​I’m tired of all the prayers and the apologies
People who care tell me I need to stop
apologizing, but for once—-I am Not The One
Apologizing. Not apologizing for my existence, as
one of my close friends always tells me.
Stop apologizing for existing. But, how can I stop
when everyone seems to want to tell me that they are sorry for me?
I don’t want your prayers or your ‘fake apologies’, because
“the world doesn’t end, it just feels like it does.”
I don’t know who I’m supposed to be when everyone
keeps using their teacher pointer-finger to tell me that
something is wrong with my body.
My entire life, my own father asked me what was wrong with me,
but not because he cared. I stopped having an answer to give people
whenever they asked me this. When will people stop pointing their finger
At Me? I’m not a circus attraction, I’m a human being.
You’re sorry that this ‘happened’ to me? If someone else tells me this,
I will fucking flee! I’m tired of the fake sympathy and the fake apologies.
I’m tired of the unrealistic optimism—the unrealistic words that “maybe you will outgrow it.
Sometimes if you are diagnosed when you are younger,
you will outgrow it by the time you are old.” Just stop.
Just fucking stop. Just stop with the stares, the prayers, and the apologies.
I’ve expected the mourning of my own body, so why can’t you?
Why do you feel the need to heal me? I don’t want to be healed
and I didn’t ask for it. "But, does the world really end?
They say it just feels like it does. But, would I actually rather be me?"
Who is this version of me that everyone else sees? Who is she?

Quotations in italics taken from the song, ​"I'd Rather Be Me', from the Mean Girls Musical.

The woods are mysterious with trees
that mark the trail.  Branches tightly
packed, light wanes, and the moon provides
no illumination.    I am lost without
a map or compass.  Now nighttime,
hear a chorus of frightening sounds. 
Alone in a hedge labyrinth, unable to
find the exit.
 
Disability steals the rainbow, colors
grayed and dark.  I dream of life
before the stroke, when all I knew
about the brain was a green gelatin mold
for Halloween.  I wake up and the
nightmare returns.  Like Rumpelstiltskin,
I stomped my feet and disappeared down a chasm.
 
Will I ever leave my fairy-tale world?

About the author:
Rochelle M. Anderson lives in Minnesota, USA.   She is an attorney who had a severe stroke in 2007 and almost died. She is still disabled with difficulty walking; and because of aphasia struggles with reading and writing. Ms. Anderson has been published in four chapbooks and in an online poetry journal. Writing poetry has helped her recover; and dictation fuels her words.

Foreword
This poem is nothing like the one above,
Dear Reader,
I write for you, and me.
Together we share.
In light and in darkness. And the rest.
I will be selfish a moment in that Western sense,
Laying all out my woes to see,
Bless you for reading and let us heal pains through words.
 
A palette of pain I shall lay down, its tale is writ.
As I wake today, crumpled like paper,
do not try to iron me out.
My creases are dark, damp, stale,
something is sour too.
Oh, it is me. What a shame I say to myself.
 
Do not try to ease me with your positivity,
That toxic type, but you mean well. I am guilty too.
We all want to rescue.
You. And you. You, and you. And me.
 
Mild, Severe, Intermittent.
What is your score, RAW I answer,
One – to – ten. Oh, I will not say TEN.
Fear of Judgement, no, no, no,
I learnt that. I learnt my lesson fast.
How may I express myself in this agony? A seven will do.
Do you want pain relief. Oh yes, I do.
 
Deformed, malleable, throbbing, sharpened blades,
You loud thing.
Yet I cannot localise you. You little thug n thief of JOY.
I cancelled two concerts because of you and much more.
OH, much, much, much, MORE. That is a poem on its own account.
 
Wait, test results are in. Cerebral, sterile, stark.
Most of all, potent!
Paper, you are though in reality.
The INK is simply too black.
And RED. Today, tomorrow. the next.
 
