Monthly Archives

January 2016

“Are you happy?” by Wendy Hind

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My father was sitting there, Millennium Eve, with far too many brandy shots, asking me this question.  He died a few years ago.  To this day I have never understood why he found my answer so hard to comprehend.

I’m Wendy.  I am 4 ft 9” with Cerebral Palsy.  I have two hearing aids, walk not very far with two sticks.  So far, so descriptive.  My disability does not define my happiness.  I am a high achiever, like my dear papa. Four cats, four guinea pigs.  I drive and I work full time.  I have a house and a husband.

“Am I happy?” It reverberates around my brain. Why wouldn’t I be happy?  My answer, at the time, through an alcohol induced haze, was that I saw my disability as a gift. I also said, at the time, that if there was a “cure” I wouldn’t take it.  I’m 46 now.  That’s a lot of years for me to figure stuff out.

Being disabled has meant an awful lot of being sat on the side-lines, and an awful lot of deep frustration.  I wanted to be a solicitor and got as far as Law Society Finals. I didn’t like the lifestyle or expectations. I fell into Housing Management and there, more or less, I have stayed.  But I digress.

Happiness – hell of a big word that one.  Not joining in, meant a lot of people watching.  I’m quite intuitive, I’m a natural “carer” and like being there for others.  My personality, I think, creates happiness. That comes from the hard work which goes in; to not giving up each day, learning from the dating disasters, generating a positive outlook against the failures at work, when people have just been downright patronising. It has also meant I can be abrasive, I’m impatient with others. I sometimes just think,  what is the point of constantly explaining myself… society is too busy to listen.

Yes, overall, I’m happy. I like being me. I see no need to “change” and my dear Dad, I certainly didn’t want to be anyone else and I don’t want to be cured. I am me. My disability has added bits, just like it has taken away bits. I’m just sorry you never understood the gift you and Mum gave me.  Perhaps that was why you were so lonely.

George from the Undatables

Disabled and Dateable

By | Disability, Lifestyle, Undressing Disability | One Comment

If you were approached in a bar by somebody with a disability how would you feel? If you really think about it can you in all honesty say that you would be 100% comfortable with it; many people admit that they experience a certain level of fear when considering dating a person with a disability, some of this stems from concerns of being more of a carer than a partner whilst others worry about being politically incorrect and offending their potential date. When you examine these worries though, many are often unfounded.

Political Correctness
Being politically correct is something many people feel extremely tense about. These worries are often heightened when talking to a person with a disability. However language evolves all the time and what is deemed to be politically correct today when talking about disability may not be correct in a years’ time. One way to sweep any concerns under the rug is by listening to how the other person talks, and the language that they use when talking about their disability. When I talk to potential dates I’m often not politically correct, nor am I offensive. I use causal jokey language rather than medical jargon.

Will I be a Carer?
This is quite a common concern for people considering dating someone with a disability. However fretting about this and turning the question over in your mind is not going to do much good. The best way to get an answer is to voice your concerns. The chances are it won’t be your dates first time having this conversation, so relax. Everyone’s needs vary; many people value the independence they have or employ someone to care for them if they need extra help. They are looking to date you so try not be too worried.

Relax, breath and get to know the person behind the disability.

Watch the Undatables

Finally a Programme which Depicts the Reality of Having a Cochlear Implant by Claire Holland

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Today, I have finally got around to watching the BBC Alba’s documentary The Switch On which follows the story of 5 cochlear implant patients at Crosshouse Hospital in Kilmarnock. Now I am the first to realise that I am a little late writing about this and I am aware that there have been some fantastic blogs already written and which could be found on the Limping Chicken Deaf Blog here. But as usual I would like to stick my two pennyworths in.

Firstly I would like to say how refreshing it was to watch a programme which shows the reality of having a cochlear implant rather than all those viral videos that you see. I am not disputing that for some people their switch on may in fact be almost ‘miraculous’ but this is far from the norm and these videos do not show the long process which happens before the switch on.

I have a cochlear implant myself and to say it has been a success is an understatement but I need to give people a bit of a reality check. Firstly I think it is important to acknowledge that I cannot hear, nor ever will hear, in the same way that a person who has natural hearing can. I struggle in environments with background noise, I still cannot understand people with strong accents, and still cannot watch the television without subtitles. I have to be actively listening in order to be able to hear what people are saying and this active listening does not come naturally to me. I doubt it ever will now as I have had the implant for several years. That said, I do not and never will regret having my implant. I am able to hear better than I ever have and quite honestly life is easier for me now.

