I've finally admitted I need an artist assistant and we are experimenting together to see how I can work "through" them. I make little disjointed notes on what I want and what I'm thinking of and give them to then to write up into coherent project ideas.
Before my chronic illness, I took my creativity for granted because I always thought I'd be able to turn my hand to whatever it is I wanted to do.
Now, I'm like Gollum with his Precious!! 🤣
I love that you call it 'our tiny power' 💪 It really is and it is OURS but ours to live with and to share, even if we're the only person we share it with. It still counts. WE still count 💖
My word for the year is poetry. In December in place of an advent calendar I read a poem each day and it rekindled my love for poetry. I realised it helps me see the world in the way I want more of. So I will continue to read a poem every day that I can, and want to, and I'm hopeful I will get back into writing poetry but it's okay if that doesn't happen. I think maybe my tiny power is in how I can see the world, even from my bed.
You have a beautiful way of describing the nuances of illness in non cliche ways. I will pray for miracles as well. I suffer with CCI craniocervical instability. I have lost so much overnight, and three years bedridden. I think the main gift from the suffering is my faith. 🙏🏼 I miss dancing, I miss music, I miss learning and running and seeing the world.
Thanks for the effort you put into your substack. I was raised in East Africa and also struggled with European winters. My tiny power is writing letters. My word of the year? I need to think about that...
My word of the year is flourish. My mantra is “build it and they will come” and the theme I have for this year is around being ready to be seen🌱
Projects wise, I have many. But no energy atm which has been frustrating. Though I am enjoying the benefits of feeling physically well in my body and a lot of function so zero complaints, very much a new terrain to navigate🙏
Oh yay, Amber, I’m loving your word and that this year is about being ready to be seen. Yes yes yes! It’s really odd how energy works, huh? Like, we can have loads of function but no creative energy, and vice versa. I’m happy that you are feeling well in your body 🌸❤️
"Ready to be seen". Oh! Thank you for sharing your readiness to be seen and sharing this post. Disability, always breaking things down into smaller pieces, realizing that planning and brainstorming are now a necessary step, etc. Really loving this "ready to be seen "as a precursor to being seen. Feels like a very disabled way to think about things. At least for me.
I spent so many years in hiding. Hiding my illness and severe pain for decades. Suffering in silence.
My fear I’ve recently realised, has been around being seen as attention seeking (hence staying hidden).
Gut wrenching to witness that when you do speak out and refuse to hide and suffer in silence, being seen as attention seeking is a frequent response for so many.
I believe the fastest way to bring about change is to share our stories. I will hide no more!
Though I can’t take credit for this post, this one’s written by the fabulous Madelleine💛
I had a friend who was struggling with thoughts of self harm and SI. Someone called him “attention seeking.” And he was like, “Yes. I am seeking attention (care, kindness, support). That is exactly why I am saying this.” That’s always stuck with me.
I had a psychiatrist who is perceiving me as "drug seeking", and said something like that. I said to them, "well I'm looking for support with my pain and mental health. I think that's the only way you can help me is with medication, right? If you have other ways to support me medically, I'd love to know about those."
Wow, that’s amazing your friend was able to speak up in such a way during the most challenging of times.
It’s exactly what I’ve come to realise myself - you’re damn right i’m seeking attention. I am worthy and deserving of attention // help // the support that I need as part of being human.
Gosh I’ve heard that many times about the drugs too. What a way to go with your response🙂
I took illegal drugs for a long time. Legal drugs like alcohol (much worse than illegal drugs, causing way more deaths and had the greater impact on my life) and caffeine, with many of the other many addictions (that have been served up to us) too.
I only stopped because they stopped working. Pain relief hasn’t worked for me in nearly ten years. I take no medication for the Same reason.
But it’s in this space that I’ve been able to see, all that time I was numbing myself out as much as humanly possible because of the enormity of what I was enduring. Not for any other reason. (I was the lesser likeliest person to take illegal drugs. My understanding was that they killed you - I found myself hopeful
For this outcome, only to discover I got some light relief).
Thinking about it, I’ve been reading Unwell Women. The resistance by physicians to giving women pain relief during childbirth was strong. Man’s belief was that women should suffer. That they were the ones to dictate how much pain a woman was in as their patient and in the ones holding all the power (knowledge was seen as power - it didn’t have to be accurate, you just had to pretend you had it). It was acceptable to make assumptions and judgements as part of formal diagnosis and prescribe cures as dictated. This still permeates medicine today - a lot of what I’m reading in this book does.