Each phrase careful, only to be more careful,
each number with its specific meaning and power,
power over every aspect of my day.
None of it fits though - does it nurse? She has compassion at least.
YOU NEED as Specialist in an area they do not exist. Oh Dear. I speak.
I want to scream aloud.
The DOC shows compassion my way, usually, on their good days.
Which of course helps this craze settle to less of a craze.
Ahhh though, here we go again. OHHHH. OHHHH. And OHHHH.
This should be a song. The song of Meg with a sore leg. The song of Meg with her bad head. The song of Meg with a sore toe, The song of Meg with all but woe.
 
Parameters, definitions, distinctions, guidelines, rules. They keep popping up.
This millimetre, this fat sparing, this blockage, this cell, this adhesion. This bile.
This blood, this heme iron, this transfusion, this infusion, this suture, this calcium score, this d-dimer is too high.
 
This, this, that. this sodium, this potassium, this gas, this acid base, this pulmonary nodule, this heartbeat, this ECG, this ECHO, this lack of oxygen, this gene. OH, and that gene too.
 
This b12, this lack of paper and ink, this DARK INK, and feelings, and too many feelings, and oh this history, this mental illness - is it real or not? Should we see? Who is she? What is her background, is she of wealth, is she poor, is she smart or a nark? Who is her family? Who is she berating us to on her phone? Let us see please. Who is this fine mess? It is ok, I am just me, just do not tick me off today because I can be scathing. Just like you. But I am in PAIN, so watch it. And I am at SEVEN.
 
And there is more, this overload, this foul bowel.
This stuck food, this piece of me,
this gastric issue, this reflux, this migraine, this tissue,
this medicine with its side effects, or advantageous effects,
this blood pressure, is up, is down, is around,
this oxygen level, this low temperature. This high one. This in between state.
This sickness, this malady, this illness, this condition, this fake, this real, this ordeal.
This infection, this antibiotic, this fungal killer, this wart medicine, this anti-acid, this cutterage, this biopsy, this burning of skin, this mole, this growth, this enema, this cream, this drawer full of creams. The pharmacy in my bathroom looks strange.
These asthma meds, these Band-Aids, these antiseptics, these antihistamines, these Panadol, these Maxalon, this ibuprofen, these vitamins, these burn creams. These skin barrier lotions, this chemo cream, this laxative, these fibre drinks, these liver tabs, these migraine patches, this heel balm and b12 injection ampoules. These pads, these Movicol sachets, these sedatives – this POUTPOURRI!
This pain medicine, this CBD oil, this opioid like stuff, or that, this nutritional deficiency, this dark place, these necessary tests - on no end roads. On paper trails. You INK take away my holidays. You INK are both saviour and persecutor. You INK are the western world with its joys and sorrows. You bring me thankfulness and you bring me sorrow.
 
So dear INK I am no apologist today for my nasty letters at times, my poems, my questioning my anger, my disappointment, my depression, my sadness, my relief, my grief. It felt good to speak up, and I warn you and I warn you again. Do not mess with this agony bag. Accept and help her. This, that, that, and this. Oh, and this and there is more.
 
So how do we heal, with ink all around - with black INK?
She is not one problem, she is COMPLEX. She is a true Zebra black n white striped. And paper sheets and paper skin, resting on her paper bed. Her wayward cells, and bones, blood, and tissues speak as they do.
 
Mystery Ink. You are a shape shifter - you are.
But do not you dare shift the blame to me, dear INK,
For this paper thin, skin. Is what it is, and it is NOT yours.
 
And dearest symptoms why must you stay and then hide. And then scream loud.
I am sensitive to noise. You want to be heard and I hear you. I hate you and I love you, but I still wish you would find a place of your own. Where you really belong.
 
Prying eyes, blind eyes, action plans, non-actions, withering, chronic disease management plans, hydrotherapy, physiotherapy, specialist appts. Wheelchairs, and mobility aids.
Break-through pain. OHHHHH ohhh OHHHHH ohhh OHHHHH.
Say it, say it, speak. I resent your INK, I do, I do.
Pain suffering, illness, bleakness, inertia, cruel joke, funny guy!
Good-bye sophisticated life. You did get close.
I will not be nice today, I will not be helpful, be accommodating.
Okay. Okay. Okay.
 
