How I created my album from bed and wheelchair

It’s almost been a year since I release my first single and I wanted to share my story

Hi friend!

Last year I shared my story with my old newsletter — but since a lot of you here are new, I wanted to share it again. It’s story time!

Between 2015 and 2019, when my illness was turning from mild to moderate and later severe ME (also known as ME/CFS), I wrote a whole lot of songs — enough for an album.

I’ve written songs since I was twelve, but never thought they were something I could share. I thought being a singer songwriter was something one was born to be, not something you worked to become.

When I got ME back in 2011 it changed my voice. At some point, it hurt so much to speak that I was in constant pain, even when I didn’t open my mouth. I loved singing, it relaxed me (except for the pain) so I sought out a voice teacher to get my voice back.

During a session she said to me: “You know, it seems like you have a lot to tell the world.” I did! She hit a nerve in me and I went home and started writing songs again.

They sucked at first, but I was having fun, and I started to go deeper into the practice. I created a lyric diary and started listening intensely both to external words and sounds as well as to internal words and sounds. I studied lyrics and poems I liked and wrote down why I liked them, and I started listening to music as a songwriter, not just an audience.

I remember the day I wrote the first song that I actually liked and was proud of. It’s called Where Cold Hearts Go To Pray and is on my album. I felt I had arrived and I produced more and more songs that I loved and felt were important.

I continued taking voice lessons with a different teacher over Skype — I wanted to be good enough to record — but my health and therefore my voice got worse and worse and had to stop taking lessons. I eventually became bedbound and at some point had lost my voice completely, only being able to speak in whispers.

With medication I got a bit better (some medication directly targeted my voice), enough to be able to do a minute or so of voice work from bed here and there. While I was able to recover parts of my voice, I had lost my belt (the powerful part of the voice) and my head voice had shrunk so much that I wasn’t able to produce clear sounds at the top of my voice. I had to change the expression in my songs to a lighter, more delicate voice, some I also had to transpose down, but it turned out for the better, because that delicate and darker voice really suits my songs.

In late 2020, Kara Jane (who died from very severe ME in January 2023, may she rest in peace) released a beautiful album, which she had created from bed. She spoke about how she had recorded one line at a time, and I was inspired.

With help from my brother (a professional musician) and my father we created a recording set-up that was doable for me. By early 2021 it was ready.

I have my recording gear set up right next to my bed, my microphone is on a stand with wheels so it’s easy to adjust and my wheelchair reclines so I can lie down while recording. All I had to do was place myself in the wheelchair (which some days was all I could do) and turn on the computer and sing that one line or one verse and then go back to bed.

All the prep work on the computer (like setting up the recording in Logic Pro) as well as any editing, rough mixing, scoring or keyboard work I would do on separate days in bed when I had the energy. A few more songs I wrote from bed using my ipad and an external keyboard.

I would then wait for a good day where I had energy in the morning to slowly warm up my voice while lying in bed and then record a verse, or sometimes just a line, in the afternoon using my recording setup with my reclined wheelchair.

Sometimes it would take months to find a good voice day. Most days I’m not able to produce a doable sound as my vocal chords are often very swollen or there is just not enough physical energy available in the body to push proper sound through my throat. I only have a doable singing voice for about two or three periods during the year. Sometimes I would record a verse and then have to wait half a year to record the next one.

Recording the flute was another story. The first time I recorded it from my wheelchair I got so sick that I didn’t play for a year after that. I had overestimated how much energy it takes to hold the flute.

Eventually, I found a way to play from bed, but I never managed it without crashing afterwards no matter how much I paced. My father would help me with the setup and my elbows were propped onto two yoga blocks and I was fully supported with pillows. I managed to record most of the flute this way. Honestly, it was so hard and painful and I’m not doing that again unless I get better.

In the past year my muscles have gotten stronger with medication and for the last couple of songs I was able to record a verse at a time while sitting upright in my wheelchair, and then immediately lying back down in the reclined position to avoid overexertion. I was even able to record the flute while sitting upright, with my elbows propped up on yoga blocks, but I had to be very careful to only record a single line and not for more than a few minutes at a time — and I still crashed.

My story is not meant as inspiration porn or as ‘you can overcome any limitation if you just set your mind to it’ message. I had long periods where doing this was completely impossible, and it was only because I got a bit better with medication that it was doable. I also still grieve the loss of my once powerful voice that always worked, although I have accepted the more delicate one. My message is that creativity is vital for many of us and should be prioritised if at all possible.

Making this album has also come with a lot of grief. I often feel 10% pride and 90% sorrow, because this was not how I imagined a recording process to be: All alone in a darkened room, waiting, often for months at a time for my voice to open up, not knowing if it ever will again, only to record one verse. I also grieve that I cannot market it in the way I would like, or be able to play the songs live, or even just online on a video.

I simply want to express that it was damn hard to create this album but perhaps there are techniques that might inspire you to create your own creative work. I can say for sure that chopping everything up into tiny pieces, mustering up an insane amount of patience, pacing like I’ve never done before, and finding tons of motivation to be heard was the only way I could do this. This was not done through hard work and pushing through! Also, without a deep, spiritual motivation, this would not have been possible.

And please be kind to yourself — there are just periods (some times excrutiatingly long or endless ones) where chronic illness or trauma or your body or mind prevents you from doing any creative work. This does not mean you are not creative or have failed in any way.

It was also made possible because of great privilege. I have a brother who is a professional musician who could play the piano for me and help me with other musicians. I also live with parents who have the resources to help me out financially and medically. I couldn’t have done this without medication or the professional-standard care my parents provide. Creating music is also expensive and I’m not earning anything from the album, all income goes to ME/CFS research through Open Medicine Foundation.

The songs seek 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.

You can listen to or buy the album here.