I stared at my feet in utter irritation and asked myself, where does shame come from? Did it begin here - at the tip of my body? Or did it start from my mind? Or did someone gift it to me? Or did I cover myself with it?
I remember while growing up all the funny nicknames I had for walking like a duck or waddling they would say. A laughter would follow. It made me conscious and feel funny inside. Though the waddling didn't change over time, my reaction to the names I received grew less and less hurt. Was that the first time I felt shame? I couldn't quite remember. The rush of blood to my face, the losing eye contact, the evasive restlessness consuming my body, that gentle tug tug of the heart reminding me that wait... I am feeling shame.
It's been such a long companion that you would think I'd have found a way to move away from it. But the gnawing realisation is that its form has changed so much over the years. Now more neatly tied to my body-mind and it's limitations.
For the past few years, I've been working on and thinking about healing with regards to my body-mind. An exercise that would have been much easier had the body-mind in question not been chronically ill. Oh, some wishes. Over time I've gotten good, even if I say so myself, at pretending that all is well. Not that I'm not sick - but the pro version: the sick is being managed. There is not a huge difference in how this presents itself for others but it does involve a lot less pacifying or communication. And to be honest it was mostly working well.
Then came 2022. Ah. The year of the relapses. Of stressors. Of the smoking. Of terrible mental health. Of (more) pain and fatigue. Of endless digestive trouble. Of my inability to pretend all is well. Of finding myself in places I'd thought were behind me.
With all this came the shame. Shame of not doing enough, to keep myself on this healing path. Shame of feeling similar to how I'd felt in 2016 (ish). You might be asking so what Nids? The healing journey is rocky. You fall of the wagon. You make mistakes. You stumble. Doesn't mean all is lost.
And yet. And yet.
The thing with shame is it can't be reasoned with. Eli Clare writes:
"Shame–that chasm of loathing lodged in our bodies, a seemingly impenetrable fog, an unspeakable and unspoken fist. Shame all too often becomes our home. This is what I want to talk about, even though it’s one of those topics that makes us restless, uncomfortable, off balance.”
I was texting a friend the other day about the shame of relapse - be it mental health or physical health. People, friends, well-wishers are always expecting progress. When we talk to each other about this, are we imagining things are changing? Always for the better? I don't know. I was talking to my psychiatrist recently and she said: so were there new triggers for this state? The truth is probably not, or maybe yes. But still my mental health has not been great. I imagine that I don't have these standards of "get better and stay better" for others, but who knows why, I definitely seem to have them for myself. In that moment, I felt a twinge of shame which was: "See, you can't even hold it together".
Initially when I thought about my relationship to being ill or disabled or *insert any word that fits*, I couldn't see the shame. All I saw was the strong hold of the voice: you are the problem. You did this. You could have, should have been different. It just got me thinking how different is this voice from shame. Where did I learn this? How did I become solely responsible? How did I dream up these pressures for myself?
Now being chronically ill and disabled, I've seen the ways in which shame creeps up on you. Others feel it for you. They sneak it in sometimes. Or they want to hide the illness by forgetting its there. Ashamed of it for you. They either very badly want you to not call yourself disabled - cause of the shame of being disabled (among other things) or they are very clear that you can't be disabled cause you can do things. And round and round we go.
The truth is being ill and in my 30s meant shame was a part of my conversations even when I didn't notice its presence. Like the one time I had to tell someone my tummy gave way in a public toilet. The shame they felt for me. Or the sharing that: no, I can't do that overnight journey cause my body won't be able to manage. The shame that followed. Or when you accept that smoking reduces how bad your anxiety gets so you give in ever so often. The shame of being ill and still smoking. Or the sudden surprise at the bottom of a long winding staircase that shoot, my knees can't do this and I forgot to check. The shame of not being my closest ally.
Shame is by my side in all these scenarios. Sometimes I've invited shame to stay and other times others have brought shame along without my consent.
See the thing is: logically I know how awful shame feels. And I know that my body can only be managed so much. And that yes we make mistakes and fall off our healing course. Or that sometimes despite all our best efforts nothing works. But... I can't quite shake the shame off.
When I began to write this newsletter I felt so much unease in my body. Oh Nids what will people think. You work on disability, you feel disability pride even and yet there is so much shame. Just lurking like that uninvited visitor or that stomach (bad) bacteria that just won't leave you. (Or the secret judgment of writing about something meant to be for whispers and dark corners.)
