“MY DISABLED WORLD” HERE ARE ALL YOUR POEMS (PART TWO)

              

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

I love this feeling so much it’s my passion, I believe, my reason for existence. Basking in my youth, take away this overflowing joy, I would surely die.
No strength sustaining the muscles, oh how I once danced with the wind. I long to lift or fly, soaring high to reach the sky. Slowly, it crept. Blindsided by the trick being played on me.
Fortitude moves me, I dance differently using cane, chair and bench, it’s like the movie red shoes, I want more and more and more. There are wonderful angels, the universe has sent, I am grateful for them all.
I am who I am because I took the falls.
Reflection of myself. This monster robs my strength. I can still imagine dancing with the wind, inside my mind. I Followed what i wanted kept my mind and heart exploring and absorbing , I searched inward and observed outward with devotion to find the lines in my own rhyme. A work in progress, learning who I am, till the day I rest. I’ve been really blessed.
One never knows what one can do or who you really are. Don’t judge yourself, just be free, let yourself be all you can be.
Poem submitted by Donna Russo – whose favourite charity is:
FSH Muscular Dystrophy Association
Autism is speaking, what are you thinking?
Are we scarily to you?
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

Today, like every other day,
Is a task.
Now made heavier
by “the mask”.
As I peer over this flimsy cloth
I see a world that others don’t want to think of.
Each pavement parked car and cafe table
Blocking the way for those less able.
The effort required to make the changes
Is so hard to find when even putting on your knickers takes ages.
I remember times, before,
When life was full,
Of fun and laughter,
Day trips and holidays
With happy ever after.
Sadly now the times have changed
And I see back, now, to how I never saw before.
You see it was me who pavement parked that stupid car
It was me who sat at that street cafe table
It was me who didn’t think of people less able.
I saw them, yes, but felt ok
They had helpers and careers
and always found a way.
Little did I know how hard it really was,
From the comfort zone of my busy life
With it’s constant busy buzz.
I didn’t see the sadness of being so alone,
Relying mainly on human contact via the phone.
Unable to go wherever they want and when,
It didn’t register that my freedom wasn’t theirs.
Spontaneity, choice and human rights
Became fights I had to learn to win overnight
And learn I did with as much vigour as I could muster
No matter how much I would be sore or tired or in a fluster.
No longer was freedom mine to hold,
But fight for,
This I was never told.
You see the world isn’t as easy as you think,
Until it’s you who can’t even use your own bathroom sink.
Poem submitted by Sandra Payne – whose favourite charity is Help For Heroes
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Lack of Energy
Everything, too much

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

existing as no one.

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

Poem submitted by Emilee Lavender whose favourite charity is MIND
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My Day
I wake, I creak
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!
Poem submitted by Patrick & Julie Quinn whose favourite charity is NASS
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Edges

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

I have a disease, one that has chosen me
I’m aware of it daily but it’s nothing you can see
It’s not a leg in a cast or a bandage on an arm
Its felt inside, the pain I hide, while trying to remain calm
Going about my daily chores the days that I am able
But other days I can’t do much and feel older than granny Mable
I’m young at heart and in my mind I can do a million things
But some days this body of mine won’t let me do anything
Just makes me sit or lay in bed with brain fog in my head
And when I’m talking I may forget what this mouth of mine just said
Forgetting words and chores to do unless I write them down
But I try my best to paint on a smile over my weary frown
Get things done when I can trying not to use all my ‘spoons’ that day
But also remembering that if I need to rest, that will also be OK
I used to fret and be upset and think that life was unfair
But now I know that I’m not alone and There are people the same that care
But It took a while for me to accept, that this is the way I am
And all the while remembering that I am a daughter, a wife and a mam
So I push on through as best I can, I will not let it win
Not always easy and sometimes needing the help of gin
Its part of me, but not all of me, it’s not everything I am
I’ll silence it, play it down and carry on as best I can
Ankylosing Spondylitis is hard to say, try living with this disease
Some struggle more than most but some fight through it with ease
Family, friends and Facebook groups can be such a good support
And help you through the sedentary days, and the tasks you’ve had to abort
If you’re feeling down, adjust your crown, as you are a king or queen
For every day you get up and fight this disease that is unseen
Poem submitted by Lucy Williams whose favourite charity is NASS
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New Year 2020

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