Friday, 29 June 2018

Yosemite Sam

I thought it’d be nice to interject a few funny antidots. I did say in my last post I didn’t exactly live the life of a normal person with a disability. Here’s an example. This one takes us to the firing range up in Kilbride. The following is unofficial and never happened if anyone asks.

If you recall back in the mid 1990’s I was in the Air Corps. A year after I’d initially lost my sight the lads thought it would be great craic to bring me on annual range practice. They were going anyway so why not bring me. Now you must remember this is the military, so they don’t just let anyone on the range, you must pass a test every year. Off we went to the depot for our annual war week – fitness test, rifle drills, we did other stuff too, but I can’t remember what. Anyways for a day or two you go through all your rifle drills, stripe and assembly and safety drills, then you are tested to see if you are competent enough and safe enough to go on the range. The NCO’s were trying to figure out how I was going to get through all this. The Steyr is not that complicated and the safety checks were second nature anyway. However, some of the little parts were a bit problematic when it came to the stripping and assembly, but I got through it. Sure, in theory you’re meant to be able to do all this blind folded. Forgive the pun.

Well I past the tests much to the amusement of everyone. But the depot NCO’s were like ‘hmm ok, but we know you can’t see through the optical sight’. ‘I can do it, trust me’ I said. Of course, my right eye is a lot worse and that’s the eye you look down the sight. I said, ‘I can use my left eye’, eh no that wasn’t going to work. The rifle isn’t geared for left sighted people although you can get them. Mind you it would have made no difference I can’t imagine my left eye being able to see the target either. And trying to use your peripheral vision doesn’t exactly work either on the range.

Anyway, off we went. For most of the day on the ranges I was put filling magazines under the armourer Sergeant (As this never happened I won’t be putting down his name). I didn’t mind. He was sound, and I felt useful. For those who don’t know what happens on the range, it’s not like here’s a hundred rounds off you go. There are several distances you have to fire from – 100m, 200m, 300m. Then there’s a whole sequence of practices such as ten rounds at 200m. It goes on and on. For me and the Sergeant it was a day of fifty magazines with five rounds, another fifty with twenty, another fifty with twelve. (I can’t remember exactly the sequences or what went into what). While some of the guys were on the range, others were in the butts putting up and down the targets, indicating where the person hit and then putting a patch on the hole. Then everyone swoops around.

After a while I was like ‘um excuse me when’s my turn. I did pass the test’. There was a bit of a discussion amongst the NCO’s. ‘Come on so’. Onto the range I went. But just to make sure I at least fired in the right direction one of the NCO’s stood over me. Needless to say, I could not see the targets at 300m or 200m. But at closer distances I could make out the mountain behind the range and I knew from being there before the white line and the mucky colour was the targets and the earth behind them. At 100m though I could kind of make out the general direction of the targets but not through the sight, which was frustrating. The lads in the butts (the sheltered area underneath where the targets go up and down) were warned I was firing and to take cover. I’m not kidding. They told me after laughing that there was muck flying everywhere in the butts. They said I hit everything but the targets and there were ricochets all over the place. Funny as hell. Every now and then the NCO who was standing over me would tip the rifle up or down. Just to be clear I was pointing it straight and there is a big mountain behind the Kilbride ranges, and no, no sheep were harmed in this exercise. 

Then the NCO’s from the Apprentice School were like ‘Wes come on with us, we have a job for you’. Up to the pistol range we went. “I’ve already filled these magazines so what crappy job am I going to get landed with” I thought. ‘Here you go Wes’ and they handed me a BAP. Pistols are great craic. You get to stand at 50 - 25m if I remember correctly. All rounds hit the target, I swear. I was however standing about 20m from it. The silhouette man that was the target I think got away scot free. The silhouette man beside my target went down big time. I’m not sure who got more fun out of this me or the Apprentice School NCO’s. If you thought some of the guys in my class were wired, you should have met some of our instructors. So that was my impression of Yosemite Sam. Not the first or the last time we got up to antics like this. Remember this never happened if anyone asks. Next time I might tell you about the time the lads gave me driving lessons around Baldonnel. Or there was that other time the drivers from Transport gave me lesson in the Nissan patrol when we were in Ballymullen Barracks in Kerry. I took it too far, apparently starting up the Civil Defence fire engine was not a good idea.