Part of the truth is shame thrives when I refuse to speak about it. Shame also is nourished by the darkness and silence I feed it. Then it feels almost clear that for me to tackle this shame, I need to talk about all the things that cause me shame.
Yumi Sakugawa writes in her book:
"is this not what the human experience is all about? The rainbow of emotions, the infinite shades of feeling. What gives me a strange serenity is to remind myself that I signed up exactly for this when I was born into this human existence. To feel terrible on some days, and to feel elation on other days, and everything in-between. To experience the sadness and the heavy-heartedness to make way for a new era of strength and clarity and vision and exciting adventures, and so on, and so on. To always shed and evolve and grow and learn and experiment and make mistakes, take detours, grieve the ending of things, love demons, love the most shameful things about yourself, discover and rediscover untapped reservoirs of potential and power and creation."
In all her writing about shame, Yumi urges us to meet with this part of ourselves that is wounded, hurt and unloved. It feels impossible to put into words that feeling I've been hiding away from everyone, of course, but mostly from myself. She writes in this post: “When we open the blinds and open the windows to let light and air into a dark and musty room, our eyes adjust and our misperception is corrected.”
So *deep breaths* and I'm listing things I feel shame about:
I feel shame that despite a decade of therapy and medicines I still have weeks where my anxiety and panic attacks cannot be controlled.
I feel shame that my body doesn't feel better in "normal cycles"
I feel shame that recovery feels so inconsistent and non dependable.
I feel shame that I can't do the things I could do a few years ago.
Somehow (feels impossible to believe) alongside shame I also house within me:
Pride (I say with deep hesitation) that I keep working on my mental health.
(Wavering) Acceptance that my body may always be a bit slow now and I need to do less.
Realisation that I may need to speak more about what I cannot do.
Recognising that how well and how ill I am are constantly changing, fluctuating and evolving.
This writing has of course not changed my relationship with shame (haha if only it was that easy). It was a start. And writing and acknowledging perhaps is making amends to the shame. And as I hold onto words mostly when everything feels untethered, I turn to Eli Clare's words:
Although I doubt there is one complete passage between shame and pride, there are many tunnels through the thicket; and on the other side lives an openness that lets us slide into our bodies and makes space for persistent joy and comfort. Body love can wake us up in the morning, put us to bed at night, visit us as we are dressing to go out or just singing along to our favorite song. These moments do not usually arrive as big, as loud, as brash, as a Pride parade. They just show up one day in the mirror or the camera—not that we have passively waited for them. No, we are all too aware of how hard we have worked for them, but still they arrive unexpectedly.
If you wish, and feel comfortable, I am open to hearing how shame inhabits your body-mind and what do you use to coax it away or calm its ways or however you engage with it. <3 Until then, hoping your pride and acceptance shows up quietly, unexpectedly, soon.
Love and magic,
Nids
Poetry for you (and me)
Mnemonic: ᎠᎩᏲᏟ/Agiyotli/Pain
by Qwo-Li Driskill
Generations of strain and exhaustion
collide into my body. Residue of small pox
scratches my throat. The story too painful to
tell your daughter
surfaces now in my shoulder blades.
What were you forced to carry when all you wanted was one moment of rest?
Memories you promised not to pass on
knot themselves, a nest of copperheads in my neck.
Every step you took sparks my nerves.
Muscles ache from the work of survival.
Pain—The shadow left.
Settling dust of forced marches.
The handmark of history.
Is my body the bruise left
after the impact of your life?
From the Book of Hours II, 2
by Rainer Maria Rilke
In alleyways I sweep myself up
out of garbage and broken glass.
With my half-mouth I stammer you,
who are eternal in your symmetry.
I lift to you my half-hands
in wordless beseeching, that I may find again
the eyes with which I once beheld you.
I am a city by the sea
sinking into a toxic tide.
I am stranger to myself, as though someone unknown
had poisoned my mother as she carried me.
It's here in all the pieces of my shame
that now I find myself again.
A few lovely things
TERFs train their sights on “spoonies,” and reveal that bigotry against trans and disabled people is inextricably linked.
Great thread by Eric Reinhart on antidepressants
A short comic about commodifying ourselves for the internet by Amita Seve
Love you, love this.
Also needed this so much rn.
Thanks for writing this and sharing it with us <3