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April 2022

My story starts in the olden days of the late 50s. I was born in 1958 8 weeks premature and weighing in under 2lbs, so there was not much of me then. As was normal practice in that time, I was placed in a humidicrib/oxygen tent with lamps to keep me warm, this is when it all went pear shaped. 

Image of Alek

Although I was there, I cannot confirm this 100%, but my eyes were not covered to protect me from the bright lights and an excess of oxygen contributed to it later being found that cataracts had formed on both eyes. At 18 months old I had cataract removal surgery and Coke bottle glasses were prescribed.  

After this my childhood was as normal as it could be except besides the low vision. When I was around 12 years old, I still remember looking up in the sky one semi-cloudy day and noticed a halo around the sun. I didn’t really take much notice of this and assumed it was seen by others and was just an atmospheric condition, but this was probably the first indication of the presence of glaucoma.

I left school at 16 and I started an apprenticeship as a TV technician, which seemed an odd career choice for someone with a visual impairment, but you have got to realise at that time electronics was not as microscopic as it later became, and I was a very determined person who did not want my disability to stop me pursuing things I liked to do.

I was around 17 years old when I noticed my vision was getting clouded in the right eye, but this was for only short periods and regularly cleared up, so I didn’t make much of it at the time. Then I started suffering from migraines focused above the right eye, especially in bright light. I went for my drivers licence and failed the eye chart test. I brought this to the attention of my eye specialist, who diagnosed high pressure in the right eye, and I was immediately admitted into hospital that day. 

The first operation was performed on my 18th birthday and after it was found I had internal bleeding in the right eye. This brought on an extended stay in hospital and involved minimal head movement and after 6 months and 3 further operations the pressure was stabilised. With the last operation being performed by a young Professor Ian Constable, who later described my right eye as a plumbers nightmare, by then my vision in the right eye was reduced to a small area and basically unusable. Four years rolled on till 1981, when it was found that I had a detached retina in the right eye, 6 month and 4 more operations later and everything was now settled back in place.  

I did not pursue my TV servicing career after I qualified, but still maintained an interest in it as a hobby.  I had a normal adult life and did not let my disability get in my way or be a hinderance. I regularly travelled, although you had to be aware of my limitations.  I worked for the Australian Public service for 15 years. Then I remember going to work as a 40 year old thinking as I looked at all these people in their 60s all doing this same routine every day, wake up, get on the bus or train go to work and the same going home. I didn't want to do that until I was 65, and thought there must be something better, by this time I was classed as legally blind with less than 10% vision.  

When the opportunity arose I was offered a redundancy, I jumped at it and although my payout was not much it still allowed me to pay my mortgage and be debt free, so I could work for myself with no other obligations. Before someone reacts to my observation, don’t get me wrong, people need to work and have family responsibilities and mortgages etc., so they have to do this routine, but my situation was different and I could do this and to be honest, it’s the best thing I ever did. My well-being was more important and I pursued my hobby as a small online business and this kept me happy for many years.  
About 12 years ago I began noticing vertical lines, such as football goal posts etc. had a wave in them. Macular degeneration was diagnosed and I was one of the lucky ones. After six eye injections and only a small loss of vision near the main focal point, everything stabilised and I have had no other issues appear. 
All my immediate family get regularly tested for glaucoma, we are not aware of any other historical cases. My parents were from eastern Europe, and two generations back there is not much recorded. My grandmother supposedly had gone blind and there was no real indication of what may have caused it, only speculation.
The administering of eye drops is second nature for me. I moved away from Pilocarpine about 20 years ago to Timolol with my specialist having concern of long term side effects.
As is always mentioned glaucoma is the silent cause of blindness, and even though I regularly went to my specialist it was not diagnosed, probably something that was not thought to be an issue for a teenager.
Hindsight and "could’ve, would’ve, should’ve" are common things people say to me, but you just take the cards you are dealt and go with it.
The advent of adaptive technology over the last 5-10 years has made my life more comfortable.  Electronic magnification tools, either stand alone or hand held are very welcome, embrace it where you can, and don’t be afraid to ask for advice or take it if offered.

...All my immediate family get regularly tested for glaucoma, we are not aware of any other historical cases...