There’s plenty more funny tales to come.

Wednesday, 11 April 2018

I'm back

Hi everyone. My apologies for not writing anything for a long time now. No excuses but I have been very busy. I still can’t get over the response to my first few entries - I even featured in the newspaper, thanks to Fiona Alston. I’ve been under pressure for ages to start up the blog again, but I just kept putting it aside. Recently though I was asked by two people on separate occasions how do you cope with losing your sight and visual impairment? They were wondering as someone in both of their families had started to lose their sight; totally different conditions to mine. And in another case a person with mental health problems asked me to start up again too. So, I said to myself if any of my experiences could help someone well then it would be worth continuing with the blog.

Where to begin to answer their question. Well, everyone handles a challenge in their life completely differently to the next person. Being presented with a life changing condition whereby there will be limited or no chance of reversal for the rest of your life is not exactly a time when you want to throw a huge party. Then again, a party sometimes is not the worst idea. It’s always good to have a bit of craic. Career, family, relationships, daily life are all going to change.  ‘It’s not the end of the world’ I explained. It sounds patronizing and a cliché and it’s easy for me to say as I am well used to it by now; but seriously it’s not the end of the world. You’ll just find yourself on a completely different path.

There’s no point in sugar coating it. It is going to suck big time. And some disabilities suck a lot more than others. For instance, there’s a lot worse visual conditions than mine. Not sure I would have been able to handle losing my sight completely or my hearing for that matter. Imagine not being able to listen to music. I suppose the bonuses for someone who is hard of hearing is they can still see. At the very beginning though you have to learn things all over again, Obviously I’m talking about someone in my case who hasn’t had the condition from birth. I’ll talk about all this again in another chapter but things like reading mail, trying to figure out what things are in the supermarket, or trying to figure out where you are when you fly into a strange airport. And do you know how hard it is to jay walk when you can’t see, especially now with these silent hybrid cars.

Over the years I’ve met people who have lost their sight completely and others who have lost their hearing  completely and I ask them how do they cope. They tell you the same thing I’m telling you; they have adapted and gone down a new path in life. It is funny when you have three young men, two can’t see well and one can’t hear, and the topic of conversation is girls. We’re jealous of the guy who can’t hear because he can see girls and catch their eye. We might have disabilities, but we are guys after all.  Now I digress.

Let’s get back to basics. No matter what type of disability you end up with don’t break the daily routine, and if there is something you want to do, just do it no matter how hard. There is no doubt the daily simple things that we all take for granted will be a new challenge and have to be learned all over again when a disability kicks in, but you have to remember the daily chores are the easy challenges and they have to remain as such. You cannot let them become a trial, they must remain daily life, routine and easy. It’s OK to ask for help by the way. Believe it or not the latter is probably one of the hardest challenges you’ll encounter. Nowadays the majority of people don’t mind helping you out - we’ll talk about that again. So, to keep things in perspective and the daily routine remains a non-challenge, every now and then throw in something that is a real challenge. As in hardcore, one that will scare the bejebus out of you.

I recently joined a hiking group. I love the hills, but since I left my old job I wasn’t getting out enough. The guys in the group are great. A few weeks back we went to Zipit over in Tibradden Wood. This is all about climbing in the trees, obstacles in the trees, and buzzing down ziplines. Really cool stuff. For safety you are given a harness and you have to clip on to wire ropes so if you slip you don’t end up on the forest floor. It had been a long time since I’d done any form of abseiling or rock-climbing and I'll admit I was somewhat nervous. Everyone else can look up and see the various courses and up there they can make out the runs ahead, but not me.  I looked at the carabiner with curiosity and tried to figure out how I was going to make out the wire rope or the obstacles. I explained my case to the instructor from Zipit. He said, ‘what’s the problem, we’ve had complete blind people complete the red course (which is the highest and hardest run)’. “I like this guy” I thought to myself.  If a person who can’t see at all can do it then there’s no reason I can’t. He was right. What was the problem -  so up we went. The guys, or I should say three ladies, from my group helped me out. What can I say, perks of having a disability. It’s hard to explain some of the obstacles. For example, one was a wooden bridge. However, the rungs were not linked together, so every time you stood on one it would move. And that was an easy one. And yes, it scared the bejebus out of me, but it was great craic and some adrenaline buzz, especially the long ziplines. And it was rather amusing to see ‘able’ bodied people struggling and crumbling under the pressure of being up so high.

