With a sudden medical crisis, this lifelong caregiver is in the unfamiliar position of being cared for. Shame, guilt, impatience and discomfort shadow me. I'm learning to surrender to care.
JOIN THE CONVERSATION: In the comments, share your responses to any of the prompts. This is a safe space to share and to learn from and be supported by one another.
“Do you have resistance to accepting care from others? Dig deep and ask yourself what fears lie behind that resistance.”
I don’t have to dig at all, I know exactly what it is. Even though I don’t feel that the people I care for owe me anything, I feel if I let someone care for me then I’m in debt to them. I don’t wanna owe anybody anything. I don’t want to be beholden. Irrational. But there you go
Hi Amy, you're amazing to have processed your medical crisis and derived these precious lessons so quickly. For me, it had take some years to process my own medical crisis at the age of 37--still quite emotionally immature and stubborn to be in full control as the one who care for loved ones and who wanted to fix everything about them and myself!
Pondering about your prompts, I can say that I definitely am much more used to being a caregiver than a recipient. I was literally born into the role of a caregiver. My parents' expectations for me to take care of them was assigned to me when I was a little girl. Beyond the basic care my parents provided in raising me, I did not receive any solid emotional care and guidance from them. Then in all my relationships, I took care of my immature partners as they behaved like teenagers.
I have longed to receive care and love, but even in my most desperate and vulnerable moments, such as after my major surgery, I still had to provide care and did not receive care. Due to partner abuse and neglect, I have grown into not believing that I deserved care. But a part of me longs for that.
My mom is worse than me in this regard. After she had her knee surgery and I went to care for her, she resisted help. I asked her why, she said she felt uncomfortable and didn't deserve love. It was then that I discovered her hardened exterior was a shield against her vulnerability and the low self worth. How can I blame her for that if she had never really received the love and care that a child needed and yearned for?
Regarding the "rice," I think my grip has loosened up a great deal since I realized how futilely I had wanted to keep the thing that I deemed the most important and rewarding in my life--a romantic relationship, and counted on one single person, my partner, to validate my worth and prove that I'm worthy of love. After having been betrayed, I let go of this clutch and I'm gaining so much more--reclaiming freedom, my own voice, self worth, and self love.
As for rest, I'm like you, I modeled after my mom, who never had a moment of rest before she retired. But I have become more "idle" and have let go of squeezing too many tasks into a narrow bottle. It's a work in progress. Strange isn't it, to think of instilling more rest into our lives as "work"? I have to laugh at my own absurdity 😹! I do hope that the rest you have put into your days will continue to be a steady part of your daily schedule from now on.
I used to believe in "mind over body," but now I believe in "body over mind." Obey the body, and the mind will be glad. 😻💕
Thank you so much for joining the conversation in such a rich way, Louisa. I appreciate your kind words on the lessons I am trying to draw from this experience. I can see all the ways in which the caregiving role was instilled in you from a young age, and how it influenced your romantic relationships. I am sad for the betrayal and trauma you suffered as a result. But what a liberation you now enjoy by relinquishing the rice of the need for the romantic relationship to validate your worth: that you & I can do that wholly and lovingly for ourselves. Yes the ‘work’ of rest is kind of an oxymoron but let’s support each other to keep moving in that direction. And finally, yes, body over mind. A new mantra. ‘As long as you do not live totally in the body, you do not live totally in the Self.’ —B.K.S. Iyengar, march 11, Book of Awakening 😀
Thank you so much for joining the conversation in such a rich way, Louisa. I appreciate your kind words on the lessons I am trying to draw from this experience. I can see all the ways in which the caregiving role was instilled in you from a young age, and how it influenced your romantic relationships.
First of all, Amy, I am sorry you are in pain — I've been there with a herniated disc and grueling sciatica (again, at the worst possible time when I was doing way too much physical labor fixing up my house to get it ready to sell, and then moving four states away). It's exhausting and scary — but I promise you, it can and will get better. It does take way more time than we wish, of course, even when we're open to the lessons the pain is there to teach us. Including the humbling experience of being cared for and needing help: at such times I try to remember the example of my late husband's mother, a highly self-possessed, gracious but formidable woman who believed that she damn well deserved help when she needed it, although she was nice about it. It worked for her!
Jan, thank you for joining the conversation & for your kind thoughts. Do you mind sharing how you eventually resolved your herniated disc & sciatica? As I begin treatment with a very good & experienced chiropractic doctor here in Barcelona (8 mins walk away & Australian, lucky me), I wonder how others have approached their treatment. I am sure you like me felt that you were physically capable of all physical labor involved in a move; our bodies tell us otherwise. Your late mother in law had the right attitude!
Happy to share, although of course you're aware each case is different. My sciatica was caused by the ruptured disc at L4/5 (I think that's the most common area for lower back misery). I was with Kaiser in L.A. at the time -- they required me to do PT and wait for 3 months before admitting me to their chronic pain clinic. Then they sent me to a neurologist who examined me and prescribed a spinal cortisone shot under fluoroscopy (THAT was fun), and told me to not even call them for two weeks because it would take at least that long to have any effect. I did all of that -- and I think it helped, but what really seemed to heal me was the program my personal trainer nephew put me on: 20 minutes daily on the elliptical followed by a 20 minute session of Egoscue Method exercises (on a DVD he gave me). Pete Egoscue is a physiatriast is San Diego (I think) who advises postural exercises -- I didn't do all the ones on the video because some would've been to challenging for that area of my back, but I did them faithfully for over a year, even during our move and while I was wearing a weight belt just to function while awake. And eventually, it all cleared up. I have flare-ups from time to time (just recovering from one now) but I work out and do yoga 5 or 6 out of 7 days and make sure to walk a lot, and that seems to keep me going without restriction almost all of the time. Sorry for the voluminous answer, but you asked!! ;-) BTW, do you have a foam wedge to put under your knees if/when you lie on your back? It really helped me when I was in a lot of pain.