The programme shows some of the difficulties of going through the implant process which I can relate to myself. I faced many hurdles during the journey. Initially there are the numerous tests that you have to do to be able to find out if you are a potential candidate. These tests are mentally and emotionally exhausting. Not only is there the need for total concentration during them but also the worry that maybe you might not do well enough and therefore not be able to have an implant. You can literally be on tenterhooks for weeks waiting to find out whether you can go ahead with the operation or not. Then there is the big decision of whether you should actually go ahead or not.

The list of possible side effects and risks are long and need to be weighed up. Then the wait for your operation date and becoming more and more nervous as the days/weeks pass. Next the operation itself and the recovery period afterwards; my tinnitus was horrendous, I had an awful metallic taste in my mouth, and I felt generally awful after the anaesthetic. Finally the anxious wait to find out if your operation has been a success.

You don’t see any of this in the viral videos.

The Switch On shows different experiences at switch on, from total disappointment to one of pure joy and I think that this is important too. It highlights the long rehabilitation period necessary and the commitment that is needed. Driving back and forward to a hospital miles away requires a serious financial and time commitment. It is essential that you do all the exercises and activities that the implant team suggest to you afterwards and that requires commitment too. I personally think the year after I had my implant switched on was the most demanding and tiring year of my life to date. I was continuously exhausted with having to decipher what all the sounds I was hearing were and no one had really warned me about that.

I am aware that I am making having an implant sound like a very negative experience when in fact this wasn’t the case. There were many positives and these did outweigh the negatives. I did cry many tears of joy; the first time I heard my son’s voice in a long time, the first time I heard music again, the very first time that I heard the birds sing, speaking to my Granddad on the telephone, the list is endless. I just feel the need to highlight all the other tears too and am so pleased that The Switch On does.

Why, I hear you ask. There are two main reasons for this. Firstly I strongly believe in informed choice. How can a parent or deaf person make a decision about whether to go ahead with a cochlear implant unless they fully understand the positives and the negatives? Frequently people think of the negative as being the cochlear implant not working, and whilst I agree, there are other negatives if the implant is successful which are not spoken about as often. The second reason I am pleased is that as a cochlear implant wearer myself I live daily with the misconception that I can hear miraculously like a hearing person does. This misconception makes my daily life so much harder. I constantly have to explain that whilst I have an implant I still need someone to look at me and I still use interpreters in some situations for example.

My heart literally sinks when a well-meaning friend tags me in one of those switch on videos on Facebook. I will now be able to respond my recommending that they watch this documentary. My hope is that more documentaries like The Switch On will be made and shared.

Farewell Starman by Holly Williams

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I’m taking a break from my usual disability issues and general soap-boxing, to remember and pay tribute to a remarkable individual who passed away last week, leaving this planet a little less wonderful. David Bowie died of liver cancer on the 9th of January, a few days after his 69th birthday. I heard the news on Monday morning when I turned on TV. Seeing the star’s familiar face, my first thought was that maybe he had a new album out or was touring again. It was only after a few minutes that I heard the tragic news and my reaction was very strange. I didn’t understand. What were they on about. David Bowie dying of cancer. What a ridiculous idea. In that moment of shock, I couldn’t comprehend the notion of something as base, cruel and downright, well, ordinary as cancer ending the existence of such a remarkable creative powerhouse as Bowie.

But I think my disbelief says something deeply profound about just what Bowie achieved in the six decades he graced the music charts.  I found it hard to get my head round him dying because thanks to his originality and creativity I didn’t think of him as a flesh and blood human, but more of an entity, a creature of art and music, so self-crafted that the idea he could die jarred with my perception. There is so much that people of my generation and younger take for granted in popular culture that we can trace back to Bowie and his contemporaries. Today we are so used to the idea of gender fluidity, boys who look like girls, girls who look like boys; of pop stars suddenly completely changing their image that its hard to see it as more than another gimmick. But when Bowie burst onto the scene back in ’69 with his quilted catsuit, flame red hair and mismatched eyes, arm draped suggestively around the shoulders of his bassist as they harmonised in Starman, it was new, it was shocking. It was like something from another world.

