Thank you for using your precious creativity to write these posts, Madelleine. I keep reminding myself: forward is forward. In 229 days I have written nearly 50,000 words of a first draft. I ask myself to write even one sentence. A few days I write as much as 500 words. I have missed many days. This is more than I wrote when I was healthy. The irony is not lost on me.
Wow congratulations on the 50,000 words, that’s amazing given the circumstances. And yes, I wonder if we are more motivated to be creative when living with illness? It is ironic nevertheless.
Thank you! I am more motivated. Its one thing I can move forward right now. The book has reduced my substack writing - I’ve struggled to do both the last four months.
Why, thank you Amber ☺️ Its sort-of a memoir. Working title is The Geometry of Grief: Life lessons from the death trade. Because being alive is often about dealing with inevitable deaths, including - eventually - our own. I started out trying to keep myself out of it, except as a witness, but of course my own life experiences outside of work sometimes turn out to be relevant. We all go through an apprenticeship in death. Its a tragi-comedy.
Very intriguing! And a big, much needed to be talked about, topic. Memoir is my favourite genre. And yes to the bringing in of your own experiences! I’m sure us readers would want some insight into that too.
Thank you Amber, definitely a much needed topic. I wasn’t so fond of Memoir when it was all Great Men and Celebrities, but I love the perspectives you can get from other people’s lives. We’re all part of this dysfunctional human family.
I’ve never been a celeb fan and only read non-celebrity ones, I truly believe we need to share our stories. There is such a wealth of information, lessons and teachings we can learn from others when we do.
I give it easier to write notes here on Substack than open a document and write so have started taking screenshots and using them as springboards for more in depth writings or a curated storytelling piece.
I’m learning that if I want to create pottery it has to be doable within my energy limit of about an hour sitting upright at a time so spread over several days.
Really loving you sharing how 5 minutes is actually ok timeframe to be creative in. I used to go a million miles an hour and adjusting to being chronically fatigued is one hell of change that you and others on Substack are helping me develop.
That adjustment from going a million miles and hour to having to think of every minute is so hard and heaetbreaking too. Smart re the Substack notes, it’s all about finding mediums that work for you. So glad you’re able to do a bit of pottery, too!
This is lovely!! So comforting to think of you, in your home, doing your tiny creativity, me in my doing mine. I have Long Covid and on good days at the moment I can get half an hour of writing done, which I remind myself is gargantuan progress. To help me not get carried away I have a very pretty half-hour glass, the kind with sand in it. Helps.
Other small manageable acts of creativity:
- Painting, but like, just blobbing paint onto paper and swooping it around
- Going on real estate sites to choose homes for my novel’s characters to live in
- Lists of things I’d like to do when I feel better / things I like about my life now
- Use really nice pencils to draw tiny colourful boxes on a page
- Sing the song We Don’t Talk About Bruno from Encanto or You’re Welcome from Moana
- Listen to Lana Del Ray and picture a very dramatic scene to go with her songs
I'm recovering from a TBI, and in the early days I had to learn what you've written about here--how to be OK with small/short creative acts. I began with writing by hand, for 5 minutes at a time. It was both frustrating and rewarding. I appreciated more than I ever had how much being able to write means to me. Now that I can write on a screen again, and for much longer periods (though still not as I once could), it feels like a tremendous gift. I love all your suggestions here, and I'm going to pull this out to revisit when I'm feeling stuck in the future.
It’s amazing how much meaning creativity can give to our worlds, especially when it has become so limited. I’m so glad you’re able to write again, albeit with lots of limitations, but yes, I too am so grateful for the little I can do.
Yes, because--like you said--when you can't it can be so boring! I've always said that I am never bored, but I really had to learn how to tolerate that when I couldn't do pretty much anything.
Bored without any capacity to entertain ourselves or even be entertained, is a particular cruelty. All the sting of salt in the wound, without the healing element.