Jan, your response helped me so much, thank you. Yes, I have the spinal issue and possible herniated disc on L4 at L5, too. How interesting you mention the Egoscue method exercises because my good friend Louisa said that helped her the most (and continues to be her go-to therapeutic approach) when she had the same issue with her back. I was working out and doing yoga several timesa. week and long to return to it. I had also been following a program of yoga therapy and myofascial release with my therapist Michelle Andrie, who I wrote about above, but I neglected quite a bit the massage ball rolling and exercises she gave me and I think if I hadn't, it might have prevented the crisis I now find myself in. I long to get back to something like the elliptical but all in good time. For now, it's one day at a time as my back is still in crisis. And yes, I've now ordered the foam wedge for my knees (with a strap so it won't slip) along with some other good tools. I really appreciate you sharing about your experience. I think the lesson is once I get back to my normal functioning (and I hope I do!), I won't neglect an exercise regimen as I had been during the busy period of my move.
Good on you! And yes I know how much you long to return to yoga & exercise, but PLEASE slow your roll; it's a huge challenge to be as patient as you need to be but for now, less truly is more.
Amy, thank you for sharing your lessons about caregiving, they are very wise. I hope you continue being gentle with yourself as your body heals.
To address some of your prompts (which seem to have opened something up in me since I don't usually write such long comments!):
As the parent and partner who’s always had the more flexible job, I’ve been the one to plan and prepare meals. I cook, my husband does the dishes, and I’m quite happy with this arrangement. A couple years ago, he took a sabbatical from work, a much-needed break after over 25 years rising through the ranks of the company he joined right from university. I however, was busier with work than I had been in a while, finishing up a postdoc, teaching, writing papers for a national research project I was involved in. Our roles shifted slightly, and he began preparing dinner more often when I had a long day of work. This was a relinquishing of control on my part, and care on his. It took me a bit to let go of the guilt of him doing something he didn’t like to do (and that I did like to do but had no time), but I came to appreciate how we shifted our care roles to suit our needs.
I do feel like the nurturer of the family, but I’d like to think our caregiving is interdependent. We each need different things from one another. I believe this is how humans are meant to live, relying on each other (our partners, children, parents, friends, family) for various things, at different times, for different reasons. This has helped me release the guilt I used to have when I couldn’t be there in the way I like to be, for family and friends. I’m there when I can be, in ways that work for me, and they’re there for me when I need them. (This is relatively new thinking. Before my work in critical disability studies, I’d have said that for me, needing care signalled a failing on my part, the idea that I must be independent and do everything for myself and others so ingrained in me.) Of course, it doesn’t always work out that people are there for each other, and someone may be left feeling alone or misunderstood, but this interdependency, being in-tune to each other’s needs, is what I strive for. It means resisting the social conditioning you mention that some people (women, immigrants) should always be in the caregiver role, along with the backwards idea that caregiving is a low-level job. Caring for one another is everything in life. If only we cared for one another more, if our leaders cared about the well-being of other humans over power and money, the world political landscape would be much different than it is today.
Like you, I need control. It stems from a childhood of feeling out-of-control. I equate control with safety, but sometimes control controls me. I’m trying to not control what I can to make up for what I can’t and just let things be, but it’s hard to change this pattern. I’ve only just come to realize in the last few days that “my rice” (or at least one grain of it) is the constant longing to belong. I’ll be writing about this soon in relation to my birth mother, and what I know she cannot give me.
Thanks for opening up this discussion of caregiving. Sending you lots of virtual care for a continued recovery! Xoxo
Tracey such a beautiful, thoughtful and rich comment. Thank you for engaging with the prompts so deeply. I am so glad it opened up something for you. I think the interdependence of caregiving and receiving you’ve created with your husband is the ideal. Thanks also for sharing about relating to the need for control for its sense of safety. And I also believe your ‘rice’ of the need to belong is very common and human with of course its different variations and intensities—and this longing for what your birth mother couldn’t give you seems like a brave & powerful place to explore. I look forward to reading about it. Thanks for your kind wishes for my recovery.
Dear Amy, This is a beautiful reflection on caregiving and being cared for by others, but I wish that you didn’t have to go through this ever, especially now when it has interfered with your plans for travel and adventure. I love the way that you share your personal experiences and educate us on caregiving facts, especially the gendered nature of it. Your research and the resources you provide are invaluable. The amount of work that you must have put into this column is a little ironic though! However, as writing is your passion, maybe it doesn’t always feel like work. As I attempt to ease into retirement, and as I’m also currently on Spring Break, I find that I feel guilty when I’m not working or moving. I hope that I can keep your words about rest in mind and let go of that guilty feeling. Meanwhile, I hope that you are resting and recovering and will soon be climbing Machu Picchu or achieving another of your dreams. Thinking of you!
Amy this is so lovely and vulnerable and generous. The love you give to other teachers, writers, healers, caregivers and the love you give to yourself as you navigate being the care-receiver. It's so hard to be where you are and yet the key is surrender. Giving up control, or the desire for it. Resting to process the cultural shame in accepting help. I'm sending you love from over here as you process such a big thing as receiving. It's somehow bigger than the Camino, bigger than a transatlantic move. ❤️❤️❤️
Beautiful reflections and prompts Amy. Take a very good care of yourself. You deserve the rest, and the care. And the picture with your daughter is just beautiful!
