A Conversation with Madelleine Müller on Making Music from Bed, Grief as Practice, and Reclaiming Enoughness

Conversations Behind the veil 004

In the fourth edition of Conversations Behind the veil, I spoke with Madelleine Müller—disabled musician, writer, and creator of The Bed Perspective, a Substack that traces the contours of life, art, and survival from the vantage point of bed.

We talk about the slow unraveling of chronic illness, the aching gap between potential and capacity, and what it means to create from a place of deep limitation. Madelleine shares how she redefined success, learned to witness her own grief, and built a body of work that holds both sorrow and shimmering presence. Her voice, delicate, raw, and deeply felt, is a kind of truth-telling all its own.

This series is a space for honest, unguarded dialogue with fellow artists and writers. We explore the unseen: chronic illness, creativity, queerness, neurodivergence, and the quiet work of staying whole in a fractured world.

Before we begin: These reflections touch on the invisible labor of disabled and chronically ill artists, grief over lost potential, and finding meaning in creative limitations. We invite you to approach with gentleness—for yourself and for us.

vōx: Dearest Madelleine, thank you for chatting with me today. I’m grateful the universe brought us together. You’re doing such important work, sharing so vulnerably about the realities of living with chronic illness as a creative soul in your beautiful Substack, The Bed Perspective.

I didn’t consider myself a writer (aside from a songwriter) until very recently, and to be honest, it came as a huge surprise! This year has been incredibly challenging, and I wonder if it was fate that brought this outlet into my life at just the right time.

I haven’t been songwriting much (if at all) this year, and I’m curious how shifting into essay writing might change my perspective on lyrical writing. As an autistic person, I’ve often struggled with being misunderstood, so there’s a certain safety and satisfaction in being able to fully explain something. Lyric writing is more succinct by nature, and I wonder if I could create songs where I feel more fully seen.

I’d love to hear more about your relationship with long-form writing versus lyric writing. Have they always been close companions for you?

You’re also writing a memoir, right? What drew you to that even longer creative outlet?

Madelleine Müller: I’m so glad we have this chance to chat and that the universe brought us together, especially in this moment where we’re both sharing music while living in vulnerable bodies.

I first felt like I was a writer. I’ve always wanted to write a book and have done lots of academic writing, but I never felt creative. It’s odd, because I’ve written songs since I was twelve, but a critical voice inside kept telling me I wasn’t creative. I thought nothing of those songs and didn’t explore it further. I’ve played the flute since I was six or seven, sung in choirs, and done lots of creative things (including belly dancing and ballet), but deep down I never felt creative.

I always yearned for a creative life — I would get jealous if I saw other creatives expressing their art. A few years after my body crashed from ME/CFS the first time, I started to lose my voice. So I sought out a voice teacher and she said to me: “You know, I can see you have a lot to tell the world.” And then I went home and started writing songs again. At first they sucked, but suddenly I hit something, a nerve. And I loved the songs coming out of me. It was like magic, and I felt deeply connected to something spiritual. 

That was in 2015. And I finally felt creative — I felt like I could allow myself to be and feel creative. And it was very different from academic writing, I felt free, and expressed and seen, even if, at the time, it was only me hearing the songs. I think I felt like I could finally see myself. I could see why I had struggled as a musician, why I never felt good enough, and why I didn’t have the motivation to continue my music when I was younger — it was all because I hadn’t found my own way of expressing myself creatively.

I then realized that, if I can write lyrics, I can write something other than academic texts. I actually started a historical fiction book, which was a lot of fun, but as my illness got worse so did my brain and it was just too hard with all the research.

I had started a memoir at around the same time, but I preferred the historical fiction book, because it lifted me into another world than my boring and monotonous sick-world. 

After I allowed myself to let go of the historical fiction book I started to get more into my memoir book. I’ve written roughly 30,000 words, but I’ve had to put it on hold for now as it is too hard on my brain. I cannot remember what I have already written — everything is jumbled in my brain, and it’s too hard for me to do research, even though the book isn’t centered on research. It makes me sad, because I could do it if my brain was better. I’m super organized, structured and disciplined (hello Virgo ascendant and Capricorn moon) and it would normally be a project right up my alley.

So right now my biggest creative outlet is song writing — and writing my Substack, but I feel most creative and connected when writing songs. 

I do like to write my Substack as well as other long form stuff as I can more fully explain myself, and in that way feel seen and heard. But it’s a different ‘seen and heard’ than songwriting. Arg, it’s hard to explain. I guess my introverted, creative and spiritual self feels seen and heard in songwriting and my mind and direct lived experience feels seen and heard in long form. Combined, I feel seen and heard in a 360˚ manner.

