A River of Scars
bear with me a little longer
my mother said her voice—
a contusion wrapped in burlap
tossed towards the red sky
it happened in the month after
i turned thirteen the synovial
fluid in her left hip began
to evaporate like rain leaving only sore bones
& a limp
ashamed of her scars &
the clunking way she walks
across a dance floor or any
room bustling with happy
& oblivious people
pop culture— I should want
to be looked at [but when she
was regarded I didn’t know
how to feel]— the kingdom
of the sick is not a democracy:
lie down. bend forward.
Poem submitted by Ojo Taye
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Dancing with grace
Dancing with grace, moving swiftly, leaping, mirroring a Giselle. Jumping without a thought, no questions asked. It’s all so easy. I feel the breeze against my arms as I press wind with resistance. You can watch me from a distance
We do not mean to be scarily to you.
Are we characters of imagination?
No, we are not, we are real and human, but we have our imagination.
We are different to you; we guess but do not mean to be.
We guess it is hard for you to work us out.
We are real and we mean no harm.
We could be a character, but we are still real.
We find it hard to express our feelings.
Communication, facial expressions etc, we guess are hard for you to
understand.
We worry about what you think of us in case you think we are
something we do not intend to be.
Poem submitted by Sara Gorman – whose favourite charity is mencap
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PMLD
We are not capable of learning,
So do not tell me
There’s something going on behind the disability,
Treated as useless handicaps
Minds with nothing in there, tragically
Stuck in a wheelchair,
Disabilities visibly crippling –
Just incontinent and dribbling,
We are not
Academically able
You should make our minds
Stagnate in special education!
We cannot
Learn to read,
Learn to spell,
Learn to write,
Instead let us
Be constrained by a sensory curriculum.
It is not acceptable to say
We have the capacity to learn.
School should occupy us, entertain us; but never teach us,
You are deluded to believe that
Our education can be looked at another way!
Poem submitted by Jonathan Bryan – whose favourite charity is:
Teach Us Too
What’s that you said?
“What’s that you said?” I ask
As I cup a hand behind one ear.
Oh dear! My heart sinks.
Nothing can disguise the albeit fleeting annoyance
He whom I am addressing cannot camouflage
As my question obliges him to pause.
He takes a pointedly deliberate breath
And turns to face me
As though to make the point
That I am the one responsible
For breaking his train of thought.
Preceded by a forced and fleeting smile
He now more than deliberately
Repeats the point he wants to make.
—–
The coronavirus is doubly cruel
To those of us who do not hear.
The face mask is the curtain that hides
The lips on whose movements we rely
To read the message you might impart.
In more senses than one
Deafness is the silent disability.
Poem submitted by John Dove – whose favourite charity is:
Action on Hearing Loss
THE OUTCASTS
When families reunite, in gardens with beer and cheer,
I will still be listening.
When neighbours have toured more houses in a weekend than I’ve visited this year,
I will still be video calling.
When Facebook is filled with pictures of friends by the sea,
I will still be pacing my garden.
When the schools and nurseries reopen and parents breathe a sigh of relief,
I will still be educating my Dylan.
When retailers turn over signs, from ‘closed’ to ‘open’…’all come in!’,
I will still be online shopping.
When the ‘two-metre rule’ is relaxed and the nation celebrates a ‘hug your loved ones’ day,
We will still be sobbing.
For we are the shielded.
A forgotten corner of society deemed too weak to risk.
And even though we forwent our treatments to make space for the sick,
We curried no favour, gained little coverage.
There was a window of opportunity, a chance to really experience.
How lockdown gave a taste of disability and how we have to live.
But the time when we were ‘in this together’ has now seemingly passed,
As people go back to normality, the shielded are left at home. The outcasts.
Poem submitted by Joel Nelson – whose favourite charity is: Versus Arthritis
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How Are You?
‘How are you?’ ‘I am fine.’ And so it goes.
The story runs too deep, it does not show.
Thus words present a picture they can paint
Of partial truth, a life you cannot taint
With ‘This is grief’ and ‘That I cannot bear’.
It is not warming closeness when you share.
Instead, unheard of, unleashed stifled yearning.
‘She makes good progress now, it seems she’s learning.
Her conversation, yes, and how she talks
Is worth much more than how or if she walks’.
So words become the medium of a life
As friend and mother, lover and as wife.