Love your insights that arose despite all your suffering. I too prefer to be the caregiver rather than the patient and have good discussions about this with my husband j and my 98 yo dad who feels the same way - and over the last few years has become almost totally dependent on external help. Since Covid I have been the patient on and off and J takes good care of me when needed. Had to let go of my self judgment of being a burden. I always think I am not a control freak, as similar to you, I let people do their thing when in my home . I do get reminded by things almost daily that tell me otherwise- simple things like a colleague controlling the document on a shared zoom screen. Drives me crazy when I can’t move it at my pace, and stop where I want and must follow the colleagues moves. I see this as foreshadowing of old age where the ability to control decreases and it gives me more compassion for my dad’s situation and his world that keeps shrinking. Thanks for stimulating my mind on these points and hoping your days are restful and the natural methods are helping your pain to decrease. The body can heal itself !
Thank you Margaret for these thoughtful comments. I always appreciate understanding how our experiences intersect and a perhaps unacknowledged dependence on need for control that may not look as obvious. I also see stress is part of the story of this low back pain: moving countries is certainly stressful even if we want it & look forward to the change. I can well understand your 98 yo dad’s frustration but amazing how he’s going strong even within a shrinking world of independence. May you stay healthy friend! Our dear teacher Michelle Andrie & I are having an online session Friday & I so look forward to that as a healer of low back pain I deeply trust.
Good to hear. Michelle will help so much - the physical and the spiritual. I’m due for a session too in the near future I know you will be feeling better soon as you are doing so many good things to help yourself
Aww Amy, I'm so sorry you're in such pain, and I can feel the anguish of being the care-receiver after everything that's happened. Sending you standing-up-gentle warm hugs and heat packs if those help!?!
I must've been feeling some telepathic empathy pain since I've had left-side soft-tissue muscle spasms for the last couple of days after twist-ping-ouch!
Bless you for mentioning Carer Mentor and my work. I hope you know how much I appreciate you - ever since those early days of figuring out how to 'Substack!'
To answer your prompt is difficult since I'm still caregiving, but there's been a few moments/events where my friends have given me a soft-place to land without questions/expectations knowing I'm a hot mess...music, cooking together, sharing meaningful quiet times together. In the darkest time, having a safe place to cry without having to explain things, be anything or do anything - this was the precious gift from my closest friends.
Dear Victoria, thanks for this thoughtful response, I feel those hugs and yes, heat packs are helping when the pain gets really intense. I am choosing natural methods, physical therapies, for healing along with all the other good practices I've developed in recent years like breathwork and meditation. When I think of resources for caregivers, I always think first of your generous Substack publication. I am so glad you have the kind of friends who can give you that soft landing place when as you say you're a hot mess, which any caregiver will be at some point. I can also be that safe place to cry without explanation--just so you know! Now we are almost in the same time zone. Where in the UK do you live? I still hope for a visit to the UK at some point this year to see family and friends. Would be so wonderful to meet you in person, Victoria.
Thank you, dear Amy. I appreciate your very kind words, warm wishes and your kind offer of support. Thankfully, things are not as tense, fraught and edgy as they were with Dad before he passed. Hot mess is an understatement that I didn't realise I was in until I was with my friends - I'm sure you can relate! I really appreciate your kindness.
I'd love to meet in person, Amy but it's not something I can easily plan to do. Sorry! I don't share where I live online. Let's continue this convo by email.
This was a great post - dealing with stuff I think about often!
How interesting that you speak of needing to be in control. All those years of having Passover at your house, I so admired your way of being able to just let everyone of our crazy group just take care of things as they wished to. Since you moved away, I have never been able to do that - instead bossing everyone around to do as I wished (and often demanded). Boy, is that a lot of work!!
So...as a fellow control freak I have also found the act of giving up control extremely difficult.
Every time I have had to face checking a new age checkbox on a page when signing up for something has given me cause to think about the new age that I have just entered. And its not always a happy thought. While I have never been quite as much an adventurer as you are, I have always felt that whatever needed doing or I wanted to do, I could do it. Well, getting older has taught me that was a really dumb idea. I think twice now when I need to get up on a chair to reach a high cabinet, when I have to carry something very heavy from the car to the house, and I have learned to take naps in the middle of the day if I am tired.
When Håkan had his brain bleed 10 years ago, he came home after spending 2 months in hospital, with the right side of his face paralyzed, most of his hearing gone, and his sense of balance totally gone, making every step he took extremely difficult. He went from needing a rollator to walk to being able to make due with just a cane. And he learned to be able to accept help when he needed it. But it was, and still is at times, a very hard transition. And for me by his side, it was difficult to see this extremely competent man become one who needed help. And it also made me realize that it was a good thing that I never decided to join the nursing profession. 😏
And as you seem to be discovering, as much as we like to think we are in control of our bodies...we are not. Our bodies have a very bad habit of reminding us of our lack of true control. As an example...right now my brain is saying that I would like to get up from this computer and go into the kitchen and get a second cup of coffee but my body is say noooo, I'd rather not get up. Guess which is winning right now - I am still sitting here...
In any case, your back will get better. They usually do. Though I have discovered at this advanced age, things don't necessarily return to being as good as they were before things started hurting. But better is always welcome. And you will once again be able to do the things you want to do. But maybe a bit slower. And that is not always a bad thing.
Hilarie, thank you so much for being part of the conversation. I really appreciate you as my friend of so many years; I hope you know that. I am glad you found this post thought-provoking for you; I wrote it for my own healing and understanding and am always glad when it lands well for a reader, too.