Francesco Hayez - Portrait of Carolina Zucchi (The Sick Woman) - ca. 1825

vōx: I love that! 360˚ creativity. I feel similarly. All the different parts of my creativity, whether visual work, songwriting, or longer-form writing, help me express myself from different angles.

I relate to what you shared about struggling to see yourself as creative when you were younger. I was also writing songs and stories early on. I sang in choirs, played in orchestras, and took piano lessons. I was always making things.

I struggled a lot with self-worth as a kid, so I clung to any place where someone praised me. I still remember a piano teacher who noticed I wanted to write my own songs (non-lyrical at the time) and taught me how to notate them into sheet music. I remember an English teacher who valued my poetry. These moments helped me continue. They gave me purpose.

But for much of my adult life, I struggled to call myself an artist. Growing up in the U.S., where there’s little social safety net and the cost of living is always rising, I only saw artists “succeeding” if they reached a big monetary level. I thought I wasn’t allowed to claim the title unless I could fully support myself with art. Part of this was simply being able to see my self worth as a human aside from my work.

These ideas shifted for me in my late twenties after reading Big Magic by Elizabeth Gilbert. She normalizes that most artists work day jobs while making art on the side. And those artists aren’t lesser. That book helped me claim the title of artist.

Madelleine: Wow, something just clicked for me hearing you talk about how you would latch onto spaces of praise as a kid. I did this too. I was always praised for my intellect and my ability to analyse and other academic abilities, but rarely for my creative abilities (or maybe I just couldn’t hear it). So I made up a story that I wasn’t meant to be creative and that it wasn’t a part of my purpose in life — I was meant to be an academic. 

I love how Big Magic helped you to see yourself as an artist. I definitely struggle with a similar thing too — am I an artist if I am not making any kind of living from it? Or is it just an expensive hobby? 

I am doing a lot of inner work at the moment around my self-concept. First of all, believing I am good enough and that I don’t need to be extraordinary to succeed, but that my quiet, introspective, acoustic music from bed has value. And then I’m trying to transform this idea I have that I cannot be a successful artist from bed. First of all — what is success? I still haven’t figured it out. Is it a streaming count? A count of how many people purchased my music? Or how many lives were touched? And how many lives do I need to touch before I’m successful? Argh! Maybe I’ll know when it’s here. And then the question of “am I an artist when I can’t even play through a song?” I believe, rationally, that I am an artist, but my cells aren’t really feeling it yet. It will come — I’m working on it.

vōx: I relate to this so much. In your piece about embracing your disability, you talk about discovering that your real creative block was in your thinking. That you needed to shed your “able-bodied person thinking.” I love this. It feels profound, one of those thoughts that crashes through my brain and rattles my old beliefs.

I’d love to talk about being a disabled musician, and I want to start by shedding some of my own able-bodied musician thoughts. The first things that surface live in a deep well of grief, like you said, not being able to create the way my able-bodied peers can, and the loss of many of my creative abilities.

A decade ago, I could almost keep up with my peers. Or at least I pretended to. It was already pushing me toward the burnout state I live in now, but I didn’t see that then. All I could see were the pressures and expectations I thought I had to meet.

It takes real mental gymnastics to interrupt those old patterns and move toward something more sustainable. I try, but I’m not fully there yet. I still overdo it. What’s helped most is pulling back from constantly watching other people’s careers on social media. I couldn’t stop comparing until I stopped taking in that barrage of content I couldn’t keep up with.

How did your own journey of shedding able-bodied thinking as a musician unfold? And how did it lead you to recognizing value in all forms of creativity, even the smallest ones?

I know you’re also preparing to release your debut album soon. I’d love to hear about the overarching themes you explore on it.

Madelleine: Oh, I have the same grief! I feel so much sorrow for not being able to play and practice my instruments (flute, piano, voice) the way abled people do. The grief is huge and ever present, especially as I had given up my music when I was younger and didn’t spend time when I was able-bodied practicing and honing my craft. So regret is there too, in a gigantic way. 

It’s hard for me too to really wrap my head around how to truly be and create as a disabled artist and let go of the old thought patterns that just don’t serve me or my body. I can come up with new, more sustainable thoughts, but I find it hard truly internalising them. I don’t think my nervous system has truly caught up with my rational thinking. 

I still compare myself to able bodied artists and I want to be able to ‘compete’ with them or be seen as an equal to them, but I cannot create in the same ways and with the same technical precision or high energy.

I really try to tell myself that my music is equally valid, and that it has equal merit. My music is vulnerable, it’s delicate, raw, naked. You can feel my weak, unstable and shaky breath in my voice and flute. It’s part of the storytelling on my album. 

The album seeks to convey the experience of a broken body, deteriorating slowly with no sense of control. I explore the feelings and experience of when life becomes precarious, having to face stigma and discrimination, and of observing life differently when you are no longer a part of it, due to chronic illness. 

