“There’s always a tug in my heart”
A conversation about creativity, grief and severe ME/CFS
Welcome to GriefSick Chronicles, a collection of conversations exploring chronic illness grief.
First up is
, a singer-songwriter, musician and writer living on the scenic island of Bornholm in Denmark. Madelleine has lived with ME/CFS since 2011, and has been mostly bedbound with severe ME/CFS for the past six years. Check out her newsletter , about navigating chronic illness and creativity from a feminist and anti-ableist perspective.In this conversation, we talk about
What it’s like to live with severe ME/CFS
How severe ME impacts Madelleine’s brain, her creativity and her connection to herself
How energy pacing affects Madelleine’s practice and identity as an artist
Madelleine’s grief at how her creativity has changed since becoming severe, and how creating brings her great purpose, despite the physical pain involved
The pain of unwitnessed chronic illness grief and practices to navigate it.
It was a privilege to talk with Madelleine. I found our discussion fascinating, particularly how Madelleine challenged my preconceptions of how creativity works. I admire her greatly.
You can also listen to our unedited conversation on audio. To enable Madelline to take part in this interview without having an energy crash, we split our conversation into two sessions of 30 minutes each, a week apart, making the audio two separate conversations stitched together.
Could you describe your journey with chronic illness?
It took a long time before I figured out what was wrong. I'd had symptoms for two years, between 2009 and 2011. I crashed on 2nd May 2011. It took me six years after that to get a diagnosis of ME/CFS. And during those six years, I was knee-deep in the yoga environment as a yoga teacher. Everybody was like, “you're burnt out and you're stressed”, “you need to heal your inner child”. Doctors were saying the same thing, that I was depressed or stressed. A physiotherapist said I was deconditioned. It was the most confusing and traumatic years of my life, because I had a voice in my head saying, “there is something very wrong here”. Half of my life was gone. I wasn't able to work. I could do one activity a day, I could go shopping, or teach yoga, and then that was it. I was in denial about all the stuff I had lost. I was constantly like, I just need to heal this and then I'll be better. But that's a lot of loss, the loss of a job, and a social life as well. I wasn't even able to go out and have long conversations with friends, let alone parties.
“Severe ME is a life in bed, a life lying down”
So five or six years of complete and utter confusion. And my body got worse because I was given the wrong advice, to exercise. And that's the biggest no-no when you've got ME. I was a yoga teacher and exercise is the big thing, I thought that that was going to cure me. But it was making me worse. I remember, I had been in a session with an energy healer. He was trying to convince me that I had stuck emotions and that’s what was going on in my body. I left that session with my brain on fire and I had to run to the bathroom to throw up, I was in so much pain. I was just like, okay, I get it now, there's something seriously physically wrong here. There's something I have no control over. I finally found a doctor and got a diagnosis of ME.
Thank you for talking me through that. Could you tell me what it's like to live with severe ME? For people that don't know, there's four classifications of ME: mild, moderate, severe and very severe. Most of the time, if ME is covered in the media at all, you will hear from people like me with mild to moderate ME. And that's a very different illness to severe and very severe.
Yeah, it is very different. And I do want to say that even though we call it “mild ME”, it's not mild. It's still roughly 50% of your life that's gone. That's not mild. Severe ME is a life in bed, a life lying down. I've got my feet on the floor for about 15 minutes in total a day. I have PoTS (Postural Orthostatic Tachycardia Syndrome) as well, combined with the ME, that means I can't stand up for very long. I've come to a point where I consider myself stable in the sense that I don't get PEM (post-exertional malaise) often because I know exactly what triggers it. I avoid that by having a routine. Every single day the same thing happens at the exact same time. I live with my parents, who are my carers, and they do pretty much everything for me, like washing and drying my hair (I can go to the bathroom on my own), going shopping and changing the bedsheets.
The lying down thing is beyond boring and isolating. I do not get a lot of visitors, they have disappeared over time. And I cannot go anywhere to meet people. I have one friend whom I talk to on the phone but we have to set a timer for 20 minutes, because other than that I start to get sick. I actually find the worst thing is my brain. Because if I had a completely well brain, I could sit and read or write all day, I could talk to people on the phone. But I can't. I can read maybe a paragraph at a time. And writing is difficult because of brain fog. I don't like that word because it sounds like, you know, Monday morning “I got drunk at the weekend” kind of thing. It's not. It feels mechanical, like there are walls in the brain where your thoughts bounce up against. I find that to be the most difficult because finding something to do that your brain can handle and that is exciting enough to take away the boredom and the restlessness is very difficult.