They angle feelings, like my body’s leaning,
Distorting what is raw unbridled yearning.
Poem submitted by Myfanwy Vickers – whose favourite charity is:
Spinal Injuries Association
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Try Not To Cry
Little eyes welling up with tears
“Mama are you ok?
Yes, I say as I quickly wipe my eyes
And shield them from my pain
Try not to cry I say in my mind
Stay strong, for them, for you.
Little hands reach for mine and they whisper “I love you mommy forever”
I try not to cry as I don’t know if I will be there when they need me most, graduate, have babies of their own
Constant fear consumes me and the guilt of them seeing me this way.
A puddle on the floor,
Heaving,
Spinning,
Losing control.
I must be brave I say, but my mind is telling me I’m dying.
Every bone hurts, the pounding in my head, ringing in my ears, the slightest noise makes me want to scream.
And some days I snap at those sweet souls just being kids, because I cannot take the sounds, the screams, the chatter,
I want to just disappear but I have to stay here for those little eyes filling with tears
“I need you mama!”
I find a place when they are finally tucked in bed, warm and safe…dreaming of blue sky’s and butterfly’s
And I cry and cry and cry.
Poem submitted by Erika Beauchamp – whose favourite charity is:
Bay Area Lyme
We Can
sometimes I feel like Lot’s wife
salted stiff
fixed on the past or
Daphne grown over with bark
cursed with wittering leaves
the laurel of sorrow
sometimes I feel held together with string
wintered from last year’s beans
frayed thin decayed
its tenuous grip on the sticks
leaning at 30 degrees
sticks frozen as if mid dance about to salute the sun
about to leap about to become
upstanding
and I see that
‘about to’ is as potent as Spring
warming earth
cracking ice
greening twigs
and we are not pillars or poles
or girls tuned into trees
while we breathe while we breathe we can move we can
Poem submitted by Wendy Osbergy – whose favourite charity is NASS
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My Life by Charlie Baker
My name is Charlie and I’m twenty-five,
Sometimes I’m lucky to be alive.
I play with my friend Erik on the Wii,
I can do that easily.
I can’t see or get myself dressed,
But I always do my best.
My music taste is a mixed bag
And I do not want anyone to nag.
I go to my sessions online, or live
And we either walk or drive.
I go out with Becky and can’t you see,
It’s nice for the two of us to be free.
Me and Amy are the best of friends,
You can see our friendship never ends.
Seven and nine sleep in the yurt,
Let’s hope the bed doesn’t get covered in dirt.
Twenty-six sleep upstairs in my room,
And next morning, music club on zoom.
I can play the piano very well,
From mixed bag to TV themes, such a spell.
My name is Charlie and I’m twenty-five
And I am so lucky to be alive.
Poem submitted by Charlie Baker – whose favourite charity is:
KEEN Oxford & The Parasol Project
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A LETTER TO MY ILLNESS
Illness is a challenge, it causes us so much loss,
We have a battle on our hands to remind ourselves who’s boss!
I mostly focus on the positives and try to remain upbeat,
But when dealing with so much at once, it’s not an easy feat.
So here is a letter from me to you to tell you how I really feel,
In light of trying to be more open and in the hope it will help me heal,
Dear illness, you’re a friggin thief, you’ve stolen so much away,
From the person I once was to having some sort of ‘normal’ day,
Sometimes I feel angry about the things you’ve taken from me,
From basics that I took for granted through to my identity,
You took away my social life and any sense of fun,
Your timing was crap as I was starting afresh, a new life had just begun,
You went in hard, took my job and a career that I really enjoyed,
As whilst I tried my hardest I could no longer be employed.
You took my independence, one of the hardest things you stole,
Because without it I have to rely on others and feel I’ve lost my role (and soul)
You stole the most important thing, my health and the life I knew,
Maybe you thought it was time for me to find a version that’s new,
You stole away my finances and all the savings I once had,
And also from my family, which just makes me feel bad,
You took away the body I knew and my chance of giving birth,
Which as a woman I find hard to accept as it removes my sense of worth
I don’t know what I’ve done for you to put me through this hell,
But I will fight you til I’ve nothing left as I’m desperate to get well.
