Mar 8Liked by Madelleine Müller

I have recently read a book of poetry called "How far you have come" by Morgan Harper Nichols. I printed out a few of her poems that resonate with me as I write my book about my nearly 10 year journey living with chronic pain:

I do not know why I am still here

or why I say anything at all.

In a world spinning wildly with questions

Water circling in a thousand directions,

My tired heart still beats

While I search for meaning,

And I feel like an imposter

On some hero's journey.

I will trust that I matter.

I am here,

I live,

I breathe,

and I speak with curiosity.

Existence is a mystery,

But I will live my life

With intention.

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So beautiful and powerful! Thank you so much for sharing 🌸❤️ “On some hero’s journey / I will trust that I matter” — I really resonate with this part.

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me too

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Mar 8Liked by Madelleine Müller

Great to come across you on here. I look forward to reading your book! Is it a memoir or one of poetry? (Or another). “I will live my life with intention” I love that💛

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Mar 8·edited Mar 8Liked by Madelleine Müller

Thank you! My book is considered "memoir adjacent" with some memoir elements and some prescriptive elements.

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Mar 9Liked by Madelleine Müller

Memoir is my favourite genre! I’ve subscribed to your page. Though I’ve come across many fabulous writers here, the ones that capture my interest and attention most are those of us sharing our chronic healing journeys. I look forward to reading your material 🙂

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Mar 8Liked by Madelleine Müller

If it’s not too stereotypical it’s Frieda Kahlo, when I read about her for the first time I’d just sob. I could especially relate to her pain relating to infertility, it’s not something widely spoken about. 💚

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Ooh I don’t find that stereotypical at all. And her work and themes touch so many, especially women, deeply. Any particular piece of work that speaks to you? Or is it more her story in general?

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Mar 8Liked by Madelleine Müller

I don’t know if I do have a particular one. I love her loudness with colour and opinions when you can feel so invisible with chronic illness and disability. The way she looks head on with eye contact in her paintings, it’s like staring into her soul. I love the way she did everything with such gust, she was Frida and firm in that.

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Love this! And I so agree with you especially re her loudness when chronic illness renders us so invisible. Such a great point!

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Mar 8Liked by Madelleine Müller

Do you have a favourite of hers? Or anyone really? 💚

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Mmmm… right now I resonate so well with her bed paintings… can’t remember the different ones and titles. So much is happening in those paintings which for me symbolises all that happens inside… which is a lot!

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Mar 8Liked by Madelleine Müller

She’s got a lot of bed ones, I can see why you’d relate. It’s interesting it’s the same woman, same art but we’re seeing and relating to different things 💚 it’s beautiful really.

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Mar 8Liked by Madelleine Müller

Nothing as poetic as others are sharing but A book I am currently reading atm is Finding Peace with a Devastating Disease by Amy Corfeli. Amy lived with endometriosis 16 years before diagnosis. It has deepened my insight into this disease specifically and how she writes every page from such a place of peace I’ll never know. It’s not something I’ve yet managed to do with my own book🙃

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Oh interesting! I’ll add her to my very long list of books to read when I get better! Sounds good. Thank you for sharing!

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A few months into what would become Long Covid (now updated to ME - yay me!) I discovered the song "Ribbons" by Birdeatsbaby, which although has nothing to do with illness (it's actually about "when choices can become restrictions") has come to represent my life with sickness, especially those shocking early days. The video for the song with the band members restrained in webs of ropes, unable to free themselves, only strengthens that meaning for me.

"She tore me to ribbons

Guess that’s all I am

Heaven sows the seeds of light

I just turned and ran

A halo, light tripping, I’m absolved of a thousand expectations

It’s a shame though, to be slipping

See those embers down below

In all the worlds

I would never succumb

To the lights flickering

Tempting the flames, the flame

I am made of splinters

Scattered from the shards

Heaven tricks my path with light

For every fallen star

Daemon, guide me slowly I’m ashamed of a lifetime of weakness,

Am I the white crow

Secrets lost in the mouth of vertigo

A fate that’s winding

These ribbons become strings

To the place, it’s quickening

it shakes it’s mighty wings

Like connoisseurs they picked me

Out of the shallow bowl

Promising division

To tear my gentle soul

I am cut from mother

Head up on the spike

So far from shepherd’s pasture

into the open wide

a jaw line, blood dripping from the strike

still alive but barely breathing

in a while I’ll tend again and amend for my shadow

My path is fortune

My price sharp and cold

My light is flickering"

Video for those who can watch/listen https://www.youtube.com/watch?v=lQ5RGG5mPS4


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Oh wow, that’s some amazing lyrics! I can really see why you resonate even though it’s not about illness as such. Thank you so much for sharing!

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certainly intense, as is the music/performance of the song.

And thank you for starting this thread Madelleine, since finding this song I have often wondered what art resonates with fellow people living with chronic illness

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Yes super intense, but I like intense lyrics 🌸 Yeah I’m looking forward to more people chiming in!

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Toni Bernhard’s How to Be Sick was a really important read for me, just in terms of offerinf strategies to cope with the extreme experiences that can come with severe ME/CFS. I also want to mention this (untitled) poem by James Baldwin:


when you send the rain

think about it, please,

a little?


not get carried away

by the sound of falling water,

the marvelous light

on the falling water.


am beneath that water.

It falls with great force

and the light


me to the light.

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Thank you so much for sharing! Wow, that’s a beautiful poem, I love it. And yes, Toni Bernhard has some great advice for navigating chronic illness.

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I never had much patience for poetry—I’m a prose writer, I actually discovered your substack through a thread of Jeannine Oullette’s—but one strange gift this disease has been an interest in poetry. Poems are bite-sized chunks, and are read and metabolized more slowly, which is sometimes more ME-friendly than tearing through prose.

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A strange, but wonderful, gift indeed! I have become a lot more appreciative of poetry because of ME, too.

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