The Poetry of Pain

Four of my poems about what it’s like to experience chronic illness, pain or particular symptoms are being displayed on The Unchargeables right now and with permisson, I have reprinted them here. I don’t usually discuss the meaning behind my poems, but I wanted to offer a little explanation of each for those who aren’t real familiar with poetry so that they might feel a little more accessible. I write poems like this to help me process the grief surrounding my disability and everything I have lost, but I also write them in the hopes that it will help others understand what it is those of us with Ehlers-Danlos Syndrome and similar spoonie conditions experience and so that others with these conditions will read them and know they are not alone in feeling these things, too.

If you’re a fairly savvy poetry reader already or just like word games, you may want to read them without reading the descriptions below first. Part of why I love poetry is because ultimately, they’re word puzzles and I love the feeling of success I have when figuring them out. These aren’t particularly clever so most should be able to get them, but a lot of people feel intimidated by poetry and we are a community that suffers from brain fog by and large, so I decided to include descriptions for those who aren’t up to the challenge today or simply aren’t into it.


By Capricious Lestrange

That’s what they call me, but it was never my mind that changed all the time; left my aspirations rotting on the vine. It’s easy to dream. Actualization impossible when energy wanes more than waxes and body break better than breathes. Dreams come to die in bones like these.

“Capricious,” is a prose poem, which means it’s written in paragraph form rather than in verse. It’s about reconciling what the mind wants with what the body can handle and how the world perceives these adaptations in someone with invisible illness. Note there’s a typo in this poem, unfortunately. The next to the last line should say “…body breaks better than breathes.” I talk a bit about why I adopted the name Capricious Lestrange in my bio.


By Capricious Lestrange

It fills every thought the way sand invades every crevice. There’s no leaving it behind or brushing it off and even days later, you still find traces of it, here or there; a haunting of sorts. Before you know it, agony is always tagging along. You take her with you shopping, to parties, your job. Your friends are not impressed. Agony has made you dull and they’re wary of what She wants. To be safe, they move away, hoping you might wise up and dump her. You try to pay her off, but Agony cannot be bought. Before you know it, your Facebook status reads “In a relationship with Agony” and your friends congratulate you and sprinkle you with tiny hearts. One by one they drift away, Agony your only counterpart.

The key to understanding “Agony” is the personification of chronic illness. She follows you everywhere you go, sticking her big nose in every last detail of your life, your interpersonal relationships, your professional life. That agony is a real bitch.

Genetic Stalker

By Capricious Lestrange

You are the boundaries I never wanted drawn.
Fault lines shifting in quicksand, elusive as breath.
Thirsty as a lion in drought, you stalk these dry bones
for a chance to suck the marrow.

What’s this?
Solid earth beneath my feet? Sweet, tender grass
tickling my toes and sunshine pierces the veil, imparting
her promising warmth. I sit for a meal of dandelion wine
and greens at her table, arrange weeds for my bed.

Dream of open prairies until claws hook in flesh—
Jaws sinking into bone. Fault lines shift, I never wanted drawn.

“Genetic Stalker” is a metaphor for the beauty and bliss of brief reprieves from symptoms and illness we spoonies occasionally and seemingly miraculously get, only to be plunged back into the cycle of constant illness and how traumatic that can feel, both physically and emotionally.

Genetic Stalker

2 thoughts on “The Poetry of Pain

  1. They are incredibly moving. It’s not hard to believe that if you did post ‘in a relationship with Agony on facebook’ that people would sprinkle it with stars…

    Liked by 1 person

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