I also feel that it must be hard for my friends and family,
As whilst I am dealing with my loss, they have also lost ‘ME’
To my illnesses, you’ve certainly made it a challenge so far
And I know that I’ll be leaving this battle with scars,
You have made me a prisoner in so many ways,
But I will continue to fight and make it hard for you to stay,
There’s no way I’m going to let you get the better of me,
And one day you’ll be the prisoner and I will be free
You haven’t stole my spirit, my determination or my fight,
Even though at times it feels you’ll take everything in your sight,
I know that I can’t keep you on a leash or on a ball and chain,
As you’ll still be lurking in me to wreak havoc once again,
As there’ s not yet any way I can get rid of you for good,
I feel we need some sort of arrangement where I’m more understood
So I think we should agree it’s time for you to be kind,
And please give some of my life back, my body and my mind.
One day when I feel better I hope I can have a fresh start
And begin to rebuild my life that you have ripped apart.
People tell me I’ll be grateful, will thank you and say “I’ve grown!”
By going through this life changing experience which right now feels so unknown
Maybe they’ll be right and I’ll see things differently one day,
But for now it’s hard to see a future that’s bright, instead of grey.
I can only take it step by step and manage small chunks at a time,
And remain as hopeful as I can that I can reach remission from Lyme!
Poem submitted by Victoria Hamlin – whose favourite charity is Caudwell LymeCo
GHOST
Michael was a little strange
When he appeared on our school scene
He was very weird which we could see
When he hogged the plasticine
When the bell rang for play and lunch
He got silly and upset
He shouted out at poor Miss Tuff
And his mum she’d have to get
Another weird thing that Michael did
When someone bumped his arm
You would think that they had hurt him so
He’d shout and shriek his harm
And soon at play we would ignore
This rude and shouty boy
We wouldn’t laugh at his silly jokes
And for fun we would annoy
When it was nearly Halloween
Miss Tuff asked what we’d be
We all shouted out at circle time
Princess, police and bumble bee!
Weird Michael, he stood up and said
Halloween must be scary
And you are getting it so wrong
How scary is a fairy?
Miss Tuff smiled and then enquired
And what will you go as?
I will OF COURSE go as a ghost
Shouted Michael bold as brass
And very true to his word
Spooky ghost he then became
A long white sheet, poked holes for eyes
(We ignored him just the same)
But here’s the thing, November First,
Michael really made us laugh
He came again in ghostly garb
And refused to take it off
His mum looked a bit unsure
But Miss Tuff saw the sense
And to our surprise we found we had
A ghost in our presence
The ghost sat and did his sums
And helped at tidy time
He didn’t fuss or kick his feet
Or shout the Lego’s mine
Little ghosts like to have their space
From the noise and mess and crowd
And that’s why Michael makes a fuss
And can be a little loud
Michael the Ghost is now my friend
But it’d really suit our group
If soon he can feel just as safe
Inside a snowman suit
Poem submitted by Gail Macdonald -whose favourite charity is:
Simon Community Glasgow
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My Body
This is my body; I know it’s hard to recognise
I had no choice; it has chosen a new disguise.
Please don’t pity me. I can see it in your eyes
Before you categorise, stigmatise, and patronise
Look closer, I am blessed with the greatest prize
My spirit thrives, I rise, I am revitalised.
Poem submitted by Philip Anderson – whose favourite charity is White Lodge
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Between Both Worlds
The sound of car horns go by,
A siren goes off in the distance.
A sleek business man rushes around me,
Yelling into the phone.
The sound of door bells ring as someone enters the coffee shop nearby.
The rumble and faint clanking of the subway passes under me as I walk slowly above.
A small dog starts barking at a bigger dog passing by with their owner.
The sound of multiple foot steps patting louder and closer.
A charade of people come up the stairs from the subway.
A little girl is crying as her mother is going down the subway stairs with her.
The hot dog stand next to the intersection exhibits a worker shouting for people to buy his hot dogs.
The flaps of a few pigeons occur as a woman in a bike flies by in the bike lane through the intersection.
A taxi slams its brakes as the driver is cursing loudly at the biker who went across.
Everything starts increasing in volume, noise overlapping.
It becomes so fast pace, I can’t differentiate each sound anymore.
I stop at the crossroads at the heart of Times Square and look up.
I take my hearings aids off and then suddenly everything is…..
Peace.
I look around me and everything is in slow motion.
I appreciate everything I see.
I can feel my heart beat slowing down.
I am in control.
There is no more noise.
Now I can hear, can you?
