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Chronic Illness and Loneliness: A Poem From My Journal

Red and yellow kite flying against blue sky with faint white clouds

Coping with loneliness is not uncommon for us spoonies in the chronic illness community. Things like declining plans to stay home and rest, being home-bound due to pain or flares, and self-quarantining can sometimes make us feel alone.

When I was recovering from my hospitalization in the fall of 2018, I had to drop out of my college courses which left me feeling lonely and confused about my career path. Today’s post is a little something I pulled from my journal that encapsulates what it was like for me to deal with loneliness due to my ulcerative colitis flare.

The Poem: This Adventure Waiting

I wrestled with myself today. Tried not to be angry but I was. Crouched into the fetal position until I was certain that getting up would cause the slightest curve or coil in my intestines and they’d spill out over the floor.

I sat down in the bathtub. But not for a bath. In the middle of a shower. Just sat. Let the water get hot and thaw my scalp and shoulders. It was nice to feel heat somewhere other than my intestines.

I picture myself scooping up my intestines in my arms, petting them, comforting them like a baby. But they remain angry, red, inflamed, and I can’t hush them.

I try to pamper them. Wipe their tears with warm electric blankets, fruit smoothies, ginger tea. But they refuse it, rebuke it, embrace their self-destructive ways, ways of fury, ways of hate.

Sometimes they get the best of me. Sometimes their writhing inside of me is so raw that I break. I cry, wondering how I can get this broken part out of me; this body part meant to give you life and energy by absorbing nutrients now shoves them outside of myself! It neglects its job.

I cared for you so long, why do you forsake me now?

There are times when I’m happy. Times where I forget. Moments where I am myself, my old self: In the sunshine; snuggling with my husband; writing in my journal.

There are glimpses of the old me, but they can only exist as fleeting moments; a kite sailing in the wind, but one more gust of air will fold it; it will double over; crumpled paper, crippled wings. Please, God, no more gusts of air unless it’s your breath.

I long to see the mountains again. Not from a nature calendar or my Instagram feed, but right in front of me. Beautifully mossy giants where I envision an iron gate to a castle could stand.

(Why are mountains always talked about as distant things? I want to reach my hand out and touch it.)

I miss the ocean, too, the sand, the seagulls. I’ve forgotten what the grains feel like between my toes.

This longing, this urge, this pent-up adventure seeking to be released. Though my intestines are holding it back, they’re also creating space to chase this adventure. This adventure to travel, to be alive, to be present, to be myself.

So hush now, broken body, let me hug you, wrap my arms around my stomach, love my belly through the pain.

Quiet now, little one, don’t cry, don’t bleed.

Shh let me restore you to the way you were once before.

Let’s heal, let’s forgive each other, let’s walk together into this adventure waiting.

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