You should meditate you should jog you should track your heart rate variability you should keep a gratitude journal you should do healing visualizations you should drink more water you should spend mo
Hey everyone - I haven't been able to respond to all these amazing comments between baby feeds and naps, but I just wanted to say THANK YOU for reading and for all the sentiments shared here. I love venturing outside my normal style and I liked how this one turned out, but I didn't know if it would work well for others. It is so rewarding to hear how much it resonated with you.
Thank you for sharing such a deeply important part of your life with the Substack World: you are aware that many readers and writers in Substack either worked in medicine or are still working in the very broken field of medicine: IT HAS NOT always been this way. Congratulations! As a mother, and retired from the field of medicine (oncology) and science research, no I never felt threatened or silenced EVEN before I worked in a hospital but I lived during the time the professional "boomers" like me, I mean women who delayed childbirth because of both the career demands and amount of time education takes to actually "produce" any person who is both knowledgeable and compassionate in the OB/GYN world: Three things: 1. There is always a D student practicing MEDICINE somewhere and faking it until they are caught. 2. A wide support system is needed for new moms: face to face new Moms; here in Northern VA though I complain about it the support system for Moms and new Babes is good: ASK QUESTIONS and learn to listen for what works for you. 3. My favorite piece of advice for me when I had my first born by C-Section and also nursed. (La Leche League still exists) was SLEEP when the BABY is SLEEPING.. or you will exhausted all the time given to me by the pastor's wife who had 8 kids! Take care! and enjoy.. time flies really fast.. when you are having one of life's most amazing experience: being a Mom to a Babe. Isabell. YOU ARE WELCOME and thank you!
THISTHISTHIS. I vacillate so much between “do all the things, decipher this message, unlock the mystery” to “oh FFS, I’m tired of none of this crap working - hand me that chocolate croissant.” I spend most of my time in the former, and I have made the very slightest of gains. There’s some sort of balance here that we’re not finding easily, we chronically ill marvels. Really quieting down the rest of life and all its noises competing for our attention so we can fully tune in to what our bodies are saying feels impossible most days. And I’m one of the fortunate ones in that I have a partner and disability benefits (and sometimes those are the things that need to get quieter too).
I vacillate between those mindsets too. Sometimes multiple times a day. An hour.
I don't even know anymore if balance is only about quieting down the rest of life to fully tune into what our bodies are saying. Increasingly I think (and I'm super curious what you think about this) that even if we could achieve perfect silence and attunement (we can't), we would still be alarmingly mysterious to our selves. It's slow (much too slow - so slow that I am rageful about it) but there IS more research being done, more stories getting shared, and more knowledge spreading about chronic illness. And hopefully this will all mean that we can more accurately and generously offer healing to our selves, whether we're currently able to live a quiet, totally attuned-to-our-selves life or not. This is a bit of a ramble, I apologize, but I do wonder what you, having been through so much (I read your Lady's Illness Library interview!) think about the idea that our bodies have all the answers if only we could quiet the noise, tune into our selves, and hear them.
You’re probably right, Erin. Still, I can’t help but wonder if convalescing by the sea, with not a care in the world, wouldn’t be THE secret to all of us healing. <sigh>...a girl can dream 🌊
NO MATTER WHAT IS GOING ON. and I mean no matter WHAT the issue is: CONVALESCING BY THE SEA will heal ALL things.
The Ocean roar and beauty of the water, the sand.. you know.. all of it will take care of any issues like ,, can't shut of worrying or this or that. That is how I did it.. I even went to the Bahamas pregnant w/ my second son! :) floating in the sea water is one of my fondest memories.. :) it not just a dream.. it is the truth. !! :)
I once said to my doctor, ‘Wish you could write me a script for a three month cruise or something, so all my basic needs were met and I could focus on rest and recovery’. My doctor said, ‘I would write you that script, but only if I could come too’. (I have never been on a cruise and this was long before the pandemic.)
Ha! That’s exactly what we need. Though it would have to be limited to like 100 people on one of those big ships and everyone would have to be tested for all the things first.
Yes, a floating sanitarium for people with chronic illness... or just a nice resort by the sea as you imagined. Somewhere there is yoga but you don’t have to do yoga unless you feel up to it. Where you’re encouraged to rest and relax.