Of course, there are many bands and singers who blazed a trail ‘in their day’ only to become associated with that place or time, but Bowie would never be that. Yes he would give the public these iconic images, Ziggy, The Thin White Duke, but almost as soon as they were seized on by his fans he would be on to the new idea with an almost ADHD attention span, always looking for something new to keep his interest. You had the sense that he never did something because he thought it was popular or would sell but simply because he wanted to do it. He was just blessed so that most of what he did do was remarkably good.

And it wasn’t just music. Writing, painting, design. It seemed like he just wanted to get what was in his head out for the world to see anyway he could. Acting too, who else could add that same otherworldly, beautiful uniqueness to films such as The Man Who Fell To Earth or Labyrinth. And he was beautiful, strikingly so. I’m not afraid to admit that one of the reasons I liked him was because like so many women (and men) I found him wildly attractive. Those miscoloured eyes, flawless white skin, uneven smile and slight build seemed to possess a exotic sexuality that was spellbindingly ethereal. Yet watching him in interviews, you get the sense that the man, the human who had been born plain David Jones in Brixton London, was a quiet, reserved, intelligent person, a shy individual prone to deep thought. Maybe that was the true reason for his many alter-egos, a method of displaying to the world how he felt and what he thought without them getting too close.

We very often use the phrase ‘music artist’ to describe someone with the ability to sing, play or compose. But while it is a gift to be blessed with such a talent it doesn’t necessarily make you an artist. True art challenges, it looks to see the world in a different way, it moves people, upsets the status quo and makes us ask questions. It changes the way we think. Bowie was such an artist.

Even nearing the end of his life when most people would have quite justifiably withdrawn from work to inwardly ponder their own tragic condition, Bowie kept writing, kept creating, using his disease as inspiration to create more art. I defy anyone, even those who didn’t like his music, to watch the video for his final single Lazarus, see him lying in a hospital bed, face bandaged, buttons over his eyes singing those haunting lyrics ‘Look at me, I’m in Heaven, I have scars no-one can see’ and not have some kind of reaction. How fitting that his last album was released just two days before his death and how right that he chose to have no funeral, no public monument to the man who lost himself behind his own creation and music. For although David Jones, the unassuming gentleman artist has died, David Bowie, his creation, his music and his iconic image will live on for decades to come.

 

Eulogy

By Holly Williams

From cosmic dust the call has come

They have beamed up Major Tom

Gleaming Glam Rock stella light dims

In cold, inky headlines and disbelieving cyber tweets

My mind, like once more in adolescent stupidity

Struggles to understand, how can a music-painted false-Christ

Really be human flesh, prone to illness

and not some ethereal alien from dimensions unknown?

But then, again

He wasn’t man

He wasn’t woman

He wasn’t human

But a being of his own creation

Sending out the signal through vinyl and modem

to generation after generation of lonely outsiders in poster-pasted bedrooms

You can be what you want to be

What you choose to create of yourself

Time scurries forward and each moment alters

A constant wave never at rest

Casting up changing guises

To mark the public eye with their un-judging commentary

Icons of sound and vision

Now only effigies of the man who was never there

Ziggy’s guitar lays silent

Sanity had returned to the lad

And young Americans mourn the Thin White Duke

I watch with thousands as the owl-winged Goblin King takes one last flight across the fantasy sky

Tears in our eyes as the world falls down

He took to the stage for one final encore

Laid wasting flesh and voice naked and aged before us

His departure merely another incarnation

To leave this planet darker without his alien halo glow

Journeying ever onward

To Suffer or Not To Suffer – That Is The Question by Holly Williams

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As a writer, I know that language is a funny thing, especially when it comes to what people find offensive. You can write what you believe to be a totally inoffensive article but because you pick just one wrong word, a word that in your opinion accurately describes a situation, and people will be up in arms. Recently I wrote a piece about a young man who had finally got a job at Asda after 950 rejections. It was based on a story in the Daily Mirror where he was described as a Cerebral Palsy ‘sufferer’ and this is also the term I used in my article. I sent it to a friend who advised me to change the phrase because it was thought of as patronising by certain disabled people. I altered it because I didn’t want to offend but for me personally I don’t have a problem with being called a Cerebral Palsy sufferer because that’s what I feel I am. I have Cerebral Palsy and throughout my life it has caused me a lot of mental and physical suffering.