“There wasn't enough energy to feel and my brain was not able to pick up on an emotion so it was just blank and empty, but also noisy. That was eerie”
My brain used to be so bad that when I closed my eyes, I would see flashes of light and lots of noise and broken images of weird things, like elephants and pink tutus, completely haywire. It was painful. I couldn't sleep because if I closed my eyes, it would start. So I had to lie with my eyes open until I just was kind of knocked out or something. That felt like I had lost all connection to myself. Our brains are really where our spiritual connection is. If the brain goes off, you're disconnected. I felt disconnected from my intuition because my intuition and my subconscious speaks to me in images. And I couldn't create images or sensations. There wasn't enough energy to feel and my brain was not able to pick up on an emotion so it was just blank and empty, but also noisy. That was eerie. I don't have words to explain that. This lasted for about two years between 2019 and 2021. And then my doctor found some new medication which helped a lot. I can sleep now but my mind is still kind of empty. There's definitely an inner world that has been diminished to a large extent, which is difficult.
To allow for this half an hour interview, what have you had to do?
To allow for this, I have to make sure that I'm not doing anything else that day. So, I'm not going to talk to my friend today. I'm not going to chat online today, I'm definitely not going to wash my hair today. I'm probably not going to talk to my parents for that long today either. And I will not be able to use my brain for the rest of the day. So I will be either lying with guided meditations, or I can watch reruns of super easy series that I’ve seen before, like Grey's Anatomy.
Thank you for spending your energy on this today. I know the sacrifice that entails. What are you grieving for at the moment?
The biggest thing is the creative side. It's a new year and there's energy in the air and I feel a lot of creativity bubbling inside but I can't produce. With my inner worlds being diminished and veiled, it feels like creative inklings are far away. Like, there'll be sort of a notion of something or some sensation or some feeling or a colour. But I can't grab it. I have accepted my physical disability, with staying in bed. I have not accepted my cognitive disability in any way. Because it limits me so much, it limits my expression.
What is your relationship with that grief?
It depends on which day you're asking. It goes up and down. It’s always there. It's not like I can have a big cry and then it's okay. There's always a tug in my heart. To a large extent I have gotten used to the grief, but I am feeling that I want it to be witnessed more. I think because the few people that are around me, we've all gotten so used to the situation, it's not a big deal. But it is, you know? I want that grief to be seen, I want people to understand how much has been lost.
Why is that important to you?
Because everything is normalised and it creates a disconnect. I can easily go about my day and I can be very happy and I can feel content. In my bubble, things are fine, I get the care I need, I get the food I need. But I need people to see that this is not normal. Once in a while I do need someone to say, “wow, this is a crazy situation”.
I know that you're a creative person, you're a singer-songwriter and a creative writer; how do your creative practices support you and your grief?
They help me to express my grief, but more so, they help me to excavate, to dig deeper. For me, creativity is more than just being heard and being able to express. It's about the digging process as well. It brings me closer to myself, having been taken out of life, living in a body that is very uncomfortable to live in, living with emotions that are very big and very dark and very difficult to be with. I think we can tend to move further from ourselves to distance ourselves from all that stuff. Creativity anchors me to myself, I feel like I come back to myself again. This is what I was meant to do on this earth. With chronic illness, there's not a lot of meaning; creativity brings meaning into my life. Which is also why it's so important and why I can sit through a tonne of pain in order to create because that motivation is there.
To create is painful for you?
It is. Because it hurts to use my brain. If I'm in a songwriting process I get very excited to sit in these flow states and my brain cannot sit in flow states because it takes a lot of energy. That's a lot of work to put on an inflamed brain that doesn't have enough energy. So it's physically painful to write my stuff and to be in creative flow.
I think this is one of the many reasons why ME is so countercultural. Because the dominant narrative we have is that creativity is essential to the human spirit. It's natural, it's healing, a flow state is this beautiful, wholly positive thing and actually, for our ME bodies, it's still energy expenditure, it still has consequences.
