Tanka

Open Letter to Whom it May Concern

The following letter is written from the heart and broaches the difficult arena of disability and sexuality, which is a topic I will be focusing on over the coming months. I am excited to announce that I will be working with Dave Brown who is the Principal at The Centre for ICASA, the UK Sexual Healing Centre.

My issues will become clear to those who read this difficult-to-compose open letter, which is written with honesty and openness. Please be aware that this letter does touch upon adult themes though, as always, respect is at the centre of everything that I write.

Please note that the piece of art used below is Girl with Tear by Roy Lichtenstein. I do not hold copyright for this image and this image is not connected with my work in any way.

***

As well as living with Friedreich’s Ataxia, I am also locked in a struggle with two familiar bedfellows of this progressive genetic condition – loneliness and depression. These negative emotions are exasperated by the fact that I cannot fully function in the sexual game of life, despite being in possession of all the necessary equipment and having a healthy sex drive.

There are many reasons why I feel excluded from society. I discussed many of the limitations I feel in my latest book of poetry, Dancing on Thin Ice. I have included many of the poems below between paragraphs trying to explain, with respect at all times, the emotions and frustrations that I face.

I have not been fortunate enough to enjoy much success on the dating scene. The relationships I have had with the opposite sex have poisoned my mind and left me feeling that the ideal union is not attainable.

Fairytale Romance

She’s out there, somewhere

My angelic devotee.

A buxom beauty 

With cascading locks of hair

Residing with pigs that fly

I guess part of the problem is that my idea of the ideal union is far from conventional. I have experienced a conventional relationship in the past, got married, experienced the humdrum reality that people bizarrely seem to strive for. I thankfully found an escape route when my ex proved that her legs were more spreadable than Clover margarine. Suddenly, I was booted out of my stagnant position of a husband and free to build a life of my choosing.

Freedom is not much fun when you live with Friedreich’s Ataxia. There are so many different hurdles put in the way of true equality for those with only the slightest difference from the midstream masses. Ataxians face an arduous assault course full of hazardous pitfalls when aiming towards a level playing field, particularly when it comes to the dating scene.

For Your Entertainment

I am undateable

According to Channel Four

Look at the cute crips

Patronise at your leisure

While society stands still

In the ten years I have been divorced, I am proud of what I have achieved. I am the author of two books, I have been awarded an Honorary Fellowship for my work in Disability Rights by Glyndwr University and have led the successful #SaveWILG campaign to help protect independent living for those with high support needs in Wales. This is in addition to maintaining and designing my quirky bachelor pad and travelling across England and Wales. However, I remain unlucky and frustrated in my relations with the opposite sex.

Don’t get me wrong, I have plenty of female friends who are very important to me, but I am missing out on that special someone who I can become intimate with. To make this situation even more depressing I have been robbed of all dexterity due to the effects of FA. I shouldn’t have to paint a picture of the limits this means that I face. The options open to most men with regard to sexual release just aren’t there for me.

The most worrying aspect of this is to my general health. The following paragraph was taken from Reuters Health:

” Ejaculation frequency could be a sign of overall health. … (Reuters Health) – – Men who ejaculate often may have a lower risk of prostate cancer than their peers who don’t do it as frequently, a U.S. study suggests.”

So what is the solution? Every time I pluck up the courage to discuss the issue with the doctor I am fobbed off through sheer embarrassment. It is an area that people don’t feel comfortable discussing, but if it saves lives then it must be worth opening up about.

As I can’t do anything with my own, useless pair of hands then the obvious answer is to find someone with hands that would help. This is not an easy thing to do. I have been trying for ten years. I have had one or two successful arrangements that were fun while they lasted, but had no long term stability. Frustratingly, they also cost me a pretty penny. Oh to be desirable without financial incentive…

The problem is trying to achieve a perfect settlement whilst also making sure all parties maintain their dignity and self-respect. I have no desire to merely use a member of the opposite sex for my own sexual gratification. I much prefer to build a true friendship that has an intimate element to it. This sounds acceptable on paper, but in the real world it is extremely difficult to find. It is not as if you can approach someone in the supermarket and ask if they would be interested in a friendship whilst enquiring about the strength of their wrists.

Superficial Puzzle

Unrequited lust

Equals a half-empty bed

Desexualised

Hunting down the missing piece

Undesirable, alone

I can spend so much money on simply meeting a sexual need. Ejaculation is good for our physical and mental well-being, so I find it strange that it is not discussed more openly and seriously. Why do I feel so sleazy writing about something that will help my health? The simple fact is that I do not believe that I should have to fund something that I need to stay healthy.  If I lived in the Netherlands I believe I wouldn’t have to consider using my own money to fulfill a biological function.

The following link takes you to a page that explains all about sex care and how it works in the Netherlands. This should be read by everyone, without embarrassment. It is something that I would like to see established in the United Kingdom, but I know how difficult it will be for our antiquated, Victorian nation to follow the lead of a progressive, liberal country.

In the meantime, I will have to find the money from somewhere to keep myself in order. The only other cheap alternative I have at my disposal is phone sex. Over the years I have spent a small fortune on Premium Rate phone lines. This has only ground to a halt now that I receive 24/7 support and therefore do not feel comfortable indulging in sex chat while there is someone else in the room. I would not dream of putting any of my support workers in such an uncomfortable situation. However, this does not help me and my needs.

Hanging On The Telephone

Compulsive habit

Born out of pure loneliness

Premium phone calls

Cost money and dignity

Victim of the modern world?

