I think of Susan Sontag when I’m in the bathroom. The mirror is high enough that I have to tiptoe to see my lower belly, which is where the cannula goes; the river mouth of my insulin pump, that has kept me alive for the wondrously long time of exactly three days. I need to change it now, to rip it out of my left side and shoot a new one into my right; every three days there’s a new cartridge, a new tube, a new cannula, a new spot in my abdomen that takes the hit. And when the needle makes its way into me and leaves a hole, and when the tube clicks and the slow stream of insulin is forced inside, I think of Susan. I think of Susan and her essay, “Illness as Metaphor”; I think of how she describes illness as “ the night-side of life, a more onerous citizenship ” . The kingdom of the well, the realm of the sick: a double passport situation. And sometimes, unfortunately, we’re obliged, at least for a while, to travel to the underworld and identify ourselves as citizens of that “other” place. Say, then: what if that other place came to you? What if you had to live there? It’s tricky to talk about chronicity in illness, because it’s not a generalized, shared human experience. Almost all of us can revel in our feelings of love, longing, loneliness; we can wonder at the natural world and share in our curiosity for it. We can whisper about our fear of death. But how can someone with rheumatoid arthritis explain to you what it is to live in constant, searing joint pain? My mother cannot clap: her hands, now deformed, cannot be straightened enough to be put together. I don’t know how that feels. Chronicity is tricky.

Every single waking moment of my life I’m thinking about my glucose levels. It’s an open tab on the browser of my brain, forever. It doesn’t rest. Even my sleep is thin, vaporous, like a white sheet caught in a breeze; my ears are primed and alert for the beeping of my glucose monitor, which would mean a drop in my sugar levels; I’d need to get up quickly and drink some orange juice or take a glucose pill. If I don’t, sleep can turn into a coma. I sleep with my insulin pump connected to my body; the tube is only 40 cm long, so there’s a lot of tugging and tangling around. The first thing I do when I wake up is inject insulin, because my metabolism, like everybody else’s, is waking up too, which includes secreting glucocorticoids: emphasis on gluco. This is why breakfast is generally not recommended for diabetics, especially the classic and insidious high-sugary ones, with juices and pancakes and cereal. Here comes chronicity again: I analyze every single thing I put in my mouth, because I need to know how many carbohydrates it has. I benefit immensely from planning my days, from knowing exactly what and when I’m eating; the when is crucial too. My insulin pump is programmed, by me and my endocrinologist, based on the time of day and the number of insulin units needed to compensate for the grams of carbohydrate I’m taking in . I need less insulin at noon, my ratio is higher in the evening. My body changes every hour, my mind does too; my emotional state will impact my glucose levels. Long hours of work mean more insulin. Have I woken up too early? More insulin. Am I stressed this week? That’s cortisol, that’s a glucocorticoid: more insulin. The inverse is true too: what if I’m suddenly scared or taken aback? My mother calls me, her pain is worse; my friend argues with me; my partner leaves me: panicking makes my glucose levels drop. An overthinking brain uses up too much fuel: cut the insulin, please. These ups and downs happen all the time, often on top of each other, simultaneously. That’s chronicity. Our organisms are in constant communication with our environment and our fellow human beings: if your organism happens to be chronically ill, you’re going to have to add that factor to absolutely everything.

That makes me think of Susan again. Am I a permanent resident of sick-city? Do I even have a “ healthy ” passport anymore? Can I cross the border? It doesn’t seem like I can. But then again, Susan, I’m also immediately suspicious of binary responses to questions: you’re either healthy or sick, sick for a time, then back to healthy? I like Lina Meruane’s approach better: she’s a brilliant Chilean author who also happens to be diabetic, and she talks about illness as “normality”. She turns the binary to a spectrum, and builds a huge space for all the little shades of grey to live in. There are degrees of illness, degrees of health. One traverses the spectrum constantly; one doesn’t just stand around a pole forever. I’m healthier than a lot of people I know, in a lot of ways. You can be emotionally healthier, for example. Would you rather a toxic, chronic marriage or an insulin pump? Both can kill you. Comparisons like this are silly, which is exactly my point; illness, health and human beings are extremely complex and varied, very difficult to categorize. There’s a lot of normality in my diabetes. If I look at it that way, it helps me communicate and connect with other people’s varying degrees of health and sickness. It opens up a space; it allows me to identify as something other than just “chronically ill”.

