Memoirs of a Blindman: My Experience with Stargardt's Thirty Years On

By David Wade

It was eighteen months into my marriage when my sight began to deteriorate.

Following eye tests, beginning with optometrist to ophthalmologist over a two-year period, I was finally diagnosed with Stargardt’s, a rare eye condition with no cure or treatment.

Basically, the disease effects fipe detail vision from the back

• Language: English
• Publisher: Publicious Book Publishing
• Release date: Apr 23, 2020
• ISBN: 9780648828310

Book preview

Chapter 1

In the Beginning

Irecall going to a football game with my brother P in the season of 1983. Unfortunately, we were sitting high in the stands on the wing, or eastern side of the ground. Now bear in mind we had been to this ground on many occasions, sitting in the same area before that day. But on this occasion, at quarter time, I couldn’t read the scoreboard regardless of the sunlight or having a few beers as you do. I commented to P of my little dilemma and he jokingly replied, ‘What, are you blind or pissed?’ This was much the case for the remainder of the game. We drove home afterwards not thinking of the incident any more.

A few weeks later P came over to my place to watch the footy on TV, but I couldn’t read the scores displayed on the bottom of the screen. My sight, or lack of, was becoming alarming and I was thinking I’d have to wear glasses of some kind because I was still driving and reading the newspaper, especially the form guide. Incidentally, I forgot to mention I was married with a baby son named L who was approximately two months old, and I was working full-time at the State Electricity Commission as a storeman and forklift driver.

After telling my brother that I couldn’t read the footy scores on the bottom of the TV screen, P dobs me into mum, who arranges an appointment for me with an optometrist. So out of curiosity I proceeded with the appointment which was at a clinic in Dandenong.

The optometrist was very good and thorough in her examination telling me at the end of the tests that my focal and peripheral vision was good and intact, but unfortunately there was something wrong in the back of my eyes. She referred me to an eye specialist, or ophthalmologist, at a different clinic in Dandenong.

I found my first visit with the ophthalmologist rather bizarre as his room was in darkness except for a table lamp on his desk. To my amazement, Dr IS, proceeded to read my referral by leaning across his desk so the letter was directly under the light of his lamp, and I thought I had an eye problem. Dr IS requested that his female assistant do the usual eye examination checks. At the end of these tests the assistant asked me if I was still driving. I replied, ‘Yes I am still driving.’ She fired up and became very cranky saying, ‘Don’t you know that you shouldn’t be driving with your eye condition.’ At the time, my driving ability was good as I could read all road signs and street signs clearly without glasses. The best thing that Dr IS did was to refer me to another specialist, that being Dr IW, a neurologist, who had her medical rooms at the top end of Collins Street, Melbourne.

Dr IW was a very professional specialist who checked my eyes using the usual optical tests over several visits to her clinic. She then referred me to another specialist who was upstairs on the next floor. This was Dr PC who did an eye test with a special camera. The lens was almost touching my eyes which, by the way, were dilated by drops. On the same day following that eye examination with Dr PC, I was sent down to the Chelmer Medical Centre, which at that time was way down St Kilda Road near the corner of Toorak Road.

Prior to those midmorning appointments with Dr IW and Dr PC, I was informed about visiting the Chelmer Centre for a CAT scan, which would be the final test to diagnose my impaired vision as being Stargardt’s.

Well, I was on my own, it was a bright sunny day and I had no sunglasses, making my journey of three blocks from the top end of Collins Street down to Swanston Street very difficult. I had to find a tram that would take me to the Chelmer Centre. You know, that was hard having to shade my eyes which were still dilated from the drops that Dr PC used for the special camera test. I was dodging other pedestrians walking down those blocks to Swanston Street prior to finding a tram. Luckily for me there were conductors on the trams back then, not like today as the funny government of the day got rid of all tram conductors. The conductor assisted me on to the right tram to get me to my destination.

After meeting the doctor who was going to do the CAT scan x-ray test, he injected me with a green dye which would illuminate the blood vessels in the back of my eyes. I was also given more eye drops to further dilate the pupils before sliding into the machine for the total of 33 x-rays. This was all done in the space of about ten to fifteen minutes.

At the end of the procedure the doctor said, ‘Okay, we are all finished, you are free to leave when you are comfortable.’ When I asked him if it would be alright to have a beer he said, ‘Yes certainly, but don’t worry when you go to the toilet and your urine is green. It’s only the green dye flushing out.’

Well that was fantastic news because I was feeling thirsty, hungry and a bit weary after my ordeal that day. I made my way out of the Chelmer Centre and across to a tram stop on St Kilda Road to travel back to the corner of Flinders and Swanston Streets, in the city of Melbourne where Flinders Street Railway Station is, but mainly of course for Young and J’s Pub across the road.

You know, those eye drops took four hours to wear off, so I wasn’t travelling on any train to get home while I was in that condition. I parked myself at the bar of that good pub and had a few beers and a counter lunch, watching through the window as the crowd outside were in the peak hour rush for the trains. All this was through blurred vision, until such time as my eyes were clear from the drops.

Eventually I made my way back home by train and bus to Frankston where my so-called ‘wife’ at the time, with my two-year-old son, fired up saying, ‘Where the hell have you been?’ Nothing about how did the eye test go or how are you, just attack, no compassion.

A few weeks following that big day, I had a new appointment with Dr IW, basically to confirm the diagnosis of the previous examinations, being that I had Stargardt’s disease or some would say Stargardt’s syndrome, because there is no cure, no treatment. Dr IW then suggested she refer me to another specialist,