The point is that when you are faced with a disability at the beginning everything is a challenge, even jay walking. When you start doing things that ‘able’ bodied people find difficult, or even go beyond that, the things that seemed a challenge at the beginning are now made to look trivial.

More stories to follow shortly.

Oh yeah go to Zipit and scare the bejebus out of yourself.

Sunday, 9 October 2016

Seeing the humour in a blurry world

Seeing the humour in a blurry world

It has been a few weeks since I had the chance to write the next chapter of my blog. I have been very busy getting the next issue of Ireland’s Military Story out and planning the one after that again. I thought a bit of humour would be nice to lighten things up a bit. As I explained in earlier chapters, at the time my vision started to go I was a member of the Irish Air Corps. To be precise, I was in training with the 58th Apprentice Class in Baldonnel. Now military humour is a lot different than that in civilian life. Banter, slagging and pranks are pretty much the order of the day, or at least that’s the way it was back in the mid 1990’s. At times the slagging can go to an entirely different level. So, when I reported back to the lads and told them I was starting to lose my sight, with the possibility of going completely blind, their natural reaction was to take the total piss. Militaries around the world are all the same. Everything is turned into a joke or slag. When you’re not being slagged you know there is something wrong.

(As some of the class are still serving no names will be used in this chapter)

The jokes and slags started within seconds of the lad’s finding out in Baldonnel. ‘You could get a cute dog. Think of the girls (I think back then ‘birds’ was the phrase used) you could pull’, or ‘Get a cane and you will get away with whacking the legs off everyone’ or ‘let’s get him blind drunk’. That was day one.

Let me introduce you to the 58th Apprentice Class. Our class was made up of 29 guys from all over the country. There were originally 30 but one had gone off to be a pilot in the real world by this time. In some way it was like living with a bunch of mad geniuses. In theory we were being trained to fix aircraft, however, these were guys who wanted to take things apart; as in everything literally got taken apart.

It’s like this. One evening you may be in your room reading a book.  Suddenly a load BANG and all the lights go out. A small bit of commotion, laughter and someone saying ‘I’m ok’. For the craic the lads had been playing with a fuse box or live electric wires. Not an uncommon occurrence.

Then there was the time when guys started to buy their first cars. Naturally these new babies were cared for as if they were their first born. And of course the cars had to be taken apart. How else would you be able to clean behind the dashboard? It was not uncommon to open your door to what sounded like thunder and discover four apprentices rolling a set of alloyed wheels down the corridor, walk into a bedroom that looked more like an engine shop, or an apprentice taking a shower with his car engine in order to clean it. This was all very much the norm. Believe it or not no aircraft have ever been harmed in the making of an apprentice.

The majority of daily slagging and pranks is censored, but a few little stories I’m sure can be allowed. The common day to day stuff was just like any work place environment. Guys got slagged over where they were from or if they had red hair for example. You can fill in the blanks. Then there was always the day to day military slagging. For example if an army soldier was in camp (someone who didn’t’ go through the Air Corps) they were called Rock Apes or Dump Rocks. The term actually comes from the British Military stationed on Gibraltar. Heh it works. And if members of the Naval Service were in camp, an apprentice, I’ve no idea who, would shout out in a Popeye voice, ‘Well blow me down’, and finish with the chuckle Popeye did.