Poem submitted by Jan Marcos – whose favourite charity is Zetta
Today
memories have faded and my mind is foggy
I wasn’t alive and I’ll never be.
life is suffering and all I can do to survive
everyday I disconnect from my mind and my body
Lack of energy
aware that I’ve lost so much time
vitality is all but forgotten
enduring all of this suffocation
nothing I can do, I’m powerless
doom, dread, and despair
escaping into the imaginary
remorsefully
I sit on the bed, I creak
I use the bathroom, I creak
I wash myself, I creak
I get dressed, I creak
I eat breakfast, I creak
I travel to work, I creak
I work, I creak
I eat my lunch, I creak
I travel home, I creak
I cook my dinner, I creak
I eat my evening meal, I creak
I wash up, I creak
I watch TV, I creak
I go use the bathroom, I creak
I wash myself, I creak
I get undressed, I creak
I sit on the bed, I creak
I fall asleep …………
SILENCE!
This is a world littered with edges
So, if you try to help me by opening that door,
You will, by default, be creating two more.
So I know it doesn’t feel right
And you don’t want to do it
But if you’d just leave me to it,
I’ll work my way through it.
And please, don’t try to direct me in
Like some sonically guided missile
The thing is this, I’ll miss,
I’ll get all tense and feel up tight
And you’ll say left when you really meant right
And we’ll end up too close in a space that’s too tight
And I’ll put out a hand to reach for the door
And shit…grab your breast instead
Which is really rather more
Than either of us wanted or bargained for.
So, honestly, the way you can help me best
Is to give me some space and time
And I’ll take care of the rest.
And please don’t worry that I’m not going to manage the door
Believe me, its a task I’ve achieved a million times before
Sometimes with my cane in one hand,
A coffee in the other, a laptop under my arm
And so far, touch wood, I’ve not come to any harm.
This is also a world where everyone’s trying to save time,
Dashing here and nipping there
But when I try dashing and nipping
I just end up crashing and tripping.
And although face-planting lampposts does have some comic appeal
My face isn’t fond of the feel of cold steel.
So, I’ll take my time if that’s ok
And yes, I will get in the way
But that’s the way it goes.
And yes, I will hold up the queue
While I work out what I need to do
But if you want to offer me a helping hand
Don’t rush me
Don’t push me
Just try to understand
There are more ways than your way to get through a doorway
And we’re not all looking for the door.
This is a world littered with edges.
For some of us, it’s the edges that we’re looking for.
Poem submitted by Richard Boggie whose favourite charity is Retina UK
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My Unseen Pain
A tropical beach. A first!
A December birthday in the sun
Filled with
half promises, smiling
of who will push who
towards a steady old age.
Dreaming of loves and passion we have shared.
Nerves jangle.Suspended animation.
Life ripped apart, clinging and torn away again.
Where will this unwanted journey take us?
Disaster welling
Why this nightmare?Why now? Why us?
Facebook photos reflect another world.
The gap looms too vast to span.
Will there be another beach
another way for us to live in 2021?
Poem submitted by Helen warner whose favourite charity is:
Spinal Injuries Association
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Positive Thinking
Positive thinking always at the front
This world is very different
Keep your eyes open
You will see many stunts
You can fly with bird
You can swim with fish
Create happiness in the world
Let the others be selfish
You have to find your own aim
To be the part of the game
Your path you have to select
Work hard to get elect
You have to do practice
It will make you perfect
I am encouraging you
You understand it correct
World thinks, we are disabled
Trust on yourself, YOU are especially abled
Poem submitted by Babar Khan whose favourite charity is:
Rights of Women
Light Will Come
This poem dedicated to those suffering from speech disability/impediment .. ‘Rhotacism’
Staying there was wight
but staying here was the best,
clinging to my mother’s bwess.
They say chocolate is good
but I’d pwefer milk.
Woses might be wed
But all violets are blue,
I look at God and i apologize in advance.
Mum say ‘My child you would be alwight,
But deep down she wishes I’d say ‘Wuu’
Maybe one day the light
They talked about would welly come.
Poem submitted by Florence Kendra whose favourite charity is:
Caudwell LymeCo
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SYMPHONY
Ever composed.
Your ear may approve
And retune your pre-conceptions
Poem submitted by Murray Bruce whose favourite charity is:
Horses Helping People
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Life Goes On