Our cells are great little workers and then they are not.
Some of them live in complete darkness and
Do plan to take over the HOST, which is you. Beware ok.
 
I am well fed up with paper and ink.
Thoughts views, sayings, all words, all descriptions,
Opinions.
Let my creased paper body, and my creased paper bed.
Go back to its suffering, it does it well.
Be testament to my human spirit, pure as it can be.
 
Laugh bone and cackle too,
Do it louder for all to see,
Why don’t you?
Stay abusive Nerve, you will anyways do as you wish.
Or keep sleepy, slow, and lethargic.
Nervous rigid muscle, keep on keeping, tighten your reins.
Brain, oh ball and chain,
vice-on-my-head – your thoughts did this.
My vice – listening and caring for you all – too much.


It is easier to cave into it all. And that I have learnt
Brings me to a five instead of a seven, through gritted teeth though.
 
Oh, dam you PAIN. Really the next life will be easier.
That is certain. God has promised me.
 
Oh Medicine, INK, Oh Malicious World,
You are here and you are amoebic,
You crawl, slither, froth, and bite,
At this crossroad whereby vitality, peace and other,
ran for the green safe hills.
To a stronger paper-bark shelter. Indigenous and safe.
 
Navigate me out, it is not too hard, will you?
I am a good person. Despite how I sound on here.
Of wretched love hate dysphoria. Yes, DOC, you have it too.
It is not only ME.
You are but human. And I am at times not.
Medicine. Inc.
INK.
Bless you, you too pain.

I’m reading Matthew Dickman,
keeping my sunglasses on,
listening to new arrivals lament
their eye problems to reception.
A man in denim, jacket pinned
with rock god badges has the attention
of the waiting room, says the weekend
in A&E was busier still, here till midnight
the nurses agree – it was diabolical.
Paul is back Monday, losing his sight
jokes about seeing everyone in double.

About the author:
Rachel Burns is a writer living with disability and chronic illness. She lives on the outskirts of Durham, England. Her debut poetry pamphlet, A Girl in a Blue Dress, is published by Vane Women Press. She is published in literary magazines including Butcher Dog, Mslexia, The Rialto, The Moth, and Magma Poetry. Rachel was shortlisted in the 2017 Keats-Shelley Prize, came second in The Julian Lennon Prize For Poetry 2021, and was longlisted in The National Poetry competition 2021.

Disability Poetics Course: https://www.creativefuture.org.uk/events/disability-poetics/

You lie there, caressing the minuscule dark particles of my brain
the reminder that you were once here
a constant murmur in my ear
Your sweet voice   — echoing
enticing me to live better
 
to endeavour love and hope once again
Your image severing my lust for life
with a strewn icicle
like the ones that hang lightly from the roof of the veranda
hoping one will fall and slice through me as I slam the door
 
harder and harder each time
to lie by your side, frozen in time with larvae from the blowfly
seems all but a dream to me
one I fantasise about daily
 
I would have the larvae devour my flesh
consenting the soil to make love with my ossein,
the thought of our carcasses inflating reminds me of that summer,
the summer we rented a bouncy castle in the shape of a cat for your birthday
 
together we shall bloat and collapse,
allowing our love of creatures to bounce and feast upon us
Mites  Carpet Beetles  Skipper Flies  Ants
Reminiscing that time I gifted you an ant farm after your first transplant

On solo strolls through the suburbs of Bethesda,
I can’t help but notice a newly hatched dragon
has attached himself to my right trouser leg.
 
He’s light, not quite three pounds,
and his claws aren’t too sharp
when he grips around my calf for a ride.
 
He will dash into the shrubs
if we ever see a fox,
then scurry with a huff, to latch back on.
 
I’ve never seen him fully,
just his scaly golden tail when it drapes
over the ankle of my boot.
 
And sometimes I’ll get a whiff
of butane, like a lighter not quite catching
when he’s practicing his flames.
 
The neighbors never see him, or at least
pretend they don’t. But babies in strollers
sit bolt upright and point.
 
I think children, like dogs, sniff out illness,
they can find what’s not quite right. But I’ve no idea
how long he’ll stay or how big he’ll get.