My story

Sallie Humphreys

I’m sure you’ve gathered now from reading my previous blogs that the majority or my ‘positive’ disability-related experiences only occur after a stream of ‘negative’ occurrences. This may sound pessimistic but it’s the truth.

However, following a weekend visit to London with my family, I received numerous positive responses to my disability, so this blog is a pretty happy one!

I always get a little bit anxious on the train when the ticket checks are going on, mainly because it requires me to present my Disabled Railcard. I do have a system though, and this involved passing the railcard over using my left hand so that the staff member checking the tickets can see that I obviously have a condition affecting my arms. Anyone who knows me well will realise that this is very out of character; I rely on my right arm (Big Arm) for virtually everything I do, and give my left arm limited responsibility, as he’s so weak and awkward! This normally seems to do the trick though, and I’ve never been questioned. However, on Friday we were in the middle of a horrific train journey – including the train having broken down for AGES before we managed to even get out of Staffordshire. As you can imagine, my back was killing and I was having ridiculous spasms down my left side, and I just felt pretty rubbish. I felt so horrendous that I didn’t even bother with my whole routine of using Little Arm to pass over my railcard, I didn’t think I should have to physically prove my disability whilst feeling so terrible. I was mega surprised when the guy doing the ticket checking just accepted it, no questions or weird looks – but, I guess I shouldn’t be that shocked, considering that everyone with a Disabled Railcard has had to send various pieces of paperwork off for consideration before a railcard is granted necessary.

The next day, my family decided they wanted to visit Kew Gardens. It was an amazingly sunny day so I was happy to be outside topping up my tan. I saw online that they do disabled tickets with the free carer ticket so, naturally I knew I should be entitled to this – I also had my disability benefits letter with me, so I was prepared for questions. However, after checking the letter I had in my bag, I realised it showed my entitlement to ESA (Employment and Support Allowance) rather than PIP (Personal Independence Payment). I got pretty stressed out, thinking that without solid, black and white proof my disability wouldn’t be acknowledged – especially because I do not require use of a wheelchair. However, I asked for the disabled ticket along with the free of charge carer ticket for my sister, and the assistant just processed it, no questions asked AT ALL. I was stunned, and got a little bit of a buzz for having my condition acknowledged just like that – my scars were hidden and I wasn’t even wearing my splints!

That same night we were going to the theatre to see a musical for my mum’s belated birthday present – I’d booked tickets months ago, and the box office generously provided half price, accessible tickets for my mum, dad, sister and myself (I swear it’s normally the accessible rate just for one guest?!) so that was already one massive positive. After our trip to Kew Gardens (combined with the rubbish train journey the day before) my back was pretty damn terrible. I’d had a lie down and taken a load of painkillers, but nothing was easing it – my upper back pain had spread into my chest, which made breathing and moving insanely painful, and my lower back felt like it had been kicked inwards, causing stomach pain too. I’d specifically taken a new black and white dress to wear, but my pain was so severe I couldn’t even wear it, so my mum helped me change into a loose-fitting dress. I felt so unwell that I could hardly eat, and sat at the restaurant picking miserably at a salad, when all I really wanted to do was go to bed or see my chiropractor urgently! Anyway, I took some more painkillers, did a few gentle back exercises and forced myself to go – I couldn’t have missed my mum’s birthday treat, and I’d specifically booked disabled tickets, so it would look a bit suspicious if the disabled person in question just hadn’t turned up!

The theatre experience was such a positive one in terms of disability awareness, that it really helped me to enjoy the evening. Luckily, my painkillers had started to kick in, and a glass of wine really helped to relax my dodgy joints and muscles. I was just scoffing some Maltesers (the salad was crap, after all) when a mega friendly employee from the theatre came over to find me, as he knew I’d booked accessible tickets. He informed me of the help they provide and that I was able to use the disabled toilets to save me from queuing for the other toilets. He was literally so friendly and again, no questions were asked – he just respected that I had booked accessible tickets, so obviously I have a disability, even if it isn’t that visibly obvious. What an ace service.

Obviously, I was still in pain and found the weekend really exhausting – but just to have members of the public be so accepting and understanding helps more than you can imagine. I appreciate it must be difficult for them though – how do they know that someone is genuinely disabled, or whether they’re the minority that pretend to have a disability so that they can scam the system? My sister and I came up with an idea that everyone in receipt of DLA or PIP should be registered on an online system and provided with a code which could be used when booking disabled or accessible tickets. This would ensure that no-one has to be expected to disclose details of their condition, because a code would be used to confirm their eligibility for disabled tickets. It’s also much more straightforward and ensures that the right people are receiving such tickets. Is there such a thing?!

