When doctors turned their backs on us, I wrote this song

I hadn’t met any doctors who would listen or understand, I had felt ostracised from my present (able-bodied) community, we were neglected and forgotten. I wrote a song about it.

I wrote this song during a time when I felt the world had given up on us.

I remember watching Luke Cage and a young boy from the street said something about there not being any heroes, and I said to myself “damn right, we’re on our own!”

At that time I was mainly housebound, I hadn’t met any doctors who would listen or understand, I had felt ostracised from my present (able-bodied) community, nobody outside fought for my patient group, we were neglected and forgotten. There are no more heroes, but we’ll do just fine on our own, I thought.

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Purchase or stream here

All proceeds for the first year (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.

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I wrote this song when I was living with my parents in southern France. I was just starting to understand (after five years of being ill), that there was something seriously wrong in my body and that it might be ME/CFS.

I knew very little about the disease and I hadn’t yet met my community of other ME patients, although I was beginning to be aware that there were millions like me out there.

No one in Denmark was talking about this illness and I felt like I lived in a parallel world: How could no one be fighting for us when it is something that has destroyed so many lives.

I have often felt like this song was a bit prophetic, too. In 2019, a unanimous Danish parliament voted to change the perception of ME from a psychosomatic perception to a biomedical perception — the correct and scientific perception.

This brought several high-standing doctors into a frenzy. Without listening to the patients or reading in-depth, and critically, the scientific literature of ME, they opposed the decision openly — and angrily — in the Danish media. They thought it was dangerous for politicians to meddle in health matters and that making a psychosomatic illness biological was an abomination.

The Director of the Danish Health Authority spoke at a conference for doctors and said about the vote (my translation): “That day is not a star moment for me. The Danish Health Authority had very strongly indicated - almost with an exclamation point - that we were very concerned about something that was not somatic [ie not biological], and that it would do more harm than good.”

There are no more heroes. Do you see? Those in our society who are supposed to be on the side of patients, who are supposed to be our healers, turned against us, with massive consequences for our lived realities.

The song is also about nostalgia — a yearning for the happiness of a former place or time. It expresses a yearning for play and innocence:

Upstairs in

The attic, I found our old cartoons and masks

Remember

How we’d be lost in play

And for a time when we thought we could change the world:

We dreamt of saving the Earth

But the moon was too high

And a time when I felt the world was safe and we were indestructible:

Remember

How we would listen to the stars

They told us we’d live forever

But that was a lie

There Are No More Heroes is a song of nostalgia and grief, yes, but it is just as much a song of hope, a hope that we will all “sit under blue skies” and “meet again some sunny day.” I have met so many beautiful souls whose lives have been destroyed by illness. One day, I hope to meet you all in real life!

I play the flute, Jonas Müller (my brother) plays the piano and Matthew Adomeit plays the double bass. François Perdriau has mixed the song and Pete Maher 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 music here

Tell me…

What are you nostalgic for? Whether you live with chronic illness/disability or not I’d love to hear from you.

Do you wish there were more heroes? What would they do?

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?

My debut single is out! Salem: A song for the disbelieved

How I created my album from bed and wheelchair

Creating with a disabled body in a perfectionist world

Meditation: Letting go of what we can’t control

Are you looking for all the meditations? Click here

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I want you to know…

I’ll be sending out two more singles roughly a month apart and then my album will drop on the 29th of August. I don’t know what my energy levels will be like during this period as I’ve never tried this before. I’m expecting lots of emotions during this release time and emotions can be taxing.

So please bear with me during this upcoming period. I will most likely veer off schedule and I cannot say how often I’ll be sending out essays or meditations.