I explore themes of grief, guilt, regret, rejection and nostalgia, as well as the process from innocence and a belief in a just world, to the disillusionment of injustice and betrayal. 

With all that said, I still have periods where I don’t feel good enough, where I feel like I don’t have the right to play music because I’m too disabled. I still struggle with this immensely.

vōx: I feel your words right in my chest, Madelleine. I struggle with feeling good enough, too. If I don’t keep myself in check, I fall into comparison traps.

I love that you’ve distilled your experience of chronic illness into your album. I really believe it will be a light for others living in bodies that won’t cooperate. There’s been such a vacancy in music about chronic illness. So many people worldwide struggle with chronic illness, but there are so few artists writing music about the experience of it. It’s so needed.

Madelleine: Thank you so much! I feel like such an outsider as I write about the experience of chronic illness and I often wonder “will people want to hear about this?” I rarely mention chronic illness in my lyrics as such, so I do think any person who has experienced life’s interruptions will resonate — I hope. But yeah, every single lyric stems from my experience with a body that slowly breaks and how life is slowly taken away from you.

Sick Woman - Cuno Amiet - 1897

vōx: This is something that feels unique to living in a chronically ill body—feeling your life slowly taken away from you. I think the only way through this traumatic experience is through your practice of self-witnessing.

It’s something I do almost daily. I’ve been calling it “mothering myself.” I’ll place my hand on my heart, or stroke my own arm (it sounds strange, I know, but it helps), and speak to myself with tenderness. I validate my feelings. I say all the things I need to hear, tenderly and without judgment.

It’s been a godsend, especially for grief and anger. It’s wild how quickly an emotion can move through me once it feels seen. It loses all its power to spiral into hopelessness if I tell it it’s allowed to be here.

You’ve written so thoughtfully about moving through anger and grief. How have you been facing grief in your own life lately? What kind of self-witnessing thoughts have you been speaking to yourself?

Madelleine: Haha, I used to think the stroking your arm thing was weird too, but now I’ve met so many (chronically ill) people who do it, too. I think it’s a natural thing that unfolds when faced with that gigantic and never-ending form of grief as well as all the other emotions. It’s just too much at times and we are forced to be in our own company all the time so we have to be kind to ourselves, we have to be our own best friends and mothers and caretakers. I tried holding it all in and disassociating from all the emotions. All it does is bring more pain (both physical and mental) and I can’t live in my body because I’m so irritated and about to explode. So yes, self-witnessing and feeling your feelings has been a godsend for me too.

Lately, because I’m in the process of releasing singles prior to my debut album, my self-talk has been about not being or doing ‘enough’. As a disabled artist I feel like my voice isn’t powerful enough, my presence isn’t energetic enough, my skill set isn’t developed enough and so forth. During my recording process I had months at a time where I had to get off all social media (which cuts me off from the world) and sit with and work through all this ‘not enough-ness’ — it really brought me down. 

Some of the things I say to myself is that there is intrinsic value in being disabled. Our empathy is heightened, we’ve experienced a world of darkness, we’ve faced our own mortality more times than any abled person ever will — we go deep because of our disabilities and what we’ve experienced as disabled people in this world. I tell myself I don’t need a powerful voice, mine is delicate and raw, it shakes here and there and that is deep. 

And then there’s the grief — the grief of not being able to live up to my full potential (which is an odd thing that I need to work with too). The grief of not being able to practice my instruments (voice, flute, piano), of not being naturally inspired on a daily basis, the grief of losing a brain that once could handle the chaotic magic of creative flow. I say to myself every night: “I know you’re deeply frustrated, and it is very unfair. I know how much you yearn to create on demand, in flow. I know how much you yearn to sit at the piano and create for hours at a time.” I try not to come up with any ‘buts’, like “… but you managed to sit at the piano for five minutes yesterday!” None of that. Just allowing the grief and the frustration. I’m very frustrated lately.

vōx: I love what you said about the intrinsic value of being disabled. We really do have skills, profound ones, that many able-bodied people haven’t needed to develop yet at our age. Our endurance. Our hearts that are wide open to the suffering of others. The deep compassion we’ve cultivated for ourselves.

I completely agree that not having any ‘buts’ is one of the most important aspects of my self-mothering practice. I call it no mental judgements. Just letting the emotions flow without telling them they should be anything else. You can be angry. You don’t have to be grateful at the same time to try and make it more palatable.

Madelleine: Exactly! I really try to practice non-judgment. But towards myself as well as others. It’s hard (I’m a Virgo rising after all). But I think it’s such an important practice, because some of our biggest fears are that we are judged, whether it’s by our intimate partners, or parents or other people. And I think we can let go of that fear easier when we at least don’t judge ourselves.

vōx: You’ve spoken recently about pacing, how it’s not just about energy, but a whole way of life. Pacing has been a difficult concept for me to grasp. I think part of it may be my autism—I can get easily lost in flow states, and I struggle with interoceptive awareness.¹ My partner will often have to remind me to drink water or eat food!