Pranks and messing was just routine. Headdress going missing or name tags being switched was standard. Something that most people would not be expecting is to come back to find their room completely stripped. All that would be remaining was the sockets on the wall. While that apprentice had been in the gym or out on leave for the evening six or seven guys would have gone in (broke in) and taken the whole room apart and reassembled the room somewhere else right down to a pencil at angle on the desk. When I mean stripped I mean carpet tiles, wardrobe, presses (If things had been screwed to the wall, well they no longer were). The room could be reassembled anywhere from one of the landings in another part of the apprentice hostel or the green in front of the officer’s mess. When you saw this done and complete it was actually very impressive. In the middle of the officer’s green a perfect room was laid out on carpet tiles, the bed as it had been, posters and mirrors hanging from trees. Thankfully the officers always saw the funny side. We even got commissioned to play a few pranks on some cadets. But that’s another story.

Another favourite was the shuffling of cars. As I said earlier, by year two, guys had started to buy their own cars. Everyone was given a parking space. In the morning though we’d come down to find someone’s car sandwiched in between two other cars and right up against a wall or in the middle of eight cars, or the wheels gone, or wheels switched onto another car. Now when I mean sandwiched I mean door to door or bumper to bumper. As it turns out most cars can be lifted and moved by six Air Corps apprentices. It sometimes took more than a day to find the owners of the other vehicles as they may have been on guard duty or the like.

For some reason when it came to inspection everything was always back to the way it was meant to be. Amazing really. There was always those few seconds when it looked like the sergeant or officer was going to touch the wet paint or lift up a ceiling tile. It’s a good thing there were no phones or facebook back then.

Now no one was safe with this bunch. Everyone got it. One year we were on Summer Camp and were getting a tour of caves in Kerry. The poor tour guide at the end was subjected to one of our class getting down on his knee and singing the Righteous Brothers - Lost That Loving Feeling from Top Gun. So imagine one apprentice on his knee signing ‘Baby, baby, I get down on my knees for you’ to a pretty tour guide, with 50 others all doing backing vocals. Needless to say she went somewhat red.  That was the kind of mischief this bunch got up to. And that was without alcohol taken.

When my sight started going bad and I was in and out of hospital you knew you were in good bands when everyone started taking the piss out of you. On one trip to the Curragh military hospital the wards were full of guys getting medicals for overseas. In a sea of green I kind of stood out being the only one in a blue uniform. Outnumbered 100 to 1 the Air Corps lost the slagging match that day. ‘Here to get your wings clipped’, ‘Thunderbirds are Go’ was thrown at me from all corners of the ward. If smart phones and facebook existed back then, you’d have seen 100 soldiers getting selfies taken wearing my blue Air Corps forage cap. (The Air Corps had only the year before switched from a green uniform to a blue one. So it was still very much a novelty to the rest of the Army.)

‘Where you heading?’ I asked. ‘Lebanon for six months,’ was the reply, ‘What about you?’ they asked, ‘Heading to Bricin’s next,’ I said. ‘Good God he’ll never be seen again,’ they all laughed. It was all in jest of course.  (St. Bricin’s Hospital was the other military hospital in Dublin. The joke was if you went in there with a cold you’d come out with your leg in a cast).

Back in Baldonnel the sympathy lasted around an hour. Once they discovered I couldn’t see clearly beyond the length of my hand the slagging started. Out of the blue something would be thrown at you and naturally you’d look around to see where it came from and by whom. I could make out a blue blur and someone giggling but that was about it. They’d be gone before you’d know it. From around camp you’d get a random shout ‘Hey Wes, can you see me’. When I’d answer with their name they realised I knew who they were by the sound of their voice. Guys then started changing their accent. It came to a point where the culprits were anyone in blue.

On more than one occasion the lads thought it would be hilarious if they thought me how to drive. I had never learned how to drive. In the evening around the aerodrome we’d head off. Not on the runway just in case you were wondering. There’s a road beside the runway and the guys did ensure me that is what we were on. The car was always packed as the lads got a great kick out of directing me around camp. Like Raleigh driving. In 200m turn right. Turn now now now!