I understand that there are a lot of people with disabilities who don’t feel like they suffer because of their impairment. They feel words like this make them appear the victim when they’re not and therefore promotes pity. While I can see where their coming from, I struggle to get myself in the mindset where the limitations of my physical condition don’t make me feel at a disadvantage and this causes me personal anguish. I want to do things for myself and I can’t because my impairment stops me and I find that very hard to live with. I have muscle cramps and postural problems that makes me suffer from physical pain. I suffer from Cerebral Palsy therefore I am a Cerebral Palsy sufferer. That doesn’t make me a victim or someone to be pitied but I am not afraid to state that there are things about my life that I do not like and can’t accept. I call myself a sufferer not because I think my life is of lesser value but because I am aware of my reality.

I sometimes feel a lot of disabled people are afraid to admit there is something wrong with them because by doing so they feel like society will devalue them. We don’t want other people to have an issue or feel sad about our disabilities so we feel like we can’t feel bad about them ourselves. We have to ‘set an example’ to prove we’re ‘just like everyone else’. But for me, and I suspect a lot of other people, we don’t feel like everyone else. The social model of disability is great in some ways, it states that society should give everyone the same opportunities and adaptations should be made to include people with impairments. But even if by some magic force it came totally into being and we viewed disabled people the same as everyone else, would it really change the way some disabled people feel about themselves? Even if the right assistance was provided, problem free, at the end of the day, some people need that assistance while others wouldn’t. I can do anything with help but I want to be able not to need help. No amount of social change will change that feeling within me. It’s my desire, my longing, society didn’t put it there.  

Yes, the word ‘sufferer’ is problematic for many people but by fighting to omit it completely are we in danger of alienating those disabled people who do feel like they’re suffering because of C.P or whatever other disability? By saying ‘I am disabled, but it doesn’t cause me suffering,’ are we putting judgement and pressure on those who aren’t as strong when it comes to dealing with the challenges they face? Just because a proportion of the disabled populous believe that being a ‘sufferer’ makes them a victim in others eyes, does that give them the right to discredit the feelings and experiences of those who feel differently and want their personal difficulties to be recognised this way? Is it really fair to say ‘I don’t feel I suffer from my disability so you can’t either. You’re letting the side down.’ Isn’t that just making a character judgement on another people’s experience of the world?
Words alter their affect and meaning all the time. What was once okay is in later times sometimes considered offensive. Controversial words can also sometimes be reclaimed by groups that they were once used to insult. Very few white people today would feel okay with using the ‘N’ word and yet certain black comics and rap stars use it frequently. Do they have to answer to an older generation for whom it held a different, more oppressive meaning or does their skin colour veto the offence it might cause others? They say it’s wrong to label other people but do others have the right to tell us what we label ourselves.

Those who claim that language such as ‘sufferer’ promotes pity need to remember that sympathy for someone you view as less fortunate isn’t in itself a bad thing. It is a basic component of civilised human society. Yes the reaction may be misguided at times but the intent is pure. For every self- assured disabled person who doesn’t want to be allowed to the front of the queue because they find it insulting there will be another, like me, who will see it as an act of kindness. Does objecting to small gestures and misused words really further the cause of equality or does it make us seem petty and militant?

Maybe the papers and I were wrong to describe the person in the story as a ‘Cerebral Palsy sufferer’ but it isn’t because the phrase is wrong. It’s because we can’t be sure of the challenge and experiences of this individuals life and how he views his impairment. He might not consider himself a sufferer but then again he might. And if it is the latter, as it is for me, does anyone truly have have the right to tell him otherwise because it differs from the way others see themselves?

The Unwatchables by Holly Williams

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There is a particular branch of media known as ‘car-crash entertainment’. Films and TV programmes that for one reason or another cause their audience a masochistic mental torture and yet still have the ability to keep them watching. In fact, one of my favourite podcast is totally dedicated to analyzing and celebrating movies that are eye-wateringly terrible. But also in this category, I would place the Channel 4 series The Undatables which returned to our screens this Monday. It’s series 5 for the show that follows individuals with a variety of conditions as they search for love and romance and while I have watched it from day 1, I can’t honestly say that I enjoy it, mainly because I find the subject matter and the way it’s handled difficult to take.

