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. 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.
You can read the poems here. I have the link set to open in a new tab so you can switch back and forth to read the description and then the poem, if you’d like. 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.
The first, “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.
“Head Pain” describes the different types of headaches I, and many people with EDS, live with on a near daily basis. For many years, headache free days were a true novelty for me.
The key to understanding the third poem is that “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” 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.