It wasn’t just the lads who got involved in this kind of craic. The NCO’s and officers from our unit all joined in. And sure why not if you can’t laugh. At the end of third year we were in Ballymullen Barracks, Tralee, Co. Kerry, for Summer Camp. In this case the drivers thought it would be great craic to teach me to drive the Nissan Patrol. Somewhat different than driving a car. Not that I could do that well either. I’d only had a few Raleigh lessons around Baldonnel. One or two sharp turns and I nearly overturned the jeep. Ooops. For some reason the guys kept directing me into the middle of a football match. Me in a jeep in the middle of a pitch didn’t stop them from playing though. They all just laughed and kicked the ball over the jeep. The next day we got caught starting up the Civil Defence Green Goddess fire engine. We weren’t going to leave camp I swear.

There were a few other things the lad’s thought were funny too, but those stories are heavily censored. Put it to you this way, bringing a blind man to a strip club was a waste of their money, not mine. ‘No guys you really don’t have to describe what’s going on thanks’. Naked ladies dancing really does not have the same impact when it is being described to you in a manly Cork or Offaly accent. You can fill in the descriptions of the performances yourself. Funny times though.

At the end of the apprenticeship there is a graduation ceremony. Unfortunately for me I didn’t’ get to graduate with them. But to make me feel part of the day and one of them, I was presented with a very special certificate that evening – the Stevie Wonder Award. I suppose when you think of it not every blind person gets one of these, so I’ve a feeling it is a very unique achievement. I think it should be a national holiday.

The citation reads as follows:

‘We appreciate you vision of our organisation. In recognition of your valuable views and insights during your apprenticeship training we gladly present this certificate of award.’

The award was kindly sponsored by Specsavers.

Now I’m sure people who work in HR are reading this going ‘what the.’, and might be thinking it’s all very insensitive. But you have to remember the military world is a different place all together. It was all a bit of craic. In many ways we’ve gone too PC these days but that’s a matter of opinion. What’s important here is the immediate group around me all carried on as normal. For me it was a good environment to be in when life presented me with one of its many challenges. My experience with the civilian world at the time was not the same. And it’s not to say it was all fun and games or this type of craic would work for everyone. But for me they were good times and you have to see the humour in hard times too. Laughing is a great healer.

Friday, 12 August 2016

Celebrity Status

To catch you all up I’d just been diagnosed with Leber Hereditary Optic Neuropathy (LHON) mutation 11778. For about eight weeks I was on permanent rotation in and out of military hospitals and the Eye and Ear. Apart from the fact I’d now got blurry vision and chronic fatigue, I really had no idea what it all meant. Apart from getting an introduction to the Irish Health Service and the Army Medical Corps, I still as of yet, had not been given as much as a paracetamol. But to make me feel better doctors kept telling me ‘you have a very rare condition’. Yeahie the best news I’ve ever been give. Not sure if, ‘hi I’ve a very rare condition,’ would work as a chat up line.

On my last visit to the Eye and Ear I’d been told I’d be completely blind within the next month. So now what? The prospect of not being able to see a thing within the next month wasn’t exactly all that appealing. Reporting back to Commandant Collins, in the Medical Aid Post in Baldonnel, I informed him of the prognosis of being totally blind within a month. ‘It was ok,’ I explained, ‘we could get an appointment with a neurologist in six weeks’. As you can imagine neither Commandant Collins or Sister Bomfield knew what to say. If they were finding it hard to process all the information, you can only imagine how numb my brain was.

At the same time my father was doing work in a Highfield Hospital in Santry, Dublin. There he spoke to his friend Dr. Dennis and explained the situation. Within minutes Dr. Denis was on the phone to his neurologist friend and neurologist colleague Dr. Staunton. The next day we met the consultant in his private rooms in Beaumont Hospital in Dublin.  I do recall him asking every question you could think of; diet, exercise, what treatment the Eye and Ear had given me, family history, when did my sight start going? The latter was an interesting one. When I really thought about it there had been little signs (my right eye to be exact) going back around four months. Things like trying to focus reading a book. My left eye had obviously compensated for the right eye. As he explained he had no cure but something had to be done to try and stop the deterioration. The next morning, I was in Beaumont Hospital. Staunton had taken me in as his private patient, publicly. When we arrived to check in this did not go down well with the lady in admissions, who wanted us to go on the public waiting list. Dr. Staunton intervened, as time was against us.

