My Changing Body
Our bodies change over time, so do our relationships with them
My relationship to my body has always been complicated. In my childhood and early adulthood it was characterized by shame and hiding. As my symptoms became worse and impossible to hide, it became more of an adversarial relationship producing pain, suffering and desperation. Only recently has the shame and the pain taken more of a back seat making room for softening and compassion and care. The stages of relationship with my body have comprised both my physical abilities at different times as well as how I have related to what was happening.
The Shame Body
The first stage lasted from birth until around 30 years old, and I call it the shame body stage.
Because the muscular dystrophy wasn’t evident early on and I was able to do a lot physically, even though I knew I had the condition, this stage was defined by hiding. Hiding the muscular dystrophy from the world and from myself, living in fear of exposure, compartmentalizing everything so I could function without falling apart.
I lived more in my head than in my body during this time, disconnected from the physical reality of what was happening or what would happen. My body was a source of danger, not only because of what I was expecting to happen over time, but because of the danger of being exposed, of people seeing what I was trying so hard to keep hidden.
This stage was also defined by quite a lot of abuse of my body in terms of how I treated it, especially the drinking and the refusal to acknowledge that anything was wrong.
The shame body is the body I was hiding from myself and from others, refusing to listen to, and punishing for existing in a way that felt unacceptable.
The Pain Body
The second stage is what I call the pain body, and it’s not that the shame went away completely, but starting in my early 30s, the symptoms started to increase significantly and it was no longer possible to hide the muscular dystrophy.
My body was betraying me and becoming a source of literal and figurative pain.
I was tripping and falling a lot, broke my nose multiple times, and was in more pain because I was pushing my body to do things it used to be able to do that were becoming more difficult. I was having to give up doing things I used to be able to do, like going up and down stairs, walking for longer distances and playing guitar.
It was a time of desperation and a manic, frantic search for ways to slow the disease down. I went to India twice and San Francisco twice to work with alternative practitioners, trying everything, grasping at anything that might stop what was happening.
It was a time of a lot of anxiety and depression and fear, still very cut off from my body and still experiencing a lot of shame, but now the pain was undeniable and constant and becoming the organizing principle of my life. There was plenty of physical pain at different moments, but the pain that I’m referring to in the pain body stage is more about the psychological pain due to the uncontrollable escalating amount of loss.
The pain body is the body I was at war with, that wouldn’t cooperate, and kept taking things away. The pain body was about trying desperately to fix or control or slow things down before it was too late.
The Last Five Years
The third phase began only in the last five years, and I don’t yet have a pithy title for it, but it has been the most transformative.
The frantic searching evolved into a deeper acceptance and grief, but the bridge between the searching and the acceptance wasn’t clean or linear. There was a period of spiritual bypass, which I’ve written about, recognizing the importance of acceptance but rushing into it without making space for the grief, loss, pain, anger and sadness.
I thought that acceptance meant being okay with what was happening and transcending the suffering. I’ve learned though that acceptance is more about making space for all of it, the grief, rage, longing and the loss, without needing any of it to be different than it is.
This third phase has opened into a deepening care for my body in terms of my diet and nutrition and exercise and my meditation practice, as well as self-compassion and the ability to nurture my body and care for it and love it.
It’s not that the shame from the first phase or the pain from the second phase have gone away, but this third phase is not defined by shame and pain. They’ve gone from being the drivers to being in the backseat, and certainly at times trying to take the wheel, but they’re no longer running the show.
Learning the Language
One of the things I’ve noticed in this third stage is what happens in my meditation practice when I ask my body to relax or let go. It feels as though I’m speaking in a foreign tongue because my body does not register the request at all.
Maybe that’s because implicit in the request is an expectation that because I’m meditating, my body should relax or soften, as opposed to inviting my body to feel safe without expecting it to respond.
What this is an indication of is just a deepening communication and relationship with my body and an investment in understanding it more. If I’m speaking in a language to my body that my body is not understanding, maybe I need to expand or change the language I’m using.
This stage feels expansive, and I would say it’s about softening, learning to care for it instead of fighting with it or hiding from it, and developing a relationship with it instead of just enduring or compartmentalizing.
It’s also about being willing to listen to it, speak to it in a language it can understand, and to meet it where it is instead of where I wish it was.
What’s Next
I don’t know what the fourth stage will be. Death and dying, obviously, at some point, but I don’t know when or how that will happen or what my relationship to my body will be when it does.
These stages aren’t clean or sequential. The shame is still very much there, as is the pain. The frantic searching hasn’t completely disappeared, but it’s more like hoping there will be a treatment or cure before it’s too late.
But something has definitely shifted in terms of how I hold all of it. I’m not hiding from it anymore. I’m not at war with my body anymore either. I’m learning to be with it, care for it, and speak to it in a language it can understand.
What excites me the most about where I’m at now is not transcending my body, fixing it or making peace with it in some final permanent way, but developing a relationship with it that allows me to live in it without shame or desperation being the organizing principles.
My body will continue to change. The losses will keep accumulating. I hope to continue to learn how to soften to what I cannot change while still fully inhabiting the body and life that I have.
What stage are you in with your own body, and what is it teaching you?
I was blown away multiple times while reading this to recognize parts from your story that could be copied-and-pasted verbatim into mine. I relate SO MUCH to the early decades of shame/hiding. Also this relationship with the body that feels like battle or war — my body has betrayed me! And the only way I know how to live inside of it is to wrestle with it, ignore it, or abuse it. And I also fell into this unconscious belief that acceptance meant no grief or acknowledgment of loss. Oof. I just relate to so much of this. Which is probably why I paused so hard on this paragraph: “What excites me the most about where I’m at now is not transcending my body, fixing it or making peace with it in some final permanent way, but developing a relationship with it that allows me to live in it without shame or desperation being the organizing principles.” Yes. Yes, yes. I feel like I’m in the earliest stages of this kind of softening. It does not come easily to me. Thank you for putting this all into words💛
Thus is so beautiful, wise and awe amazing. Privileged to walk beside you my love. Your devotion to evolving , growing and learning is incredible and your work on metabolizing so much of the shame, loss and fear this illness has brought is awe inspiring! You are amazing and sharing your wisdom so humbly with the world is such a gift! I celebrate you and your incredible spirit. Lucky me!