Tanka

Mind Games

My mind is cluttered up at the moment as the need to Save WILG increases and my disability continues to progress. Throughout all this I am surrounded by some amazing friends and comrades who really keep me going, yet still I remain intrinsically lonely.

This is not meant to be a self centred, depressing blog. I am just stating my feelings on a sleepy Sunday morning. Hopefully others will be able to relate to my story and it is in this spirit that I am writing.

After enjoying an evening watching the superb Joe Solo at The Sun Inn, Llangollen. This award-winning musician, writer, poet, activist, broadcaster and washing machine engineer hails from Scarborough. His musical odyssey began in 1987 fronting a bash-em-out band at school, and has seen him play seven countries either as lynchpin of pop-punk upstarts Lithium Joe or hammering out his unique brand of Folk, Punk and Blues in his own right.

He put on a wonderful sincere show that obviously came straight from the heart and he managed to spread his passion for politics throughout the packed pub.  As he was performing I couldn’t help but wish I had remembered to bring a #SaveWILG postcard for him to pose with. I had to compromise and took a photo of Joe and I after the gig so that I could show that he was a supporter of the campaign.

Then I saw the photo…

At the beginning of the evening I chose to wear my new New York City t-shirt in homage to John Lennon. Unfortunately, I do not resemble the former Beatle in any way whatsoever so could only be disappointed with a photograph of a chunky bloke slouching in a wheelchair with a recognisable t-shirt hiding his flab. I was disappointed with the picture. Joe looked great and we captured the busy pub behind us, but the shot was ruined by me. I guess this is what happens when you are a perfectionist trapped in a imperfect body.

john_600x

I think the problem is not that I am especially overweight. I recently got weighed and was pleased to find that I was only 13st. This is about average for someone of my age and height. The main issue that I have is my posture in my wheelchair as due to Friedreichs Ataxia my hips tend to roll forward causing me to slouch down to a uncomfortable position. My spine is of no use at all as I am suffering from Scoliosis which means my spine has a sideways curve.

I guess this is one of the hard things of living with Friedreichs Ataxia – it is constantly changing due to its progressive nature and I am always having to come to terms with accepting changes to my body. At a time when I am fighting the Welsh Government, Wrexham Council and Wrexham AFC this is particularly hard to cope with.

However, I am a fighter and I will continue to fight while trying to learn to ignore media perceptions of what is beautiful and accepting that I should really love myself.

I really should spend longer writing this blog, but I just do not have the time to explore my feelings in a deeper way. Tomorrow afternoon I have a meeting with Wrexham Council that I need to prepare for plus countless emails I need to write without any comfort eating…

The fight continues.

***

After watching Joe Solo, my own creativity was sparked into life again and when I got home I wrote the following Tanka while lying in bed.

Sepia stained youth

 Running free through fields of gold

Stranded in the past

As your whole body erodes

Revealed in digital form

 

 

List Poem: Living with Ataxia

Disability Arts Cymru have introduced me to the amazing Sophie McKeand – the gifted writer, poet, performer who is the current Young People’s Laureate Wales April 2016 – 2018, winner of the Out Spoken award for Innovation in Poetry 2015 and longlisted for the Poetry Society’s National Poetry Competition in 2014.

Writing about the incredible collection of poetry, Rebel Sun, by McKeand, Martha Sprackland [me neither] says:

“This is mythological, musical poetry that not only crosses borders but seems to dismantle them entirely, collapsing time and space, transfiguring and prefiguring the world we live in.”

I have a signed copy and can confirm the books brilliance.

Anyway, Sophie is an admirer of my Tanka work and has encouraged me to try different poetic forms such as the List Poem below. I was fortunate enough to perform a list poem alongside Sophie at the #SaveWILG community awareness day at Set the Bar in February.

This was a resounding success and gave me the belief in my talent that I needed. It also led to further ideas for more poems such as the one written below. Maybe I can perform this in future with Sophie as I think we made a good pairing. Sophie is an esteemed poet in her own right so she probably doesn’t want me hanging around like a bad smell, but I think that I should maybe be looking for a person to complete my double act. I need an Ant for my Dec.

Anyway, here is my latest list poem:

Introduction: Music of this type will be created and performed as a backdrop to the introduction phase of the poem. This will be narrated by a third party.  

Friedreich’s ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. The disease is progressive, and ultimately a wheelchair is required for mobility. Its incidence in the general population is roughly 1 in 50,000.

The ataxia of Friedreich’s ataxia results from the degeneration of nervous tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement of the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath (the insulating covering on some nerve cells that helps conduct nerve impulses).

