I am beginning to untangle myself from this poisonous vine, to the extent I am beginning to see it. Thirty years ago a dear friend was diagnosed with cancer. She did a program with a (in?)famous individual who has spontaneous remission of their terminal cancer. The program required her to fully accept she had given herself cancer. She told me she could have agreed, except her cancer is a pediatric cancer, she was one of the oldest known cases dying at 28. That was her line in the sand: that a precious innocent baby does not give itself cancer, doesn’t choose agonizing pain, a failed bone marrow transplant and an early death. We say things to ourselves that we would never say to a child, or I hope not.
Thank you for the phrase ‘empowered helplessness’ that reveals the lie: its as if we are strapped to a table and society tells us we can undo our own straps. Its a comfortable lie because society can blame you for your circumstances and doesn’t have to do anything to help. That doesn’t only play out in health. (I would like to punch that complementary practitioner who harmed you too.)
Wow, the story about your friend is extremely powerful and heart wrenching. I have also had an alternative medicine practitioner show me a video of someone shrinking a tumor through mindfulness practices, with the message that health is a matter of mental effort. It's a highly insidious idea, and I'm so glad that your friend was able to draw that line so that she didn't blame herself during her life for something that was so obviously out of her control.
The hard part is that I also do believe in many aspects of alternative medicine, and I even believe that there are many ways we affect our health that are not "understood" in the scientific sense of the word. So striking a balance in my beliefs has proven illusive.
I love the image of being strapped to a table and trying to undo the straps. Haunting and beautiful!
I’ve come down to the idea that we influence our health, we don’t control it. Its the idea that we can or should control it that damages us. We would rather blame ourselves than feel helpless. Emily Nagoski (who cowrote Burnout and wrote Come As You Are) says when we think we need more grit, we need more support, and when we think others need more grit, they need more support. I read that a few months before I was felled by mecfs & I’m so glad I did, it definitely helped to reduce my suffering.
The self blame is particularly resonant for me in the context of getting pregnant. It’s the one thing I can’t control, but it’s easier to blame someone, so I blame myself. Thank you for sharing your story.
One visual a therapist gifted me (which I believe comes from IFS - Internal Family Systems), was to view all these internal voices as all lovable parts of myself. Even, and if not especially, the part that is not at peace with "what is". Because baked in the act of accepting her is peace just as real as any other.
There is still a voice inside me that thinks I could have avoided getting cancer. It doesn't run in my family. I am young, relatively healthy. And yet, it happened. I must have misstepped somewhere along the line.
I didn't like the feeling of resenting my own body, which seemed to be common for many young cancer patients. A resounding and understandable "how could it do this to me? how can I trust my body again?" was all over my support groups. But it felt strange to blame such an innocent thing. I saw my body as a casualty of the whole experience. So instead, I took to the feeling of "how could *I* have done this to *us*? I was in charge of you and I messed up so badly."
I think it was easier to set the blame on something I could control and correct in the future - my choices. If I could control choices, then I could avoid it happening again. It wasn't until I had admitted this thought to my partner when I realized how much of a chokehold the self-blaming had on me. I think he was taken aback by how this wasn't obvious to me and said (very softly and with concern) - "You know there's nothing you could have done, right? Healthy people get cancer all the time."
But if that were true... if healthy people could get cancer and unhealthy people could have smooth pregnancies then some part of me has to admit, I really have very little control over anything. It can be painful to get lost in that thought, but I guess that's the whole endless lesson in being human. None of us seemed to have mastered it quite yet - at least not in a way that keeps us in pace with modern life - and there is comfort in that . As you said, it is complicated. Thank you for continuing to share these stories with so much compassion and clarity.
Wow this hit hard: "how could *I* have done this to *us*? I was in charge of you and I messed up so badly."
Love everything you said here, of course (and everything you say, ever!). I've been thinking about you a lot as I am reading a history of mind-body medicine which tracks the origins of some of our reflexive beliefs about mind-body healing to their historical roots. For example, there is a notion that the mind can health the body if only you believe hard enough. This book draws a direct connection to the Christian belief that faith heals....all this stuff is very deeply ingrained.
As another "healthy" person who got cancer, I can so relate to this. Deep in the shadow of my heart, I felt I knew why I had gotten cancer, why I didn't deserve to survive it; on some level, the Catholic girl in me felt like I was doing penance. It took me years of great therapy to (mostly) get past this. On some level I feel like cancer healed me, but man it was a brutal journey to get there!!