Now, don’t get me wrong, I believe that everyone, disabled or not has the right to look for love if they feel that having a partner will make their life complete. I also think that if they choose to do that process on national TV that is also entirely up to them. And in theory, any programme that is showing that disabled people have the same feelings and desires as anyone else has got to be a positive and enlightening thing. But watching The Undateables leaves me, personally, feeling that the whole attitude of the programme-makers towards the subject is one of cutesy-whimsy and wry amusement. Yes, they do show that people with problems can find love like everyone else, but it’s always with a look of light-hearted superiority and voyeuristic curiosity that reminds me strangely of the old PG Tips chimp adverts or those antiqueillustrations of black people in western dress. A tone that seems to smile at the audience and say ‘Look, they’re talking about what they look for in a partner, they’re getting dressed and made up for a date. They look so much like you and me, isn’t it adorable?’ The whole programme is dubbed with that God-awful comic ‘plink-a-plonk’ music that sounds ripped straight from a CBeebies show, underscoring and prompting that the audience should find the daters interactions and social awkwardness amusing. But anyone who has been on a blind date (and even those like me who haven’t) knows that a first date is an awkward nerve-wracking environment so why do we need it pointed out? What are we meant to do? ‘Look, the conversation is drying up and he doesn’t know what to do because he has learning difficulties! LAUGH, DAMN YOU, LAUGH AT THE FUNNY CHILD-MAN. It’s okay because we’ve just shown you he’s normal because he likes football and fancies Holly Willowby, so it’s not demeaning.’

Yes, first date nerves are something pretty universal that might be seen as a leveller between the disabled people on the show and the audience at home and like I say everyone deserves a chance at love no matter what challenges they have. But I can’t help but have an issue with the types of disability shown on the show and question the motivation behind why the programme-makers choose who they do. They do, after all, want to make as entertaining and ‘upbeat’ show as possible. But you have to question, with this motive in mind, is having your first meeting with your prospective boy/girlfriend filmed for broadcast really the best way for them to find a relationship that lasts after the cameras stop rolling. Looking over the lonely hearts who have appeared on the show in the past, it seems like a good majority of them have learning difficulties or autistic spectrum problems. Many of these people struggle with understanding and dealing with the delicate norms of social interaction at the best of times, let alone doing so under the watchful gaze of a camera and film crew. Yet their struggles make good TV so who cares if being watched has an effect on how they deal with  forming a relationship that will last longer than the episode? Those with Tourette’s Syndrome are another favourite group for this programme and it’s easy to see  why. Here we have people whose impairment doesn’t really affect their physical ability to go out on a date but whose ticks make more amusing viewing. I’m not saying that Tourette’s isn’t an exhausting and debilitating condition to live with. It must be a constant frustration to never know what is going to come out of your mouth without warning. But people with Tourette’s can go out and spend time with a prospective partner without the need of an assistant or chaperone which makes things a lot easier, especially for this programme. Their condition can be reduced to an amused quirk, their funniest ticks selected and edited for affect.   Yes conditions on The Undateables are varied, but you aren’t likely to see a severely physically impaired person who needs 24 hour care looking for love because it’s a great deal harder to show a romantic date between two people and the additional third wheel of a carer. It’s one of the reasons I choose not to date but even for those in my position who do, the extra addition of cameraman, sound guy and director would turn the event into less of a date more of a group activity. A pretty overwhelming prospect for the other person.

And while we’re on the subject of the able-bodied people on the show, one has to consider their motivation and what the whole experience is like for them. There are cynics (aka my mother) who suggest that  the whole reason they agree to go one these dates is to show what nice people they are to consider being in a relationship with a disabled person or just have  the opportunity of being on TV. But even if that isn’t the case, even if they initially saw that person’s profile and thought they were someone they would like to get to know, there’s always the chance that they might feel differently by the end of the date. It could be they couldn’t accept the other person’s disability, it could be that spark of attraction just wasn’t there. The problem is, knowing that their date was going to be viewed by thousands, would anyone want to be seen as admitting that they wouldn’t want to go out with a disabled person again? That’s what would be going through my mind if I was on this show. Even if the person I met seemed to really like me, I would have a little voice in the back of my head reminding me that our date was going to be broadcast and that the other person might just be trying to make sure that they didn’t look bad on TV.

