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

Hypoglycemia can kill you fast. The brain, our most self-centered organ, is also the greatest consumer of glucose. If blood sugar levels drop, it starts to shut down the rest of the body, in a desperate attempt to save fuel —it will drink every last drop of sweet sustenance before collapsing.

That’s how it feels; like parts of me slowly go dark. If I collapse, right here, in the middle of this park, I won’t have had a chance to say goodbye.

It’s a beautiful day outside. Beneath the trees, the filtered light takes on a greenish hue. A dog yawns on a patch of grass in front of me. I’ve found a spot on the corner of a bench facing a fountain—I can barely see it though, given the sheer number of people coming and going, dodging one another and getting in the way. I rub my right hand against my thigh, starting from the knee, pressing down with my thumb. I look around and crane my neck, trying to scrunch it down over my shoulders like an accordion.

I need to drink this entire bottle of pineapple juice. I bought it at a street stall the moment my alarm went off. Something must have gone wrong—with my meal, with the heat, with my nerves, or with who knows what, but my blood sugar is draining away, slipping right out of my body. Within the nebula that is my mind, clusters of stars begin to vanish. Suddenly, in a corner, the light goes out. A void emerges in the upper-left quadrant; I lose an immense cloud of hydrogen, and, along with it, all sensation in my feet. Blinking becomes a conscious task that demands effort; I don’t want to make it, so I simply close my eyes as I drink. There dies a sun, leaving its entire solar system in complete darkness. My hand has already made a hundred trips up and down my thigh. It occurs to me that all this back-and-forth motion is burning glucose, but the movement helps keep my anxiety at bay. Fighting this panic is costing me the very sugar I don’t have; I am living proof (at least for now) that sometimes, resisting the inevitable only makes things worse. If you fall into quicksand, stay still.

Someone shouts, somebody laughs and claps; there’s people making music, but it’s all distorted, as if the hot air were making the sounds bubble. I hear the beep of my insulin pump. It hasn’t stopped vibrating; I pull it out from my pocket and imagine it’s screaming at me, threatening me. My sugar levels are very low, and they’re still plummeting. The app on my phone—connected to the glucose monitoring patch on my arm—picks it up, too: my screen turns crimson, filled with arrows pointing straight down. I don’t have much time.

At least I’m sitting down, though I doubt I could stand. I think about calling an ambulance, but I suspect that if I had to start speaking to explain the situation, my voice would sound like a soaking-wet mop dragging across a school hallway floor. Besides, wouldn’t it be better to call my mother? Or my father, or my siblings—or the girl I dated a couple of years ago? Because I’ve only ever managed to fall in love once, with her; what a waste it would be if I died here, alone in a park bench. I’d lose the chance to experience that feeling again.

I should tell my mother that I love her, but there’s a six-hour time difference between New York and Madrid, so she’ll be asleep; and honestly, I don’t think I have the time or energy left to unlock my phone and make the call. I ought to keep drinking. The more pineapple juice I gulp down, the higher my chances of survival. I’ve never really known exactly when a person loses consciousness and slips into a coma—I don’t know how close I am to that edge. I don’t know how far away those thresholds lie, or how quickly they’re being crossed. I want to call someone, or cry out for help, or at least make sure that someone sees me losing consciousness—if only so I can say that someone was there, that someone witnessed it. That they saw the sun go out.

I don’t do it. I move only my arm; I bring the juice to my lips. My fingers tingle. I tremble.
A blink of an eye lasts longer than before.

I stare at a shapeless, unfocused mass of people. There’s this phase in hypoglycemia in which I feel myself reverting to something animalistic, primitive, a beast between two palm fronds; I’m in awe of the certainty I feel that nothing matters except my own survival.

An example: I drag my body to the fridge, haul myself forward, shove everything into my mouth without thinking; juice and Coca-Cola drip down my chin; I mix bread and fruit and cheese and sauces and whatever else I find; I use my hands—tearing, shredding, and stuffing it all into my mouth—barely chewing, coughing and spitting, then swallowing again; my fingers slick with grease. A ravenous urge burns across my forehead, and I breathe with incredible depth, as if someone were pumping oxygen into me through a funnel embedded in my throat.

I remember having done that several times.

I exhale, emptying myself out, and sparks fly from between my teeth. I can’t see clearly. Things—people? —move before me, but they’re terribly blurred. It doesn’t matter; I’m the center of the universe. I’m like a child. I drink my juice.

The feeling of losing control is a curious one, for it seems to be well-organized. From the bottom up, my limbs go numb. Mental fog seeps in through my nose and settles in my glabella. It concentrates; crystallizes. My thoughts cease to be mine—though I wonder if they ever truly were—and questions of this sort—like the one about love—begin to bubble up. Flashes.

Suddenly, I find myself wondering if I have ever truly been rebellious. I don’t know. My mother used to say that as a baby, I never cried—that I was pure tenderness. The thought of dying fills me with distress, for tenderness makes everything interesting, and I long to hold a little girl in my arms—to know that she’s my daughter, to watch her cling to me, burying her fingernails into my skin, like tiny half grains of rice. I tell myself that this is my life’s dream and purpose; for a moment, it feels as though my body might finally be able to relax—but it doesn’t. There remains a starry corner of my mind that still clings to the juice, to the park, to the yawning dog, and to reality itself. I take another sip.

A sudden flash: a line from a John Ashbery poem that says the bedroom of the soul is our moment of attention. I force myself to pay it— I tell me that, in doing so, I’m bringing myself back to consciousness. A minute’s passed? Or is it already the next day? I can’t tell.

Tachycardia is the worst part, for it forces itself upon me. It tramples my chest, imposing a rhythm of time from which there’s no escape. The only thing I can feel is my heart.

A hundred beats.
Hundred and twenty.
Hundred and forty.

Panic and tachycardia are close allies —and panic is a diabetic’s sworn enemy. It wants to trick me, it whispers, tells me everyone’s watching me, says all can hear the frantic hammering in my chest. Random clusters of thought dissolve, giving way to a single, definitive question. It is here that my illness bifurcates, and I ask myself (as I’ve been doing for years): which comes first, diabetes or shame?

I don’t dial 911, I don’t call my family, and I don’t ask for help, because I am ashamed. Right now, on the verge of losing consciousness, nothing should matter except staying alive. I ought to scream, to make a scene; for if I simply let myself fade away while sitting on a bench in the middle of Washington Square Park, no one is going to stop and help me. New Yorkers are more than used to seeing people sprawled on the ground, asleep on benches, or passed out in the subway; they won’t be the least bit fazed to stumble upon a twenty-something year old with his head lolling and his eyes closed, sitting upright, back straight, clothes clean, beard neatly trimmed. I need to grab their attention—my life’s slipping away, my blood feels as if it’s being pulled downward—I have to do something, right here, right now, but I can’t.

Asking for help means intruding on another person; it means meeting their gaze, making demands, stepping out into the spotlight to take a bow before the entire audience. It is here, in this theater of interaction, where human beings are made and molded. In my case, the guiding emotion is shame. The gaze of the other is the place where we all live and die. What is it, then? What’s about to kill me? Hypoglycemia, or my own inability to step outside myself?

Web image from Wiki Commons.