I’m off to London again tomorrow for hospital treatment, let’s hope it’s all just as positive!

 h

‘Hi, I’m Sallie and I have Holt-Oram Syndrome. It affects my upper limbs, back and heart. I don’t have any thumbs, but I do have nine fingers. I’m also missing a few bones and muscles here and there, and use my right arm for pretty much everything. Oh and I have a pacemaker, but my heart’s okay now!’

      My condition is so rare that over the years I have perfected this introductory statement in order to provide inquisitive people with a brief explanation as to why I am the way I am. It no longer surprises me if a doctor starts tapping ‘Holt-Oram Syndrome’ into Google, or begins flicking through a medical book in the hope of finding a definition. Aside from my condition, I am an illustrator and work part-time for Enhance the UK – I also illustrated Enhance the UK’s first ever children’s book which is due to be published later on this year.

Holt-Oram Syndrome (HOS) is estimated to affect 1 in 100,000 individuals and is caused by a mutation of the TBX5 gene. The condition affects the upper limbs and in roughly 75% of cases the heart is also affected. The heart problems linked to HOS generally cause a defect in the muscular wall. Atrial septal defect (ASD), vetricular septal defect (VSD) and cardiac conduction disease are amongst the most common heart problems experienced by people with HOS. To date, I have been diagnosed with two out of three of the above heart problems; my first surgery being when I was two years old, with my most recent occurring a month before I started university at the age of 19. I am due to have my pacemaker changed soon – I don’t know when yet, but it’ll definitely be within the next two years and this terrifies me. For the standard person, pacemaker surgery is a fairly straightforward procedure, but for me it caused two years of chest pain – simply because my anatomy is that weird and there just wasn’t room for a strange metal object to be implanted underneath my wonky ribcage.

Strange as it may sound, my unusual hands have had names since I was tiny. My left is Little Hand whilst my Right is called Big Hand. My left arm is more severely affected; I don’t have a ball and socket joint in my shoulder, the ulna and radius bones are fused and out of my four fingers only two work because the others are stuck in a bent position. I also have lymphoedema in my left arm, basically because my lymph nodes are too tiny to drain fluid. My right arm is less affected – but ironically, causes me much more pain. I have five fingers but no thumb and I’m missing bones in my wrist. My shoulder and collarbone are also a bit unusual and I rely heavily on my right arm to work hard as my left side is pretty weak. Naturally, this imbalance causes tons of pain – and I have lived in constant musculoskeletal pain since I was a child. I’m an absolute expert with prescription drugs and I take a whole cocktail of these daily – my friends constantly joke about this – I’m thrilled I can be a source of amusement but I do wish the medication helped a little bit more.

Luckily, I have a wonderful chiropractor and a lovely physiotherapist, and they’re both very familiar with how living in pain can make me switch between being highly stubborn one minute, and an emotional pity party the next. Heat is also an absolute lifesaver, and during my time at university I constantly relied on my friends to do hot water bottles for me. I’m also massively fussy with beds, my boyfriend and mates joke that I am the Princess and the Pea but it’s totally true – I can’t book a hotel until I can be assured that they have soft, memory foam mattresses!

Before having read this you may also look at photos of me, or meet me in person and question what’s even wrong – especially because I pride myself in ensuring that I don’t look any different to other 25 year olds (except for the fact that I have a baby face). This is why I am passionate about working for Enhance the UK – I am here to represent those with disabilities that may be a little less visibly obvious. Even though my disability isn’t strictly ‘invisible’, I wear clothes that hide my scars and don’t accentuate my disliked body parts. This is a habit I grew up with – as a child I never thought twice about wearing my wrist splints at school (especially because my best pal and I had drawn cool characters and scribbled bubble writing all over them to make me look particularly sassy…). However, this all changed when I started getting severely bullied and called the most imaginative names by a group of nasty girls at school. Bullying totally knocked my confidence, and from then on I over-compensated for my disability by making sure I always had the nicest, coolest clothes that would hide my splints. I still feel the same now, and wouldn’t dream of going out wearing splints or any other disability accessories, even if I require them. This stubborn attitude has backfired though – and these are issues that I will elaborate on in my upcoming articles for Enhance the UK.   Aside from dressing in a certain way, it’s second nature for me to act ‘fine’, and I guess this is kind of lying to everyone, and myself? But, living in pain is just…hard? It’s draining, tiring and frustrating but, on the plus side, it has equipped me with an incredibly steadfast and resilient personality.

So, this is just a sort-of introduction, there’s tons to build on – and so many ‘hidden disability’ tales that I can’t wait to share.

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?

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

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.