I suppose I should be grateful that I am no longer running up huge phone bills after paying 51p per minute or something extortionate like that. It became an unhealthy compulsion that I didn’t even enjoy. After the show was over I would be left bemoaning the situation I found myself in and I would always end up apologising to the woman on the other end of the phone. They would always be puzzled about why I felt the need to apologise. I guess I am just a decent human being and I don’t like the idea of using anybody for my own sexual gratification. Unfortunately, needs must and no one was ever hurt or offended…

I am always aware that time is at a premium as I search for an unconventional partner in crime. The median age of death for people living with Friedreich’s Ataxia is 35. I am rapidly approaching my 43rd birthday. The closest I have come to finding the perfect match at the moment is through my relationship with my friend Robyn who I wrote the following Tanka about:

Wonder Woman

The  ideal union

A new woman in my life 

Plastic fantastic

Her perfectly formed figure

Mannequin in lingerie

Of course, I have a number of close female friends who I value and respect greatly. I am a good guy, therefore I also have the same amount of respect for their husbands and partners. Friendship comes easy to me, it is steering relationships down a more intimate avenue that I have difficulties with.

I think I have covered most of the bases in this article. There are so many stories that I could share about being “ghosted”  or the multiple times I have put myself in danger for the allure of trying to create an intimate situation through sex workers. I often get confused between love and sex, as it took me way too long to realise that neither of these mean anything without the other.

Square Peg, Round Hole

Attempting an impossible fit

Without wishing to look an utter tit

Will that spaz ever manage it?

Square peg, round hole

 

Acceptance is what we strive for

A level playing field, no more

Let me display my regular, everyday, humdrum core

Square peg, round hole

 

Accessibility would be a start

Open the barriers to superficial hearts

And be rewarded with love that won’t tear you apart

Square peg, round hole

 

Conformity with the masses is a must

Difference as sexy as a stale pie crust

Something, something that leads to lust

Square peg, round hole

 

Fed up already of this rhyming lark

Guess I ain’t no John Cooper Clarke

How the hell will I make my mark?

Square peg, round hole

 

Instead of copying another man’s style

I need to go the extra mile

Writing personally with added guile

Square peg, round hole

 

Breaking free from restrictions

While penning accurate descriptions

In free-form style – it’s what I need to do

Square peg, round hole

 

So I guess I’ll never fit

Into your confines, YOU utter tit

I’ll be myself – get used to it

Square peg, round fucking hole

This article is not an advert, but if you are in a position to offer solutions to the situation I find myself in then please feel free to contact me in private via nathanleedavies @ gmail.com

Dancing on Thin Ice – Available Now

I have just received a delivery of 150 copies of my new poetry book. This features Tanka, Haiku and List Poems over 76 pages. It can be bought for just £5.

You can make a purchase directly through me, or if you live further afield, simply contact me through social media or the contact page of this blog. Don’t forget to include your name and address. I will then work out postage costs and advise you of payment methods.

It is a good read, and if you don’t believe me, maybe you should look at the following endorsements that I am honoured to have adorning the back cover of my latest publication:

“Nathan is a force of nature and an inspiration. To create in the face of great struggle is a noble feat. That Nathan refuses to be silenced by his personal circumstances or by a political system that appears to actively penalise those who need the most support is a testament to his strength, both as an individual and writer. It would be easy for Nathan to fold inward, to focus solely on his own experience, but while these poems do offer deeper, heart-wrenching insights into his world of living with Ataxia, they also artfully illustrate our writer’s wider crusade to campaign for justice and fair treatment for all who are dis-abled by their interactions with our ableist world. These are not poems that sit easily with a reader of any conscience. There is nowhere for any fair minded person to hide in Nathan’s words, that reflect the rock-hard world of his experience. By firing these sniper gunshots of truth, Nathan refuses to shy away from the casualties created by our unjust world, instead he zooms the lens in closer, daring the reader to blink first”.

Sophie McKeand

“If you don’t want to hear profanities, look away now. Nathan Davies’ collection of tanka is not for the faint-hearted or conflict-avoidant, nor for the reader who finds it easier to feel pity than rage. Davies brings us up close and personal with his articulate anger, which has its roots in an intolerance of social injustice. These are important poems which punch above their 5 line weight, leaving us readers inspired, enraged, motivated to act and defeated before we’ve started. Every line is delivered in the authentic voice of someone who knows only too well what he’s talking about”

Liz Lefroy

These are humbling words and the fact that they come from two renowned poets that I admire completely, means so much to me. They have both influenced my writing, and made it possible for the book to be created.

While I am giving out thanks, I must pay tribute to Ter-Jaiden Wray who designed the front cover and my friend and poetic mentor Ted Eames, who has been instrumental in helping me reach this point.

I hope those who buy a copy, get much enjoyment from my poems…

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Dancing on Thin Ice

I am excited to announce the imminent release of my second book: Dancing on Thin Ice.

This is a volume of poetry by myself, including Tanka, Haiku and List Poems. It will retail for just £5 and will be an ideal stocking filler for friends and family. It is due to be officially launched at an Arts and Activism talk that Ted Eames and I are giving at Glyndwr University on November 13th.

For those of you who would like to pre-order your copy, you will also receive a free badge of the South Park character that represents myself on my book covers and as the icon on this blog.  The badge can be viewed below.

I would also like to thank Terence-Jaiden Wray for his magnificent work on designing the front cover of my latest volume. He has done a tremendous job that really adds to the professional feel of my work. I would also like to recognise the efforts of Ted Eames in helping me put this book together, introducing me to the Tanka form and giving me confidence in my work.

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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