Dancing on Thin Ice

Birthday Musings… #SaveWILG

Many thanks to everyone for all the birthday wishes – it means a lot and is much appreciated.

I can’t believe twelve months have passed so quickly. I am proud to have published Dancing on Thin Ice – a selection of Tanka and Haiku poems in the last year. It was a year that began with a visit from Julie Morgan AM, who works as the Deputy Minister for Health and Social Services in the Welsh Government. She attended my house to inform #SaveWILG campaigners that she had decided to give those who were unhappy with local authority assessments, the chance to have an independent assessment with extra funds provided by the Welsh Government to pay for any extra support needed.

This seemed like a victory for #SaveWILG campaigners. Indeed, the support given by the Welsh Government has been encouraging and comforting. They appointed ICS to undertake the independent assessments and the vast majority of these were completed by the end of October 2019.

However, WILG recipients are still stuck in limbo almost six months later. This is not due to any failing by the Welsh Government or ICS, but local authorities are still keeping us waiting, as they rubber-stamp the independent assessments.

I am really not knowing which way to turn at the moment. Life remains very insecure until I find out what the reassessment says about what support I can expect in the future. I am subsequently unable to decide where to put my energies. Do I write a new book, create some new poems or take a well deserved holiday before deciding on my next venture? I can’t make a decision on this until I know how much my independent assessment has been coloured by their meetings with WCBC.

I was told last week, that I could expect to hear back from Adult Social Care at the beginning of this week. At close of play today (Wednesday), I have still not heard anything. I believe a verdict is imminent, as I know a decision has already been made, but being kept in the dark about this is seriously damaging my physical and mental health.

The anxiety all this has caused me and other WILG recipients, is appalling. We should all be claiming compensation for the way we have had to wait, but I am sure we all agree that we just want it over and done with – as long as we end up with the support we need, to live on a level playing field with the rest of society.

Once again, many thanks for my birthday wishes and I hope that by this time next year, I am looking forward to the future with some degree of certainty.

WALESPOSTCARDFRONT001

 

Dancing on Thin Ice – Reader Review

I was delighted to receive a review of Dancing on Thin Ice from Julia Kobel, who is someone I haven’t met, but picked up a copy of my book from my mentor Ted Eames. I have included Julia’s kind words below as I thought it might encourage some extra sales from an indecisive few.

Dancing on Thin Ice JPEG

Dancing on Thin Ice review by Julia Kobel.

Content should be the most important consideration when engaging with new work but I admit to finding the look and feel of a book to be influential. In this case the size, cover illustration, presentation and format seemed very right. The stylised image of Nathan draws the eye and gives the reader a visual connection to the writer before any words have been read, other than the title. And the title is well chosen; it’s something we all do to some extent. Having now read this book I see Nathan’s eyes as two light beacons which cut through and pierce the darkest of places, exposing what is there to be seen if we choose to look.

The introduction and the foreword explain how Nathan’s collection came into being. I always find this kind of information interesting. Much hinges on the fact that Nathan was encouraged to try out the tanka form at Ted’s workshop; one of those chance life encounters which prove so significant.

The definition of Ataxia was factually helpful in that I’m not familiar with this disease. But the list poem was more helpful in that it took the list of symptoms and applied them; giving the reader a comprehensive picture of what having this disease means to every aspect of Nathan’s life. This feels to me fearless writing in that Nathan writes honestly, knowingly and unsparingly; he drives in a straight line at personal issues, not taking the option of going around the block. The lines in italics reinforce the description of ‘living with Ataxia’; and lines directly addressing the reader such as, ‘Did I mention it’s a struggle?’ are very involving. To me this is not the voice of someone whose soul is being suffocated by his disease but someone whose voice/soul is flowing free in its desire to be heard.

I liked the arrangement of the tanka poems being wrapped by the two list poems. Choosing the tanka form to document 2017 was such a good decision. Nathan’s sharp insights are suited to the tight structure, comments hit home because they are so word undiluted. Dividing the poems into three titled sections works well. It helps to establish what is of importance to him. A future workshop exercise could be to read and place the poems into the most appropriate set. I appreciate titles and so I particularly enjoyed the ones which turned well known phrases on their head eg ‘How to lose friends and alienate people’. It did cross my mind that Nathan should put himself forward to write political messages/slogans as he has an insightful mind and his own particular way of truth telling.

Set among the tanka are some haiku. This change of form makes them stand out, in a good way. Their even fewer words crystallise the message. It made me think that the haiku is like the nut inside a tanka word shell.

I read this collection in one sitting because it deserves to be read in entirety and the writing demands this of the reader. It was never intended to be an easy read and it isn’t. Nathan’s writing confronts our perception of what it’s really like to be disabled. There are no tea and biscuit scenarios here, more raw steak and whisky (I hope I’m not offending a vegetarian!). I am an able bodied person living in a bubble world, my life is nothing like Nathan’s. But I recognise that what Nathan is saying is important, important for us all. The poetry vehicle he has chosen to share his thoughts and feelings is appropriate and right. My reading of Dancing on Thin Ice has left me feeling that I have …… learned, been challenged, unsettled, shocked, moved and other emotions I can’t even name. And that is as it should be. ‘Lust for Life’ (one of my favourites) says that it’s ‘Time to shake things up’ ……. be proud, you have enabled that in a most moving way. Thank you.