It’s not that I don’t believe that some of the relationships that come out of the show aren’t genuine. I’m happy for those couples who have found love in this particular way. It’s just that I’m overly aware that being a TV show, the whole way that these relationships begin is contrived and orchestrated. A friend of mine attends a disco for people with learning difficulties and at one event, there was a researcher from Channel 4 going round looking for people to be on the show, asking them if they would like a boy/girlfriend. To me, that seems to reduce love to a commodity, looking to prompt people’s desires and feelings just to get content for the show. I don’t have a problem with companies like Stars In The Sky who exist to help people find partners because that is their soul purpose but when such companies align with Channel 4 they are consenting to another agenda, an agenda of allowing their clients search for love to be viewed as entertainment.

I’m in no doubt that all the people who appear on The Undateables go into the process with open eyes and, if needed, the right support to deal with appearing on television. Perhaps the problem lays with my personal notions of privacy and relationships. We live in a world where people can and do share details of their private lives with a wider public via Facebook and similar sites. This is something I find very odd as I stick to the old-fashioned notion of a romance should develop between two people and has nothing to do with anyone else. This doesn’t seem to be the case with many others and that’s their choice. This week also saw Channel 4 launch a new series of First Dates, The Undateables for the able-bodied if you like, proving that many people are happy to look for love in the spotlight of the media. But perhaps if this is the new face of 21st century love we should combine these shows together instead of isolating the concept of disabled people dating as a novelt

In the beginning there was darkness… by Gary Mazin

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Then..

There was light.
My crusty eyes opened slowly, and I quickly closed them again as the room was bathed in a bright white glow that bounced off the mirror and sent my head spinning.
I slowly cracked open one eye to see the sun pouring directly in through the window, giving the room a pure white heavenly glow, the white walls reflecting the sunlight in a pattern that bounced off the ceiling and onto my bed.
I slowly opened both eyes and adjusted my eyesight sideways to look at the digital alarm clock a few feet away. The digits were crystal clear and read 8:48. Still too early. It’s Saturday. Nothing to get up for.
I turned over and saw the book I was reading resting on the dresser in the corner of my room. The Vampire Lestat by Anne Rice. The text was crystal clear, as if it was just inches away, not across the room.

..
I shouldn’t be able to read that text. I looked around the room and realised that I could see the label on my shirt that was crumpled on the floor on top of my trousers, 40 degree white wash only. Clinique M Lotion, Vaseline Deodorant. I shouldn’t be able to see all of this.
I can see.
HOLY MOTHER FECKIN CHRIST ON A BIKE
I can bloody see.
What the actual holy shit.
I can still see. I can actually bastard see.

I scratched around for my glasses, and put them on and everything became blurry. I took them off and the world came to life again.

I jumped up from the bed and ran into the bathroom, I looked at myself in the mirror, my features were sharply staring back at me. My hair was all ruffled and I had a massive black head on my nose. But I didn’t care, I could see it so clearly.

Feverishly I splashed water on my face, convinced I was in some dream. I stared back in the mirror and looked around. AMAZING. I could still see EVERYTHING.

Running downstairs whooping with joy I nearly bumped into my Mum in the kitchen.
“Mum, you’ll never guess what”, I screamed.
“Morning, you got in late last night. Drunk again I presume due to the noise you made just getting up the stairs.”
“Yeah, sorry. Anyway. Mum I don’t know what’s happened, but I can see this morning.”
“What?”
“Yes, I know. I can see. Everything is crystal clear. Do you think my eyes are OK?”
“Errr, I don’t think that’s possible Gary. Are you sure you can see?”
“Yes, I’m positive Mum, have a look.”

My Mum approached me and looked at my eyes, her own eyes searching for some answer. Her face showing complex emotions of worry, sadness and a glimmer of hope.

“They’re really red and bloodshot, Gary. How much did you drink last night?”
“A lot, but that’s beside the point. They’re a bit itchy though”

I strode purposefully to the downstairs toilet and stared at myself in the mirror. My eyes were red-rimmed and bloodshot, I looked like the vampire Lestat in human form. My face was white and puffy. I leaned in closer.

OH. SHIT. BOLLOCKS.

