Poetry

[Kevin53]

This week I attended a poetry reading by Polly Atkin . A few thoughts from the evening....

In 2014 she was diagnosed with one of the Ehlers Danlos Syndromes (EDS) – hereditary connective tissue disorders. In 2015 she was also diagnosed with Genetic Haemochromatosis, a hereditary metabolic disorder which leads to a toxic accumulation of iron in the body. See Being Mutant for more on both conditions and her experience of living with them.

Polly would have liked to have written stories or novels

The fragmentation , fatigue and pain, raised the possibility of poetry.

How do you describe an autoimmune condition:

Rock in your shoe. Wasp in your ear. Knife in your side!

Diagnosis:

“It’s incurable; why do you want it diagnosed!”

Gender based incurable illness. Medical folk don’t want to diagnose. The lady looks attractive, pretty, good makeup, smiling. The pain and fatigue is hiding.

Womens’ pain is ignored. Why do you need the diagnosis.

If you broke your leg you wouldn’t say don’t get it diagnosed / treated.

Better diagnosis.

Make the invisible visible!

Me and the incalcitrant. To describe the other part.

Unseen and unheard.

Chronic illness is like pushing a rock.

Polly mentioned in one of her poems the taste of iron in the subjects mouth. Polly thought that the taste of iron was something we all experience.......it is the classic symptom of haemochromatosis diagnosed five years later!

Basic Nest Architecture by Polly Atkin published by Seren (a Welsh Publisher).

Best wishes

Kevin

[whisperit]

Thanks Kevin,

Always good to hear of creative responses. I'll look out for her stuff x

[Hidden]

By some strange coincidence you have posted this just as I’ve been researching a hereditary form of EDS for myself. Polly’s words fall like poignant droplets for me! X

[Hidden]

Yes I do know it’s hereditary and don’t mention it lightly as a contender for me. I’m doing my research - and am fairly certain I have some form but I don’t know enough to know what type yet. I plan to ask my rheumatologist for her evaluation when she phones me back sometimes this week. My sisters and late parents could all have had some form of EDS - not the classic hypermobile one though although my hands and wrists and elbows are hypermobile as it happens.

So I just felt a strong empathy for Polly the poet’s words is all.