***

This review is extremely satisfying for me. It shows that I have managed to reach my audience in the way that I had hoped to. The fact that I seem to have been accepted as a writer of tanka poetry, does tend to make me nervous in a way. I do not think it would be healthy to remain stuck in this style and I should explore other areas of poetry.

This is, of course, quite a nerve wracking thing as it would mean reinventing myself and possibly disappointing readers. I cannot afford to keep repeating myself in the tight tanka structure.

What do people think I should do next in terms of poetry?

*** 

You can make a purchase of Dancing on Thin Ice 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 have to charge £7.99 for those who cannot pick up their copy of the book to cover my postage costs.

Dancing on Thin Ice  is also available through eBay. 

Hang Your Heads

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. These poems were published in a collection titled Dancing on Thin Ice in November 2019.

I recently wrote another Tanka following the General Election, which stirred up a range of emotions for most people. Mine are reflected in the poem below:

Fucking idiots

Swallowed lies, rejected hope

To get Brexit done

Condemning those that suffer

To five more years of struggle

 

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

Pulling Myself Together

I have been a little out of sorts over the past week or so, thanks to a chest infection. Thankfully, I have come out the other side and am feeling stronger with every passing day.

It is always scary to be inflicted with a chest infection, as I am only too aware that such infections usually finish off my brothers and sisters who live with Ataxia. I didn’t want to join those unlucky few at this time. There is an election to win before I go anywhere…

The article I have put together below, just sums up some of my moods and feelings over the past few days, while the madness continues with my valued members of staff also being stricken down by illness.

***

FACEBOOK STATUS 1:

I will probably have to stay offline for the next few days as I have just seen the doctor who said I have a chest infection. Bloody hell, this is all I need. I have to take this seriously as living with Ataxia is enough on it’s own without the added complications of a chest infection. I am now on antibiotics so hopefully they will do the trick as I do not fancy a stint in the Maelor. Thankfully, I have some excellent PA’s who will help me get over this and I will be back to full strength in no time.

***

FACEBOOK STATUS 2:

I have just had another home visit by a GP who has put me on a stronger set of antibiotics. Hopefully, these will calm me down and stop me from having regular panic attacks. If I can get a good night sleep, I am sure that will help me loads.

I have also had a letter from ICS detailing the protest for them to make a decision. Basically, I think they were just playing for time. I am too exhausted to think of the ramifications of this. That is a battle for another day…

***

FACEBOOK STATUS 3:

A third out of hours doctor visited me last night and provided me with the super strength antibiotics that I need to shift this infection off my chest. It seems to be doing the trick and I am regaining my appetite while breathing has become easier.

I am disappointed that I still do not have the strength needed to attend the Nick Whitehead Theatre this evening to vote for Helen Grout as Wrexham’s Labour Party candidate for the forthcoming General Election. I am totally pleased to openly back Helen as the only candidate capable of making a real difference to the community of Wrexham as a whole.

I am also pleased that my good friend, Julie Rogers-Owen, will be attending the Hustings and voting in the only sensible way. If the people of Wrexham, really want to see positive politics in action then it is crucial that Labour Party members vote for Helen Grout tonight.

***

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

***

I have two piles of books in my living room. They need shifting if only to quieten the taunting voices in my head. You know it makes sense…

thumbnail_image

Please read the following article: Dancing on Thin Ice: Available Now

***

There is still much work to be done on the #SaveWILG campaign. It seems as if recipients from several Local Authority areas are still waiting on the results of their assessments. I want to emphasise that this is not because of any failing from ICS Services – the independent assessment company who have been put in charge of carrying out the reassessments – but because we are still waiting on the Local Authorities that let us down in the first place. This appears to be a totally ludicrous situation, as it was because we had no confidence in the Councils in the first place, that we launched the campaign. They are still making us wait by holding up discussions with ICS Services. I want to make sure that this situation is sorted out way before the upcoming festive period, as all WILG recipients deserve this after the torrid time they have been put through.

WALESPOSTCARDFRONT001


***

Please watch the following video before deciding what to do at the Ballot Box on December 12th:

 

New Book Available on eBay

PLEASE SEE THE POLL AT THE BOTTOM OF THIS ARTICLE.

I am pleased to announce that Dancing on Thin Ice is now available via eBay.  The listing can be found by clicking on this link.

I have had to set the online price at a still reasonable £7.99 to cover my postage costs.  I am sure my readers understand.

I have also decided to start a poll to help me decide whether or not to enter the 21st century by creating electronic versions of Dancing on Thin Ice and Every Silver Lining has a Cloud.  There are arguments for and against doing this.  I wouldn’t have the first clue where to start,  but I do like the idea of being able to reach a worldwide audience in this easily accessible manner.  I am sure that I would be able to find technical help from somewhere,  but I don’t really fancy the idea of getting close to Amazon.  I don’t want to sell out to anyone.  It would remind me of the Sex Pistols signing a contract with EMI.  I am not a hypocrite.

Anyway,  please feel free to cast your vote in the following poll which will remain open for a week:

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…

thumbnail_image