Ioannis Gkoutzamanis

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Ioannis Gkoutzamanis


Length of time you have lived with LHON

15 years

Before being diagnosed with LHON, I was a student on my Bachelors degree in Biology. My intentions were to be what eventually I become, an environmental Manager/Officer. I was wearing glasses only for the time that I was reading books or when I had to look on the whiteboard for the smaller fonts. Nothing too worrying, just myopsy. On the condition’s onset, at first I thought that this had to do with an increase of myopsy, but things got worse. At that time I was studying in Scotland so I had to come back to Athens, Greece and be checked by doctors there staying with my family. No-one knew what exactly was wrong with me. After many days of continuos blood tests and questions again and again. I got a a letter from the hospital saying there is something wrong with my optic nerve. A general
description at that point!

The time that I actually found out about the condition was when I did DNA tests back in Scotland and I got the results back just after the new year! I was shocked, didn't now what this was even though I was a student in the biology department! The letter clearly said to contact an ophthalmologist and a geneticist doctor.

The worst experience was my first visit after the result. I went with a friend with the letter and spoke with the doctor, an ophthalmologist. The only thing that he said after reading the letter was "I don't
have much to say, oh you are blind and you will stay like that for the rest of your life!" As you can imagine, I was shocked, the whole world was collapsing. Even my friend came to tears. A very bad experience and not a good way to a announce this to a patient, especially when I was so young. I was just 21 years old. There are many phases that someone passes through before he can actually realise this condition. At least these were my phases:

Denial: at first I said “no this can't happen to me”, “This may be a wrong diagnosis”

Angry: being very angry, didn't know with whom I can share this experience and for the other person to realise how I see and what are my options (even now no-one can actually understand how I see no matter how well I can describe it!)

Sad: being in an almost depressed mode and I say almost because as far as I can remember, I was young and a student, this gives you the impression that you are strong and can deal with things plus an ignorance of danger. So I think parties, people around me and youth ignorance played a vital role not to be depressed that much.

Acceptance: well the best stage, for many reasons. With this condition and with no treatment available you don’t have many options. Let's be honest, you have only two! 1. To destroy your self. Yes to damage even further yourself with alcohol, smoke or any other substance just to forget everything and eventually collapse. or 2. Shut up and swim (a Greek saying anyway), which means “you have this and you will probably have this for the rest of your life. “Now what”? What are my options? What do I want to do now?The whole world has changed dramatically. Its either living in it or not being part of it. Sometimes selfishness is a good thing.

Being diagnosed with LHON, at first didn't have many options. I had to go to social worker’s offices and speak with people that sure they were doing their job but I was in phase 2 as I was describing earlier. Didn't want help, I thought this will be temporary. But of course it wasn't, so as time passed by, I had to adapt. I had to find ways to move one, if I wanted to move on! Since in 2001 technology wasn't that advanced as it is now, I got my first magnifier. Wasn't that comfortable. To hold a book
on one hand and a magnifier on the other and read the book like someone is watching very close a diamond with a magnifier!

I wont pretend that life is great, that I forget about my condition.You can't forget something like that even for a second since, by the time you wake up in the morning, you open your eyes, and BOOM, here you go, you still are visually impaired. BUT, things have moved so much to a very very positive direction, I try and challenge myself with new things. Can I do it? Well I don't know, I'll try and if I fail? Well, hell I wont be the first one to fail. If I succeed, then more confidence. And this increases my “appetite” for more and more. Its like being greedy but in a good way.

Starting after my Bachelors degree a question arose. “Can I go to the next level?” “Can I continue my education to a Masters Degree?”. Long story short, I started my MSc in Environmental Management with Waste Management. Very inspiring and helpful without being too “sensitive” was my director of the department. I went first day and I said “Hello I'm Ioannis student of the course, and I am visually impaired almost blind”. She replied “SO what?!!?!?!” This gave me a boost. This was one of the most important things that probably change my attitude towards everything. So What? So Why not? Do it and you will see.

My appetite got even bigger and bigger. I wanted to study Health and Safety at work. So enrolled and got my certificate on occupational health and safety. Yes blind or visually impaired people can do this and can be auditors too!

As technology was going in a good direction that we are in now, the means of me reading and studying got even better! Digital magnifier on the operating system made it easier for me to study books available online or in pdf form. The thing I am saying to everyone is that, I have read so many books after I was affected by this condition that hadn't read while I had my sight!

2007 was the magic year. The year that a multi touch device was announced and released to the public. A new phone, the iPhone. Yes you probably guessed it I am an apple fan and I'm really more than a fan. At first I thought there was no way of me using a multi touch display. How can a blind, or visually impaired person use a multi touch display? At that point I had a phone with a physical keyboard that I knew where the keys were and I had the magnifier for reading texts. A total mess. Since if you didn't have the magnifier or lost it (which is quite possible!) you were useless!!
Started using the iPhone, a great experience even though at first I thought “this isn't for me”.

I got familiar with two major accessibility features that are built in to the system. VoiceOver and Zoom! Things got so great that I thought I had my eyesight on a smartphone! Yes I loved that company for what it did to me and the effect it had on me and others. I switched to Mac that had the same accessibility tools and since then I am sitting for exams to be certified on troubleshooting and coordinating Macs on client and server basis. Brilliant! With such power on a handheld device, or on a desktop computer I wanted more. I wont say I became an expert but I am experimenting on
building websites and mobile applications.

As for my work, I started as an environment consultant at the Greek general Confederation of labour for the Environmental Department and now I am the Director of it! Dealing a lot with legislation as well as policy making Nationwide as well as in a European Level. Very exciting but I know that appetite will hit me again! My work also involves going to Brussels for Working Group meetings or Sustainable Development and Climate Change. Yes I get on a plane, alone. At first I was scared if I miss the flight, if I can't find where my luggage is, if I can't find my gate that I depart from. Many, many questions in my head, that I guess many of you have thought. Things can get better if you aren't that stressed. I learned that you can always ask around. Of course, once again iPhone is a life saviour. Tickets passed on my phone, apps guide me when my flight is and when. And the camera that I use to take pictures and the enlarge them to see what is around me.

I wont say that things are easy. They aren’t. Especially at the onset of the condition. But this is and will be a challenge. A trip to the unknown and the only way to predict something is to actually do a trial and error. For me the most important advice is “Don’t look and search and waste your time every day for a possible treatment or cure. This will make your life more down tempo. You will be stuck on a vicious circle. You will be waiting for a cure, and we don't now when or if this will happen. So what will you do? Staying in the house till this comes up? Years will pass by without you doing anything. Just waiting. You are still alive and try and enjoy it. Yes you can’t drive a car, or read a book without assistance any more. Challenge yourself with things, of course you wont succeed on all. But on the ones you will they will make you proud, confident strong and most important they will erase a bit the anxiety that you will have regarding the time of a future treatment/cure.

I'm now 36 and I wont be 36 years old again so I'm trying to get as much as I can for life. There are problems and there will be problems in the future. But life has a nice taste when you overcome some of your bad moments :D