Oof totally. I also have that young Catholic girl in me who felt the same... so real. But are so many parts of the experience that brought me into a deeper wisdom about things, maybe even a greater peace (TBD! lol), and I am grateful for that. Thank you for sharing this, Gina. ❤️
Having miscarriages while trying to have kids is incredibly common and, understandably, no one talks about it until years later. The hard part is that you need to hear about it at the time you are going through it so you don't feel deficient. I was amazed at how many friends had had some kind of miscarriage along the way. All that quiet, secret anxiety when we were trying. No one has a crystal ball, though. No one can tell you it will all work out. But, it really does most of the time. I'm 54 with twin 21 year olds and a 19 yr old. I really nailed myself in the process, mentally. try to be kind to yourselves if the going is rocky. It is for so many people.
It is indeed so common! It is also so common for me to hear about how common it is! It is less common for me to actually hear from other people going through it because, as you said, it's not something you really want to write about on the internet in the heat of the moment. I am trying to balance that--write about it soon but not too soon. It doesn't have to be perfect. We see a theme :)
I hope to look back in my fifties with the same perspective. My dream is to have three, a dream I have recently been more willing to state rather than shying away from it in fear. Put a stake in the ground, you know!? I can dream it even if it might not happen for me.
Stress definitely affects health. This is immediately evident, even in appearance it is elementary, if you are in constant stress, your hair falls out, your skin becomes dull, and so on. How to get rid of it? Ideally, of course, draw up your ideal schedule, for example, go to bed as early as possible and get up accordingly, sleep for 8 hours, of course, engage in physical activity and indulge yourself with some little things. But I also believe that the environment also strongly influences our state of being in general. I surrounded myself with people who do not annoy me, on the contrary, they always support and inspire me, and that's great! You have to start small.
I agree with all of this, Ted, I think that environment and stress and relationships do affect health. The question is, how does one believe that and also navigate something like infertility or chronic illness? Because, while stress and environment may be a factor in my infertility, they also very well may not. There are hundreds of other factors at play, most of which can never be known.
The problem I face is that I could always do more. I could always cut out more activities from my day, I could always eat a more limited diet, I could always have more tests and home inspections, I could move to the woods. The questions is, where do I draw the line and allow myself to live?
I really sympathize with you in your really big problem, it breaks my heart when decent people who want children do not succeed. Since I am not an expert in this (and I think you have already turned to doctors and people who understand this), I can only support you! I can say what just made my life better, what I felt in my own skin. You, rushing after ideality, only get more nervous (after all, there is no absolute ideal, since there will always be some little rubbish that poisons life), you can, for example, draw up a schedule for yourself, where a couple of days a week (1 or maybe 2) you abstract from of all, wake up early, arrange, drink water, take a walk and read a good book, or meet a person whom you have not seen for a long time. Such moments in life will probably lighten your burden and you will notice the lightness in your soul.
I am sure that you are doing everything possible to achieve your goal, but also do not forget about yourself, about rest, about positive emotions! Of course, I am not an expert in this matter, but I will root for you, and I hope that you will someday publish an article with good news, where I can congratulate you from the bottom of my heart!
I love your term ‘Empowered helplessness’ Rae an energy I have spent the last 3 years moving in and out of because infertility can feel just plan helpless at times. But I have a pattern of breakdown to breakthrough so when it feels particularly crap I know I’m close to the upwards energy.
I never aim for perfection when I take care of my body - it’s always what makes me feel good, is fun and gives me that spark of vitality - I don’t believe in restriction when I’m already battling that so much.
I think your orientation away from perfection and restriction sounds super healthy. Thanks for sharing your journey...and you were a midwife!
This is too true: "So when I see a woman I perceive (on sight) to be more unhealthy than me with three children under five, I’m not ashamed to admit I think of: all the supplements, the acupuncture, the herbs, the tablets, the pessaries, the injections, the scans, the blood tests, the swabs, the cameras, the probes, the sedations, the lab results, the infusions, the paperwork, the passwords, the online portals, the consent forms, the train journeys, the money, the time, the stolen peace of mind and feel pretty hard done by."
After walking through the gauntlet of later-term miscarriages and fertility treatments, I came out with one conclusion: I expect myself to be able to make everything nice for everybody else. It's my job to keep things tidy (tidy emotions help people love us!).
I have told more than one friend in the same Fertility World that this is the first time where she won't be able to feign control and guarantee a happy ending. Because this isn't an issue with a negative mindset; this is the human body delivering messages.
