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 Albrant

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 & 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