The condition is named after the German physician Nikolaus Friedreich, who first described it in the 1860s.[1]

Symptoms typically begin sometime between the ages of 5 to 15 years, but in Late Onset FA may occur in the 20s or 30s. Symptoms include any combination, but not necessarily all, of the following:

It presents before 22 years of age with progressive staggering or stumbling gait and frequent falling. Lower extremities are more severely involved. The symptoms are slow and progressive. Long-term observation shows that many patients reach a plateau in symptoms in the patient’s early adulthood. On average, after 10–15 years with the disease, patients are usually wheelchair bound and require assistance with all activities of daily living.[3] 

[The lines in italics throughout the poem are to be spoken by different people dressed in appropriate clothing and illuminated on a dark stage by a spot light]

Living with Ataxia

Is a struggle

Living with Ataxia

Sounds muffled and unclear

Living with Ataxia

Smells of wet denim and shame

Living with Ataxia

Tastes of bitterness

Living with Ataxia

Feels brittle

Living with Ataxia

Wibble wobble, wibble wobble jelly on a plate

Living with Ataxia

Effects everyone around you

Living with Ataxia

Leaves you wondering what might have been

Living with Ataxia

Demands formidable mental strength

Living with Ataxia

Beats being programmed by The Man From Auntie 

Living with Ataxia

Could be the best thing that ever happened [discounting Maggie’s demise]

Living with Ataxia

“He’s just lazy and clumsy”

Living with Ataxia

Means wanting what you can’t have

Living with Ataxia

Forbids carnal delights

Living with Ataxia

Limits your liberty

Living with Ataxia

Allows your imagination to run rampant

Living with Ataxia

Prevents the attainment of Aquarian ambitions

Living with Ataxia

“Trampoline legs”

Living with Ataxia

Colours your life

Living with Ataxia

Black, dark grey or midnight blue

Living with Ataxia

Is not all bad [he lied]

Living with Ataxia

Results in a dark sense of humour

Living with Ataxia

Is no laughing matter

Living with Ataxia

“Sorry sir, I forgot my kit”

Living with Ataxia

Adds fuck all

Living with Ataxia

Subtracts hope

Living with Ataxia

Divides friends and family

Living with Ataxia

Multiplies hurdles

Living with Ataxia

“Maybe it’s a trapped nerve”

Living with Ataxia

Confuses small minds

Living with Ataxia

Frustrates 

Living with Ataxia

Embarrasses

Living with Ataxia

Teaches you virtues, such as “Good things come to those who wait”

Living with Ataxia

Makes you wonder who the fuck wrote virtues?

Living with Ataxia

“Have you got a licence for that?”

Living with Ataxia

Highlights injustice

Living with Ataxia

Illustrates that beauty isn’t only skin deep [thank God]

Living with Ataxia

Condemns you to a life less ordinary

Living with Ataxia

Contradicts

Living with Ataxia

Imposes barriers around ghostly souls

Living with Ataxia

“Sorry, only genetically perfect people can donate sperm”

Living with Ataxia

Did I mention it’s a struggle?

Living with Ataxia

Underlines inequality

Living with Ataxia

Objectifies the body

Living with Ataxia

Mystifies my mixed up mind

Living with Ataxia

Disqualifies true contenders to the crown

Living with Ataxia

“I charge by the hour hun

Living with Ataxia

Locks lively minds in dying bodies

Living with Ataxia

Mangles the idea of perfection

Living with Ataxia

Twists the spine

Living with Ataxia

Causes caustic sorrow

Living with Ataxia

“Fill your pockets chaps. These disabled freaks are easy targets”

Living with Ataxia

Suffocates the soul

Living with Ataxia

Haunts empty shells

Living with Ataxia

Implodes

Living with Ataxia

Crushes everything that’s precious

Living with Ataxia

Guess what? It’s a fucking struggle

How to Lose Friends and Alienate People

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

Regular readers of this blog will know that I have put together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I will publish these poems in a book to be released in 2018, utilising the team of illustrators I have assembled to help me add images to my words and create the type of book that I envisage.  I am speaking with students from Glyndwr University who are collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd in Mold, north Wales. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.


Use your silver spoon

To stir up old prejudice

Spread lies and divide

Power and fortune is yours

Eternal damnation waits…

The Independent: Toby Young’s appointment to board of higher education watchdog sparks criticism

You’re Never Going to Keep Me Down

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

This is my 150th poem of 2017 and I have now put together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I will publish these poems in a book to be released in 2018, utilising the team of illustrators I have assembled to help me add images to my words and create the type of book that I envisage.  I am speaking with students from Glyndwr University who are collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd in Mold, north Wales. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.