Thanks for sharing your vulnerability. I took a deep sigh/breath of relief Reading your messages. I didn't know I needed this sense of being seen and solidarity until I read your words.
My word for the year is actually CREATE 🙂 The intention I set is to focus more on creating things, making art. I'm approaching it from an art therapy perspective, in an effort to keep it light and far away from perfectionism.
I think my tiny but mighty power might be my compassion. It runs deep and steady and it spread love and connection and holy shit do we need that in the world.
Congratulations on your music! That’s so exciting and it must feel great to have accomplished that!
I will have to revisit this when I have more spoons as my scrambled egg brain is extra scrambled tonight … but I adore the idea of embracing our tiny power.
Of recognizing that there IS power in sharing our stories. We’re showing the world what suffering is as well as encouraging people to fight for the systems of support they will need in the future.
We can highlight problems that will impact others before they become bigger problems. We can and do encourage compassion and empathy. We can help people understand the world.
In many ways our tiny power is actually a big superhero worthy ability!
I turned 70 yesterday. Ten years since the “diagnosis.”
Today I ponder about passing my baton, and expressing the counter narratives of my experience as a “Professional” woman. Sorry tech bros, bullies, liars and cheaters, and your botoxed Barbie companions, I was here too.
That is not what happened. Your version of reality will not prevail.
I am so glad to see you are back. Looking so much forward to hearing your music later this year. I wish more people would understand that they to could become severily ill / disabled. That people would understand that so many life outcomes are often due sheer (bad) luck and therefore we should all become more compassionate.
I really appreciate that you use some of your limited energy to share these important insights with us. Your voice, however it comes out, is important.
This year's creative projects for me ... I'm finally working on a book I have had stewing inside of me for decades. I'm sharing more of my visual art. I'm launching a year-long craft-as-therapy group.
And approximately ten million other things, most of which I'm aware I'll let go of, let shift, do differently than planned. Because of health, depression, energy, life.
I wrote at the start of the year that January would be slow and gentle for me. Then I dove right in anyway. Then my brother lost everything down in the LA fires and even though he is safe and okay and has a really positive attitude about it all, it stirred up my anxiety and all my focus turned to doing the things I could do to bring that anxiety down and be able to function again. So I slowed down although perhaps not in the gentle way I intended.
My word of the year is BRAVE. And mostly I'm exploring what that means for me.
Oh my goodness, I’m so incredibly sorry to hear about your brother! I hope the best possible outcome for him. Wow, I love all your projects, even though some will be let go off. And love your word of the year!
I started trying to write last year. It’s really really hard. My brain also cannot hold all these different ideas at once and synthesize. So I try do write down every sentence that comes into my head (if I remember to) into my phone and at some point collect it together. But brainfog oof.
I also always liked to draw but that’s even harder lying down. But I still like to think of it.
I like what you said about our tiny powers and I do feel mine. Although not always.
My word of the year may be Ma (meaning sth like negative space and often visualized in miyazik/ghibli movies). Interconnectedness, magic also, softness, (slow, disrupting) change, creativity and gratitude.
I've finally admitted I need an artist assistant and we are experimenting together to see how I can work "through" them. I make little disjointed notes on what I want and what I'm thinking of and give them to then to write up into coherent project ideas.
Wow that sounds really exciting! I hope you will write about how it works out 🌸
BRAVO on your music!!!! Thrilled for you!!!! 🙌💖
Before my chronic illness, I took my creativity for granted because I always thought I'd be able to turn my hand to whatever it is I wanted to do.
Now, I'm like Gollum with his Precious!! 🤣
I love that you call it 'our tiny power' 💪 It really is and it is OURS but ours to live with and to share, even if we're the only person we share it with. It still counts. WE still count 💖
Haha I love that! I too am Gollum with my Precious 🌟 and thank you for your words as always ❤️🌸
My word for the year is poetry. In December in place of an advent calendar I read a poem each day and it rekindled my love for poetry. I realised it helps me see the world in the way I want more of. So I will continue to read a poem every day that I can, and want to, and I'm hopeful I will get back into writing poetry but it's okay if that doesn't happen. I think maybe my tiny power is in how I can see the world, even from my bed.