I had a therapist once who did not understand ME at all. She was always like, “you need to do more creative stuff, because then you'll get better”. But the more creative stuff I did, the worse I actually got. Not mentally or spiritually, but physically, because it takes a lot of energy. I had to learn proper pacing. I had to work with timers so I didn't go beyond my energy limit. And working with timers in a creative space, especially something like songwriting, where you've got lots of stuff going on, you've got melody, you've got rhythm, and you've got lyrics, working with timers is annoying. The only way I've been able to maintain my creativity is through hardcore pacing. Some songwriting things I can do in five minutes now.
How has post-exertional malaise and pacing changed you as an artist?
It's made me less productive first of all, but, but it's also made me more disciplined, more structured. When I had mild-moderate ME, when I had more energy and I could sit in flow states, it felt like creativity came from up above or something, because I didn't notice all the hard work that was behind it. But now I notice the hard work, because I have to chop things up into five minute pieces. And I'm like, oh, that's why I could be creative back then. It's not because I had a connection to the universe, although I'm sure that might be a part of it. It was because I was able to do hard work. And I was able to make a lot of mistakes. I can't really make a lot of mistakes now, which does hinder my creative process a little bit.
That's an interesting tension because so much of creativity is following threads and allowing dead ends. For me, as a writer, I take a long time to sink into the flow and the depth, where you hold multiple threads in your head at the same time, like you’re in this big texture, exploring around. How do you do this in five minutes?
I actually… I don't know. Some of it is setting intentions and being focused and then being okay with having spent a lot of energy on dead ends. At night, I'll set a very clear intention, like, tomorrow, I want to start a song that feels like this. I'll find the feeling that I want to express. So that's five minutes. And then the next day, I might be able to, I might not. So you know, it might be the next day after that, or week after that. But then I might have another five minutes, maybe 10 minutes, where I look through a chord sequence, and then I'll sit on my iPad and try that out. And that's another five minutes and it might not work. And then a few days later… that's the process. It takes patience.
“I don't feel that almost creative exhaustion where your brain is working, and this idea and that idea, then a third idea. And then, oh, a dead end here, and oh, I finally got it. I'm never there. And I do miss that”
What you were saying about having several ideas at once that might come together, I cannot do that and I miss that. So I don't feel as creative because I'm not in that kind of state. But somehow, something still comes out. I do see a difference, especially in the songwriting between when I had mild-moderate ME and now. The songs are shorter. There are less mental images which I find very interesting because it's very difficult for me to form images in my mind. I can visualise if I'm guided externally, but nothing really happens in my mind. I cannot use my dreams for creativity because they’re super stressful and I usually forget them. There is still emotion in the songs and they're still nice. But it takes a long time. I don't feel that almost creative exhaustion where your brain is working, and this idea and that idea, then a third idea. And then, oh, a dead end here, and oh, I finally got it. I'm never there. And I do miss that. That's one of the things that I grieve a lot, is that feeling of being deep in creativity.
What's amazing to me is how many restrictions there are, how disciplined you need to be, how you don't have the same brain that you used to and you don’t feel creative, and yet, you’re still writing songs.
It's amazing to me too. It took me three years to record my album. And that was one line at a time because I don't have the voice to go through an entire song. I start not being able to hit notes, because I don't have the muscle strength, my chords go hoarse. And even then I need to find good days. Not just good energy days, but good singing days. My voice is not singing ready at any time. It requires a lot of work and luck to be singing ready. But it's the same process, right? It's finding five minutes. Sometimes for just one minute, turning on the recording gear right next to my bed. All I need to do is sit in my wheelchair and recline it and turn on my computer, and then sing a line and then back to bed. And somehow I created an entire album of 10 songs in that way.
What an achievement, Madelleine. It's extraordinary. I can't wait to hear it when it comes out. I think that you cannot understand patience until you have ME.
Oh, it's beyond… we need a new word.
You wrote to me about how you can't cry out loud. How do you release your sorrow and your grief?
A lot of it does come through in my creativity and in my writing. But I do a lot of energy work, and I do a lot of inner emotional work. Otherwise, I think I would explode. I'll shed a tear, but I won't full-on cry, which also makes me very emotionally incontinent. I'll start, like, tearing up just seeing a puppy. So, it's there under the surface, all the time.