And then again, these are just words.

And then again, the way we speak to ourselves is important. The way we narrate the situations we’re in ends up changing them, and us. We attach meanings to reality, and reality is transformed accordingly. So hey, use your words but use them wisely.

Shame is the capacity to suffer under the gaze of the other. The other can be anyone, even oneself; we’re perfectly able to feel wounded by our own perceptions. There’s also a certain pride in shame—as proof of moral rectitude, of earnestness, or of competence. A patient learns that he will eventually go blind; it takes a year for him to confess this news to his family. He feels ashamed, and at the same time, he feels proud to suffer in silence. Shared emotion brings relief to the afflicted, yet it propagates his suffering; and by what right do I pass on my pain to my loved ones?

I think about this on a park bench, with a bottle of pineapple juice on one hand and no intention of calling my family. Not wanting to propagate my suffering is an excuse; if I die, my family’s pain will be far greater.

It’s the loser’s shame, then. If I pass out, I lose. Who am I if I can’t keep my blood sugar under control? You shouldn’t have eaten that bowl of ramen. It’s your responsibility. There’s this dog lying on a patch of grass in front of me, and he’s still yawning, and I desperately want to pet it. I want to tend to a garden. I haven’t been able to get out of the city yet; I’d love to go for a hike, to lose myself on some trail, to be part of a nature-driven epiphany that makes me understand how the world works and calms me down and makes me accepting of my illness, turns me into a placid, kind-eyed monk.

But I’m sitting on this bench and I can’t feel my legs, I’m sweating and panting and I can barely see. How am I supposed to play cool independent adventurer in the woods? I hear there are bears. I picture a bear yawning, and I hoist my two-liter bottle of juice to take another swig.

An illness is also a healing balm, an unguent—especially if it is socially accepted. It serves as fertile ground; it mothers your identity; it bears fruit and takes root. One benefits immensely from one’s illness; indeed, some are so eager to have one that they craft their own. They build slowly, with care. They decorate. They perform. To be ill is to be a victim, and that notion proves delightfully relaxing. Guilt is drawn out of you and replaced by a certain calmness that feels as protective as it feels alienating.

My diabetes is my greatest, most beloved excuse. It never fails. My diabetes removes me from the equation, cancels me out. My diabetes drops me inside a limbo, a liminal space. Why do I call it mine? It punishes and rewards me. It’s my biggest bet against shame; whenever the dreaded feeling bubbles up, I can use my glucose levels to run and hide, to defend myself, to set up a smokescreen.

It’s part of the intricate fabric of my body-mind, perhaps even of my soul. Yet there was a time, nebulous and distant, when I was not diabetic. I barely remember it. Was that truly me back then? Have I been two different people? I’d feel naked without my glucose monitor and my insulin pump. Every shift within my mind, every movement of my body, every lighting up of every neuron affects my illness, and my illness, in turn, influences every cell that thinks and feels. I cannot exist separately from my hypoglycemia.

Even worse so: will I ever be able to exist without shame? Shame precedes even my autoimmunity; shame has always been there. If everything’s interconnected, then I’m forced to admit that shame played a defining role in the development of my illness. It’s also playing a role in my losing consciousness; it gives and takes away.

I drink and stare at the dog. I think I’d like him to be the last thing I see. It’s a good final image. But then… what if I’m exaggerating? Maybe this is nothing and I’m making a complete fool of myself for believing I’m about to drop dead and miss out on all the beauty of life—oh, the tragedy!—and maybe this yawning dog is just a dog and not my last impression of the world and the epitome of tender simplicity.

