Did You Not Know? + Album is out!
A song about invisible illness + now you can hear the full album
Hi! So sorry I’ve been AWOL the past couple of weeks, I’ve been in and out of hospitals and am completely fatigued and burnt out now. I will be taking a longer break after this newsletter :)
My album is out! Listen to or purchase the full album here!
It’s called Did You Not Know? because I thought it portrayed my (and millions others’) experience of living with illness that is — and has been made — invisible, neglected and ignored.
I want to highlight the title song from my album:
Did You Not Know? is a song about living with invisible illness — and without even knowing it yourself. It is about the grief and depression of losing large chunks of your life and being left by people you love.
Purchase or stream here
All income for the first two years (possibly more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.
If you can’t listen to music, then here are the lyrics.
This song was among the first batch of songs I wrote in 2015, before I knew I had ME/CFS. I had been sick and missing from my normal life for four years at this point and I didn’t understand what was going on in my body. But I was grieving without truly knowing it.
It is only years later, when I re-read the lyrics, that I understood how much grief and sorrow was expressed:
Did you not know
That the worms they ate away my clowns
I hadn’t felt true joy for a long time and I felt like my body was eroding. It was a confusing time as I didn’t know I was sick. I thought it was me, my person, my character, my mindset, my emotional and spiritual energy bodies that were the problem.
I had also experienced people, whom I had loved, leaving me, or distancing themselves from me as I was fumbling to live in a world that wasn’t suited for my bodymind. I felt angry:
The storms grew loud as Thor descended and spoke on my behalf
The flowers died where you left your shoes the day my demons arrived
This song began with a creative practice I call ‘Mumbling’. I had created a simple chord progression and had started to hum the melody. I then started mumbling random sounds as I sang the melody. The first round sounded something like this:
Mmheboliptosised.
There was something about the ending ‘-ised’ that just fit the melody. And the word hypnotised came to mind. I then made the sentence ‘I was hypnotised’.
I sometimes begin my songs in this way. It’s a great way to connect to my subconscious while really listening to what the music wants to tell me. And I love being surprised by what comes out. I then started saying words like worms and clowns and from there I knew what the song was going to be about.
I play the flute, Jonas Müller (my brother) plays the piano and David Hagen plays the double bass. François Perdriau has mixed and mastered the song. I feel so incredibly lucky to be able to have my song accompanied by such excellent musicians. They really brought out the vibe in the song.
All income for the first two years (maybe more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.
Purchase or stream the full album here
Tell me…
What have you lost in life and what do you grieve? Whether you live with chronic illness/disability or not I’d love to hear from you.
Have people rejected or left you? In which way?
What are your favourite lines from the song? Here are the lyrics.
I’d love to know in the comments below.
Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.
Did you miss?
We don’t talk enough about the trauma caused by chronic illness - so I wrote a song about it
My debut single is out! Salem: A song for the disbelieved
How I created my album from bed and wheelchair
Meditation: Stepping into belonging
Are you looking for all the meditations? Click here
Are you looking for all music? Click here
Wow Madeleine that's so fabulous congratulations lovely 🤗
Woot woot 🎉 amazing! I can’t pick out a favourite line.
My main loss that I still grieve, is my ability to get outside and wander in the countryside. I find it so peaceful, so grounding. It lifts me up no matter the weather and I only manage it with consequences now about twice a year. Gone are the daily walks. The exploration of the world. The joy in finding a feather or an acorn, or hearing the sea, smelling the salt in the air. Out of everything, the loss of friends, the loss of work, the loss of family, all those other losses this one hits home every day when husband takes the dog for a walk and tells me of all the things he saw.