It's interesting you bring up the Passovers we hosted. I think for me control looks a little different than needing to as you say "boss people around" and be in charge of every detail. I do know how to step aside and let others help me--but this situation is making me feel more helpless than I ever have before. I think my issue is the control of the perfectionist; of needing things--the big things, my big dreams, my projects and creative undertakings--to all go according to plan. And having a hard time letting go of the idealized vision of whatever the thing--the move, the trip, the novel, the relationship--will deliver for me in terms of satisfaction and contentment.
I am learning that true satisfaction and contentment must come from within myself, which means loosening control of external circumstances that I think are within my power. Like how my body will respond when it has been traumatized. I don't know how or when my body began to suffer this trauma that has emerged in my severe low back pain but I think I can trace it back to November 2022 when Mom's health took a turn for the worse, she was in rehab, it became clear I would be her full-time at home caregiver on the heels of my divorce, and wow--were circumstances so far out of my control.
Still, I tried to make my world continue to fit an idealized vision of how I wanted things to be. That's not all bad. I did things during my caregiving years that were good for me--worked on my novel, started a Substack, maintained connections to friends, took much-needed vacations--but now realize that ignoring the frequent low-back spasms I began to suffer in Nov 2022 was a way of exerting control, because I was resistant to the message of my body.
So I take to heart all the ways you are now listening to your body, no longer dismissive of the realities of an aging body/back or the good idea of a nice nap. And thanks once agaiin for sharing Hakan's experience. He has had to make an epic adjustment and I know how much strength it required, mental and physical, to do that. And you have been his caregiver all along. So please don't stop taking care of yourself.
I do intend to heal slowly and mindfully and to practice acceptance of whatever level of back and body health I can return to, in time.
Thanks for that kram from Sweden! I will see you at some point this year--I am determined to be able to make that flight!
I hope your back pain clears up soon and you find ease in choosing what feels like enforced rest. Brené Brown has written that if we cannot receive without (self) judgement then, despite how it feels, we are not giving without judgement. That has helped me as I adjust to life in the slow lane of chronic illness disability.
Michelle, first, I want to give love to you as you "adjust to life in the slow lane of chronic illness disability," as much love as I hope you give yourself, every day. Thank you for your kind wishes for my back pain and for the encouragement to find ease in the rest, to see it as an invitation, an opening, and not a command that I resist. I always appreciate being reminded of the wisdom of Brené Brown, and her Atlas of the Heart is a frequent reference that I think it would do me well to peruse now. Thanks for joining the conversation, Michelle!
Dearest Amy, thank you for writing this beautifully vulnerable and deeply wise post. It's my favorite of all of your posts thus far. What a wise exploration of all the layers which influence how we perceive receiving care, asking for care and what a powerful re-authoring you've shared!
With you in "letting go of the rice" < for me it's two-fold: getting caught up in wishing some things were different + acceptance of where I am now compared to 10 years ago or 15. 20 years ago. Oh, being present to what is while balancing what can/might be possible. < what can/might be possible has mostly been a positive place for me to co-create amazing paths in work & life, however, sometimes like now, it can be a double-edged sword.
This is all to say, I hear you sister, friend. And I'm sending so much love and respect and cheering you on in your rest and healing. You are worthy of receiving care. ♡♡♡♡♡♡
What a lovely response in every way Kristin. Thanks for sharing your view on co-creation; I love that perspective. And I appreciated understanding that use of double-edged sword; I relate to that, too, all the possibilities can be overwhelming. And finally I so appreciate your thoughtfulness regarding your upcoming visit. I also want to tour Sagrada Familia, so that will definitely happen. The important thing as you say is to be together in this beautiful part of the world,
Kristin, thank you for joining the conversation as you always do, so thoughtfully and honestly and with your full heart and wisdom. Thank you too for your appreciation for this post; that makes me smile. I had to stand more more hours than I probably should have to write it over the weekend but these were the words and thoughts and lessons calling to me to be shared. So glad they resonated with you. You and I are alike in the "letting go of the rice," and I appreciate your reminder of "co-creating amazing paths in work and life," by which I think you mean co-creating with the universe, which requires a letting go, a relinquishing of control. I'd like to hear more about what you mean by this co-creation now seeming like a double-edged sword. I suspect you mean that you are now, as I so recently was, in that hard place of caregiving for an elderly parent--the push-pull of that sense of obligation with our natural desire for freedom and self-determination. I intend to keep resting and healing so that I am fully ready to explore Barcelona with you when you arrive in less than a month now!
My Dear Amy, Co-creation to me has many forms; with the universe, with other human beings, with collaborations with organizations, with art forms, etc. <3
As for double-edged sword, what I meant was in the realm of what can/might be possible has so many layers and at times I become overwhelmed, especially with having a broad Narrative Worldview meaning I always see so many layers simultaneously that what before had seemed a clear path, now seems like so many potential paths that I do not always know which one to take. And that is OK! I am learning to lean into that and try my best to choose a path, knowing it can change.
As for seeing you in Barcelona, I say this loudly, my friend, if our time together is watching the sea from very near your home, or me and you reading to each other while you rest in bed, or me cooking for you, that is all perfect! I do not want there to be any pressure on 'doing.' I am coming to see YOU and celebrate YOU. That does not need to be full on exploring of Barcelona. My only one hope this trip is to see inside Sagrada Familia and if that would not be something you would be able to do (and that is MORE than OK) I would happily go on my own for that excursion. Love you so! Rest well, heal well!