“Gary, language” Mum called from the kitchen.

I reached into my eye with my finger and felt a very dry crustyness. My finger hit something plastic and then there was a loud schlurpick sound as my contact lens was ripped from my iris. It felt like my eye socket had fallen out along with my contact and I had to quickly check the mirror to see that my eye was still where it should be. In my head.

I pulled the other contact lens out with another loud sucking sound that felt like my intestines were being sucked out through my eyeball. A sudden wave of nauseousness hit me and I turned to the toilet and retched the contents of my alcohol and kebab filled belly.

A few minutes later I stood up washed my face and looked in the mirror.

The world was blurry again. My eyes were still broken.

“Are you OK Gary?” Mum called out from the kitchen with a hint of concern in her voice, clearly having heard me return the contents of last nights exploits into our cistern.

“Yeah, I’m fine Mum. I slept with my contacts in. My eyes feel horrible and dry. My eyes are still buggered I’m never drinking again. Port and Brandy is lethal.”

For those delightful few minutes, I thought I was normal. I believed that by some miracle I had awoken to discover that my eyes were fixed. Not just my short-sightedness but my tunnel vision too. I convinced myself that I was normal.

I was 21, still a long way from coming to terms with what Ushers Syndrome was or how RP (Retinitis Pigmentosa) was truly irreversible. I had convinced myself many times that I’d be OK. And on this morning, I thought that my eyes had been fixed.

After that I never slept with my contact lenses in again and despite the hangover and copious amounts of bile that ejected themselves forcefully from my growling stomach, I always remembered fondly those few precious minutes when I felt normal. My eyes were fixed, I was like everyone else.

You might be thinking that was just a silly embellished story about how a young drunk Gary slept with his contact lenses in, big deal. But you have to understand that I was a very different person then.

It was about that time that I started drinking and smoking quite heavily. I  remember having conversations with some of my friends, all of whom hated smoking and drank a lot less than me.
“Smoking isn’t good for you. You’re killing yourself”
“You’re just going to send yourself to an early grave drinking and smoking all the time”

My extremely mature response was “Well, I’ll be deaf and blind soon so what’s the point of worrying if smoking kills me?”.

That was my standard response to most things at that time, “Well I’ll probably be blind by the time I’m 30 anyway, so who cares”.

Fortunately I had a very good bunch of friends and family, and me going off the rails didn’t include any Class A drugs or rehab. I suspect that most people didn’t think I was going off the rails and rebelling at all, and just thought I was being a typical 20 something man who hadn’t fully grown up yet.

I was 15 when I was first diagnosed with RP. I remember the visit to Moorfields very clearly. This was in the mid 80s and you have to understand that not only was RP and Ushers a very newly discovered disease, there were many aspects that weren’t fully understood. Technology was also not fully utilised within the medical profession and they were using some concepts that had been used for decades.

My visit to Moorfields reminded me of One Flew Over the Cuckoos Nest. I was Jack Nicholson and was prodded, poked, pushed, pulled, tweaked, prodded again and more and more people in white coats were coming in looking at my eyes, mumbling and then walking away.

I still have memories of lying back in some dentist chair, with electrodes on my face, and some wires actually sitting on my eyeballs. A light was periodically flashing brightly on the wall and every time I blinked my eyes and body received a small electric shock. Apparently this ‘test’ was to discover how my eyes reacted to bright bursts of light. Not very well as it turned out. Who knew?

One of the doctors sat me and my family down in an ironic twist a very dark room, and point blank explained that I had RP, a hereditary disease that causes permanent sight loss. The particular nuances of what followed were lost on me. The reason for this is I distinctly remember the doctor saying:
“Really, you shouldn’t worry too much about it Gary. It shouldn’t affect your life for now. Unless of course you want to be an Airline pilot when you grow up. What do you want to be?”
“An Airline pilot” I murmured.
“Oh. Well perhaps you should think of other ways you could work in that type of field. Hmmmm?”

His bedside manner wasn’t the best. And so as a 15 year old boy I knew my eyes were broken. Over subsequent visits over the coming years I found out that RP was just the tip of the iceberg of my disease and it was actually called Ushers Syndrome, which affects hearing and sight loss.

Since then, I’ve visited Moorfields every 6 months or so. There have been times when there have been a few years between visits. “What’s the point. They can’t fix my eyes, so there’s little point in getting electrodes put on my eyeballs again.” I often convinced myself.

