Hi friend! How is everything today? And happy International Women’s Day!
I loved our last community session where we all got to know each other a bit better. I especially loved seeing so many creatives here. I truly feel like creativity has saved my life, it has kept me alive spiritually and mentally and emotionally, which is why I want to talk more about that today:
Tell us about a a book, song/music, movie, or piece of art that resonates with you and your experience of living with chronic illness. What about it speaks to you on a personal level?
I chose it because it reminds me of the confusion and drama that I went through in the first ten years of having ME/CFS. I felt like that drawing. I felt like I was drowning, but in the most chaotic way possible. And I felt like everything was drowning with me, my life was being shattered in pieces.
So why do I have a piece of art that reminds of something so horrible on my wall?
First of all so I can practice acceptance and find a sense of peace, even beauty, in all that chaos. I use the drawing as a way to overcome shame.
Second of all, it reminds me to be truly grateful that my situation and body has stabilised. It sounds odd, given that my level of function is so incredibly low, but being stable and having found peace (as much as is possible) internally is something I am truly grateful for.
Over to you:
Tell us about a a book, song/music, movie, or piece of art that resonates with you and your experience of living with chronic illness. What about it speaks to you on a personal level?
If you only have the energy to name one thing without explanation then please just do that. You’re also welcome to list a good handful.
If you’re too pooped then pop in anyway and say ‘Hi, I’m pooped today!’ And let us shower you with love.
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:
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💛
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 🙂
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. 💚
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?
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.
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!
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.
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🙃
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
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
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:
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.
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.
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.
me too
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💛
Thank you! My book is considered "memoir adjacent" with some memoir elements and some prescriptive elements.
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 🙂
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. 💚
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?
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.
Love this! And I so agree with you especially re her loudness when chronic illness renders us so invisible. Such a great point!
Do you have a favourite of hers? Or anyone really? 💚
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!
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.
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🙃
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!
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
https://birdeatsbaby.bandcamp.com/track/ribbons
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!
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
Yes super intense, but I like intense lyrics 🌸 Yeah I’m looking forward to more people chiming in!
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:
Lord,
when you send the rain
think about it, please,
a little?
Do
not get carried away
by the sound of falling water,
the marvelous light
on the falling water.
I
am beneath that water.
It falls with great force
and the light
Blinds
me to the light.
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.
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.
A strange, but wonderful, gift indeed! I have become a lot more appreciative of poetry because of ME, too.