Even with the most skilled doctors and the most diligence, you can give and give and work and work and your body can still say, "Nope, not gonna happen." And there's no "making it nice" for people watching from the outside. You either get pregnant and deliver a baby, or you don't. It's the most exposed I'd ever felt in my life. I was "failing" because I wasn't able to drag myself across a finish line the way other folks wanted me to (naturally, no interventions, in line with Mother Earth!). I couldn't work *just a little harder* and make everything nice.
100% feel all of this. Our culture is in love with stories of overcoming and victory, as you say. I am acutely aware that I have been and am still pursuing this kind of story. Even that awareness has not enabled me to make a genuine shift into some other mode of acceptance.
One thing I have succeeded at is accepting that I'm not in a mode of acceptance, if that makes any sense :). I am not ready to "accept whatever happens," and "be at peace." I hope someday to get there. But feeling ok with my range of feelings on the subject of pregnancy has been very liberating for me. Beating myself up for not accepting the situation was only another layer of hurt.
I definitely have the shame and guilt about not being "natural" and "in line with Mother Earth." I am cooking up a longer essay on all these topics--it's taking awhile because it's hard to find the words!
I do think we're bullied a lot into thinking we ought to *enjoy* (or at least be less human-y about) things that cause us pain (couched in, as you say, "accepting whatever happens"). I wonder if "acceptance" in a truer sense is a place of resolution in mind and body about things that are out of our control?
In trauma therapy they talk a lot about the body needing to "digest" what has traumatized it — that it's the work of the physiological mechanisms and not just a "snap into it" mindset.
I can imagine the relief you felt when you gave yourself permission to feel your genuine feelings around pregnancy. I anticipate your post being a balm. <3
Feelings are for feeling, and being unable to (or slow to) conceive when you want to is so so painful. I’m glad you can honour your heart. It takes less energy than tamping down the emotional gunpowder and hoping it never blows up ❤️🩹
yes, I do, too - though I think I'm similarly working to reframe this idea! it's hard. and I think the self-blame narrative is reiterated through social and other media sources (and has been, throughout my entire millennial-adult life). I'm also grappling with previous miscarriage that I'm nearly certain *was* caused by mold (because we found a lot of mold in our home and had to leave); AND YET, I still find myself circling the idea of, "but if I hadn't chosen this house..." the self-blame narrative runs deep. ♥️♥️ in this with you. the both/and of self environmental factors is a mind-trap.
Hi Alycia, I'm so sorry to hear about your miscarriage, and the moldy house. I have honestly never met a woman who has miscarried and not blamed herself in some way (though I'm sure she's out there, and would love to hear from her!)
I definitely am interested in how social media reinforces the notion that we are individually responsible for our health. I don't spend much time there, largely because I had to get off of it during the early part of my infertility journey. But I can imagine that it's hammered in there: look at all these healthy women eating beautiful salads! Is it that kind of thing?
from my experience, it's more about the social media (and consumer) narrative around control - we can control our outcomes by doing (or buying) xyz. I will admit, though, I often feed my own anxieties on Instagram - so, I'll click on posts about environmental toxins and then panic about how I can (or cannot) control my own outcomes, or what I've done or not done to create certain outcomes. does that make sense? just one experience of many, but that's what I mean!
Totally makes sense. And yes - I supposed every product is in some ways being sold on the basis of promoting control: controlling our image, our health, etc.
I was really taken with Eula Biss's book On Immunity, (which I mentioned in this post), because she does such a good job wrestling with the question of toxins (among many other things - it's a masterpiece). There's no way I can synthesize her whole line of thinking and do it justice, but I do recommend it if you are interested in a very wise perspective on the feeling that we live in a toxic world.
I read it years ago, in the depths of considering vaccinations for my babies - but not since the pandemic! I wonder if it would offer me a new perspective now ♥️ thanks for sharing! really loving your work here.
The paragraph on decision-making, oof! I feel seen right now. It reminded me of the time someone asked me to suggest a song. I froze. I couldn't think of a single piece of music because my brain started doing all kinds of mental gymnastics, considering what the song would say about me.
I have always had difficulty answering benign questions about my favorite color or movie. Will they think I am too Indian if I pick something bright, say mustard? Same with food. My partner often asks me what I want for dinner; as you can imagine, my brain freezes, or I get overwhelmed with all the choices.
Thank you for sharing this beautiful piece of writing with us.
TOTALLY HEAR YOU ABOUT THE SONG THING. In my twenties if I was asked my favorite song, I would respond, "I don't really listen to music," which in hindsight was probably even worse than blurting out "taylor swift." But I wanted to avoid the inevitability of labeling myself as the type of person with that type of favorite song.
