I think it’s so important we remember that it’s not either or. You can accept your disabilities and lean into accommodation - that doesn’t necessarily mean you have to give up hoping for a cure/improvement.
Thank you for sharing how you adapted the creative process for your ME/CFS - it was a fascinating window into your world!
Hi Madeline. I appreciate your writing. From one songwriter to another... sending peace. I used to get things done and make things happen FAST. I used to do a video podcast at 11 am and I'd be up at 7 to get a song written for that episode. I took on so much and often did many things at one time.
I find it hard to embrace as I still feel I am trying to get back to what I was in the before times. Acceptance and patience needed yet in short supply.
Thank you Madelleine. I always appreciate your honest wisdom. Yes to creating with the disabled bodies we have now, rather than who we were or hope to be again ‘one day’. We need your delicate voice, whenever you are able to share it.
Music has been in the world far longer than either ableism or capitalism and will live on far longer into the future. Your music is perfect.
And yes, I have a hard time accepting my disability. I’ve spent so many years believing my own lies about my limitations. Believing society’s lies about not trying hard enough. Even after a lifetime of being *other* people’s ally, it’s hard to be there for myself without shame.
I absolutely struggle with acceptance because I feel like I straddle two worlds, abled work (I work remotely in a day job) and the reality of me not being able to do much outside of that. It often feels messy and contradictory.
Ah yes. I can see that being messy and contradictory (and that’s totally ok, we don’t have to be perfect at acceptance, I’m for sure not). I remember when I was in that situation and I was completely unable to accept my disability. It’s such a hard space to get to.
A beautiful read, Madelleine, thank you. I have been through a similar journey of changing the way I thought about my body and chronic illness, and how I therefore showed up in my life. I found it amazing how, when I was trying to approach my life believing I was on the brink of becoming ‘fixed’ (and therefore no need to accept my body as it was), everything was so hard, like wading through tar. When I was able to approach life from a greater place of acceptance for my chronic illness and its impact on my body, I feared that I’d be consumed by it and wouldn’t be able to do any of the things I loved… but the opposite became true and life somehow felt easier.
You always seem to write what I am thinking. Writing was like breathing, the whole way through highschool and university I was writing - through classes, in breaks, on weekends, after school... I have notebooks and notebooks full. Then I got sick in the first few years of real life and while it didn't happen overnight, I slowly couldnt keep it up and work. I couldn't find the energy. The last 10 years have seen me buying notebooks and staring at them guiltily on my shelf or opening a story I was working on and after around 20mins walking away. This year I finally have come to terms with how I want to write is not how its going to happen. My brain doesnt work the same anymore. If I want to write then its going to happen with a hot blanket wrapped around me for pain and in short bursts. Its okay to only write a few sentences. Thats still more than yesterday. Thank you for sharing. Do you have any of your work online?
Hi Cassee, thank you so much for sharing your experience! And yes, it’s a (painful) process, and one with much grief, to come to terms with one’s disability and having to do things differently. And no, my music isn’t online, I still need sime final touches and then off to the mixing engineer. Hopefully spring next year I’ll be able to share.
I am just reaching a new acceptance having been ill since about 1993, I've had a bad flare up for the last year, and my latest post is about acceptance and coping with ME and Fibromyalgia and living life at a much slower pace! How exciting about your album! Love it!
That’s a really long time being ill, and so sorry to hear about the flare up! Why don’t you share your post here in case people want to read it? If it feels right to you ❤️🌸
Those song words are epic! So much insight, so much knowing coming through. So in answer to what do I know? You know a great deal. Thank you for sharing this with us.
And in having the special interest in belief that I do, I love this: “I still believe in recovery and a future where I’m not bedbound”
I adore your voice so I will be queuing up for your album when it is ready. And I can be patient waiting💠
I think it’s so important we remember that it’s not either or. You can accept your disabilities and lean into accommodation - that doesn’t necessarily mean you have to give up hoping for a cure/improvement.
Thank you for sharing how you adapted the creative process for your ME/CFS - it was a fascinating window into your world!
Thank you! And yes, not either or, or yes and have been very valuable life lessons for me.
For me as well - and hard ones to learn. Accommodating can feel like giving up - and I think it prevents a lot of us from doing what our bodies need.
It’s the hardest thing! It feels a bit like juggling in the beginning until you realise you can hold all the balls in your hand at the same time.
14 years after becoming disabled and there are still parts of me that’s bitter. I’m trying to embrace it but it’s hard to do
It’s sooo hard, I really hear you! I hope you can give lots of love and care to the bitterness too — if that feels right to you.
Hi Madeline. I appreciate your writing. From one songwriter to another... sending peace. I used to get things done and make things happen FAST. I used to do a video podcast at 11 am and I'd be up at 7 to get a song written for that episode. I took on so much and often did many things at one time.