So beautiful!! And I love the idea of reading a poem a day. I have it on my to do for when I get more brain power. I love your tiny power 🌸❤️
You have a beautiful way of describing the nuances of illness in non cliche ways. I will pray for miracles as well. I suffer with CCI craniocervical instability. I have lost so much overnight, and three years bedridden. I think the main gift from the suffering is my faith. 🙏🏼 I miss dancing, I miss music, I miss learning and running and seeing the world.
Thank you so much! I’m so glad to hear you have your faith, it’s so rough to lose so many things ❤️🌸
Thanks for the effort you put into your substack. I was raised in East Africa and also struggled with European winters. My tiny power is writing letters. My word of the year? I need to think about that...
Where in East Africa? Looking forward to hearing your word of the year 💫
Kenya and Ethiopia. I also worked briefly in Dodoma when I left college.
Still thinking about my word of the year. Something like "hope" but more specific...
Welcome back 🤗
Miracles ! Wow I love that
Ease, Magic and Spirit to support - beautiful💛
My word of the year is flourish. My mantra is “build it and they will come” and the theme I have for this year is around being ready to be seen🌱
Projects wise, I have many. But no energy atm which has been frustrating. Though I am enjoying the benefits of feeling physically well in my body and a lot of function so zero complaints, very much a new terrain to navigate🙏
Oh yay, Amber, I’m loving your word and that this year is about being ready to be seen. Yes yes yes! It’s really odd how energy works, huh? Like, we can have loads of function but no creative energy, and vice versa. I’m happy that you are feeling well in your body 🌸❤️
"Ready to be seen". Oh! Thank you for sharing your readiness to be seen and sharing this post. Disability, always breaking things down into smaller pieces, realizing that planning and brainstorming are now a necessary step, etc. Really loving this "ready to be seen "as a precursor to being seen. Feels like a very disabled way to think about things. At least for me.
I spent so many years in hiding. Hiding my illness and severe pain for decades. Suffering in silence.
My fear I’ve recently realised, has been around being seen as attention seeking (hence staying hidden).
Gut wrenching to witness that when you do speak out and refuse to hide and suffer in silence, being seen as attention seeking is a frequent response for so many.
I believe the fastest way to bring about change is to share our stories. I will hide no more!
Though I can’t take credit for this post, this one’s written by the fabulous Madelleine💛
Trigger warning: mention of SI.
I had a friend who was struggling with thoughts of self harm and SI. Someone called him “attention seeking.” And he was like, “Yes. I am seeking attention (care, kindness, support). That is exactly why I am saying this.” That’s always stuck with me.
I had a psychiatrist who is perceiving me as "drug seeking", and said something like that. I said to them, "well I'm looking for support with my pain and mental health. I think that's the only way you can help me is with medication, right? If you have other ways to support me medically, I'd love to know about those."
Wow, that’s amazing your friend was able to speak up in such a way during the most challenging of times.
It’s exactly what I’ve come to realise myself - you’re damn right i’m seeking attention. I am worthy and deserving of attention // help // the support that I need as part of being human.
Gosh I’ve heard that many times about the drugs too. What a way to go with your response🙂
I took illegal drugs for a long time. Legal drugs like alcohol (much worse than illegal drugs, causing way more deaths and had the greater impact on my life) and caffeine, with many of the other many addictions (that have been served up to us) too.
I only stopped because they stopped working. Pain relief hasn’t worked for me in nearly ten years. I take no medication for the Same reason.
But it’s in this space that I’ve been able to see, all that time I was numbing myself out as much as humanly possible because of the enormity of what I was enduring. Not for any other reason. (I was the lesser likeliest person to take illegal drugs. My understanding was that they killed you - I found myself hopeful
For this outcome, only to discover I got some light relief).
Thinking about it, I’ve been reading Unwell Women. The resistance by physicians to giving women pain relief during childbirth was strong. Man’s belief was that women should suffer. That they were the ones to dictate how much pain a woman was in as their patient and in the ones holding all the power (knowledge was seen as power - it didn’t have to be accurate, you just had to pretend you had it). It was acceptable to make assumptions and judgements as part of formal diagnosis and prescribe cures as dictated. This still permeates medicine today - a lot of what I’m reading in this book does.
Thanks for sharing your vulnerability. I took a deep sigh/breath of relief Reading your messages. I didn't know I needed this sense of being seen and solidarity until I read your words.