I have struggled with this. I have written about this. I have cried about this. Nothing works. It all works. It's controllable. It's out of my control. My body is only mine when I focus, give all of myself to maintaining its existence. It's exhausting. My body is only mine when I let go, forget myself entirely and live in the moment. It's freeing.
Forever fights, forever balance and imbalance, forever unknown.
There is no right answer, no wrong one either. It's all just a series of choices—micro-level, often. Do I stand up? Do I uncurl my legs? Do I eat now? Which part of me do I serve at this very second?
Yes, i’ve observed that dealing with my body, especially when I’m in a flare is like dealing with a toddler. I coax and it has a meltdown, or suddenly smiles and cooperates before sitting down and refusing to move. Like a lot of harried mums I’ve learned ‘it is what it is’ and also I feel exasperated: ‘look, can we just finish the shopping, please? I’ll even buy you an ice-cream?’ At the moment I’m working on simply believing my body rather than trying to argue it out of every experience à la ‘you’re not that tired’, ‘you can’t be dehydrated again already’, ‘surely you don’t need another nap?’ etc. The answers seem to be yes, yes and yes so I can save precious energy by just believing myself. Phew! Thank you for capturing that flavour of struggle so vividly and poetically. I’m glad you have your forest ❤️
My tried and true way to navigate living in a body that never feels quite “right?” After decades of deciding what “right” should feel like and pursuing it in every way imaginable, now “right” is exactly as she is. My only task is to pay attention, allow, embrace. 🙏💛
After a long and complex relationship with food, my new scale is, "how much did I enjoy eating that?" Not the kind of enjoyment that comes just from the taste buds, but from the nurturing and the nourishment as well. Because I find that I have to be 100% present in order to engage my entire body and truly enjoy something. This means blocking out all the noise that accompanies this shoulds. Not easy but so worth it.
“How much did I enjoy eating that?”...lovely. Even sounds soothing reading the words! No judgement, only pleasure. Also, “blocking out the noise” of should do this, should do that. One of my biggest (early on) breakthroughs that has led to where I am now. Drowning out the noise reduces all the conflict, improves clarity. Not easy (when we’ve been taught the opposite) but like you say, so a
Yes! When I listen to my oldish body and do as suggested---stretch stretch stretch, for instance, or “sleep now!”I feel better altogether. Body and I also like waking up with: what are you waiting for? Go pee, right now or your next nightmare is going to involve flooding!
totally relate! when I stop doing yoga for a month or so, I pay for it in pain...aches...and my brain slows down. and YES to the pee dreams...I wish I hadn't just eaten a bag of Goldfish and needed a bottle of water..
What would happen if we did lead with our body? Listened to it. Prioritise its needs. What would happen if we became friends with it?
It feels like this way of being has been something I “resorted” to after 20 years of the opposite. For the first 4 years this felt like a full time job. 24/7. Hard work (but so was the pain, the suffering). Post 4 years it became my way of life.
Now I’m enjoying the health benefits that medically I’m told isn’t possible. And, well if they are, then I can’t have been that ill. My symptoms must have been mild. Been few. I must have got lucky. Had a great team of physicians.. someone paying all my bills. Etc.
But what if the recovery isn’t in the “what we do//have//don’t have” but in the way that we approach it?
How did you get inside my brain? For every purity test it seems there are four to cancel it out. I can’t make sense of most guidance that involves health or my body these days.
Maybe it’s the pain threshold, it’s too low. (Actually got told this one the other night - that if they were living with the pain they wouldn’t feel it as much as me 😆😂).
I love what happens to the word "body" throughout this piece! By the end, I was reading it and hearing it echo in my mind in a completely new way from when the piece began. Beautiful poetry, Rachel! <3
Agh... this constant argument with the body is so accurate! It is so bloody hard to feel like we’re doing it all wrong all the time because we’re not doing all the things. Sometimes we just want to eat the chocolate without thinking about what it’s doing to The Body 😂 thank you x
I didn't count how many times the term "the body" was mentioned in your essay, but it was a lot. It's understandable; we try to be well and we long for the days when being well was our normal state. I'm hoping to read more of your posts, and especially about your spirit, your intuition, your soul. The spirit is elusive, and we rarely talk or write about it. It's something that other cultures (and I imagine children) develop and think and experience more than we do.
Hey everyone - I haven't been able to respond to all these amazing comments between baby feeds and naps, but I just wanted to say THANK YOU for reading and for all the sentiments shared here. I love venturing outside my normal style and I liked how this one turned out, but I didn't know if it would work well for others. It is so rewarding to hear how much it resonated with you.