I’m a poet so I write a line a day. It could be for a poem I’m working on or a stand alone line. I star the stand-alone lines I like the best to add to or create another poem. Sometimes I try to write a few specific observations from my day- to practice observing y paying close attention. Revising is the hardest because I need more time y brain power. I usually save that for good days. I also try to close read a poem a day, to understand how it works. Reading is part of the creative process. I also create word banks and then use them to write a line or two. It’s slow but I e had several poems published last year. I enjoy reading everyone’s practice. Sloth 🦥 writing!💜
Thank you so much for sharing your process, I love this! Good idea to add reading to your list, I do that too. I really want to get better at observing and paying attention to the external world, but when all I see is my room it’s a bit boring… actually it’s terribly boring. I have thiught of dinding a photo and then describing it, but ai haven’t found the right motivation yet. Would love to read your poems, do you have a link?
I love the doing what you can when you can approach and meeting your body where it’s at. I haven’t find any other way. When I started writing (outside of journalling), it was one word at a time from a place of severe and agonising pain. Eventually I could share a post every few weeks. Gradually turning into blogs. I started writing poems as a way to get words down quickly but I didn’t see myself as a creative or as a poetry writer for a very long time. I do look forward to reading your memoir, it’s my favourite genre!
Thank you - they really are good. I can see this only for the first time now. And the reason I didn’t believe myself to be a poetry writer before now? Because I didn’t follow any rules 😆 enough said😅
I find it inspiring that you’ve managed to continue writing music.
I find starting and stopping tasks the hardest, and have very little discipline when it comes to limiting the time I spend on my creative pursuits. Except for music, I’ve dabbled in just about everything over the years: cross-stitch, machine embroidery, sewing, knitting, digital and traditional drawing, and writing. I transition as inspiration, symptoms, and energy levels dictate.
Losing access to our inner world resonates so much with me. Some people think because I spend all my time in bed I have ample opportunity to do all my creative pursuits. When the reality is most of the time I’m sick in bed I would be lucky to string together a coherent sentence. I’m not a singer songwriter but I was a musical theatre critic - and I miss it desperately. Too sick to attend theatre and even if I could - critiquing it would be impossible.
Thank you for sharing the accessible ways you still access your creativity - it’s so important to hang onto whatever we can!
Exactly! It’s very difficult for a lot of people to comprehend how illness affects the brain and especially our creative pursuits. Ooh yeah, it’s hard to chop a musical theatre into five minute increments, let alone critiquing it cos you need a coherent overview. I can really see how you must miss this!
Yeah you have to have the stamina to sit for 2.5 hours and then be able to write on a very tight deadline - definitely not a good fit for the chronically ill! But at least I can still listen to cast recordings from bed :)
I’m grateful you’re calling attention to this. I feel people struggle to comprehend the physical limitations many of us have because we often look “fine”… but even if you can get someone to understand the physical limitations- getting them to understand the mental is so much harder! I call it my blender brain.
‘Blender brain’ that’s a good one! Getting people to understand the mental part of it is soooo hard, I even struggle to describe it myself, especially because absolutely nothing compares. I’m glad you can listen to cast recordings! Although I know it’s nowhere near the same.
I’ve been doing a lot of bed stretches and somatic releasing. Working with my therapist on the best ways to continue this practice. I also try to journal 📓 physically as opposed to on my phone. On days that are really bad, I’m happy to just put up a one liner or sing!
Bed stretches and somatic releasing sound like wonderful self-care practices and so important. So glad to hear you’re journaling and get a one liner in or singing a bit — it can create so much well-being just doing a bit.
Thank you for using your precious creativity to write these posts, Madelleine. I keep reminding myself: forward is forward. In 229 days I have written nearly 50,000 words of a first draft. I ask myself to write even one sentence. A few days I write as much as 500 words. I have missed many days. This is more than I wrote when I was healthy. The irony is not lost on me.
Wow congratulations on the 50,000 words, that’s amazing given the circumstances. And yes, I wonder if we are more motivated to be creative when living with illness? It is ironic nevertheless.
Thank you! I am more motivated. Its one thing I can move forward right now. The book has reduced my substack writing - I’ve struggled to do both the last four months.
Ah yes, that’s the annoying part: we can only do one thing at the time… I’m focusing on Substack right now as I feel my book is too hard to write.
