I can't meet your expectations, darling.
Our Body | weekly love notes to us who hold everything and ourselves.
I will never forget the whisper that turned into a roar some sunny childhood day almost three decades ago. The sensations in my body sending all of us, my parents and doctors and I, on a wild goose chase. And then, the goose was caught and my dis-ease labeled (the first of many labels). And then, I began the diligent work of suppressing her speech. Asking my body to be quiet. Please. Panicking each time her voice broke through a seam or a crack.
And, I wonder if you remember the first time that your body spoke?
I wonder if her musings became your own. I wonder what bits of the world slipped underneath your sweater, skin and became you. Did they become you? Because, I'm pretty sure, the world's pain became my own at some point.
And now, here we are unraveling this together.
Dearest Soul Tender,
Hi. Hello and welcome back. It seems as though I have more words to share on disability-adjacence; how our bodies and lives are not simply our own. How the world is shaping all of us who live with pain. How we (might) be able to find peace here, too. (At least in moments if not days.)
Over the last decade, I have released thousands of words (millions?) unto the world about living in a complex and complicated body. I keep thinking this might end. Radical healing will occur, I'll have nothing left to say and thus, I'll shut down Instagram and spend the remainder of my days writing poetry about roof rats and gardening alongside my favorite box turtle. Because the world no longer experiences pain either, my schedule will be wide open. Every baby will live, birth trauma will not exist and every other kind of loss we've experienced up until this point will be fully integrated and long forgotten. Together, we'll be free.
Since none of that has occurred yet, my latest plan is to be here with you musing about the intersectionality of our pain (on most Sundays). Many years ago now, I shattered the we don’t speak about it frame from which I came. And thus, this conversation will be candid. I'm no longer aiming at perfection and inviting you along for the ride. The institutions that once harbored my truth-telling no longer have a say. I prayed for a miracle, I prayed for all the miracles. I did the work. I was ready to dance and sing the way Miriam did when she reached the promised land. But, I didn't reach the promised land. In fact, at the onset of my healing journey I herniated a disc in my spine and had to relearn how to walk. Then, I caught Dengue Fever and had to relearn how to walk yet again. And then, the icing on the unpromised-land cake… I was diagnosed with cancer.
But here’s where things turn less sour, loves.
Most recently, I realized the adventure I have always invited my readers upon was not the physical healing journey, but a spiritually healing one. One where I would choose to live and come alive, regardless of circumstance. And question if, perhaps, you might want to do the same.
So, let me be the one to ask… do you? Do you want to live and come alive even if the pain stays?
Once upon a time, my answer was a full-bodied “no.” And, of course the Universe responded. I'll say to the day I die that I co-created my cancer. And yes, I believe we are that powerful.
Anyhow, I want to invite you into a realm where a body and a life can be good, regardless of all wildness.
Here's where things I think things get extra interesting, beloved… the moment when we start to question our beliefs about pain.
Do you believe a painful body/life can be good?
Can we be whole even in suffering?
Regardless of your answer, I think many of us want to have these conversations and, we haven't yet begun to have them as fully and richly as we could... It's almost like we are sifting sand in search of the miracle and while we do so, the awe of today is passing us by.
A few of my posts have gone viral over the years. The one I wrote for Love What Matters about how “If I was a mother in a Disney movie” I would be the one that didn't make it. (But also I don't know if any of them made it.) And then, there was the one where I said that if you are undoing years of overdoing, this too is holy. That one struck a definite cord with perhaps a broader audience. Because though we all live in bodies, not everyone knows this kind of disharmony and pain. Thus, there is a general pain that seems to flow through caregiving bodies that says I've been doing so much for so many and so little for myself and I just need permission to lay down for a little while.
To be clear, this pain matters, too.
Yesterday morning, I woke up to a slightly heightened sense of pain in my body. I told a friend that I don't like to call anything terrible. But, when you wake up and you realize that you may feel like this for the rest of the day, if not the rest of your life and what you're feeling doesn’t resonate with any descriptive term that would make another human want to live in your body… it can be a challenge to call it anything else. It can be hard to live in a body where voice-to-text is the only option, and the only option isn't going to work because the brain fog is so severe that you cannot put a sentence together anyhow.
And while that isn't completely my experience today, in part - because look at these sentences! (sentences!) - I remember. I remember and I remember and I remember. And some days I grieve. I grieve the expectation that the world has on us who are disabled and disability adjacent to radically heal physically. The way that many a church looks upon the broken body as a sinning body. Separated from a God who (of course) will heal us if only we ask. Except they didn't tell me how many times I must ask. And, I stopped asking at some point because I was afraid They (God) might tell me I “should” be better already.
Sometimes, we hold everything in these blessed flesh suits. Sometimes, I think that is the karma or the lesson itself. How do I hold everything in this flesh suit? How do I hold myself when it doesn't feel good to hold anything at all?
The other day, writer
had a wonderful prompt for her month of poetry asking us to use the world feel. And this is what I wrote,Nausea beneath
too tight skin
I exhale
pray a new breath
washes over
a body shattered
by broken sleep
the only ease
of living in this body
knowing it's name
this dysfunction
no one else
can see
and the funny thing is
we beg to feel
something, anything
struck down by
the emotional low
of invisible disease
and yet too,
we want to feel nothing
no more pain
no more sorrow at living
this life we would not choose
nor give away
just in case it chooses
another
I had not rolled out of bed yet nor run weary fingers through tangled hair only to find I cannot untangle my own hair. I had not attempted to eat a meal only to find out, I'm not digesting food today. I had not yet heard the wails of my child who has recognized their own bodily disconnect and thus, begun to mourn herself.
No, these words came before anything. The foundation of my day was, and often is, pain.
And so the questions remain…
Is this a view of wholeness to you? Is it separation from good and/or God? In what way does suffering resonate as a part of the complete human experience? And if it does resonate, what does that say to you about our God?
I can't answer these questions for you. And, I've reached the point of no return. I won't be able to review this essay or edit it another round. The free flow of words is now gone and my hands are weary.
Capitalism says I shouldn't publish this because it's incomplete. Don’t share it either. You certainly shouldn't pay for it.
But what does God say?
I'll end here, thanks to talk-to-text. In a recent conversation I had with the brilliant
, we broached the idea that perhaps God isn't all-powerful as we all once believed. Right now, I personally remain committed to the mystery of a God who simultaneously is love and who also cannot meet the expectations of humankind. Because simply, God in me is love and also cannot meet the expectations of humankind.I'll see you on Wednesday for the next interview in our maternal mental series and next Sunday for another conversation and love letter to us on Our Body.
I see you, I see you, I see you.
New here? Dear Soul Tender is a safe, sacred space where you can find a diverse and inclusive assortment of life-giving topics related to caregiving, feminism (and human rights) at the intersection of disability, pain, identity and motherhood. My promise here is to remind you of how to love well: yourself, your kids, your neighbor, and the whole wide world.
This was a gorgeously and raw piece 😭
And these lines 😮💨
"I exhale
pray a new breath
washes over
a body shattered
by broken sleep"
If only for a moment, I was able to get a glimpse into your way of being. Thank you for sharing yourself and these beautiful words with us 🙏🏽
Every single breath of this resonates. To answer the first question- I don’t honestly know right now. I’m wrestling with how to want to keep on keeping on in the face of nothing feeling like it means anything enough to overshadow the pain, the trauma, the horrendous. And I hate that “feeling”- the dark hopelessness. It’s hard to feel like this season will produce anything besides more discontent and depression. But I’m hungry for something more and even if that’s the final spark of light in me right now, I do acknowledge and appreciate it.