Those who are ashamed are very good at being victims, but they will also try their best to be caregivers. Helping another wounded soul proves I’m not quite so miserable myself. Service to others is a weapon I can wield; to fight against the meaninglessness of my existence and to show I have a right to be here. My diabetes grants me the people’s pity, and unlocks a new perspective, that of the chronically ill: a vantage point to which the majority have no access. Illness touches us all, just as life does; yet autoimmunity and degenerative ailments, inevitable and relentless, are not, fortunately, a shared experience for our species. This means that there are certain things, certain feelings or ways of coping, that only us, the permanently sick, can understand. Cold comfort, I know. But to carry the bodily wisdom of a chronic ailment, to feel it, deeply and daily, carving and scarring, should also make me capable of great empathy, of great compassion.

It does not. I’d be a wonderful caregiver if I wasn’t wholly corrupted by the urge, the desperate desire to exist solely within the gaze of others. The image in their minds is more powerful than the present moment in which I live, and stronger than the reality I could build for myself. Shame is the guiding factor in all this; it turns real people into members of an audience, and one cannot fail in front of an audience. One cannot show oneself, one needs to win approval. To really care for someone includes, necessarily, that you be vulnerable and open, genuine and honest. If what I want is for others to perceive me as a caregiver, then I’ll never actually become one.

Once again, the problem lies in my inability to step outside myself.

Web image by Riley Revell 

Narrative

Isles

José Luis Marín Aznárez 05.11.26

Illness, emotion, story, and the interconnectedness of it all; a meditation on a park bench, on the verge of death

Susan Sontag has said, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick.” Author Lina Meruane challenges the idea that people with illnesses are necessarily separated into a different kingdom than those who are not sick, asserting instead that illness can be part of anyone’s normality. She makes this case through her novel, Nervous System. The novel tells the stories of four family members and a boyfriend who, at one time or another, develop a serious illness or help take care of one of the others with a serious illness: it’s all illness, it’s all the time, it’s normal. We talk with Dr. Meruane about her idea of illness as normality as she presented it in the novel, and about how its atypical structure and its evocative and memorable prose contribute to the stories told and the ideas offered.

Co-host

Daniel Albrent

Source
Nervous System by Lina Meruane, translated by Meghan McDowell, Graywolf Press, 2021.

Links
–Lina Meruane’s bio
–Russell Teagarden’s blog piece about the novel, Nervous System, and his blog piece about the MRI scene in the novel.
–Russell Teagarden’s blog piece about Lina Meruane’s novel, Seeing Red.
–Video conversation between Lina Meruane and Meghan McDowell about Nervous System.
–Interview with Lina Meruane in LALT magazine about Nervous System.

A big thanks to Lina Meruane for sharing her thoughts on illness as normality and her writing processes.

The Clinic and the Person is a podcast developed by our editor Russell Teagarden to summon or quicken the attention of health care professionals, their educators, researchers and others to the interests and plights of people with specific health problems aided through knowledge and perspectives the humanities provide.

Web image by Medhum.org

We feature James Dickey’s poem, Diabetes, with our guest, the renowned physician-poet Dr. Jack Coulehan. We discuss insights the poem offers about the trajectory of type 2 diabetes from the time of symptom onset until the time a balance is achieved between maximum compliance with disease management requirements and the compromises an acceptable lifestyle can necessitate for many individuals. In addition to providing his perspectives on how the poem expands on the biomedical components of diabetes in recognizing effects such as fear, anxiety, frustration, and oppression, Dr. Coulehan recounts how he has used this poem and others in teaching medical students and residents. He also tells stories of particular instances in which he used poetry as part of the care he provided certain patients, and as a way to connect with them. 

Links:
Dr. Jack Coulehan’s bio and posts on Medhum.org

The poem, Diabetes, and the comparative biomedical text discussed can be seen here in Russell Teagarden’s blog, According to the Arts. 

Dr. Coulehan’s poem, I’m Gonna Slap Those Doctors, which was central to one of the stories he told, can be accessed here. And, his poem, The Man with Stars Inside Him, which was central to another story he told, can be accessed here.

In this episode, we make a distinction between illness as the subjective perceptions of a health problem and disease as the pathological basis of a health problem. This distinction is explained in much greater depth here in According to the Arts. 

The Clinic & The Person is a podcast developed by our editor Russell Teagarden to summon or quicken the attention of health care professionals, their educators, researchers and others to the interests and plights of people with specific health problems aided through knowledge and perspectives the humanities provide.

Feature image by Álvaro Serrano