JOIN THE CONVERSATION: In the comments, share your responses to any of the prompts. This is a safe space to share and to learn from and be supported by one another.
“Do you have resistance to accepting care from others? Dig deep and ask yourself what fears lie behind that resistance.”
I don’t have to dig at all, I know exactly what it is. Even though I don’t feel that the people I care for owe me anything, I feel if I let someone care for me then I’m in debt to them. I don’t wanna owe anybody anything. I don’t want to be beholden. Irrational. But there you go
Hi Amy, you're amazing to have processed your medical crisis and derived these precious lessons so quickly. For me, it had take some years to process my own medical crisis at the age of 37--still quite emotionally immature and stubborn to be in full control as the one who care for loved ones and who wanted to fix everything about them and myself!
Pondering about your prompts, I can say that I definitely am much more used to being a caregiver than a recipient. I was literally born into the role of a caregiver. My parents' expectations for me to take care of them was assigned to me when I was a little girl. Beyond the basic care my parents provided in raising me, I did not receive any solid emotional care and guidance from them. Then in all my relationships, I took care of my immature partners as they behaved like teenagers.
I have longed to receive care and love, but even in my most desperate and vulnerable moments, such as after my major surgery, I still had to provide care and did not receive care. Due to partner abuse and neglect, I have grown into not believing that I deserved care. But a part of me longs for that.
My mom is worse than me in this regard. After she had her knee surgery and I went to care for her, she resisted help. I asked her why, she said she felt uncomfortable and didn't deserve love. It was then that I discovered her hardened exterior was a shield against her vulnerability and the low self worth. How can I blame her for that if she had never really received the love and care that a child needed and yearned for?
Regarding the "rice," I think my grip has loosened up a great deal since I realized how futilely I had wanted to keep the thing that I deemed the most important and rewarding in my life--a romantic relationship, and counted on one single person, my partner, to validate my worth and prove that I'm worthy of love. After having been betrayed, I let go of this clutch and I'm gaining so much more--reclaiming freedom, my own voice, self worth, and self love.
As for rest, I'm like you, I modeled after my mom, who never had a moment of rest before she retired. But I have become more "idle" and have let go of squeezing too many tasks into a narrow bottle. It's a work in progress. Strange isn't it, to think of instilling more rest into our lives as "work"? I have to laugh at my own absurdity 😹! I do hope that the rest you have put into your days will continue to be a steady part of your daily schedule from now on.
I used to believe in "mind over body," but now I believe in "body over mind." Obey the body, and the mind will be glad. 😻💕
Thank you so much for joining the conversation in such a rich way, Louisa. I appreciate your kind words on the lessons I am trying to draw from this experience. I can see all the ways in which the caregiving role was instilled in you from a young age, and how it influenced your romantic relationships. I am sad for the betrayal and trauma you suffered as a result. But what a liberation you now enjoy by relinquishing the rice of the need for the romantic relationship to validate your worth: that you & I can do that wholly and lovingly for ourselves. Yes the ‘work’ of rest is kind of an oxymoron but let’s support each other to keep moving in that direction. And finally, yes, body over mind. A new mantra. ‘As long as you do not live totally in the body, you do not live totally in the Self.’ —B.K.S. Iyengar, march 11, Book of Awakening 😀
Thank you so much for joining the conversation in such a rich way, Louisa. I appreciate your kind words on the lessons I am trying to draw from this experience. I can see all the ways in which the caregiving role was instilled in you from a young age, and how it influenced your romantic relationships.
First of all, Amy, I am sorry you are in pain — I've been there with a herniated disc and grueling sciatica (again, at the worst possible time when I was doing way too much physical labor fixing up my house to get it ready to sell, and then moving four states away). It's exhausting and scary — but I promise you, it can and will get better. It does take way more time than we wish, of course, even when we're open to the lessons the pain is there to teach us. Including the humbling experience of being cared for and needing help: at such times I try to remember the example of my late husband's mother, a highly self-possessed, gracious but formidable woman who believed that she damn well deserved help when she needed it, although she was nice about it. It worked for her!
Jan, thank you for joining the conversation & for your kind thoughts. Do you mind sharing how you eventually resolved your herniated disc & sciatica? As I begin treatment with a very good & experienced chiropractic doctor here in Barcelona (8 mins walk away & Australian, lucky me), I wonder how others have approached their treatment. I am sure you like me felt that you were physically capable of all physical labor involved in a move; our bodies tell us otherwise. Your late mother in law had the right attitude!
Happy to share, although of course you're aware each case is different. My sciatica was caused by the ruptured disc at L4/5 (I think that's the most common area for lower back misery). I was with Kaiser in L.A. at the time -- they required me to do PT and wait for 3 months before admitting me to their chronic pain clinic. Then they sent me to a neurologist who examined me and prescribed a spinal cortisone shot under fluoroscopy (THAT was fun), and told me to not even call them for two weeks because it would take at least that long to have any effect. I did all of that -- and I think it helped, but what really seemed to heal me was the program my personal trainer nephew put me on: 20 minutes daily on the elliptical followed by a 20 minute session of Egoscue Method exercises (on a DVD he gave me). Pete Egoscue is a physiatriast is San Diego (I think) who advises postural exercises -- I didn't do all the ones on the video because some would've been to challenging for that area of my back, but I did them faithfully for over a year, even during our move and while I was wearing a weight belt just to function while awake. And eventually, it all cleared up. I have flare-ups from time to time (just recovering from one now) but I work out and do yoga 5 or 6 out of 7 days and make sure to walk a lot, and that seems to keep me going without restriction almost all of the time. Sorry for the voluminous answer, but you asked!! ;-) BTW, do you have a foam wedge to put under your knees if/when you lie on your back? It really helped me when I was in a lot of pain.
