Go gently woman
Don’t raise your voice or show your madness
Tread lightly on this earth
Go lightly woman, be light, be laughter, be joy
Hide the despair, the fear, the anger
Especially the anger
Don’t be loud, demanding, too much, don’t push, ask, offer…
Accept, be meek, be mild, be soothing, be healing, be quiet
Be less, be small, be soft, be slight and go lightly
Don’t make a fuss, don’t shout, scream, demand
Sacrifice, step back, step aside, step down, make way and go lightly on this earth
Go gently woman
I was wondering today why I accepted my diagnosis of all in your mind/not real/you’re mad/psychosomatic/M.E. when I fell ill, when I knew I was infected with something, when I could feel the poison blazing my veins.
Why didn’t I fight harder…?
Why the fuck didn’t I shout, scream?
I was fighting for my life, I knew that, I felt that, why the fuck did I accept and surrender?
When my neighbours invited me to their party today and I declined because I’m just too ill, too dizzy, too weak, too fucked - I felt such a deep sense of loss in the pit of my belly I wanted to roar, let it out.
Loss for all the years of isolation, of nothing, of existence and not life, not living, not being, not being me.
This time it’s with Covid, every other time for the last twenty years of invitations refused, it’s been because of the Lyme. Ultimately because Lyme has disabled my immune system and I’m always ill, always fucking ill and so over it, so fucking over it.
We’re told in the chronic illness world that the key to recovery is to be gentle, quiet, graciously accepting, loving to others and ourselves.
We’re trained to find the gratitude, the peace, the tiny moments of joy.
Don’t want to.
I want more.
I want the big moments of joy. I want to be free.
Why aren’t we conditioned to ask for more? To ask for health? To demand it? The treatment that equals it?
I’m not gentle, I’m not calm - I’m fire, anger, a mess, conflicting emotions, passion and action and while the Lyme has taken these characteristics and diluted them to acceptance, surrender and rest, beneath that, I rage and wonder when the fuck I learnt to submit?
When did that begin?
It began when my mother told me to sssh, to not moan, to not voice pain, upset, hurt – because women don’t do that, they carry on, they shut up and they bear down.
It was consolidated when my mum got sick and I became her carer…no one asked me, it was simply assumed. I would care, I would cook, clean become mother, wife, servant, uncomplaining housekeeper.
It was further consolidated when my grandmother told me my life was over after my mother died, she stated simply that my role was now my father’s carer, my gender rendered me incapacitated - my options, my life was done.
No one asked me if that was okay.
I didn’t even ask myself.
I accepted, I surrendered and while I burned to be free, to be let lose, to run wild, I swallowed it whole, because that’s what a good girl does. She submits.
So, when I got bitten the tick I was already programmed to sit meekly while doctor after doctor told me to be quiet when I hadn’t spoken, to try to look pretty, to try to please, to try harder, to not make things difficult for my dad, to rest, to go gently, quietly, unobtrusively into hell.
Don’t fuss, don’t scream, don’t rage, don’t demand treatment, care or help.
Go gently to your bed
And I did, I fucking did all of it…
I took the accusations of blame, of laziness, of being female and I went quietly to my bed.
When I tried to push a knife into my heart three years later, because I wanted it to stop beating, because I wanted to be free of the pain that is Lyme, free of the prison that I’d been forced into, I was taken to be assessed. My dad threw me out of the car outside the psychiatric hospital. I couldn’t walk. I couldn’t stand. I couldn’t see.
I’d got the knife about a centimetre into my chest – I’ve never spoken of this be before, because it proves I’m mental doesn’t it…that level of despair?
I wasn’t messing around. I wanted out. I was being denied food, care, lights, heat, kindness, I was imprisoned, ill, trapped and so scared.
All the episode did was consolidate the label of mad, unstable, unwanted, burdensome.
All I heard was how dare she make a fuss, how dare she want out, how fucking dare she
say this isn’t okay and try to take action.
No one asked if I was okay…. No one asked if I was okay. No one asked why I wanted out.
When I tried to swallow the fuck off pile of antidepressants the doctors had forced on me to shut me up, make me quieter still, they were simply taken away, eyes were rolled and nothing was said.
I had always been too much, too full of ideas that were absurd. I was too strong, too muscular, too demanding, too difficult, too annoying, too irrepressible…and I still am.
I still fuck people off, all the time. I say too much, I speak too freely, I talk too much, I reach out too instinctively, I write too brutally. My posts do not hit the right note, they’re dissonant, I’m dissonant, too much…I am too much.
My writing isn’t poetic enough, it’s not good enough. Not enough, and too much all at once.
I write like a man - apparently and that’s not okay as a woman.
I need to soften the book I’ve written, embroider the words, omit the darkness…make it more beautiful, prettier, softer, gentler, less, less swearing, less violence, less anger, less rage, less truth, less trauma…
Less, quieter, smaller, sssshhhhhhhhh
I’d be lying if I said I’m not cowed by this, all of it, the illness, the failure, the endless criticisms…
I feel shame for being me every day. I reach out and then I shrink. I say too much and then I worry.
I apologise for existing, a lot, that’s annoying too - I often wish I didn’t exist at all, also annoying.
I’m a fucking mess, a nuisance, an annoying nightmare of brokenness.
Just thought I’d own it, step into it, empower it and try not to apologise for it…
A new leaf, a new start, the end of acceptance, of rest, of surrender because it just isn’t me and it doesn’t fucking work.
And I just wondered if it might be time for women to be loud?
To tread boldly
To be too much
To simply be?
Perhaps it’s also time for the chronically ill to stop surrendering to a narrative written by clueless fuckwits?
To stop fucking resting and start screaming?
That’s where this post started, an article about the new hope for those with Fibromyalgia…the hope of acceptance of the condition, of the pain, the loss of life.
Trouble is, Fibro can be Lyme….an infection which requires treatment - so to accept it may be the acceptance of a bacterial agent taking over your body, decimating it, destroying it and you. All your hopes, your normal, your dreams.
Does that sound like a good idea? A touch of mindfulness to cure a raging infection a million times more aggressive than syphilis? Does that sound okay?
The fact that a lot of sufferers are women is not lost on me…
Go quietly woman, submit, shut up, accept, take silently, endure…
Again, just a thought, but might it be time to stand up, to fight…to say no and go loudly…?