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Three Years of Chronic Illness Told Through Journal Fragments

By Erin SheaPublished 8 months ago Updated 8 months ago 6 min read
Photo by Krista Mangulsone on Unsplash

I felt both of my shoulder blades and wept. Caught the moment. Oh body, take care.

I wished what I felt would display outward signs, would manifest in dark creeping color. Oxygenized blood. That my skin would spark. They'd touch me and then understand...no words required.

Is this always where I was heading? Or did I derail myself?


After these endless months of contemplation, of deflation, of being and feeling so ruined, will I even remember how to live in the bliss? To live in that noise of nothings?

I'm starting to feel like a revolving benchmark: nothing from here will ever be the same.


The most epiphanic moment of your life is often the catalyst for the worst moment of your life. It's like wading into warm water, knowing the moment you get out, the air will bite. Your teeth will chatter. Your lips turn blue.


It hurt to go up the stairs this morning. You can pace yourself until you die.


When did I learn to associate sickness with punishment? As penance.


I fear I'll never let anyone touch me ever again. That I must lay undisturbed except when on an examination table.


All this busying, all this waiting, I fear the world will pass me right by. That stillness will turn sour (it already has). That my joy will become so muted with no one to share it with.


When I tell you I'm scared, I mean I'm scared of losing control. My grip on any given moment is so vital to my meager functioning. Now, I can barely hold my head up.

At rock bottom, your agency comes at a price. It promises darkness. I huddle in. I'm furious. My car is engulfed in a torrent of rain. I scream as loud as I can. So loud that my ribs jolt in pain. There's no use steadying myself.


Fall is a season of containment. Easy to move through in a placid mindlessness; living for the glimpses of color, of verve, of heartwrenching beauty.

I'm trying to bottle such glimpses - leave my shades open, watch the leaves spin like powerful daydreams, unaware of their fate. But the nights are heavy (sometimes) and bear a taxing revelation: I have to make peace with this vessel. I have to accept being in the prison that is a body, my body.

Fall reminds me that taking on the world means taking on myself. May I invoke the same friendliness toward myself as I do this blink of a season.


Perhaps it'll all come back to a gray-haired me. A future me with loose silver braids unafraid to stride into the sea. Greet the waves - lick my arm of salt and brine and say, 'I've missed you.'

The earth may yet welcome me.


For an evening, the moment filled the hole in me, carved out from years of fracture and mistrust and pooled blood. A body that rejects standing on my own two feet.

Can I fill the aperture of my existence with kindness? Just kindness? Can I deliver baked goods to lovers' doorsteps like a dazed deliveryman? Can I spend my remaining decades always looking for somewhere to rest my head...learn the patter of my heart intimately.

I suppose what I'm getting at is whether I can expect this body to bear gravity and swaths of internal hate...the cruelest compression. Oh, how to make this body, this life, an environment of tranquil acceptance instead of hostility. To fill this wretched shape and call it beautiful. Find the source of preservation - my limited, grasping art - and call it a life complete. Nothing lacking.


When I look in the mirror to obsess over my red eyes, I keep thinking the word 'ugly.' Not entirely in the sense of physical attributes (blackheads, peach fuzz, and the like), but in regards to looking weathered. Beaten.


The leaves are waving at me, I tell Mom. I've been waiting for someone to tell. Even though it sounds kind of silly, childlike - similar to "the moon is following me."

The next day I took a picture of the newly-flowered lilac bush and sent it to Gram. It's as if I'm convinced that reporting all my reasons to be alive today will make me more at ease.

But instead, I watched the leaves move from jubilant freeform dance to frantic quivering. It reminded me of how I feel in the morning. The internal tremor. The dread. My body drags me at my feet - lowly, tired. Desperate to stay in a world of dreams.

This is still coping.

Chronic illness trauma lives in your eyes and your bones - the arches of my feet, the base of my skull. Fight, flight, or freeze, played out in real-time from sun up to sun down. I have no choice but to house it, to play house with it.


I rise this morning with slightly more ease. Small things lead to bigger things. I talk until my pulse quickens. I'm confounded, once again, by the constant passage of people through buildings and buses, diners, and amusement park rides. Somehow I've fallen terribly behind.

Years ago, something turned on in my brain and pulled me far away.


Sick people need well people. Who else will try to lighten the room? Who else will open the curtains, cut the fruit, boil the water? Who else will see the sunrise?

I must try not to begrudge them - the smiles in commemorative photos. Tanned extremities. How they hustle, how they move. I must not turn sour.

I have to sustain this shape - a hard-fought victory that feels much like defeat. I do not like this shape. It's tired and near-rotted. It does not know renewal.

And yet, today, I linger on the idea that beauty and ugliness, motion and stillness, must exist side my side. They are not exclusive entities.


The death of the self doesn't happen in an instant. It breaks apart slowly until, one day, you look back (or forward), and there's nothing to grab onto. And the enormity of this inner loss is shattering. You become a stranger to yourself.


The uncertainty can be a friend - you can meet it in defeat.


If I bow my head and resign, flex my spine, and squint my eyes, will there be just enough room to maneuver? Is that all I need to be a living thing?


Even when I'm standing on my own two feet, there's this knawing feeling of displacement, an onslaught of internal storm clouds all rolled into one billowing thought: Can I exist here?

I'm tapping the ice pond with my foot, expecting the surface to give way at any moment. Can I exist here? Can I exist here?

And somewhere deep inside, a small, uncertain voice answers: yes, you can.

My vision fluctuates like a camera lens. I'm always waiting to retreat. I'm always waiting to recover.


I meditate on the stillness of a pond until my torso is half submerged in mud.

I scrape forward on the idea that all of this despair and disorientation makes me stronger, not weaker. That true strength is picking up all the pieces to make a crumbling structure, then doing it again the next day and the next, with nothing to show for it but shaking hands.

griefmental healthhumanityhealth

About the Creator

Erin Shea

New Englander

Grad Student

Living with Lupus and POTS

Instagram: @somebookishrambles

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