It's a whole different world now. I've had to slow the creative process down so much. I have a friend with ME/CFS who wrote a book of poetry 15 minutes at a time over the course of 2 years. His story is here... https://open.substack.com/pub/halwalker/p/missingneighbor?r=16r6sg&utm_campaign=post&utm_medium=web
Keep going Madelleine. I look forward to hearing your songs. ❤️ Hal
And thank you for the link, I skimmed the transcript (can’t listen to podcasts unfortunately), what an insightful conversation 🌸
Yes, the process becomes soo slow, and at times completely impossible. It’s amazing what we can do with patience though.
I find it hard to embrace as I still feel I am trying to get back to what I was in the before times. Acceptance and patience needed yet in short supply.
It”s so incredibly hard! Especially when we can’t compensate for the disability.
Thank you Madelleine. I always appreciate your honest wisdom. Yes to creating with the disabled bodies we have now, rather than who we were or hope to be again ‘one day’. We need your delicate voice, whenever you are able to share it.
Thank you, Michelle 🥰💕
Most days I think I've embraced my disabilities, and then something sneaks up on me that still needs...work.
Thank you for this piece. There's a lot to think about here. I am looking forward to hearing your album when you release it!
Yes, it’s not a linear black and white thing, there are ups and downs in acceptance. And thank you!
Music has been in the world far longer than either ableism or capitalism and will live on far longer into the future. Your music is perfect.
And yes, I have a hard time accepting my disability. I’ve spent so many years believing my own lies about my limitations. Believing society’s lies about not trying hard enough. Even after a lifetime of being *other* people’s ally, it’s hard to be there for myself without shame.
So true re music! Thank you for that one. Acceptance is so incredibly difficult, especially in this ableist society.
I absolutely struggle with acceptance because I feel like I straddle two worlds, abled work (I work remotely in a day job) and the reality of me not being able to do much outside of that. It often feels messy and contradictory.
Ah yes. I can see that being messy and contradictory (and that’s totally ok, we don’t have to be perfect at acceptance, I’m for sure not). I remember when I was in that situation and I was completely unable to accept my disability. It’s such a hard space to get to.
A beautiful read, Madelleine, thank you. I have been through a similar journey of changing the way I thought about my body and chronic illness, and how I therefore showed up in my life. I found it amazing how, when I was trying to approach my life believing I was on the brink of becoming ‘fixed’ (and therefore no need to accept my body as it was), everything was so hard, like wading through tar. When I was able to approach life from a greater place of acceptance for my chronic illness and its impact on my body, I feared that I’d be consumed by it and wouldn’t be able to do any of the things I loved… but the opposite became true and life somehow felt easier.
Oh I love this! Thank you for sharing, Alana 🌸
You always seem to write what I am thinking. Writing was like breathing, the whole way through highschool and university I was writing - through classes, in breaks, on weekends, after school... I have notebooks and notebooks full. Then I got sick in the first few years of real life and while it didn't happen overnight, I slowly couldnt keep it up and work. I couldn't find the energy. The last 10 years have seen me buying notebooks and staring at them guiltily on my shelf or opening a story I was working on and after around 20mins walking away. This year I finally have come to terms with how I want to write is not how its going to happen. My brain doesnt work the same anymore. If I want to write then its going to happen with a hot blanket wrapped around me for pain and in short bursts. Its okay to only write a few sentences. Thats still more than yesterday. Thank you for sharing. Do you have any of your work online?
Hi Cassee, thank you so much for sharing your experience! And yes, it’s a (painful) process, and one with much grief, to come to terms with one’s disability and having to do things differently. And no, my music isn’t online, I still need sime final touches and then off to the mixing engineer. Hopefully spring next year I’ll be able to share.
I am just reaching a new acceptance having been ill since about 1993, I've had a bad flare up for the last year, and my latest post is about acceptance and coping with ME and Fibromyalgia and living life at a much slower pace! How exciting about your album! Love it!
That’s a really long time being ill, and so sorry to hear about the flare up! Why don’t you share your post here in case people want to read it? If it feels right to you ❤️🌸
https://open.substack.com/pub/audhdpainter/p/giving-up-gaslighting?utm_source=share&utm_medium=android&r=3x6x3y thank you x
Those song words are epic! So much insight, so much knowing coming through. So in answer to what do I know? You know a great deal. Thank you for sharing this with us.
And in having the special interest in belief that I do, I love this: “I still believe in recovery and a future where I’m not bedbound”
I adore your voice so I will be queuing up for your album when it is ready. And I can be patient waiting💠
Thank you as always for your words and reflections, Amber! ❤️🌸