Have you ever been subject to one of those introductory circles, where everyone goes around and says, like, one wild thing about themselves that no one would ever guess, or something like that? That shit makes my palms sweat.
Like everything of yours I’ve read, I read this and rolled it over in my brain again and again. Actually, I read this essay twice because I was trying to find the part where you said you somehow got access to my thoughts and then copied them down perfectly. Weirdly, I couldn’t find that bit.
It did also make me realize that maybe I blame myself less than I used to? Maybe I’m more self aware about the blame I pile on my own back. I’m not sure which. But after a decade of chronic illness something did change last year. I don’t know if it was learning more about biology or untangling myself from religion. Maybe both. It was definitely due in part to leaving social media. That quieted the self blame and what I think of now as Post Scroll Stress big time. When I take care of my body now I’m aiming for…Nourishment? Kindness? Slowness? I’m not sure of the word but it’s changed and I’m grateful and we’ll see if it keeps up.
It's so awesome to hear that you can see your own progress on this front, Ema! That's definitely a big deal.
It's fascinating to me how much chronic illness, religion, and social media are showing up around this topic, even though they seem at first glance totally unrelated.
I am SO with you on hating this internet tendency to provide the answer. It is so tempting when telling one's own story to be like, "here's what I did that worked, you should do that." So I get the compulsion. But man, it is seriously not a helpful mode of communicating about these issues.
Well, I have my third at age 35 but I also had twins at 33. I think 3 kids in two years is a lot. A lot of diapers! If I could change one thing about myself in those first 10 years of mom-ing it would be to drink less wine. Young parenting and wine are kind of a thing. Wine makes us cranky the next day. Kids are just kids and need a lot of attention.
Mar 8, 2023·edited Mar 8, 2023Liked by Rachel Katz
I felt this whole essay so, so hard.
Having been through both infertility and stage 4 colon cancer, I know firsthand the shame felt when your body disappoints. As a lifelong pleasing achiever, it was extremely difficult for me to accept the idea that I did not have control over my body, that no amount of positivity or juicing could ensure my survival. After four years, I could honestly say that cancer is the best worst thing that ever happened to me, as it taught me about fear and ego, control and shame: and those lessons, while brutal, have freed me to live a life that is more connected and purposeful, in part because I am no longer fighting for control I will never have, or trying to win battles that are not my soul's own. That said, I'm six months into what was supposed to be a year-long Substack about what I learned, and I'm conscious my recovery will be lifelong. : )
I cannot wait to see what you experience when you share your miscarriage experience. So, so many are aching for stories to help them understand their own journeys; and I suspect in sharing you will find yourself healed by the process and in the connection. All the best to you.
Gina, I am honestly shocked that you could not cure your stage 4 colon cancer with juicing! What is wrong with you? You must not have done it right!!
But seriously, I hope the joking is ok :). I still borderline believe I can get pregnant by juicing, so I am squarely making fun of myself here. It is such a seductive thing to believe.
Im glad to hear you are feeling less weighed down by ego and that you are writing! Two seriously excellent outcomes of a "lifequake" (to use Bruce Feiler's term)
I’m TTC and this kind of thinking has been driving me crazy for monthes. I’m basically listening to podcasts about Jung and astrology to help convince myself that I do not have control over sooooo many things. Thanks for writing this.
In the face of ugly life events that temporarily send me deep into the morass of self-doubt, I ponder all the other ugly events (and some are hideous; just saying) that I have survived better than I could have ever imagined. That helps.
1) That doctor was a dick and blamed you for something he had to know was due to inexplicable causes in part at least. (Get women doctors when you have a choice.)
2) Become friendly with statistics and the math of things and frame your questions in those terms. E.g., how likely is this to work?
3) Set the bar low. Just throw that misshapen fucker out. Who said the bar applied to you, anyway?
4) Crying isn't losing. People who can't cry manifest it in other ways, at least I do. Let those tears flow and then when you cry when you are happy, you'll realize it's all one big, miserable ball, this life--a beautiful terror and our expression of it is an awful love.
I am beginning to untangle myself from this poisonous vine, to the extent I am beginning to see it. Thirty years ago a dear friend was diagnosed with cancer. She did a program with a (in?)famous individual who has spontaneous remission of their terminal cancer. The program required her to fully accept she had given herself cancer. She told me she could have agreed, except her cancer is a pediatric cancer, she was one of the oldest known cases dying at 28. That was her line in the sand: that a precious innocent baby does not give itself cancer, doesn’t choose agonizing pain, a failed bone marrow transplant and an early death. We say things to ourselves that we would never say to a child, or I hope not.
