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.

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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.

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