This is what happened when I tried to embrace my disability/illness (at least for a minute)

I discovered that my true creative block was my thinking: I was thinking like an able-bodied person.

A few years ago, a purposeless disco would form in my mind whenever I closed my eyes. Multi-coloured laser-like beams of light and broken, technicolor images, like pink elephants in tutus, would zoom haphazardly around inside my mind. It was painful and maddening.

 Photo by Lucas K on Unsplash

I eventually found medication that dampened the disco, but I was left with a brain that couldn’t produce images or synthesize ideas effectively. I felt like my creativity was gone and my connection to myself and something higher than me was put on hold.

I’ve lived with ME/CFS since 2011 and have been 99% bedbound for more than six years. I started writing songs before I was bedbound and could still sit at the piano for longer periods at a time. It was magical to sit in creative flow and observe the insightful music and lyrics that flowed through me. 

While I managed to write enough songs for an entire album, I wasn’t sure if I would ever be able to record them, let alone write new songs, as my body was eroding and my mind felt empty. The way I used to write songs was by closing my eyes, going into a meditative state and observing the pictures, words and feelings forming inside my mind — an exercise inspired by Salvador Dali. But this had become impossible, as neuroinflammation prevented me from moving into a meditative state, let alone seeing anything forming inside my mind. My voice had also become weaker as my body had gotten worse.

I had to find new ways of creating and producing from bed. I discovered that my true creative block was my thinking: I was thinking like an able-bodied person. I thought the only way to record was in a studio, or at least standing up, singing everything in one go, giving it all, singing with a perfect and loud voice, singing until perfection — one more time with feeling. And the only way to create new songs was through the chaotic creative flow that required hours of energy. 

But I was disabled and had to start thinking like one.

 So I set up my recording gear right next to my bed and whenever I had days where my voice would open up — this happened about three times a year — I would record a single verse or even just a single line from my bed or reclinable wheelchair. 

Instead of thinking about my voice as ‘weak’, I started to describe it as ‘delicate’ and ‘emotive’. A lot of talent shows seem to promote the powerful, loud, Diva-like voices and mine is nowhere near that. I know, as a musician, that all voices matter and are beautiful in their own right and I’ve been working on accepting my voice as it is. I’m still working on this. 

The recording process has taken me almost four years so far, and with my brother’s help on the piano, we managed to record most of the album. I still have a few songs left.

I also had to change the way I wrote songs as I couldn’t rely on my brain the same way. I often use the exercise I call ‘Word Dumps’ to help me express what I’m feeling. I skim different texts and find words that give me a visceral feeling. It’s like a ‘yes button’ is turned on in my body when I find the right words. I then add them to my own words in a very intuitive way and eventually I have the lyrics for a song. By finding words that give me a visceral feeling it feels like I’m communicating with my subconscious and I often unearth hidden messages about how I’m truly feeling in the words I find. 

Here are words I recently found:

Tiger-striped

Storyless

Obedient

Tolerance

And I turned it into a verse:

Tiger-striped fish in my dreams 

Last night

I am a storyless tale

Obedient to anger am I

My tolerance wears thin

But what do I know

A lot of well-meaning people often tell us to ‘not let illness define you’ (I’ve written about how this can be problematic here), but I had to — at least for a moment — fully identify with and embrace my illness and disability in order to find a way to record my album that suited my bodymind. I still believe in recovery and a future where I’m not bedbound, I don’t see it as an ‘either or’, simply a ‘yes and’: Yes. I embrace my disability and accept my bodymind where it is, and I have hope for a better future. 

This is not a static state, I cannot tell you truly that I have embraced my disability and illness because I have days where I certainly have not. I also have days where it’s hard to accept my more delicate voice — I have days where I want to throw the entire album out because it’s not done in the able-bodied way. But in some moments acceptance is valuable in order to challenge my thinking and the way I do things.

I do want to say that this requires at least some function. I could only do this because medication helped me become stable and soothed some of my symptoms. I’m also very privileged and have parents who can still care for me, which means I can spend the tiny amounts of energy I do have once in a while on my creativity. Not everyone is as privileged. There are periods with chronic illness where nothing is possible, and that’s ok too — it doesn’t mean you’re doing anything wrong. 

Recording my album is in no way inspiration porn nor a message of “you can do it if you set your mind to it.” It has taken a gigantic load of patience and deliberate pacing, combined with medication and lots of support. I’m in a deeply privileged position.  

Tell me…

Would you do/be able to do anything differently if you fully embraced your disability and illness - if only for a moment?

Do you find it hard to embrace your disability and illness? If so, why? 

What are your biggest dreams right now?

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?

To hope or not to hope when living with chronic illness

Tiny creative acts: How I stay creative amidst chronic illness

“Don’t let illness define you,” they say. But this could be problematic

Meditation: Soothing our system through acceptance

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