I’d love to hear more about how you wrangle this beast. Do you have check-in times or reminders built into your day? How did you begin understanding what your body needs when energy is lowest?

Madelleine: Thank you so much for sharing that! My best friend has an autistic son and she often speaks about how he struggles with interoceptive awareness, but I had never thought of what that must be like when living with chronic illness and needing to pace. 

Pacing has become easy for me now that I’m mostly bedbound and I have very fixed routines. So physically I never overexert myself, it’s almost impossible with the routine I have. I live with my parents and they are a part of that routine. 

My biggest issue is pacing emotionally and mentally. I used to set a timer for 20 minutes when writing or creating. I’ve come away from that practice because it annoyed me. Now, I try my best to feel when it is time to stop. As soon as I feel acid in my brain or muscles (for example in my arms because of writing) I stop. Sometimes I miss the mark and I pay for it the next day. 

The other day, in the evening, I suddenly felt nauseous and sickly, and I knew I had done too much. Not physically, but my brain had been too active throughout the day. I had done absolutely nothing but think thoughts throughout the day — I think I was thinking about my branding strategy and how to create content on social media, but I wasn’t doing any work as such. But that thinking was too much, and I wasn’t able to catch it in time. That happens. 

I usually have the most energy in the mornings so when I wake up I do a check in. Some days I can feel that I have to just lie there for the rest of the day and maybe watch some reruns while relaxing my body. Other days I feel like I can do twenty minutes of this or that. I’ve become fairly good at deciphering how much I can do with the energy I have. I’ll pick a task that fits my energy level and do it. In that way I don’t have to feel my body too much during the task. I always have a menu of different tasks written down on a google doc. I’ve broken the tasks down into as tiny increments as possible. 

My problem is stopping before it’s too late — especially because I am so incredibly bored. I can usually rectify it by radical relaxation (especially mental relaxation) immediately afterwards. But after being bedbound for so many years, I’m so bored! Existentially bored! And boredom hates rest.

Carmen Lomas Garza - La Curandera - 1989

vōx: I like the idea of your task menu, especially with the energy levels built in.

Being autistic, I’m very routine focused. Recently, I’m starting to really understand the energy needed for tasks I do for work. I usually give myself 1-3 work tasks per day, starting with the most important, letting the later tasks be things that if they don’t happen that day it’s ok. And each task is around 30 minutes to an hour of time to complete.

It’s been working! It also helps my executive functioning² because I only see these few items per day on my schedule. I’m not staring down a giant to-do list anymore. That would paralyze me. I never knew where to begin.

The boredom you mentioned is so real. I think our culture has also trained us to be dopamine fiends due to the pace of intake, entertainment and social media. Many of us feel even 5 minutes waiting in a line to be so torturous, we immediately turn to our phones for relief. Folks who are able-bodied would probably have a hard time imagining they could over exert just their mind and need to rest without thought.

Even though I still get restless and a bit batty when I can’t do much, I’ve cultivated an incredible patience practice. It’s even allowed me to get back into low-dopamine activities too, like reading and puzzles, on the days when my brain allows.

Madelleine, this conversation has been such a gift. Thank you for opening up. Before we close, I’d love to hear a few things that have been bringing you joy lately. And if there’s anything else you’d like to share?

Madelleine: Thank you so much, it was wonderful to speak to you too! Oh so many things have brought me joy lately. My mom’s sisters came to take over my parent’s care duties so they could go to Berlin and see my brother. And my parents were so overjoyed and happy when they came back, having spent time with my brother on his turf and they went to one of his concerts as well. And I had fun with my aunties! We watched the new Bob Dylan movie (A Complete Unknown), the new Paul Simon documentary (In Restless Dreams) and an episode of Somebody Feed Phil (in the Basque region). 

Having released three singles and a new one coming on Friday has given me so much joy as well. I just love hearing how people love the music and what they felt listening. 

Also, I get a mango/pineapple smoothie with a chocolate ganache bar (basically chocolate ganache made with oat milk on top of a layer of almonds and oats baked with ghee and honey) for snack time. YUM! That brings me joy.

Check out other pieces in my series:

1. Interoceptive awareness refers to the ability to sense and interpret internal bodily signals, like hunger, thirst, pain, or the need to rest. Many autistic people experience differences in interoception, making it harder to notice or respond to these cues accurately.

2. Executive functioning refers to a set of mental skills like working memory, flexible thinking, and self-control. Many autistic people experience challenges with these skills, making tasks like organizing, initiating, or switching between activities more difficult, especially under stress or sensory overload.