Thank you for the phrase ‘empowered helplessness’ that reveals the lie: its as if we are strapped to a table and society tells us we can undo our own straps. Its a comfortable lie because society can blame you for your circumstances and doesn’t have to do anything to help. That doesn’t only play out in health. (I would like to punch that complementary practitioner who harmed you too.)
Wow, the story about your friend is extremely powerful and heart wrenching. I have also had an alternative medicine practitioner show me a video of someone shrinking a tumor through mindfulness practices, with the message that health is a matter of mental effort. It's a highly insidious idea, and I'm so glad that your friend was able to draw that line so that she didn't blame herself during her life for something that was so obviously out of her control.
The hard part is that I also do believe in many aspects of alternative medicine, and I even believe that there are many ways we affect our health that are not "understood" in the scientific sense of the word. So striking a balance in my beliefs has proven illusive.
I love the image of being strapped to a table and trying to undo the straps. Haunting and beautiful!
I’ve come down to the idea that we influence our health, we don’t control it. Its the idea that we can or should control it that damages us. We would rather blame ourselves than feel helpless. Emily Nagoski (who cowrote Burnout and wrote Come As You Are) says when we think we need more grit, we need more support, and when we think others need more grit, they need more support. I read that a few months before I was felled by mecfs & I’m so glad I did, it definitely helped to reduce my suffering.
Love love love that quote. That rings so true for me.
The self blame is particularly resonant for me in the context of getting pregnant. It’s the one thing I can’t control, but it’s easier to blame someone, so I blame myself. Thank you for sharing your story.
<3. Yeah, the concept of "having no control" is a very difficult one, apparently!
One visual a therapist gifted me (which I believe comes from IFS - Internal Family Systems), was to view all these internal voices as all lovable parts of myself. Even, and if not especially, the part that is not at peace with "what is". Because baked in the act of accepting her is peace just as real as any other.
There is still a voice inside me that thinks I could have avoided getting cancer. It doesn't run in my family. I am young, relatively healthy. And yet, it happened. I must have misstepped somewhere along the line.
I didn't like the feeling of resenting my own body, which seemed to be common for many young cancer patients. A resounding and understandable "how could it do this to me? how can I trust my body again?" was all over my support groups. But it felt strange to blame such an innocent thing. I saw my body as a casualty of the whole experience. So instead, I took to the feeling of "how could *I* have done this to *us*? I was in charge of you and I messed up so badly."
I think it was easier to set the blame on something I could control and correct in the future - my choices. If I could control choices, then I could avoid it happening again. It wasn't until I had admitted this thought to my partner when I realized how much of a chokehold the self-blaming had on me. I think he was taken aback by how this wasn't obvious to me and said (very softly and with concern) - "You know there's nothing you could have done, right? Healthy people get cancer all the time."
But if that were true... if healthy people could get cancer and unhealthy people could have smooth pregnancies then some part of me has to admit, I really have very little control over anything. It can be painful to get lost in that thought, but I guess that's the whole endless lesson in being human. None of us seemed to have mastered it quite yet - at least not in a way that keeps us in pace with modern life - and there is comfort in that . As you said, it is complicated. Thank you for continuing to share these stories with so much compassion and clarity.
Wow this hit hard: "how could *I* have done this to *us*? I was in charge of you and I messed up so badly."
Love everything you said here, of course (and everything you say, ever!). I've been thinking about you a lot as I am reading a history of mind-body medicine which tracks the origins of some of our reflexive beliefs about mind-body healing to their historical roots. For example, there is a notion that the mind can health the body if only you believe hard enough. This book draws a direct connection to the Christian belief that faith heals....all this stuff is very deeply ingrained.
As another "healthy" person who got cancer, I can so relate to this. Deep in the shadow of my heart, I felt I knew why I had gotten cancer, why I didn't deserve to survive it; on some level, the Catholic girl in me felt like I was doing penance. It took me years of great therapy to (mostly) get past this. On some level I feel like cancer healed me, but man it was a brutal journey to get there!!