Sending love to all of you!
Rachel
Thank you for sharing such a deeply important part of your life with the Substack World: you are aware that many readers and writers in Substack either worked in medicine or are still working in the very broken field of medicine: IT HAS NOT always been this way. Congratulations! As a mother, and retired from the field of medicine (oncology) and science research, no I never felt threatened or silenced EVEN before I worked in a hospital but I lived during the time the professional "boomers" like me, I mean women who delayed childbirth because of both the career demands and amount of time education takes to actually "produce" any person who is both knowledgeable and compassionate in the OB/GYN world: Three things: 1. There is always a D student practicing MEDICINE somewhere and faking it until they are caught. 2. A wide support system is needed for new moms: face to face new Moms; here in Northern VA though I complain about it the support system for Moms and new Babes is good: ASK QUESTIONS and learn to listen for what works for you. 3. My favorite piece of advice for me when I had my first born by C-Section and also nursed. (La Leche League still exists) was SLEEP when the BABY is SLEEPING.. or you will exhausted all the time given to me by the pastor's wife who had 8 kids! Take care! and enjoy.. time flies really fast.. when you are having one of life's most amazing experience: being a Mom to a Babe. Isabell. YOU ARE WELCOME and thank you!
THISTHISTHIS. I vacillate so much between “do all the things, decipher this message, unlock the mystery” to “oh FFS, I’m tired of none of this crap working - hand me that chocolate croissant.” I spend most of my time in the former, and I have made the very slightest of gains. There’s some sort of balance here that we’re not finding easily, we chronically ill marvels. Really quieting down the rest of life and all its noises competing for our attention so we can fully tune in to what our bodies are saying feels impossible most days. And I’m one of the fortunate ones in that I have a partner and disability benefits (and sometimes those are the things that need to get quieter too).
I vacillate between those mindsets too. Sometimes multiple times a day. An hour.
I don't even know anymore if balance is only about quieting down the rest of life to fully tune into what our bodies are saying. Increasingly I think (and I'm super curious what you think about this) that even if we could achieve perfect silence and attunement (we can't), we would still be alarmingly mysterious to our selves. It's slow (much too slow - so slow that I am rageful about it) but there IS more research being done, more stories getting shared, and more knowledge spreading about chronic illness. And hopefully this will all mean that we can more accurately and generously offer healing to our selves, whether we're currently able to live a quiet, totally attuned-to-our-selves life or not. This is a bit of a ramble, I apologize, but I do wonder what you, having been through so much (I read your Lady's Illness Library interview!) think about the idea that our bodies have all the answers if only we could quiet the noise, tune into our selves, and hear them.
You’re probably right, Erin. Still, I can’t help but wonder if convalescing by the sea, with not a care in the world, wouldn’t be THE secret to all of us healing. <sigh>...a girl can dream 🌊
Oh gosh idk if i'm right but count me in for convalescing by the sea, sans cares, and healing for the rest of our days. Couldn't hurt!
NO MATTER WHAT IS GOING ON. and I mean no matter WHAT the issue is: CONVALESCING BY THE SEA will heal ALL things.
The Ocean roar and beauty of the water, the sand.. you know.. all of it will take care of any issues like ,, can't shut of worrying or this or that. That is how I did it.. I even went to the Bahamas pregnant w/ my second son! :) floating in the sea water is one of my fondest memories.. :) it not just a dream.. it is the truth. !! :)
I once said to my doctor, ‘Wish you could write me a script for a three month cruise or something, so all my basic needs were met and I could focus on rest and recovery’. My doctor said, ‘I would write you that script, but only if I could come too’. (I have never been on a cruise and this was long before the pandemic.)
Ha! That’s exactly what we need. Though it would have to be limited to like 100 people on one of those big ships and everyone would have to be tested for all the things first.
Yes, a floating sanitarium for people with chronic illness... or just a nice resort by the sea as you imagined. Somewhere there is yoga but you don’t have to do yoga unless you feel up to it. Where you’re encouraged to rest and relax.
Yes. 1000%. So beautiful.
I have struggled with this. I have written about this. I have cried about this. Nothing works. It all works. It's controllable. It's out of my control. My body is only mine when I focus, give all of myself to maintaining its existence. It's exhausting. My body is only mine when I let go, forget myself entirely and live in the moment. It's freeing.
