I’m too young
that’s what I always thought
what I was taught
you don’t get sick when you’re young
 
It struck me like lightning
sparking through my body
leaving burns only I could see
 
Illness doesn’t discriminate
you can be given a life sentence
without committing a crime
 
chronic illness never saw
that I was barely an adult
that my life had just begun,
it charged in and took control
I didn’t stand a chance
 
“I’m too young for this” 
an almost convincing line
like a broken record ingrained into my brain
telling me I should be okay
 
'you can’t get sick when you’re young'
 
Yet you can never be ‘too young’,
age isn’t part of the equation
pain doesn’t ask for ID
and sickness doesn’t check your year of birth
a diagnosis doesn’t care
that your life has just begun
 
So I stand here now,
without a choice
learning to live with the life I was handed,
pulling strength from setbacks
and courage from downfalls
claiming a life that is still mine
unlearning the myths that society teaches

Each good day feels like a ticking time bomb,
waiting for the inevitable to explode.
They say lightning never strikes twice,
but maybe three, four, five times --
each hospital visit, another diagnosis,
each bolt leaving burns I never asked for.
 
The doctors call it chance.
I call it a pattern etched in static,
my body — a map marked with burns.
I used to think lightning was rare,
just a freak of nature.
Now I know it waits in silence,
and when it strikes,
it doesn’t ask if I’m ready.
 
They admire my strength,
but they don’t see my fear.
I’m more than the list they use to define me.
I’m a daughter, a sister, a friend --
I’ve got ambitions,
dreams that stretch beyond this storm.
 
When will it end?
I whisper to the thunder rumbling beneath my skin,
but even as I crumble,
I stand --
courageous, unbroken, and unashamed,
a fierce light with the strength to carry on.

Today, the pain wears pearls,
sits politely between my ribs.
I dress her in cardigans
and loose language:
"I'm just a little tired."
No one asks tired how it learned to limp.
 
At the pharmacy,
I forget
my own name
but remember
every pill by shape,
not color—color lies.
 
The woman at checkout
tells me
I don’t look sick.
As if illness should dress in spectacle,
as if my body forgot to audition
for their idea of broken.
 
Some nights,
my limbs forget they belong to me.
Memory peels away like wallpaper
in a flooded house--
who was I before the diagnoses piled up
like eviction notices from my own skin?
 People offer cures
wrapped in politeness,
like scripture:
drink more water,
think happier thoughts,
be grateful it’s not worse.
Sometimes I nod.
Sometimes I swallow
 their kindness
like a shard of mirror,
because even pity
can feel like attention.
 
I am the archive
of every
"you're exaggerating,"
every "have you tried yoga?"
every "maybe it’s in your head."
Yes, it is.
It lives there.
It eats there.
It sleeps curled beside my dreams,
drooling its fog into the marrow
of what I once called normal.
I carry absence in my spine.
It pulses when I smile too long.
I’ve buried friends
beneath my silence,
lovers in the shape of questions
they were too afraid to ask.
 
No one sees the room
beneath my skin--
where the lights
flicker                  
and all the windows are locked
from the inside.
I have written letters
to the version of me
they would believe.
She walks without flinching,
remembers birthdays,
laughs without consequence.
But she does not exist.
And I am still here.
Unable
to find parking
in the complicated structure
that is my life.

I wasn’t a teenager
The optician said it wasn’t grease either 
Within months I heard voices that sounded similar 
Each day they got friendlier
I felt humiliated I couldn’t see their faces 
They looked like ghosts and light was scattered through my utah 
I felt saddened that in the night the stars were not clear and appeared to be more far 
My mum held me tight and told me I was her strong 25 year old 
Drs said it was the rarest eye disease they ever saw and my story was just about to unfold 
I began to go from poised to quite the clutz 
At least the elderly had jokes about the reflux 
Or pretty much my bad dancing on broadway street 
The sun was once my best friend but there was a time I dreaded the heat 
My eyes watered and the light scattered more into I threw myself into oblivion 
Then I met a brave Palestinian 
He told me not to give up that the eye disease I had was keratoconus and my cornea was wearing thin 
I cried as I once again stumbled and hit my shin
The Palestinian urged me to get a life changing surgery called collagen cross linking 
I heard crickets as I stared at his ghostly figures thinking I saw a short beard through my excessive blinking
My right eye was too far gone and  I was laughed at as I developed astigmatism and everyone laughed at me 
None the less I was numb for hours and then  screaming baby 
Mum took care of me 
Assuring I got salty drops into my eyes 4x a day 
I couldn’t see with my right eye so I kind of felt helpless at this point in my life and I just listened to soothing audio and lay and lay
My eye healed and she asked if I could still see ghosts or scattering
To my surprise the ghosts were gone and I saw the scattering was less on the lights so we got back to knattering
We had great conversations and eventually I took care of mum through her sickness until she passed away and finally met a great surgeon 
She was Indian 
She moved the entire muscle in my eye the scattered lights is still there and ghosts but not the astigmatism unfortunately nothing could relieve the scar 
There are things I want to do like drive, but I might not be able to because contacts feel like you’re wearing foreign objects and getting infections 
I wish your sight could be restored with injections 
Like they do flu jabs and other such nonsense 
None the less it’s a horrific disease but it never stopped me smiling but why be miserable I have my other eye it makes sense 

Forest shadows hide impairment.
Owls hoot, concealed in the dense canopy.
Tall, leafy trees flank the faint path.
Difficult to follow, wander aimlessly.
Lost, and the orange sun dips down;
walk in an endless maze.   
Leg weak, worry about falling. 
Disability is a war with no battles.
 
In a clearing, giant raccoons
with bushy whiskers, striped fur,
and ringed tails encircle us and watch
with reflective beady eyes.
Leader wears mask, makes handicap
fall behind, cannot run.  How to escape?
Will the fairy godmother help
or will the evil witch devour us?
 
Hear a car with music blaring
from the speakers.  Look towards
the sound and see a road. 
Hiking poles to get over the rocky trail,
right half of body weak.
Now, see the way to overcome
yet another challenge.

Listen carefully to these words.
 
The Big Bad Wolf to Little Red Riding Hood.   Mama,
Papa, and Little Bear to Goldilocks.  Puss in Boots to
his young master.  Several fairy tales have animals talk
like actors in a Shakespeare play, reciting their lines.
Disabled people are understudies with stage fright, frozen
on stage.  The animals laugh at them, and they become
silent and still.  The damaged ones just watch the
performance as if from a distant alien world.
 
A different fairy tale, without words, just shadows
and sorrow. Aphasia stole their cracked brain, and threw
it down into a deep, cold, wet and dark well.  Broken
switches, misfired rifles, the lone soldier.   A long battle
ahead, they must overcome multiple obstacles.  Many
changes lead to a new beginning, but hard work will
set them free.  Through the thick tree canopy, the sun peaks.
 
A happy fairy tale ending is within reach.

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 several online poetry journals.  Writing poetry has helped her recover, and dictation fuels her words.

​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/