymore. But the very thought of sitting in my doctor’s office being told I have this condition because of my genes–that no matter how surprising it was when it happened, how it made no sense, it was in fact always going to happen–is enough to make me cry. In reality I will find out while standing on the front steps of my house–my own fault, I could have waited till I got inside–and I will cry, as soon as I make it to the front door.

A slight worry eventually begins to interrupt my excitement. In answering this worry, I do what I always do, explaining it over and over, envision explaining it to others: When I first got sick, they could look for two, perhaps four, genetic markers. Now, eight years later, there’s a new program in which they’ll look for thirteen markers. (On top of technological advancement, wonder, this also simply makes me feel old). In addition to hereditary pancreatitis (unlikely in my case, I think, as nothing like this runs in my family), many of the markers are related to poor regulation of a group of enzymes, trypsin, which breaks down protein during digestion in the small intestine, sent there from the pancreas. But if you are unable to regulate trypsin, it can happen that the enzyme stays within and becomes activated in the pancreas, beginning to digest the organ itself. This misplaced digestion is the essence of pancreatitis.

In a precision medicine approach, the program will look at my genetic information in conjunction with detailed personal and family histories and in relation to a database of information–genetic, diagnostic, prognostic–of other people with complex pancreatic disease. What will be delivered in the end will be not just the genetic test results, but an overall targeted treatment plan. And here appears my worry: In genetic testing for the common BRCA1 and BRCA2 mutations related to breast cancer, and lesser known ones like CTH testing marking hereditary stomach cancer, prophylactic removal of organs is recommended in certain cases, whether mastectomy, gastrectomy, and so on. For years, I’ve joked that I’m first in line for a bionic pancreas. What if this is no longer a joke, or even much of a choice?

*

Just because something softer has taken hold doesn’t mean it isn’t hard or heavy. If work is a frenzy, maintenance–which tending undeniably is–is a drag. And like any form of friction, it is drag partly because of what it’s being dragged over: pain, probably, knowledge of my own death, etc., but also, increasingly, my own brain. My own brain, which is not at all that brain it was when I first got sick. For one, my brain no longer periodically receives alcohol, marijuana or even much second hand smoke. It does receive opioids, also more water and probably less sugar. It gets a multivitamin and a vitamin D. It also receives unending signals of pain. When I say I have pancreatic nerve damage, this is as much about my pancreas as it is about my nerves, which is my central nervous system, which is my brain. I have a neurological disorder and this fact, on top of the also real degenerative pancreatic disease I have, is shaping my everyday reality. My brain is not the same as it was. Just think about that, for a second. My actual fucking brain. It’s like a spy thriller, where there’s a mole within the spy organization. I am thinking something has changed about my brain with my own changed brain. Although it is often portrayed in a single-sided way, neuroplasticity is not in and of itself a positive force; it’s a neutral fact of brain tissue that has capacity for positive change–learning, recovery from depression–and negative, like the fact that chronic pain causes grey matter (tissue) loss equivalent to aging.

How much change should constitute a brain injury? I have never had an actual traumatic brain injury or concussion. But my brain has changed in a way that is not, exactly, good for it, due to causes far outside anything constituting “my control.” Who does it help to think of myself as brain injured or damaged? Probably me, if it encourages me to be more understanding of occasional lapses in memory and the fact that I don’t write a novel every single day. But also not me, because in many ways, this is the latest in a long string of explanations and pseudo-differential diagnosis which may be interesting in the moment but which only ever serve to mask the central fact that I have a pancreatic disease, maybe for a reason and maybe for no reason, and no explanation I come up with myself will be a cure or affect my prognosis.

However, without treating it as either positive or negative, my brain has been physically changed by this illness and that change (or changes) is now having its own effects mostly at the level of my daily life, which tends to add up. This change or changes, hereinafter referred to as “my neuroplasticity,” is further affected by neurologically active substances like opioids, taken on a regular daily basis. Will I be able to see the forest for the trees, as a tree?

How, exactly, is it different now? In the past month or two, I tried to take picture of my iPad with my phone instead of taking a screenshot, even though I had just been taking screenshots; I couldn’t remember what you call someone from Iceland, nor the term “focus group,” nor the name of the movie where Klaus Kinski goes up the Amazon (in a manner of speaking); I said “earball,” thought “basketball chips” instead of “potato chips,” almost boy with a “w” instead of a “y,” and did spell dollar “dolor,” (a beautiful mistake, that last one). I almost licked the letter, not the envelope, after which I stopped keeping track.