Well I went from not been given a paracetamol, to being drip fed a cocktail of god knows what drugs. The consultant explained he was pumping me full of steroids and other medication I can’t remember the names of, in an attempt to stop the deterioration. Every test that the Eye and Ear had done, I had to go through again. The eye tests are a pain. You have to stick you head in a head clamp. Dye is put in your eyes. Then you’re asked not to blink as a doctor looks in your eye with a magnifying device with a light that literally ‘blinds’ you. Another MRI, and more blood tests like they are going out of fashion. I could’ve made a fortune if I was selling it.

Having a ‘rare condition’ had its perks. I was like a celebrity. I had a room to myself with an ensuite and a TV – for all the good it did. (The TV was no more than a 12” screen and mounted on a stand in the top corner of the room. To me it was no more than a radio.) I wasn’t allowed walk anywhere. A porter wheeled me around in a wheelchair with me giving the royal wave to passers-by. The medical profession I found were very serious indeed and didn’t’ seem to appreciate a patient taking the piss.

Celebrity status afforded me every day a rotation of neurologists coming to look in my eyes to see what LHON 11778 looked like. When you think about, they got to see what LHON looks like, I still have no idea.
One trip took me to a meeting room full of white jacketed specialists and student doctors. The contrast to a military hospital was amusing. I was in a sea of white rather than a sea of green. I was 18 and naturally I was having fun getting sympathy of lady student doctors and nurses. After a while though, the novelty of signing autographs wore off.  ‘Can I look in your eyes,’ from pretty student doctors just doesn’t have the same appeal after day seven. There’s only so much poking an eyeball can take.

Thinking of the day I had the lumbar puncture (spinal tap) done still makes me shiver. For those who have not had the pleasure it is a procedure in which fluid is taken from the spine in the lower back through a hollow needle, usually done for diagnostic purposes.
It all happened in seconds, but it felt like hours. First the anaesthetic. Then the hollow needle pierces the skin in the lower back. The feel of cold metal etching the bone of the spine was like someone scrapping their fingers on a chalkboard. The doctor then punches through with a load crack. ‘Good god the pain’. Then came the relentless migraine. It lasted for around ten days. Every second, every minute, every hour, constant pounding resulted in days of no sleep. Believe me when I tell you, I broke. There were tears and lots of them. This, along with the cocktail of steroids and god knows what else, had left me extremely weak. I do recall a kind nurse on night shift keeping me company on those sleepless nights.

My mother remembers me saying to her that I shouldn’t be in hospital, as there were really sick people in the ward and I wasn’t sick. There really was. A few patients had brain injuries, Motor Neurone Disease, chronic pains; a whole list of conditions I’d never heard of before. You got to know them all. ‘What test you have done today?’ Was usually how every conversation started.

The common room at the time was also a smoking room. Now I’m not sure what it’s like now, but then in the hospital you could only open a window by a crack. They had stoppers on them to prevent patients jumping out. So the common room was literally a smoking room. You could smell it down the ward. As you got closer you were met by seeping smoke coming through the cracks of the door. Once stepping inside, visibility was almost zero. An older man, who was almost immobile and permanent fixture in the room, had one cigarette in his mouth and another cigarette in the ash tray. The idea was so he could just lean over and with his old cigarette, light the other one. It went on like this all day.

Everyday friends and family came in to see me. I demanded food and lots of it. Whatever effect the steroids were having on my eyes I couldn’t tell, but I wanted to eat everything around me. For some reason oranges were king. The guys from my class in the Air Corps were given passes to come in every day. It was not long before the locks on the windows were off and the devise requiring 50p for an hours TV was dismantled. The matron was not impressed. ‘Nothing to see here,’ she was told.

So after nearly two weeks I was to be discharged. The consultant had done all he could do. Whatever cocktail he had given me seemed to have stabilised the deterioration. And it has remained so ever since. I went into the hospital though lean and fit. I left looking like the Michelin Man, zero energy, and covered all over from the top of my head to my little toes in acne. It was gross. So much for celebrity status.

One thing I did learn from this experience was if I was on my own and had to rely on the public system I’d be completely blind now. So the lesson is if you are going to get sick make sure you have the best family and friends or else have one hell of an insurance policy.

