Losing Vision

For years, Peter and the girls had been going camping at the Majors Creek Music Festival. When they came home from the first trip he told me how beautiful the area was. A couple of years later they invited me to join them. My response was ‘ok, but I’m not camping!’ My home for the weekend was a lovely B&B in Braidwood. Majors Creek was gorgeous and I understood why Peter loved it so much. I still wasn’t going to camp there. Each night I drove back to my beautiful Victorian bedroom, had a shower and was able to go to the toilet in the middle of the night without having to get out of the tent, take a torch and find my way to the portaloo miles away from the cow paddock Peter and the girls were camping in.

He came home from the festival a few years later and said there was some land for sale and maybe we should consider buying a block? We visited Majors Creek a number of times during the next couple of weeks and while driving down one weekend I noticed something pretty dramatic was happening with my eyes. As we were driving the lines on the side of the road were double and the cars coming towards us were a little strange with my eyes seeing one car on top of the other.

At an emergency appointment the next day, the eye specialist told me. ‘Double vision is not a visual problem - you probably have a cyst or a brain tumour. You need to see a neurologist.’

‘Oh my God, I am going to die!’ was my initial response.

This was a very scary time. I had an initial x-ray and an appointment with a neurologist. As nothing showed up on the first x-ray and my double vision was getting worse I was sent to have an MRI scan. One possible diagnosis was MS. We looked into this and told ourselves if this were the case we would figure out how to deal with it. I had two appointments cancelled because of problems with the machine and even though the time frame for all this was only two and a half months it felt like an eternity before my brain was given a clean bill of health and I was told there is probably something wrong with my eyes. By this time the vision in my left eye was really poor.

While I was seeing the neurologist and waiting to have scans, I was also regularly seeing my eye specialist and as I was not able to drive now, this meant catching the bus, which took two hours each way. The diagnosis I was given was that my cornea graft had detached but was settling down again. The surface of my cornea was continually in distress and was sore and I had lots of emergency appointments. The staff at the eye clinic would just slot me in when they heard my voice on the phone. My eye often needed to be padded for a couple of days to help it heal. On one really bad day I caught a taxi home and cried all the way home. The poor taxi driver was very concerned and helpful but I’m sure he was glad to deliver me safely into the care of my neighbours.

Eighteen months later I lost the vision in my ‘good eye’, and life became even more challenging. It was at this time that I started to record a journal of my experiences and emotions. When I started talking into the tape I was surprised by how emotional I was and knew my days of pretending that everything was ok were over.