Looks like you made it

Limping in at the finish

With your pride intact

Battered, betrayed and broken

Set to fight another day

Follow the Script

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

This is my 149th poem of 2017 and I am well on my way to putting together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I would like to publish these poems in a book to be released in 2018, and I am close to finding a team of illustrators to help me add images to my words and create the type of book that I envisage.  I am speaking with students from Glyndwr University who are collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.

I, Nathan Davies

Can relate to your story

Of pure frustration

Held back by the damn system

Until the end credits roll

Survival of the Richest

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

This is my 148th poem of 2017 and I am well on my way to putting together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I would like to publish these poems in a book to be released in 2018, and I am close to finding a team of illustrators to help me add images to my words and create the type of book that I envisage.  I am speaking with students from Glyndwr University who are collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson.

As well as the book, we are also planning an exhibition of my poetry in April in addition to the #SaveWILG exhibition – a collection of visual art, poetry and photographs produced by a number of artists across the UK, focusing on independent living as a whole. The exhibition will open on January 17th at 3pm in the Education Gallery at Theatr Clwyd. It will continue until January 29th. Please come to show your support for this campaign and enjoy the powerful and emotive art created by people with passion and determination that are united in the belief that disabled lives matter.

​Both of these events are being organised with the support of Disability Arts Cymru.

 

Our society

Full of  wireless fizz, bang, pop

Magical gadgets

That make your lives easier

While strangers sleep on the streets

List Poem: Modern Life is…

Disability Arts Cymru have introduced me to the amazing Sophie McKeand – the gifted writer, poet, performer who is the current Young People’s Laureate Wales April 2016 – 2018, winner of the Out Spoken award for Innovation in Poetry 2015 and longlisted for the Poetry Society’s National Poetry Competition in 2014.

Writing about the incredible collection of poetry, Rebel Sun, by McKeand, Martha Sprackland [me neither] says:

“This is mythological, musical poetry that not only crosses borders but seems to dismantle them entirely, collapsing time and space, transfiguring and prefiguring the world we live in.”

I have a signed copy and can confirm the books brilliance.

Anyway, Sophie is an admirer of my Tanka work and has encouraged me to try different poetic forms such as the List Poem below, which I hope to perform alongside Sophie in February. Details to follow.

This remains a work in progress as lines could be added or changed, with the line order also under review, but for a first effort I am happy with the rhythm. No wonder Sophie is impressed…

Modern life is

Driving to work in an electric car while drinking breakfast from a bottle

Modern life is

Smugly using satellite navigation allowing you to avoid the tailbacks

Modern life is

Taking a call from your Spouse on your watch – your child scooped the prize

Modern life is

An instantaneous response from Down Under

Modern life is

The wonder of Kit-Kat Bites Peanut Butter – what will they think of next?

Modern life is

Leaving your car in a blue badge bay because you can’t miss this meeting

Modern life is

Sterile

Modern life is

Eating Sushi with plastic cutlery at a business lunch in Wigan

Modern Life is

Saying one thing and meaning another

Modern life is

Balancing the books while searching for a magic money tree

Modern life is

Not having enough time to be ill

Modern life is

Futile

Modern life is

Knowing your place

Modern life is

Being fed sweet little lies

Modern life is

Not believing the truth

Modern life is

Postmodern

Modern life is

Celebrating yesterday while living in fear of tomorrow

Modern life is

2.4 children

Modern life is

Sickly sweet

Modern life is

Formulaic

Modern life is

Washed down with prosecco

Modern life is

So clichéd

Modern life is

So clichéd

Modern life is

Instantly forgettable

Modern life is

A mundane journey through mundane towns, proud to be home to a Tesco superstore

Modern life is

Forgetting where you are – Anytown

Modern life is

Devoid of any distinguishing features

Modern life is

Empty without social media

Modern life is

Forcing friendship with strangers that you pass on the street

Modern life is

Worthless without ‘likes’

Modern life is

Sanitised

Modern life is

Connected wirelessly

Modern life is

Checking your inbox for love

Modern life is

Finding messages from hard-up Nigerian Princes, robots selling Viagra and pimps offloading Russian Brides

Modern life is

Turning a blind eye to foreign sweat shops in return for cheap clothes

Modern life is

Ignoring homeless families begging for support on your way to the theatre

Modern life is

Political

Modern life is

Choosing sides

Modern life is

Divisive

Modern life is

Explosive

Modern life is

Extreme

Modern life is

Wishing you could pull a cracker

Modern life is

Watching MasterChef with a microwave meal

Modern life is

Battling with the Welsh Government for my liberty

Modern life is

Knowing that I’m different

Modern life is

Waiting for someone to see the beauty inside

Modern life is

Having more questions than answers

Modern life is

Unfinished