Friday, 29 July 2016

Introducing Theodor Karl Gustav von Leber

Well needless to say I had absolutely no idea what it meant to have LHON. Or even less what it meant to have mutation 11778. I still had in the back of my head that at some stage they'd fix everything.

On my last trip to the Eye and Ear my mother was with me. We were there to meet with one of these experts to find out exactly with LHON is, what it does, long term prognosis, that kinda thing. 'Blah Blah Blah... Blah Blah Blah,' the doctor explained in his doctor voice. Do they get issued with this voice in med school?
'What the **** is this guy on about,' I thought to myself, 'Is he even speaking English'. I could tell my mam wasn't fairing any better either. 'Yes of course I know what  mitochondrion are,' I said, 'sure doesn't everyone'.

The doctor went on in his doctor voice explaining about the discoverer of Leber's Hereditary Optic Neuropathy (LHON), one Theodor Karl Gustav von Leber. 'That's right,' I said, ' Sure didn't Gay Byrne interview him last year on the Late Late Show'. Leber himself died in 1917.

The doctor went on: 'The nature of the causative mutation was first identified in 1988 by Wallace et al. who discovered the guanine (G) to adenosine (A) mutation at nucleotide position 11778 in nine families. This mutation converts a highly conserved arginine to histidine at codon 340 in the NADH dehydrogenase subunit 4 of complex I of the mitochondrial respiratory chain. The other two mutations known to cause this condition were identified in 1991 (G to A point mutation at nucleotide position 3460) and 1992 (thymidine (T) to cytosine (C) mutation at nucleotide 14484)'. (I pulled this off the net by the way. Sure all the experts did was read it from an old book anyway).

'Yes of course it's so obvious,' I said, I really had no idea what the hell this guy was on about. Only a few weeks ago I'd been struggling with Bernoulli's theorem in gas turbine class, but this was on a whole different level. 'Is there not like a layman's guide to going blind,' I thought. They really have no idea how to relate to patients.

There was light at the end of the tunnel however. All you had to do was see the light. In very rare cases young males do get their sight back. So I was rare to get this LHON but if I was even rarer again I might get my sight back. 'Wait a minute,' I questioned, 'I thought you said the cells in the optic nerve were dead, so how come in rare cases the sight comes back'. See I was listening after all.
'Well um um eh. We don't really know,' he said. 'Ok so now what?' I asked.
'Well at this rate of loss your sight could be completely gone within a month,' I was told. 'Are you sure I can't take a pill or something - for Gods sake.?' Nope that was it.

After seven weeks with people poking around in my eyeballs that was it? Really! Not even as much as a paracetamol in that whole length of time..
Nothing they could do and I would  have no sight within the next month. Needless to say I was numb all over. You can only imagine what my mother was feeling. You need to see a neurologist as soon as possible they said - hopefully we will be able to get you an appointment in about 6 weeks.  Great - I thought, I'm going blind and they want me to wait 6 weeks to see someone who might be able to help - bloody marvelous.

As apprentices we had to live in, so my mam had to drop me back to Baldonnel that evening. Probably not the place where she wanted to be bringing me after getting the news we had just received. Back in the apprentice hostel the lads were summoned (Mark Elliott and Darren Mahony from what I can remember. The usual culprits in all shenanigans at that time). Out came the hidden bottle of Jack Daniels. I filled them in on what the doctor had told us. After several attempts to recite what the doctor had explained I went for the layman's version: 'optic nerves f**ked, no signal to the brain, sight bad, sight gone in a month'. Then again Jack wasn't helping matters.

'So,' the three of us pondered at the end of the bottle, 'what now'.

The one and only Theodor Karl Gustav von Leber (29 February 1840 – 17 April 1917). For your next table quiz Leber was the first to describe what is now known as Leber's congenital amaurosis in 1869 and Leber's hereditary optic neuropathy in 1871. I'm sure he was a great guy but I still would have preferred if he'd sent me the lotto numbers.

