Glen Sheader

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Glen Sheader

Length of time you have lived with LHON

8 years


I used to enjoy nights out on a regular basis, and mainly lived for the weekend.  I didn't have much direction in life, was always just looking to have a laugh and a good night out. 

During the Christmas period of 2005, I started to notice a change in my eye sight.  I noticed that I had to move closer to the TV to read any writing on the screen, I noticed that I couldn’t keep up when playing on a fast paced computer game on my playstation and I was really embarrassed at Christmas when I was handed cards and I couldn’t read them.  I had to take my cards upstairs and put them right up to my nose, in private, to make out the writing.  This all happened in the space of around 2 weeks.  I was scared, the speed of the deterioration in my vision was shocking, but ridiculously, I didn’t do anything about it.  I was actually worried about being told that I would need glasses.  I didn’t like the idea of wearing glasses at the age of 22.  

I was working in the motor trade as a parts salesman at the time.  I then went back to work after the Christmas, and was horrified when I walked onto the front counter to serve a customer and I couldn’t make anything out on the computer screen to place the customers order.  I went to my supervisor and told him my situation; he pointed at a van in the distance and asked me to read what the writing said on the side, and I couldn’t read lettering that was about a a foot in height.  Several of my colleagues were laughing, including myself, however inside, my heart sank, as I realised something was drastically wrong.  So I quickly booked myself an appointment at an opticians during my lunch break.  

I walked into the opticians office sat in the chair, I heard him flick a switch and he asked me to read from the top of the chart.  I sensed the shock in him, when I told him that I could not see any chart.  With various other tests carried out and plenty of scratches of his head, the optician made me an urgent appointment at the eye clinic.  

The next day, and the following 3 months, were filled with various tests.  Many eye conditions were ruled out, and I became very frustrated continuously being told what I haven’t got.  

One of the worst times of my life was being sent for further tests to a hospital in Manchester.  I felt like I was going crazy, as I started to become depressed, I couldn’t not sleep in hospital, hospital staff kept forgetting that I was visually impaired, so had to explain myself almost everyday and I had absolutely nothing to do but sit on my bed and feel sorry for myself.  On top of this I was stuck with an IV in my arm, I gave blood tests everyday, I was on steroids everyday, I had an MRI scan and a lumbar puncture.  

Then in my home town of Bolton, I was asked to come into the eye unit to see Miss Kath Smyth, the head of the eye unit, for an appointment.  I was so nervous.  I was thinking: I hope they give me some medication to sort this out, or worst case, they might tell me that I need an operation.  So I was stunned when they told me that there was nothing that they could do.  I was told all about Lebers Hereditary Optic Neuropathy and how I will have to live like this from now on.   

I felt like at the age of 22, my life was over.  

How am I going to live like this?

How am I going to get out and about on my own?

How do I continue working?

How do I explain this complicated condition to everyone?

The following year was horrible, as I couldn’t work, I struggled to travel independently, I lost communication with friends, people around me didn’t know what to say to me, everyday I seemed to discover something else that I couldn’t do. I spent more and more time alone in my bedroom and only really left the house to get alcohol from the shop at the end of the street.   

I only started to snap out of this dark place when I was offered an opportunity to go away to a specialist college to learn how to access a computer with my vision loss.  I completed pretty much everything on offer, as I was extremely keen to get as much from the experience as possible and improve my chances of getting back into work.  Also, at the college, meeting other visually impaired people had a positive impact on my life.  It was this time of my life when I started to realise that I do have a disability, my life is now very different, but I can adapt and achieve things.  Similarly, it was important meeting other disabled people, as I learnt that I am not on my own and there is nothing stopping me from living a full independent life.   

When I returned from this college, 6 months later, I felt comfortable enough to seek help.  I started to use a white cane to travel and I discussed my feelings with my GP and was referred for counselling.  

Towards the end of 2007 I had adapted and had some strategies to cope with my sight impairment.  I also, set myself a target of retraining and learning new skills to start a fresh career.  During this new chapter of my life, I met my wife-to-be and focused on moving forward and rebuilding my life.  Over a 4 year period I took on several volunteering roles and gained various qualifications.   

The year 2012 was then a huge milestone for me, as I qualified as a Therapeutic Counsellor, I got married and gained employment.   

I work for a local organisation that offers advice and support to blind and partially sighted people, I offer counselling to a wide range of clients and my wife and I are just buying our first home together.   

I do feel that LHON turned my life upside down and triggered a painful raw emotional time.  It is by far the hardest thing that I have had to deal with.  However, being stripped bare as a person and having to reinvent myself, turned out to be a blessing in disguise.  I class myself as an agnostic person; I believe that things happen for a reason, even though it is often hard to see this at times.  Due to LHON I feel that I am able to deal with what life throws at me.  The path that I have been forced to take in life has been difficult, with challenging barriers, but it has been very rewarding.   

I would say to anyone diagnosed with LHON, or any friends, family or carers; make sure to take any help that is offered by professionals.  Further more, try your best to keep talking about your current situation; the emotional and psychological challenge can be huge.  There are plenty of organisations out there that can offer excellent advice and support, the first step is communicating with them.  If you are reading this on the LHON website, then you have obviously taken that initial step