Oof totally. I also have that young Catholic girl in me who felt the same... so real. But are so many parts of the experience that brought me into a deeper wisdom about things, maybe even a greater peace (TBD! lol), and I am grateful for that. Thank you for sharing this, Gina. ❤️
Having miscarriages while trying to have kids is incredibly common and, understandably, no one talks about it until years later. The hard part is that you need to hear about it at the time you are going through it so you don't feel deficient. I was amazed at how many friends had had some kind of miscarriage along the way. All that quiet, secret anxiety when we were trying. No one has a crystal ball, though. No one can tell you it will all work out. But, it really does most of the time. I'm 54 with twin 21 year olds and a 19 yr old. I really nailed myself in the process, mentally. try to be kind to yourselves if the going is rocky. It is for so many people.
It is indeed so common! It is also so common for me to hear about how common it is! It is less common for me to actually hear from other people going through it because, as you said, it's not something you really want to write about on the internet in the heat of the moment. I am trying to balance that--write about it soon but not too soon. It doesn't have to be perfect. We see a theme :)
I hope to look back in my fifties with the same perspective. My dream is to have three, a dream I have recently been more willing to state rather than shying away from it in fear. Put a stake in the ground, you know!? I can dream it even if it might not happen for me.
Stress definitely affects health. This is immediately evident, even in appearance it is elementary, if you are in constant stress, your hair falls out, your skin becomes dull, and so on. How to get rid of it? Ideally, of course, draw up your ideal schedule, for example, go to bed as early as possible and get up accordingly, sleep for 8 hours, of course, engage in physical activity and indulge yourself with some little things. But I also believe that the environment also strongly influences our state of being in general. I surrounded myself with people who do not annoy me, on the contrary, they always support and inspire me, and that's great! You have to start small.
I agree with all of this, Ted, I think that environment and stress and relationships do affect health. The question is, how does one believe that and also navigate something like infertility or chronic illness? Because, while stress and environment may be a factor in my infertility, they also very well may not. There are hundreds of other factors at play, most of which can never be known.
The problem I face is that I could always do more. I could always cut out more activities from my day, I could always eat a more limited diet, I could always have more tests and home inspections, I could move to the woods. The questions is, where do I draw the line and allow myself to live?
I really sympathize with you in your really big problem, it breaks my heart when decent people who want children do not succeed. Since I am not an expert in this (and I think you have already turned to doctors and people who understand this), I can only support you! I can say what just made my life better, what I felt in my own skin. You, rushing after ideality, only get more nervous (after all, there is no absolute ideal, since there will always be some little rubbish that poisons life), you can, for example, draw up a schedule for yourself, where a couple of days a week (1 or maybe 2) you abstract from of all, wake up early, arrange, drink water, take a walk and read a good book, or meet a person whom you have not seen for a long time. Such moments in life will probably lighten your burden and you will notice the lightness in your soul.
I am sure that you are doing everything possible to achieve your goal, but also do not forget about yourself, about rest, about positive emotions! Of course, I am not an expert in this matter, but I will root for you, and I hope that you will someday publish an article with good news, where I can congratulate you from the bottom of my heart!
Such a great read. I actually just wrote similarly about the pressure to be perfect to conceive https://open.substack.com/pub/thebardo/p/perfectly-conceived?utm_source=direct&r=18lsan&utm_campaign=post&utm_medium=web
I love your term ‘Empowered helplessness’ Rae an energy I have spent the last 3 years moving in and out of because infertility can feel just plan helpless at times. But I have a pattern of breakdown to breakthrough so when it feels particularly crap I know I’m close to the upwards energy.
I never aim for perfection when I take care of my body - it’s always what makes me feel good, is fun and gives me that spark of vitality - I don’t believe in restriction when I’m already battling that so much.
I think your orientation away from perfection and restriction sounds super healthy. Thanks for sharing your journey...and you were a midwife!
This is too true: "So when I see a woman I perceive (on sight) to be more unhealthy than me with three children under five, I’m not ashamed to admit I think of: all the supplements, the acupuncture, the herbs, the tablets, the pessaries, the injections, the scans, the blood tests, the swabs, the cameras, the probes, the sedations, the lab results, the infusions, the paperwork, the passwords, the online portals, the consent forms, the train journeys, the money, the time, the stolen peace of mind and feel pretty hard done by."
There is a reason everyone close their eyes while hugging someone. Nothing else matters than letting you know you are loved.
After walking through the gauntlet of later-term miscarriages and fertility treatments, I came out with one conclusion: I expect myself to be able to make everything nice for everybody else. It's my job to keep things tidy (tidy emotions help people love us!).
I have told more than one friend in the same Fertility World that this is the first time where she won't be able to feign control and guarantee a happy ending. Because this isn't an issue with a negative mindset; this is the human body delivering messages.