Before, I would have viewed competency as a core personal character trait. Now, I’m more likely to talk about my bad memory. I don’t think I’m stupid. Just tired. Maybe the softness, the tenderness, that has taken hold or replaced what was there before, is just the feeling of my brain turning to mush. How much of these differences, which ultimately is the difference between thinking clearly and feeling tired, is attributable to changes to my brain and how much to external circumstances? Are these ever two different things?

*

Our cat is missing the tip of one ear, from some unknown accident during her feral year or perhaps as a marker of having been spayed, though she was having kittens when she was trapped, so probably not the latter. Her name is Peggy, given to her at the shelter. We used to call my pancreas Peggy, so now when I have extreme pain I picture Peggy (the cat) curled up in my stomach. “In mourning (in this kind of mourning, which is mine) a radical and new domestication of death.” Though I think Peggy is too domestic for Barthes; it was only Derrida who wrote about his cat.

How much normalcy should domestication entail? And why is it embedded here in the first place? Lately, if all of the time I’m imagining, I’ve been imagining a more and more normal future. I haven’t been hospitalized in over a year. I’m married; we’re thinking of buying a house. I’ll have my genetic testing done the same week we throw a big wedding party.

It was always going to become domestic. There is simply too much work involved for it not to, and all we can call this work is housework: cooking, eating carefully, grocery shopping, the negotiation and payment of medical bills, the arrangement of health insurance, the scheduling of appointments. How is this any different from the housework of able bodied people? I can never stop. Everything I do, I do so that I do not die as quickly or as soon. This is the same reason hustling is not the same as working: one has less choice, more desperation.

Death was always going to become domestic, because tending is constant and mostly at home. And I say domestic and not “everyday” or “mundane” because domestic holds multiplicities in a way that everyday or daily fail to. It holds the thing doing the domesticating and the thing becoming domesticated, though both are benefitting and both are engaged in each of these actions alternately or simultaneously. Domestication is removed from the temporal normativity of “everyday.” It holds open space for the feeling that tending, illness, “happens very quickly and always seems like the longest time.” And in becoming domesticated or in domesticating, where one is always met with another, death is met with work, a very human answer to entropy.

 *

Even when looking specifically at neuronal changes, each can still look also like an external circumstance. Although it was commonly held that chronic pain causes a grey matter loss, recent research is now suggesting that while the brain absolutely changes during pain, these changes only look like loss but do not strictly involve decreases in number of neurons. This view has been supported by the fact that neurodegeneration, the loss of neurons and tissue, is irreversible, yet the changes of chronic pain can be reversed after effective treatment. Most of the changes seen take place within or effect the medial prefrontal cortex (mPFC), an area responsible for or contributing to memory, decision making, executive control, error detection and learning. Or, see above list of recent errors.

Interestingly, this list of experiential changes I’m attributing to the neuroplasticity of chronic pain closely matches those frequently listed as effects of chemotherapy, in a condition cancer survivors usually refer to as “chemo brain.” Or, if you’re a major cancer treating institution in the Boston area, it’s one word: chemobrain. How far beyond the usual rhetoric of “this is your brain on,” or the popular neuroscience sentence usually announcing new research, wherein the love or hate or disgust “center” has been found “in” the brain. No, this is beyond the construct of singular emotions being produced or substances temporarily effecting the brain. This is one word, marking a brain no longer singular, whole or alone. Now it’s a chemobrain–together forever? What substance has become one with the brain in painbrain? It’s a trick question, because eventually in chronic pain, your brain sends signals of pains as much as it receives them. Even if it started as two different things, it isn’t now.

*

There were no corridors, no hospital gowns or exam rooms. I heard a package being delivered, went downstairs and got it. I sat at my desk and had a thirty minute conversation with a genetic counselor named Sonja who took my family history and explained the test itself, although not in too simple a way as it sounded to her like “you have some medical background.” Yes, I said, some. Two days later, I ran a cotton swab along the insides of both cheeks, ten times each as per the package instructions, stuck it in a test tube and put it in the mail. In two weeks, my doctor will receive a ten page report with the results. This is the whole of my experience of genetic testing: a phone meeting at a white desk, a rainy walk to the post office.