Wednesday, 27 July 2016

Blurry Vision

For a very long time now both my mother and my sister have been encouraging me to start writing a blog. ‘Tell people your story,’ they said. I never felt I’d anything interesting to write. Well my mother pointed out something interesting today. She said ‘it’s been twenty years since your eyesight went’. I never really thought of myself as getting old, but twenty years is a long time. How much has changed.

Back in 1996, I was 18 and in my second year as an apprentice with the Irish Air Corps. I had joined up when I was 16 and with typical teenage brashness I thought I was the shit. And sure why not. All I’d ever wanted to do was serve. After a youth watching Rambo, Top Gun and Hot Shots on an endless loop, I had my whole career planned out. Alas it was not to be. Over a period of a few weeks around March/April 1996 I started messing up a lot; maps upside down, knocking over pints, not being able to read my writing, not saluting officers, that sort of thing. I was also extremely fatigued.

I still remember the first trip to the medical aid post. ‘Put your hand over your right eye and read the chart,’ said Commandant Collins. Not a problem: Z W T 1 3 7 q e y. Easy. ‘Now cover up your left eye and read the chart’. ‘OK’, I said, ‘Can you put the chart back up please’. After that the fun and games started. After several trips to the medical aid post I found myself on rotation in and out of the Eye and Ear. I had every type of blood and eye test done. Along with an MRI I was being tested initially for a brain tumor and diabetes and then a whole rake of other conditions I'd never heard of at the time. They hadn’t a clue what was wrong. All this time the sight in my right eye was getting worse and the sight in my left eye decided to start packing it in. It’s hard to describe. Blurry cloudy vision. Loss of sharpness with your central vision effected the most. If you look at someone straight on from about a meter away, you can make out their hands and legs but they’ve no head.  Beyond a meter people become more like blurry colours moving around.

Although a total pain in the ass and not exactly what I wanted to be doing with my life, these trips to the Eye and Ear were entertaining nonetheless. As nobody knew what was wrong every doctor and med student wanted to poke around my eyeballs. My friends from the Air Corps who would accompany me on these trips would get rather jealous as a young pretty female med student would bend over and look into my eyes with some strange instrument. Then again they had a different view.

On another occasion though I was on my own. So what happens is you’re put in a big waiting room and given a raffle ticket. ‘Take a seat your number will be called’. From what I remember I was the youngest person there. Everyone else seemed to me at that time to be ancient. You have to really picture this scenario. It’s a room full of people with bad sight or bad hearing or because of their age, both.  A voice bellows from the top of the room ‘No. 17’ (it could have been any number I can’t remember). ‘Hmm’ I think to myself, ‘it might have been handy if I’d asked what number my ticket was’. There’s a pause, a bit of shuffling and mumbling. Half the people can’t see their tickets and the other half are asking ‘did someone say something’. ‘No. 17’ the voice from the top of the room bellows again. I get a nudge on the arm from an old lady beside me: ‘Excuse me son what number ticket do I have’. Absolutely comical.

On one of these trips to the Eye and Ear to get poked at again by so called experts who’d no idea what was wrong I was sitting in the waiting room when I heard a nurse talking to an older man. I was positive I recognised his voice. Getting up I went to the other end of the corridor. ‘Uncle Danny,’ I said, ‘Is that you’. (Uncle Danny was my mam’s uncle). ‘It is’, he said, ‘who’s that’. ‘It’s Wes,’ I said, ‘there’s something wrong with my sight. What are you here for?’ ‘My sights going too’, he said with a worried sigh. Not being able to see each other clearly we both could tell we were looking at each other and thinking ‘what the …’ The nurse was thinking the same. She went off to get the doctor.

With the extended family brought in we discover we have a condition called Leber hereditary optic neuropathy (LHON). At the time there was no test in Ireland because it is a genetic condition. A cousin of my grandmother had been clinically diagnosed with mutation 11778. After we told the doctor about LHON I still remember the doctor taking down a book and blowing off the dust. (Or at least that’s my version of the account). ‘Yes that’s what you have. Some of the cells in the optic nerve are dead and the signal isn’t going to the brain. It’s a very rare condition’. Personally I’d have preferred to have won the lotto. 

The only image I could find of me back in the day. This was taken in December 1994, by my room mate Paddy Byrne.