Even with the most skilled doctors and the most diligence, you can give and give and work and work and your body can still say, "Nope, not gonna happen." And there's no "making it nice" for people watching from the outside. You either get pregnant and deliver a baby, or you don't. It's the most exposed I'd ever felt in my life. I was "failing" because I wasn't able to drag myself across a finish line the way other folks wanted me to (naturally, no interventions, in line with Mother Earth!). I couldn't work *just a little harder* and make everything nice.
100% feel all of this. Our culture is in love with stories of overcoming and victory, as you say. I am acutely aware that I have been and am still pursuing this kind of story. Even that awareness has not enabled me to make a genuine shift into some other mode of acceptance.
One thing I have succeeded at is accepting that I'm not in a mode of acceptance, if that makes any sense :). I am not ready to "accept whatever happens," and "be at peace." I hope someday to get there. But feeling ok with my range of feelings on the subject of pregnancy has been very liberating for me. Beating myself up for not accepting the situation was only another layer of hurt.
I definitely have the shame and guilt about not being "natural" and "in line with Mother Earth." I am cooking up a longer essay on all these topics--it's taking awhile because it's hard to find the words!
I do think we're bullied a lot into thinking we ought to *enjoy* (or at least be less human-y about) things that cause us pain (couched in, as you say, "accepting whatever happens"). I wonder if "acceptance" in a truer sense is a place of resolution in mind and body about things that are out of our control?
In trauma therapy they talk a lot about the body needing to "digest" what has traumatized it — that it's the work of the physiological mechanisms and not just a "snap into it" mindset.
I can imagine the relief you felt when you gave yourself permission to feel your genuine feelings around pregnancy. I anticipate your post being a balm. <3
Feelings are for feeling, and being unable to (or slow to) conceive when you want to is so so painful. I’m glad you can honour your heart. It takes less energy than tamping down the emotional gunpowder and hoping it never blows up ❤️🩹
yes, I do, too - though I think I'm similarly working to reframe this idea! it's hard. and I think the self-blame narrative is reiterated through social and other media sources (and has been, throughout my entire millennial-adult life). I'm also grappling with previous miscarriage that I'm nearly certain *was* caused by mold (because we found a lot of mold in our home and had to leave); AND YET, I still find myself circling the idea of, "but if I hadn't chosen this house..." the self-blame narrative runs deep. ♥️♥️ in this with you. the both/and of self environmental factors is a mind-trap.
Hi Alycia, I'm so sorry to hear about your miscarriage, and the moldy house. I have honestly never met a woman who has miscarried and not blamed herself in some way (though I'm sure she's out there, and would love to hear from her!)
I definitely am interested in how social media reinforces the notion that we are individually responsible for our health. I don't spend much time there, largely because I had to get off of it during the early part of my infertility journey. But I can imagine that it's hammered in there: look at all these healthy women eating beautiful salads! Is it that kind of thing?
from my experience, it's more about the social media (and consumer) narrative around control - we can control our outcomes by doing (or buying) xyz. I will admit, though, I often feed my own anxieties on Instagram - so, I'll click on posts about environmental toxins and then panic about how I can (or cannot) control my own outcomes, or what I've done or not done to create certain outcomes. does that make sense? just one experience of many, but that's what I mean!
Totally makes sense. And yes - I supposed every product is in some ways being sold on the basis of promoting control: controlling our image, our health, etc.
I was really taken with Eula Biss's book On Immunity, (which I mentioned in this post), because she does such a good job wrestling with the question of toxins (among many other things - it's a masterpiece). There's no way I can synthesize her whole line of thinking and do it justice, but I do recommend it if you are interested in a very wise perspective on the feeling that we live in a toxic world.
I read it years ago, in the depths of considering vaccinations for my babies - but not since the pandemic! I wonder if it would offer me a new perspective now ♥️ thanks for sharing! really loving your work here.
This really resonates. I feel this all the time and I’m on a similar health journey. We’re in it together! Hope to become a full subscriber soon!
I'm glad it resonates, though also sorry it resonates :). Thank you for reading!
The paragraph on decision-making, oof! I feel seen right now. It reminded me of the time someone asked me to suggest a song. I froze. I couldn't think of a single piece of music because my brain started doing all kinds of mental gymnastics, considering what the song would say about me.
I have always had difficulty answering benign questions about my favorite color or movie. Will they think I am too Indian if I pick something bright, say mustard? Same with food. My partner often asks me what I want for dinner; as you can imagine, my brain freezes, or I get overwhelmed with all the choices.