Only my writing group sees my draft, that helps. One day we’ll arrive at a place where we’ve got substack and book done 🤞🏻🙏🏻❤️
Yes! One sunny day!
I feel like I can’t wait to read this book but I don’t even know what it is you’re writing 🙃Is it a memoir?
Why, thank you Amber ☺️ Its sort-of a memoir. Working title is The Geometry of Grief: Life lessons from the death trade. Because being alive is often about dealing with inevitable deaths, including - eventually - our own. I started out trying to keep myself out of it, except as a witness, but of course my own life experiences outside of work sometimes turn out to be relevant. We all go through an apprenticeship in death. Its a tragi-comedy.
Very intriguing! And a big, much needed to be talked about, topic. Memoir is my favourite genre. And yes to the bringing in of your own experiences! I’m sure us readers would want some insight into that too.
Thank you Amber, definitely a much needed topic. I wasn’t so fond of Memoir when it was all Great Men and Celebrities, but I love the perspectives you can get from other people’s lives. We’re all part of this dysfunctional human family.
I’ve never been a celeb fan and only read non-celebrity ones, I truly believe we need to share our stories. There is such a wealth of information, lessons and teachings we can learn from others when we do.
So many great inspiring suggestions here. Love the bedazzle a word option for a micro moment of creativity.
Thank you! And yes, it’s my favourite thing to do when pooped 🌻
I give it easier to write notes here on Substack than open a document and write so have started taking screenshots and using them as springboards for more in depth writings or a curated storytelling piece.
I’m learning that if I want to create pottery it has to be doable within my energy limit of about an hour sitting upright at a time so spread over several days.
Really loving you sharing how 5 minutes is actually ok timeframe to be creative in. I used to go a million miles an hour and adjusting to being chronically fatigued is one hell of change that you and others on Substack are helping me develop.
That adjustment from going a million miles and hour to having to think of every minute is so hard and heaetbreaking too. Smart re the Substack notes, it’s all about finding mediums that work for you. So glad you’re able to do a bit of pottery, too!
This is lovely!! So comforting to think of you, in your home, doing your tiny creativity, me in my doing mine. I have Long Covid and on good days at the moment I can get half an hour of writing done, which I remind myself is gargantuan progress. To help me not get carried away I have a very pretty half-hour glass, the kind with sand in it. Helps.
Other small manageable acts of creativity:
- Painting, but like, just blobbing paint onto paper and swooping it around
- Going on real estate sites to choose homes for my novel’s characters to live in
- Lists of things I’d like to do when I feel better / things I like about my life now
- Use really nice pencils to draw tiny colourful boxes on a page
- Sing the song We Don’t Talk About Bruno from Encanto or You’re Welcome from Moana
- Listen to Lana Del Ray and picture a very dramatic scene to go with her songs
Ooooooh I love love love these!! And yes, so cozy to think of us in our homes doing our tiny acts of creativity ❤️
I'm recovering from a TBI, and in the early days I had to learn what you've written about here--how to be OK with small/short creative acts. I began with writing by hand, for 5 minutes at a time. It was both frustrating and rewarding. I appreciated more than I ever had how much being able to write means to me. Now that I can write on a screen again, and for much longer periods (though still not as I once could), it feels like a tremendous gift. I love all your suggestions here, and I'm going to pull this out to revisit when I'm feeling stuck in the future.
It’s amazing how much meaning creativity can give to our worlds, especially when it has become so limited. I’m so glad you’re able to write again, albeit with lots of limitations, but yes, I too am so grateful for the little I can do.
Yes, because--like you said--when you can't it can be so boring! I've always said that I am never bored, but I really had to learn how to tolerate that when I couldn't do pretty much anything.
Yes, and this is a whole other level of boredom, I think it needs a new word, because it often feels beyond boredom,
I like, though, the "dom" on the end of "boredom" and how it suggests that boredom is a place. Like a kingdom, a whole world of its own.
Oooh yes, so true! Good observation!
Bored without any capacity to entertain ourselves or even be entertained, is a particular cruelty. All the sting of salt in the wound, without the healing element.
So true!
These are really helpful ways to stay creative. Along side taking care of ourselves and resting too. I’ve had to learn that.