Jan, your response helped me so much, thank you. Yes, I have the spinal issue and possible herniated disc on L4 at L5, too. How interesting you mention the Egoscue method exercises because my good friend Louisa said that helped her the most (and continues to be her go-to therapeutic approach) when she had the same issue with her back. I was working out and doing yoga several timesa. week and long to return to it. I had also been following a program of yoga therapy and myofascial release with my therapist Michelle Andrie, who I wrote about above, but I neglected quite a bit the massage ball rolling and exercises she gave me and I think if I hadn't, it might have prevented the crisis I now find myself in. I long to get back to something like the elliptical but all in good time. For now, it's one day at a time as my back is still in crisis. And yes, I've now ordered the foam wedge for my knees (with a strap so it won't slip) along with some other good tools. I really appreciate you sharing about your experience. I think the lesson is once I get back to my normal functioning (and I hope I do!), I won't neglect an exercise regimen as I had been during the busy period of my move.
Good on you! And yes I know how much you long to return to yoga & exercise, but PLEASE slow your roll; it's a huge challenge to be as patient as you need to be but for now, less truly is more.
Amy, thank you for sharing your lessons about caregiving, they are very wise. I hope you continue being gentle with yourself as your body heals.
To address some of your prompts (which seem to have opened something up in me since I don't usually write such long comments!):
As the parent and partner who’s always had the more flexible job, I’ve been the one to plan and prepare meals. I cook, my husband does the dishes, and I’m quite happy with this arrangement. A couple years ago, he took a sabbatical from work, a much-needed break after over 25 years rising through the ranks of the company he joined right from university. I however, was busier with work than I had been in a while, finishing up a postdoc, teaching, writing papers for a national research project I was involved in. Our roles shifted slightly, and he began preparing dinner more often when I had a long day of work. This was a relinquishing of control on my part, and care on his. It took me a bit to let go of the guilt of him doing something he didn’t like to do (and that I did like to do but had no time), but I came to appreciate how we shifted our care roles to suit our needs.
I do feel like the nurturer of the family, but I’d like to think our caregiving is interdependent. We each need different things from one another. I believe this is how humans are meant to live, relying on each other (our partners, children, parents, friends, family) for various things, at different times, for different reasons. This has helped me release the guilt I used to have when I couldn’t be there in the way I like to be, for family and friends. I’m there when I can be, in ways that work for me, and they’re there for me when I need them. (This is relatively new thinking. Before my work in critical disability studies, I’d have said that for me, needing care signalled a failing on my part, the idea that I must be independent and do everything for myself and others so ingrained in me.) Of course, it doesn’t always work out that people are there for each other, and someone may be left feeling alone or misunderstood, but this interdependency, being in-tune to each other’s needs, is what I strive for. It means resisting the social conditioning you mention that some people (women, immigrants) should always be in the caregiver role, along with the backwards idea that caregiving is a low-level job. Caring for one another is everything in life. If only we cared for one another more, if our leaders cared about the well-being of other humans over power and money, the world political landscape would be much different than it is today.
Like you, I need control. It stems from a childhood of feeling out-of-control. I equate control with safety, but sometimes control controls me. I’m trying to not control what I can to make up for what I can’t and just let things be, but it’s hard to change this pattern. I’ve only just come to realize in the last few days that “my rice” (or at least one grain of it) is the constant longing to belong. I’ll be writing about this soon in relation to my birth mother, and what I know she cannot give me.
Thanks for opening up this discussion of caregiving. Sending you lots of virtual care for a continued recovery! Xoxo
Tracey such a beautiful, thoughtful and rich comment. Thank you for engaging with the prompts so deeply. I am so glad it opened up something for you. I think the interdependence of caregiving and receiving you’ve created with your husband is the ideal. Thanks also for sharing about relating to the need for control for its sense of safety. And I also believe your ‘rice’ of the need to belong is very common and human with of course its different variations and intensities—and this longing for what your birth mother couldn’t give you seems like a brave & powerful place to explore. I look forward to reading about it. Thanks for your kind wishes for my recovery.
Dear Amy, This is a beautiful reflection on caregiving and being cared for by others, but I wish that you didn’t have to go through this ever, especially now when it has interfered with your plans for travel and adventure. I love the way that you share your personal experiences and educate us on caregiving facts, especially the gendered nature of it. Your research and the resources you provide are invaluable. The amount of work that you must have put into this column is a little ironic though! However, as writing is your passion, maybe it doesn’t always feel like work. As I attempt to ease into retirement, and as I’m also currently on Spring Break, I find that I feel guilty when I’m not working or moving. I hope that I can keep your words about rest in mind and let go of that guilty feeling. Meanwhile, I hope that you are resting and recovering and will soon be climbing Machu Picchu or achieving another of your dreams. Thinking of you!
Amy this is so lovely and vulnerable and generous. The love you give to other teachers, writers, healers, caregivers and the love you give to yourself as you navigate being the care-receiver. It's so hard to be where you are and yet the key is surrender. Giving up control, or the desire for it. Resting to process the cultural shame in accepting help. I'm sending you love from over here as you process such a big thing as receiving. It's somehow bigger than the Camino, bigger than a transatlantic move. ❤️❤️❤️
Beautiful reflections and prompts Amy. Take a very good care of yourself. You deserve the rest, and the care. And the picture with your daughter is just beautiful!