Thank you for sharing this beautiful piece of writing with us.
TOTALLY HEAR YOU ABOUT THE SONG THING. In my twenties if I was asked my favorite song, I would respond, "I don't really listen to music," which in hindsight was probably even worse than blurting out "taylor swift." But I wanted to avoid the inevitability of labeling myself as the type of person with that type of favorite song.
Have you ever been subject to one of those introductory circles, where everyone goes around and says, like, one wild thing about themselves that no one would ever guess, or something like that? That shit makes my palms sweat.
SAME!
Yes, been there or share a fun fact about yourself! I hate all of those.
Like everything of yours I’ve read, I read this and rolled it over in my brain again and again. Actually, I read this essay twice because I was trying to find the part where you said you somehow got access to my thoughts and then copied them down perfectly. Weirdly, I couldn’t find that bit.
It did also make me realize that maybe I blame myself less than I used to? Maybe I’m more self aware about the blame I pile on my own back. I’m not sure which. But after a decade of chronic illness something did change last year. I don’t know if it was learning more about biology or untangling myself from religion. Maybe both. It was definitely due in part to leaving social media. That quieted the self blame and what I think of now as Post Scroll Stress big time. When I take care of my body now I’m aiming for…Nourishment? Kindness? Slowness? I’m not sure of the word but it’s changed and I’m grateful and we’ll see if it keeps up.
I actually just published something tangential to this and linked your essay. https://peaceofthewhole.substack.com/p/we-werent-made-for-this
It's so awesome to hear that you can see your own progress on this front, Ema! That's definitely a big deal.
It's fascinating to me how much chronic illness, religion, and social media are showing up around this topic, even though they seem at first glance totally unrelated.
I am SO with you on hating this internet tendency to provide the answer. It is so tempting when telling one's own story to be like, "here's what I did that worked, you should do that." So I get the compulsion. But man, it is seriously not a helpful mode of communicating about these issues.
Well, I have my third at age 35 but I also had twins at 33. I think 3 kids in two years is a lot. A lot of diapers! If I could change one thing about myself in those first 10 years of mom-ing it would be to drink less wine. Young parenting and wine are kind of a thing. Wine makes us cranky the next day. Kids are just kids and need a lot of attention.
I felt this whole essay so, so hard.
Having been through both infertility and stage 4 colon cancer, I know firsthand the shame felt when your body disappoints. As a lifelong pleasing achiever, it was extremely difficult for me to accept the idea that I did not have control over my body, that no amount of positivity or juicing could ensure my survival. After four years, I could honestly say that cancer is the best worst thing that ever happened to me, as it taught me about fear and ego, control and shame: and those lessons, while brutal, have freed me to live a life that is more connected and purposeful, in part because I am no longer fighting for control I will never have, or trying to win battles that are not my soul's own. That said, I'm six months into what was supposed to be a year-long Substack about what I learned, and I'm conscious my recovery will be lifelong. : )
I cannot wait to see what you experience when you share your miscarriage experience. So, so many are aching for stories to help them understand their own journeys; and I suspect in sharing you will find yourself healed by the process and in the connection. All the best to you.
Gina, I am honestly shocked that you could not cure your stage 4 colon cancer with juicing! What is wrong with you? You must not have done it right!!
But seriously, I hope the joking is ok :). I still borderline believe I can get pregnant by juicing, so I am squarely making fun of myself here. It is such a seductive thing to believe.
Im glad to hear you are feeling less weighed down by ego and that you are writing! Two seriously excellent outcomes of a "lifequake" (to use Bruce Feiler's term)
I’m TTC and this kind of thinking has been driving me crazy for monthes. I’m basically listening to podcasts about Jung and astrology to help convince myself that I do not have control over sooooo many things. Thanks for writing this.
In the face of ugly life events that temporarily send me deep into the morass of self-doubt, I ponder all the other ugly events (and some are hideous; just saying) that I have survived better than I could have ever imagined. That helps.
1) That doctor was a dick and blamed you for something he had to know was due to inexplicable causes in part at least. (Get women doctors when you have a choice.)
2) Become friendly with statistics and the math of things and frame your questions in those terms. E.g., how likely is this to work?
3) Set the bar low. Just throw that misshapen fucker out. Who said the bar applied to you, anyway?
4) Crying isn't losing. People who can't cry manifest it in other ways, at least I do. Let those tears flow and then when you cry when you are happy, you'll realize it's all one big, miserable ball, this life--a beautiful terror and our expression of it is an awful love.