But over time I’ve accepted my fate, and realised that it’s important for me to check-in to Moorfields. It’s a learning hospital, and all my tests that are conducted are logged and looked at by very clever people. Every year we hear about a lot of money and time being spent on finding a cure and possible treatment. Which might be getting closer and closer. It’s been posted in the news that a woman in the UK has just had a retina chip, or bionic eye as the news likes to sexy up the quite technical complexity of the operation. It’s clear that there are some clear signs of positive progress for helping people that have this horrible disease.

So probably not for me, but for future generations it will be good if they could wake up one day and have their miracle realised for real, every single day for the rest of their lives.

 

Had I Known Then What I know Now by Simone Mazin

By | Disability, Lifestyle | 2 Comments

I am a happily married Essex girl with two gorgeous children. I am 44 years old. I spend most of my time trying (and often failing) to juggle work, family life and housework. I drive too fast, am always on a diet and am known amongst my friends as being a bit of a scatter brain.

And I am my husband’s carer.

Oh sorry. Did I forget to mention? My husband is blind (or Severely Sight Impaired to use the proper term) and the proud owner of a Black Labrador Guidedog called Gibson.

To give you a bit of background information, my husband was diagnosed with Usher Syndrome – a rare genetic disorder – when he was 14 years old. The main symptoms of Ushers are hearing loss and Retinitis Pigmentosa (RP) – a disease of the eye that leads to loss of vision and blindness.

I think my husband would agree, the journey from that initial diagnosis and where we are today has been far from easy.  Being a teenager and being told you have a degenerative disease that means you will eventually lose your sight and hearing can be devastating. People tend to deal with this kind of news in different ways. In my husband’s case, he mostly chose denial. For years he was able to fool an unsuspecting public that he was able-sighted and most definitely NOT DISABLED. Working and socialising in London, he managed to live a fairly ordinary life; only occasionally walking into bollards, knocking over passers-by and getting run over*.

But RP is a mean, fucking bitch and as predicted, his sight started to deteriorate and walking through Liverpool Street unaided during his daily commute was no longer feasible. My husband registered as being SSI, I become his carer and five years ago, Gibson came into our lives.

Being your partner’s carer is an interesting role and something that’s taken me a number of years to perfect. I’ve had to learn stuff. And fast. There’s a whole host of facts about my husband’s condition on the internet but it’s often ‘worst case scenario’ kind of stuff. And as much as I personally would welcome some easy to read information, I’m not sure if there’s a gap in the market for a Retinitis Pigmentosa For Dummies reference book

Back in the good old days, I would often get my role as carer wrong. Grabbing my husband and yanking him back when I could see he was about to walk into something or someone was most definitely wrong. But not reacting quickly enough and allowing him to be ‘attacked’ by some low hanging branches was also not exactly helpful. And those that know my husband would agree – he can be a stubborn bastard. Particularly in the early days when he was desperately trying to convince the world he was A Normal.

I have to be honest, when I was single and compiling my wishlist of attributes I wanted for my future husband, having a disability wasn’t exactly high up. Admittedly, whilst living with somebody who has a disability can have some benefits (our blue badge has helped us get some wicked parking spots), it can also be a massive pain in the arse.

Don’t get me wrong. I love my husband – almost to the moon and back! However, it is exhausting having to carry out a mental risk assessment every time you leave the house, tedious to explain to acquaintances that the reason my husband ‘blanked’ them was because he didn’t see them, not because he is rude and genuinely upsetting when my husband walks into something and hurts himself.

The nature of my husband’s condition means there is a high probability he will lose his sight completely in a few years. This is the point where I happily bury my head in the sand. As deep as it will go. If I allow myself to think about this fact for too long and the consequences for my husband and my children, I wouldn’t be able to cope.

So we live our lives, taking each day as it comes and try to enjoy each and every moment. To quote a quote I once found on Pinterest: “Every moment we spend worrying about tomorrow is a moment we lose from enjoying today.” Pretentious? Yes. True? Absolutely.

So what would I have done if I had known then what I know now?

I honestly wouldn’t have changed a thing.

 

 

* Getting run over was a very rare occurrence thankfully. But it did happen. On more than one occasion.

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