My word for the year is actually CREATE 🙂 The intention I set is to focus more on creating things, making art. I'm approaching it from an art therapy perspective, in an effort to keep it light and far away from perfectionism.
I think my tiny but mighty power might be my compassion. It runs deep and steady and it spread love and connection and holy shit do we need that in the world.
Love this! And am loving the art making without perfectionism! Compassion is for sure something we need a whole lot more of in this world ❤️🌸
Congratulations on your music! That’s so exciting and it must feel great to have accomplished that!
I will have to revisit this when I have more spoons as my scrambled egg brain is extra scrambled tonight … but I adore the idea of embracing our tiny power.
Of recognizing that there IS power in sharing our stories. We’re showing the world what suffering is as well as encouraging people to fight for the systems of support they will need in the future.
We can highlight problems that will impact others before they become bigger problems. We can and do encourage compassion and empathy. We can help people understand the world.
In many ways our tiny power is actually a big superhero worthy ability!
It so is a superhero worthy ability! Argh, extra scrambled brain! I hate extra scrambled brain! Hope you get a bit less scrambled soon 🌸
I turned 70 yesterday. Ten years since the “diagnosis.”
Today I ponder about passing my baton, and expressing the counter narratives of my experience as a “Professional” woman. Sorry tech bros, bullies, liars and cheaters, and your botoxed Barbie companions, I was here too.
That is not what happened. Your version of reality will not prevail.
I left clues.
Hell yeah you left clues!!
Aah! Thank you for this. "I left clues". The magic is still alive and it cannot be erased. That's what I got from this.
I am so glad to see you are back. Looking so much forward to hearing your music later this year. I wish more people would understand that they to could become severily ill / disabled. That people would understand that so many life outcomes are often due sheer (bad) luck and therefore we should all become more compassionate.
Exactly! 🌸❤️
Tiny power is an important phrase. Like small drops of water wear away rock.
However your brain feels, this is a fantastic blog.
But the idea of an assistant if you want to put ideas together and see how things fit.
To some extent, I used to do this with my neurodiverse students.
Published writers have editors and workshops.
Stretching the time frame works.
My favourite poem is long - but written by Elizabeth Bishop over seven years.
More power to your music.
🌸❤️ thank you so much!
I really appreciate that you use some of your limited energy to share these important insights with us. Your voice, however it comes out, is important.
This year's creative projects for me ... I'm finally working on a book I have had stewing inside of me for decades. I'm sharing more of my visual art. I'm launching a year-long craft-as-therapy group.
And approximately ten million other things, most of which I'm aware I'll let go of, let shift, do differently than planned. Because of health, depression, energy, life.
I wrote at the start of the year that January would be slow and gentle for me. Then I dove right in anyway. Then my brother lost everything down in the LA fires and even though he is safe and okay and has a really positive attitude about it all, it stirred up my anxiety and all my focus turned to doing the things I could do to bring that anxiety down and be able to function again. So I slowed down although perhaps not in the gentle way I intended.
My word of the year is BRAVE. And mostly I'm exploring what that means for me.
I love your word of the year.
https://createmefree.substack.com/p/a-gentle-january-for-create-me-free
Oh my goodness, I’m so incredibly sorry to hear about your brother! I hope the best possible outcome for him. Wow, I love all your projects, even though some will be let go off. And love your word of the year!
I started trying to write last year. It’s really really hard. My brain also cannot hold all these different ideas at once and synthesize. So I try do write down every sentence that comes into my head (if I remember to) into my phone and at some point collect it together. But brainfog oof.
I also always liked to draw but that’s even harder lying down. But I still like to think of it.
I like what you said about our tiny powers and I do feel mine. Although not always.
My word of the year may be Ma (meaning sth like negative space and often visualized in miyazik/ghibli movies). Interconnectedness, magic also, softness, (slow, disrupting) change, creativity and gratitude.
Wow I love these words! Urgh it’s so annoying with this brainfog!
Congratulations on finishing the album, that's amazing. Sending gentle hugs.
I hear you, sitting alongside to listen. It's good to read you again.
I'll keep a look out for your articles. xo
Thank you, Victoria 🌸
It's great to hear from you! I have found acrylic paint and have a lot of fun exploring it. My words for 2025 are explore, reflect, transform.
I love those words!
Thanks for this. And I don't think you realise how mighty your power is! Hugs
Aawe thank you, Susie 💕