On average, Sonja tells me, the lab has been finding two to three different mutations in people with chronic pancreatic disease. This makes it more difficult to determine hereditary patterns, because no singular mutation would likely have been enough to cause disease, only all three in concert with “unknown environmental factors.” This makes planning for the future both harder and easier, as it is definitely not a reason to not have a child, but nor does it provide a complete sense of safety. The number of probable mutations and factors also opens a trapdoor within the experience of an impossible future–where everything already feels like it so easily could not have been–the door of “if I hadn’t.” Because what of those unknown environmental factors? If I hadn’t ever drank, if I had always eaten a low fat diet and drunk plenty of water, if I had never smoked a cigarette and always taken a multivitamin? But what is the answer to any of these questions worth now?

*

As much as it feels death has come to be domesticated, and as much as my brain feels full of holes, the holes of misplaced words and forgotten titles, this was also always going to happen–not just because of the deeper setting in of long-term illness, but because of the simple fact of getting older. I have a fleshy adult body now, one that no longer loses weight in an instant and which is clothed alternately in office appropriate button downs and the holey denim jacket and sweaters I’ve had for over a decade. I’ve started to have conversations about things like babies and mortgages with friends like the person I’ve known for ten years who I once watched open a beer with one hand without stopping his drum playing during a show, or the person I used to live, when there were four or five of us in the apartment where it’s now just my husband and I, who I listened to watching endless episodes of The X-Files between  video-editing gigs and who yesterday asked if I knew what the schools are like in the city we’re considering moving to. This is all the normal part. And I know death is here for more than just myself. It’s here for the person with untreated clinical depression and suicidal ideation, it’s here for the people who have lost parents in recent years, and it’s here for all of us who know someone who has died or nearly died because of a drug overdose within the past few years.

But sometimes I feel so tired I think I’ll just die. And I think this is the core of the ontology of feeling worn out, the depth below my boredom, the feeling that forces or stems from the endlessness of my tending. I am living in the after all: What was once a “having had,” as in having had a singular illness, has become something much longer. An after all that. And after all that, I’m tired. The fundamental feeling of survivorship is exhaustion.

*

What should the goal be of managing this exhaustion, and the brain changes accompanying or generating it? And what should management look like? What was normal before or what should be normal? It feels like the only two acceptable options are either a radical embrace of changes and allowance for all differences from before, even those with negative effects, or radical rejection (almost wrote regeneration) and undertaking of some kind of intensive brain training to reverse all changes. Neither is really acceptable to me. Nor even realistic. Because maybe chemobrain is the most accurate way to put it: You cannot separate the brain from anything. Certainly not from itself.

*

They used to think that humans had bodies like any other machine: Put gas in, produce a finite amount of movement directly and only tied to amount of gas. Now, we know there are many more factors: How much gas you think you have left, how much it costs you, how much farther you think you have to go, what it felt like last time, how much you want to get there. What we think about amounts. And that gas itself is no longer thought to be a simple physical matter of how much oxygen your heart can pump at its max and how well your muscles can use that oxygen. Mental fatigue matters as much to endurance ability, if not more, than physical limits.  For decades, physiologists have searched for the central governor: that is, the single brain structure that receives information from the body, from muscles and lungs and cells, during endurance exercise, and which in turn dictates the levels at which those muscles function, and most importantly, the point at which people stop. While no single structure has been found, the existing body of research has pointed to a key aspect of this relationship: It is not physical muscle failure that most frequently makes people stop. Although the brain is receiving signals about effort level and energy expenditure from muscles, the brain is not receiving these signals in isolation. It has already made a determination about the level of effort it can expect perform at, based on previous experiences, environmental conditions, how much you slept last night, and so on, and it is constantly comparing the incoming signals to this anticipated level of effort. And so when the brain receives signals that exceed the effort level it anticipated, you slow down; it feels hard. Eventually, the brain determines when you stop. It may seem like a simple statement–that when we feel tired, we stop–but it’s taken physiologists decades to prove. Perhaps because it’s simplicity is confounding: There are so many different ways to feel tired.

Always be tending is a three word statement that mirrors the trinity of what constitutes it: work (or physical effort), anger (or mental, or neurological, perception of effort and anger and exhaustion at this perceived effort), and money, the external manifestation of resources represented by combined physical and mental effort. It is handy for naming in more detail what I have always said, been saying: All of the time, I work. It’s always the same and always changing, the longest and shortest times. It’s my life.

______

Maia Dolphin-Krute is a writer and artist based in Boston and the author of three previous books, including Ghostbodies: Towards a new theory of invalidism (Intellect, 2017), Visceral (punctum books, 2017) and Opioids: Addiction, Narrative, Freedom (punctum books, 2018). More information on these and other projects can be found at www.ghostbodies.com.