Love your insights that arose despite all your suffering. I too prefer to be the caregiver rather than the patient and have good discussions about this with my husband j and my 98 yo dad who feels the same way - and over the last few years has become almost totally dependent on external help. Since Covid I have been the patient on and off and J takes good care of me when needed. Had to let go of my self judgment of being a burden. I always think I am not a control freak, as similar to you, I let people do their thing when in my home . I do get reminded by things almost daily that tell me otherwise- simple things like a colleague controlling the document on a shared zoom screen. Drives me crazy when I can’t move it at my pace, and stop where I want and must follow the colleagues moves. I see this as foreshadowing of old age where the ability to control decreases and it gives me more compassion for my dad’s situation and his world that keeps shrinking. Thanks for stimulating my mind on these points and hoping your days are restful and the natural methods are helping your pain to decrease. The body can heal itself !
Thank you Margaret for these thoughtful comments. I always appreciate understanding how our experiences intersect and a perhaps unacknowledged dependence on need for control that may not look as obvious. I also see stress is part of the story of this low back pain: moving countries is certainly stressful even if we want it & look forward to the change. I can well understand your 98 yo dad’s frustration but amazing how he’s going strong even within a shrinking world of independence. May you stay healthy friend! Our dear teacher Michelle Andrie & I are having an online session Friday & I so look forward to that as a healer of low back pain I deeply trust.
Good to hear. Michelle will help so much - the physical and the spiritual. I’m due for a session too in the near future I know you will be feeling better soon as you are doing so many good things to help yourself
Aww Amy, I'm so sorry you're in such pain, and I can feel the anguish of being the care-receiver after everything that's happened. Sending you standing-up-gentle warm hugs and heat packs if those help!?!
I must've been feeling some telepathic empathy pain since I've had left-side soft-tissue muscle spasms for the last couple of days after twist-ping-ouch!
Bless you for mentioning Carer Mentor and my work. I hope you know how much I appreciate you - ever since those early days of figuring out how to 'Substack!'
To answer your prompt is difficult since I'm still caregiving, but there's been a few moments/events where my friends have given me a soft-place to land without questions/expectations knowing I'm a hot mess...music, cooking together, sharing meaningful quiet times together. In the darkest time, having a safe place to cry without having to explain things, be anything or do anything - this was the precious gift from my closest friends.
love and hugs.
Dear Victoria, thanks for this thoughtful response, I feel those hugs and yes, heat packs are helping when the pain gets really intense. I am choosing natural methods, physical therapies, for healing along with all the other good practices I've developed in recent years like breathwork and meditation. When I think of resources for caregivers, I always think first of your generous Substack publication. I am so glad you have the kind of friends who can give you that soft landing place when as you say you're a hot mess, which any caregiver will be at some point. I can also be that safe place to cry without explanation--just so you know! Now we are almost in the same time zone. Where in the UK do you live? I still hope for a visit to the UK at some point this year to see family and friends. Would be so wonderful to meet you in person, Victoria.
Thank you, dear Amy. I appreciate your very kind words, warm wishes and your kind offer of support. Thankfully, things are not as tense, fraught and edgy as they were with Dad before he passed. Hot mess is an understatement that I didn't realise I was in until I was with my friends - I'm sure you can relate! I really appreciate your kindness.
I'd love to meet in person, Amy but it's not something I can easily plan to do. Sorry! I don't share where I live online. Let's continue this convo by email.
Totally understood Victoria and I respect your privacy. We can direct message as a possible UK trip becomes a possibility for me💗
Hi Amy,
This was a great post - dealing with stuff I think about often!
How interesting that you speak of needing to be in control. All those years of having Passover at your house, I so admired your way of being able to just let everyone of our crazy group just take care of things as they wished to. Since you moved away, I have never been able to do that - instead bossing everyone around to do as I wished (and often demanded). Boy, is that a lot of work!!
So...as a fellow control freak I have also found the act of giving up control extremely difficult.
Every time I have had to face checking a new age checkbox on a page when signing up for something has given me cause to think about the new age that I have just entered. And its not always a happy thought. While I have never been quite as much an adventurer as you are, I have always felt that whatever needed doing or I wanted to do, I could do it. Well, getting older has taught me that was a really dumb idea. I think twice now when I need to get up on a chair to reach a high cabinet, when I have to carry something very heavy from the car to the house, and I have learned to take naps in the middle of the day if I am tired.
When Håkan had his brain bleed 10 years ago, he came home after spending 2 months in hospital, with the right side of his face paralyzed, most of his hearing gone, and his sense of balance totally gone, making every step he took extremely difficult. He went from needing a rollator to walk to being able to make due with just a cane. And he learned to be able to accept help when he needed it. But it was, and still is at times, a very hard transition. And for me by his side, it was difficult to see this extremely competent man become one who needed help. And it also made me realize that it was a good thing that I never decided to join the nursing profession. 😏
And as you seem to be discovering, as much as we like to think we are in control of our bodies...we are not. Our bodies have a very bad habit of reminding us of our lack of true control. As an example...right now my brain is saying that I would like to get up from this computer and go into the kitchen and get a second cup of coffee but my body is say noooo, I'd rather not get up. Guess which is winning right now - I am still sitting here...
In any case, your back will get better. They usually do. Though I have discovered at this advanced age, things don't necessarily return to being as good as they were before things started hurting. But better is always welcome. And you will once again be able to do the things you want to do. But maybe a bit slower. And that is not always a bad thing.
So a big "kram" to you from me here in Sweden.
/Hilarie
Hilarie, thank you so much for being part of the conversation. I really appreciate you as my friend of so many years; I hope you know that. I am glad you found this post thought-provoking for you; I wrote it for my own healing and understanding and am always glad when it lands well for a reader, too.
