It’s been a real time of it.

This Fibromyalgia Awareness Day and M.E/C.F.S Awareness Day - I’m opening up about the vulnerability of having these serious conditions.

𝗙𝗶𝗯𝗿𝗼𝗺𝘆𝗮𝗹𝗴𝗶𝗮 is a musculoskeletal disorder that causes widespread chronic pain all over the body.

𝗠.𝗘/𝗖𝗵𝗿𝗼𝗻𝗶𝗰 𝗙𝗮𝘁𝗶𝗴𝘂𝗲 𝗦𝘆𝗻𝗱𝗿𝗼𝗺𝗲 is a complex, long term neurological condition that causes extreme exhaustion and also, you guessed it, pain.

Both conditions have a lot of overlap but are relatively distinct in how they map on my body.

I was diagnosed approx 7 years ago.

I noticed myself developing chronic pain and experiencing burnout out while training at drama school. I remember my pain complaints being ignored and experiencing ostracisation for speaking out about my experiences because of how “well” I seemed.

The expectation was to push through. While in my second year of drama school at ArtsEd, I made a suicide attempt due to the impact doing the course without care for my disabilities was having on my health and wellbeing. My drive to succeed was so high that I could not fathom a value to my life beyond being in a production and not being a minute late to avoid getting “barred” (sent home) for the day. There was an unforgiving energy towards illness at drama school and I’m realising how much that’s effected the way I navigate my disabilities within the arts industry now. After my suicide attempt, I was given a few meetings and 2 weeks off to rest. It was then business as usual - I became great at excelling and masking while accepting an unspoken agreement between me and the staff that I could sometimes go into a smaller-than-cell-sized filing cupboard to cry when having a meltdown, without being disturbed.

ArtsEd surreptitiously introduced a “fitness to study” policy after this attempt that didn’t previously exist. They seemed somehow shocked at the toll that the course was having on a disabled body haha. At the time and up until now, I have seen that policy as a virtue signalling panic response. A superficial form of action that acts to weed out those that can take torture on the chin and those mad ones who cannot. The whole thing was very hush hush. I guess that’s why I have such reverence for whistelblowers.

I deferred for a year, came back with better understanding of how to self-advocate and graduated like the top don I am. However, I remember how I fought tooth, claw and nail to survive in that smelly, uncaring environment and I haven’t forgiven some of the experiences that I went through/witnessed while also navigating debilitating pain.

The disability-related #depression from these two conditions is… chronic and severe loooool hence the tone of this blog bro.

It’s hard not to get critically existential when you’re exhausted, confused, achey and in deep pain 24/7 with little respite. The “raised as a girl” programming to mask to attain the “good friend/daughter/sibling/lover/stranger” status is more than I can explain here.

It’s been lonely, dark and revelatory.

My life has changed so much since accepting being disabled. Self-acceptance is something that slavery and exploitation culture deems selfish of Black women, girls and transfemmes. The ableism persists but my ability to navigate oppression has shifted. Often when I speak to White and Brown liberals about snippets of my experience, they scoff and shake in disbelief, with a bit of guilt - always remarking how “unthinkable” it is. When I talk to afroqueer, trans, mad and other disabled kindred, we hold a eulogy. There are stories shared, tears shed and food eaten. There are many nods, fists hitting tables and sacred rage unleashed. However, there is a deep love in remembering that our suffering is not personal. We are not the target of this great scam called life. We are glorious and real and we make this world go round. We always have. I think that’s part of what’s made us so sick - misogynoir, masking, over-extending, devaluing of labour, emotional extraction, self-sacrifice to the point of self-destruction in the name of “activism”. I hate being called resilient in this context because my choice was fight or die. And I’m tired of fighting and the death thing… well.

But I am resilient nonetheless and there is deep-rooted fortitude that has brewed from all this torment.

It’s taken a long time to admit to myself that I’m a child of war. Being a descendant of Indigenous Peoples Of Biafra, my parents fought for freedom in the Biafran War. My ancestors walked into the seas to escape bondage. If we are to give real credence to ancestral wounds and intergenerational trauma, then the sacred warrior in me - restless to not be caged again - deserves love and respect. My urge to resist captivity and carve out paths to liberation is an inheritance, something burned into my DNA. It is exhausting, yes, but so is sleepwalking through life. If you ask me to choose the stagnation of being a living corpse, satisfied with my soul disconnect and imperialist cis-heteropatriarchy… or to be the wholeness of me: the mad, bad, sick, tiyad, excited, loving, police-surviving, grace-embodied yet disowned DELINQUENT hedgehog that the Creator themself made me to be? I choose me - this me - this multidimensional me - I choose me every time.

I’m a different being than I was before chronic pain and I love who i am. Not always, but often. Way more often than before.

On Glub - archetypal shedding

I am learning to surrender in ways I would never have imagined.

I am learning that self-hatred is not a cute flex. It actually makes pain worse so let’s understand that deeply please.

I still have my glub (my archetypal trauma body), my inner critic, my relentless self loathing - but I don’t feed them. I soothe them, let them sit down and take a rest from obsessively trying to “fix” me. I have grown up in an environment that won’t rest until it “prays” me to health. I am only now realising how this has decimated my self-esteem, self-regard and self-worth.

I am exploring new treatment options with the hospital atm (IV anaesthetic and more hydrotherapy) as well as doing my own research.

It seems unsexy to be a leader and healer who says they are tired. Then I guess I’m that unsexy chick. I’m flat-out shattered from working so hard to be here and to feel safe. I don’t like the assumption that I want to prove myself. I don’t want to convince anyone that my life is of value anymore.

This life-shattering, all these cracks, they have given space for more light to pierce through the vessel of my past. I am letting go of my need to have everything under control - an ideology I have held on to since I was abused as a child. I am releasing perfectionism to make way for the universe and my angels to do their thing. I am accepting that something’s were really not my fault. And some things actually were. And that’s okay.

It used to be impossible for me not to dissociate and disembody - so painful to be inside myself that derealisation and depersonalisation would happen to me for hours, days, even weeks for a time. Now' I’m almost always in this gorgeous, wretched flesh-sack - so intensely present at the feast. It’s weird, hard, terrifying but also good.

I am also learning to accept that life doesn’t feel very safe a lot of the time - safety is a pretty whack concept in this carceral-capitalist-fuckfest we co-created. So I’m actually learning to take more informed risks in the name of love and freedom. I’m scared so much of the time anyway, might as well be scared while leaping into my dreams.

I am learning to embrace my wild, chaotic disruptive nature as the public service that it is. I honour the rushing rapids that is my river-life. I am learning to see pain and vulnerability as integral aspects to not only my life but to life itself.

I am learning that community and healing are real but both require ruthless discernment. Thank you to everyone who has held me through my pain and supported me to alchemise my wounds into something other than self-obliteration. I have painted great beauty, penned transformative poetry and nurtured heartbroken souls by remaining here. So you, all that held my hands, you are an essential part of that. Thank you.

Most of all, this Fibromayalgia and M.E/C.F.S awareness day - I am so deeply grateful to myself because Ezenwanyi. Amarachi, let me say this to you right fucking NOW… staying alive every day, when I could choose not to, is truly the most elite of vibes 👍🏾