I do simple exercises with grief at night before I go to bed. I will check in and look at it. Just be a witness to it. What does it look like today? Is it a grumpy old man? Is it a little kitten lying in a ball? And what does it feel like? Is it heavy? Is it light? Can I accept more of it? Can I breathe into it more? Can I allow it to be bigger without it hurting my body? Can I give it more compassion? Can I give it a pillow to lie on? You know, anything that works with that emotion or with that feeling is very important to me. I've had a period of a lot of anger at the universe and God. And it wasn't until I fully allowed myself to yell inside my mind, after a year or two of yelling every night, I noticed the anger started to dissipate and fade away and then came the sorrow. And I know now that when I'm angry it's time to look at my sorrow, it's time to look at the grief, that when I get very irritated, there's an emotion I'm not making space for. So for me, it's very much about creating space for it in the body and breathing into it and allowing and accepting it rather than holding it down so that I don't really need to have big crying sessions. And it's easier on my body.
I just want to take a moment here to celebrate all of the creative ways that people with ME navigate their inner worlds and the practices we generate to feel emotionally well.
In your dream world, what would you like to change in terms of how chronically ill people are supported in their grief?
I'm trying to say this as diplomatically as possible… I want people to acknowledge it. I remember when I had moderate ME and I was starting to fall more severe. The friends that I had at that time, when I’d been ill for eight years, had been saying, “oh, you'll be fine” for all of that time. It's very dismissive to say to someone who's chronically ill, “you'll be fine”, because you won't. And they didn't hear my grief. When I would say, “I'm never going to have children”, they’d say “oh, I'm sure you'll get there”. Listen, please. Another thing I experienced, and still do experience, is having my losses, very big losses, compared to, and this is where I'm trying to be diplomatic, able-bodied losses. I'm not comparing, I'm not saying mine is bigger or worse, but it's very different to have lost 90% of your life, maybe even 99% of your life, than to have lost a pet, for example. The pain is there. But it has different consequences. If you, as an adult, lose a parent, it's massive pain, sorrow and grief. But the consequences are not the same. And so the comparison should not be made.
“There should be space for all kinds of grief, big and small. But make that space. Listen to that one grief first and then we can take the other grief next. But don't try and compare them”
There should be space for all kinds of grief, big and small. But make that space. Listen to that one grief first and then we can take the other grief next. But don't try and compare them, “oh, I know what you feel”. Like, no, you don't. Unless you're in exactly the same situation, you don't. My point is to make space for the individual's grief and just focus on that and sit with it. Don't try to fix it. That's my hope and I wish that doctors, therapists, social workers, anybody we meet in the system, that they understand the kind of grief that we're going through. Because it is big and it is heavy. And it makes such a difference to have even a stranger acknowledge that. It means a lot to be witnessed in this crappy situation that you're in. Because then there is space for the grief. When you don't have to hold it all inside it can flow out.
That's really beautiful, Madelleine. I’m training in grief tending at the moment, which is a practice of holding space for grief to be witnessed collectively. Whenever anyone in a grief tending circle expresses their grief, you might say, “we see you, we hear you”, but you never reply, “oh, that's like when this happened to me”. That's core to the practice because we can so easily invalidate each other without realising.
Yeah. A lot of people think that by bringing it through the listener’s perspective, that it's showing empathy, but it's not, it creates a dismissal, it's not being curious about your situation. Or being open to figuring out well, what's going on here, tell me more, you know? It stops that conversation.
After becoming ill with ME/CFS Madelleine started writing songs as a way to make sense of the confusion and grief of losing a life once lived and seeing the world differently when you’re no longer in it. This turned into an album, which will hopefully be released this year. Read more in Madelleine’s newsletter
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Thank you, Emily, for holding these conversations with Madelleine. The part that particularly resonated with me was how many, many people - well-meaning or otherwise - try to compare anything they’re going through or have gone through to the very unique experience of living a fraction of your former life and living it largely in isolation. Very few people can really understand what this does to a person. Thank you for putting that out there.
I’m struck by Madelleine’s persistence in her creative practice. There’s a courage in her commitment to keep going even if it takes longer, more effort and pain. I’m not trying to silver lining ME, just acknowledging her work to maintain this part of herself despite the challenges.