It's interesting you bring up the Passovers we hosted. I think for me control looks a little different than needing to as you say "boss people around" and be in charge of every detail. I do know how to step aside and let others help me--but this situation is making me feel more helpless than I ever have before. I think my issue is the control of the perfectionist; of needing things--the big things, my big dreams, my projects and creative undertakings--to all go according to plan. And having a hard time letting go of the idealized vision of whatever the thing--the move, the trip, the novel, the relationship--will deliver for me in terms of satisfaction and contentment.
I am learning that true satisfaction and contentment must come from within myself, which means loosening control of external circumstances that I think are within my power. Like how my body will respond when it has been traumatized. I don't know how or when my body began to suffer this trauma that has emerged in my severe low back pain but I think I can trace it back to November 2022 when Mom's health took a turn for the worse, she was in rehab, it became clear I would be her full-time at home caregiver on the heels of my divorce, and wow--were circumstances so far out of my control.
Still, I tried to make my world continue to fit an idealized vision of how I wanted things to be. That's not all bad. I did things during my caregiving years that were good for me--worked on my novel, started a Substack, maintained connections to friends, took much-needed vacations--but now realize that ignoring the frequent low-back spasms I began to suffer in Nov 2022 was a way of exerting control, because I was resistant to the message of my body.
So I take to heart all the ways you are now listening to your body, no longer dismissive of the realities of an aging body/back or the good idea of a nice nap. And thanks once agaiin for sharing Hakan's experience. He has had to make an epic adjustment and I know how much strength it required, mental and physical, to do that. And you have been his caregiver all along. So please don't stop taking care of yourself.
I do intend to heal slowly and mindfully and to practice acceptance of whatever level of back and body health I can return to, in time.
Thanks for that kram from Sweden! I will see you at some point this year--I am determined to be able to make that flight!
I hope your back pain clears up soon and you find ease in choosing what feels like enforced rest. Brené Brown has written that if we cannot receive without (self) judgement then, despite how it feels, we are not giving without judgement. That has helped me as I adjust to life in the slow lane of chronic illness disability.
Michelle, first, I want to give love to you as you "adjust to life in the slow lane of chronic illness disability," as much love as I hope you give yourself, every day. Thank you for your kind wishes for my back pain and for the encouragement to find ease in the rest, to see it as an invitation, an opening, and not a command that I resist. I always appreciate being reminded of the wisdom of Brené Brown, and her Atlas of the Heart is a frequent reference that I think it would do me well to peruse now. Thanks for joining the conversation, Michelle!
Dearest Amy, thank you for writing this beautifully vulnerable and deeply wise post. It's my favorite of all of your posts thus far. What a wise exploration of all the layers which influence how we perceive receiving care, asking for care and what a powerful re-authoring you've shared!
With you in "letting go of the rice" < for me it's two-fold: getting caught up in wishing some things were different + acceptance of where I am now compared to 10 years ago or 15. 20 years ago. Oh, being present to what is while balancing what can/might be possible. < what can/might be possible has mostly been a positive place for me to co-create amazing paths in work & life, however, sometimes like now, it can be a double-edged sword.
This is all to say, I hear you sister, friend. And I'm sending so much love and respect and cheering you on in your rest and healing. You are worthy of receiving care. ♡♡♡♡♡♡
What a lovely response in every way Kristin. Thanks for sharing your view on co-creation; I love that perspective. And I appreciated understanding that use of double-edged sword; I relate to that, too, all the possibilities can be overwhelming. And finally I so appreciate your thoughtfulness regarding your upcoming visit. I also want to tour Sagrada Familia, so that will definitely happen. The important thing as you say is to be together in this beautiful part of the world,
Kristin, thank you for joining the conversation as you always do, so thoughtfully and honestly and with your full heart and wisdom. Thank you too for your appreciation for this post; that makes me smile. I had to stand more more hours than I probably should have to write it over the weekend but these were the words and thoughts and lessons calling to me to be shared. So glad they resonated with you. You and I are alike in the "letting go of the rice," and I appreciate your reminder of "co-creating amazing paths in work and life," by which I think you mean co-creating with the universe, which requires a letting go, a relinquishing of control. I'd like to hear more about what you mean by this co-creation now seeming like a double-edged sword. I suspect you mean that you are now, as I so recently was, in that hard place of caregiving for an elderly parent--the push-pull of that sense of obligation with our natural desire for freedom and self-determination. I intend to keep resting and healing so that I am fully ready to explore Barcelona with you when you arrive in less than a month now!
My Dear Amy, Co-creation to me has many forms; with the universe, with other human beings, with collaborations with organizations, with art forms, etc. <3
As for double-edged sword, what I meant was in the realm of what can/might be possible has so many layers and at times I become overwhelmed, especially with having a broad Narrative Worldview meaning I always see so many layers simultaneously that what before had seemed a clear path, now seems like so many potential paths that I do not always know which one to take. And that is OK! I am learning to lean into that and try my best to choose a path, knowing it can change.
As for seeing you in Barcelona, I say this loudly, my friend, if our time together is watching the sea from very near your home, or me and you reading to each other while you rest in bed, or me cooking for you, that is all perfect! I do not want there to be any pressure on 'doing.' I am coming to see YOU and celebrate YOU. That does not need to be full on exploring of Barcelona. My only one hope this trip is to see inside Sagrada Familia and if that would not be something you would be able to do (and that is MORE than OK) I would happily go on my own for that excursion. Love you so! Rest well, heal well!