Ah yes, resting and self-care are vital to the creative process 🌸
I’m a poet so I write a line a day. It could be for a poem I’m working on or a stand alone line. I star the stand-alone lines I like the best to add to or create another poem. Sometimes I try to write a few specific observations from my day- to practice observing y paying close attention. Revising is the hardest because I need more time y brain power. I usually save that for good days. I also try to close read a poem a day, to understand how it works. Reading is part of the creative process. I also create word banks and then use them to write a line or two. It’s slow but I e had several poems published last year. I enjoy reading everyone’s practice. Sloth 🦥 writing!💜
Thank you so much for sharing your process, I love this! Good idea to add reading to your list, I do that too. I really want to get better at observing and paying attention to the external world, but when all I see is my room it’s a bit boring… actually it’s terribly boring. I have thiught of dinding a photo and then describing it, but ai haven’t found the right motivation yet. Would love to read your poems, do you have a link?
No link yet for my poems. It’s on my list, but very little getting done at the moment.
I love the doing what you can when you can approach and meeting your body where it’s at. I haven’t find any other way. When I started writing (outside of journalling), it was one word at a time from a place of severe and agonising pain. Eventually I could share a post every few weeks. Gradually turning into blogs. I started writing poems as a way to get words down quickly but I didn’t see myself as a creative or as a poetry writer for a very long time. I do look forward to reading your memoir, it’s my favourite genre!
Ah yes the one word at a time tiny act is great too. I bet your poems were/are wonderful!
Thank you - they really are good. I can see this only for the first time now. And the reason I didn’t believe myself to be a poetry writer before now? Because I didn’t follow any rules 😆 enough said😅
Ha!! I totally get this though. I felt like that with my music for a long time. It qas so intuitive and easy I felt I must be missing something.
Such great ideas. Thank you for sharing!
Thank you, Amy 🌻🌸
I find it inspiring that you’ve managed to continue writing music.
I find starting and stopping tasks the hardest, and have very little discipline when it comes to limiting the time I spend on my creative pursuits. Except for music, I’ve dabbled in just about everything over the years: cross-stitch, machine embroidery, sewing, knitting, digital and traditional drawing, and writing. I transition as inspiration, symptoms, and energy levels dictate.
Thank you! And yes, it’s been so hard! My motivation has kept me going, I felt like I had something to share with the world…
Losing access to our inner world resonates so much with me. Some people think because I spend all my time in bed I have ample opportunity to do all my creative pursuits. When the reality is most of the time I’m sick in bed I would be lucky to string together a coherent sentence. I’m not a singer songwriter but I was a musical theatre critic - and I miss it desperately. Too sick to attend theatre and even if I could - critiquing it would be impossible.
Thank you for sharing the accessible ways you still access your creativity - it’s so important to hang onto whatever we can!
Exactly! It’s very difficult for a lot of people to comprehend how illness affects the brain and especially our creative pursuits. Ooh yeah, it’s hard to chop a musical theatre into five minute increments, let alone critiquing it cos you need a coherent overview. I can really see how you must miss this!
Yeah you have to have the stamina to sit for 2.5 hours and then be able to write on a very tight deadline - definitely not a good fit for the chronically ill! But at least I can still listen to cast recordings from bed :)
I’m grateful you’re calling attention to this. I feel people struggle to comprehend the physical limitations many of us have because we often look “fine”… but even if you can get someone to understand the physical limitations- getting them to understand the mental is so much harder! I call it my blender brain.
‘Blender brain’ that’s a good one! Getting people to understand the mental part of it is soooo hard, I even struggle to describe it myself, especially because absolutely nothing compares. I’m glad you can listen to cast recordings! Although I know it’s nowhere near the same.
I’ve been doing a lot of bed stretches and somatic releasing. Working with my therapist on the best ways to continue this practice. I also try to journal 📓 physically as opposed to on my phone. On days that are really bad, I’m happy to just put up a one liner or sing!
Bed stretches and somatic releasing sound like wonderful self-care practices and so important. So glad to hear you’re journaling and get a one liner in or singing a bit — it can create so much well-being just doing a bit.