Forever fights, forever balance and imbalance, forever unknown.
There is no right answer, no wrong one either. It's all just a series of choices—micro-level, often. Do I stand up? Do I uncurl my legs? Do I eat now? Which part of me do I serve at this very second?
Very well said
Thank you so much!
Yes, i’ve observed that dealing with my body, especially when I’m in a flare is like dealing with a toddler. I coax and it has a meltdown, or suddenly smiles and cooperates before sitting down and refusing to move. Like a lot of harried mums I’ve learned ‘it is what it is’ and also I feel exasperated: ‘look, can we just finish the shopping, please? I’ll even buy you an ice-cream?’ At the moment I’m working on simply believing my body rather than trying to argue it out of every experience à la ‘you’re not that tired’, ‘you can’t be dehydrated again already’, ‘surely you don’t need another nap?’ etc. The answers seem to be yes, yes and yes so I can save precious energy by just believing myself. Phew! Thank you for capturing that flavour of struggle so vividly and poetically. I’m glad you have your forest ❤️
💗”so i can save precious energy by just believing myself”. Yes please!
My tried and true way to navigate living in a body that never feels quite “right?” After decades of deciding what “right” should feel like and pursuing it in every way imaginable, now “right” is exactly as she is. My only task is to pay attention, allow, embrace. 🙏💛
After a long and complex relationship with food, my new scale is, "how much did I enjoy eating that?" Not the kind of enjoyment that comes just from the taste buds, but from the nurturing and the nourishment as well. Because I find that I have to be 100% present in order to engage my entire body and truly enjoy something. This means blocking out all the noise that accompanies this shoulds. Not easy but so worth it.
“How much did I enjoy eating that?”...lovely. Even sounds soothing reading the words! No judgement, only pleasure. Also, “blocking out the noise” of should do this, should do that. One of my biggest (early on) breakthroughs that has led to where I am now. Drowning out the noise reduces all the conflict, improves clarity. Not easy (when we’ve been taught the opposite) but like you say, so a
Yes! When I listen to my oldish body and do as suggested---stretch stretch stretch, for instance, or “sleep now!”I feel better altogether. Body and I also like waking up with: what are you waiting for? Go pee, right now or your next nightmare is going to involve flooding!
totally relate! when I stop doing yoga for a month or so, I pay for it in pain...aches...and my brain slows down. and YES to the pee dreams...I wish I hadn't just eaten a bag of Goldfish and needed a bottle of water..
What would happen if we did lead with our body? Listened to it. Prioritise its needs. What would happen if we became friends with it?
It feels like this way of being has been something I “resorted” to after 20 years of the opposite. For the first 4 years this felt like a full time job. 24/7. Hard work (but so was the pain, the suffering). Post 4 years it became my way of life.
Now I’m enjoying the health benefits that medically I’m told isn’t possible. And, well if they are, then I can’t have been that ill. My symptoms must have been mild. Been few. I must have got lucky. Had a great team of physicians.. someone paying all my bills. Etc.
But what if the recovery isn’t in the “what we do//have//don’t have” but in the way that we approach it?
How did you get inside my brain? For every purity test it seems there are four to cancel it out. I can’t make sense of most guidance that involves health or my body these days.
Ok but really you should drink more water.
Maybe it’s the pain threshold, it’s too low. (Actually got told this one the other night - that if they were living with the pain they wouldn’t feel it as much as me 😆😂).
🤭🤭
I love what happens to the word "body" throughout this piece! By the end, I was reading it and hearing it echo in my mind in a completely new way from when the piece began. Beautiful poetry, Rachel! <3
This might be the most magical thing I've ever seen you write. I'm transfixed.
This is the best ode to the ailing body ever written. Riveting and brutally honest 💔
I love this so much.
Agh... this constant argument with the body is so accurate! It is so bloody hard to feel like we’re doing it all wrong all the time because we’re not doing all the things. Sometimes we just want to eat the chocolate without thinking about what it’s doing to The Body 😂 thank you x
I didn't count how many times the term "the body" was mentioned in your essay, but it was a lot. It's understandable; we try to be well and we long for the days when being well was our normal state. I'm hoping to read more of your posts, and especially about your spirit, your intuition, your soul. The spirit is elusive, and we rarely talk or write about it. It's something that other cultures (and I imagine children) develop and think and experience more than we do.