Independence

When I lost the vision in my right eye I spent a lot of time in bed feeling sorry for myself.

‘What’s the point in getting up? I’ve got nothing to do, I can’t see anything, I can’t read, I can’t go out or do anything.’

One of the first steps I needed to take was to get some independence back.

I dragged myself out of bed and as we had some shopping to do, called a friend for a lift to the Hyperdome. While we were walking around the shops I felt unsafe as there were a lot of people around and I couldn’t see them until they were fairly close to me and this didn’t give me a lot of time to get out of the way. I was in this fog where suddenly someone would appear in front of me.

At my next appointment with Dr Kate I told her how unsafe I felt and she suggested getting a walking stick and either paint it white or put white tape around it and take that out with me because I didn’t look like I was in trouble when walking and people wouldn’t be aware when they’re walking towards me that I couldn’t see them. She said that with a white stick, people would notice the white stick and hopefully get out of my way and make it a bit easier.

It was then time to try and exert my independence again and I decided to go out by myself and catch a bus home from the doctors. My sister was horrified. ‘How can you put yourself in danger?’ I wasn’t going to be in danger. I am a bit of a control freak and I had lost control over most of my life but it was time to start taking it back. My excursion would be organised with military precision. Phone calls were made to the bus and taxi companies and I was set. I knew exactly what bus stop to be at, what bus to catch and where it would take me. Whatever roads I needed to cross had traffic light crossings or an underpass so that would be ok. When the first bus arrived I checked with the driver to make sure it was the right one. One problem I had not thought of was that the driver did not realise I could not see very well and took off before I was seated. While I was walking down the aisle looking for a seat I nearly fell into the laps of other passengers. When I sat down I cried. Who was I kidding that I could go on these outings by myself? Changing buses at the interchange was a bit challenging as there were a lot of people rushing around and I had to be very alert to ensure I caught the right bus to get me home. It was all a bit scary but I did it and arrived home safely. I was exhausted and my eyes were tired from straining to see. I overdid it a little!

This outing was organised as most of my life had been. My poor eyesight had required me to be organised. Going to the beach before I had my transplants was tricky. I always had to go with friends or family, make sure I knew exactly where my towel was and where my friends were in the water. If I lost sight of them I was in trouble. I would try to sit near a bin, a lifeguard area or a bright beach umbrella, a spot that was easy to find again. I grew up in Perth and Scarborough Beach was the place to go. Unfortunately for me it was often quite rough and if I was dumped and came out of the water by myself I was in a bit of trouble until my friends found me.

Catching buses was always a challenge. I had to wave down lots of buses I didn’t want, as even with my ‘coke bottle glasses’, it was still hard to see numbers on buses, particularly if it was dark. If I stayed at a friend’s house or in a hotel I had to check the hot water taps in the bathroom before I hopped in the shower, simple things like knowing which bottle was shampoo or conditioner and always knowing where my glasses were when I went to bed! Simple things most people don’t even think about. Maybe this is why I became the control freak my family tell me I am.

Simple tasks around the house were getting difficult and we needed ideas to make them easier. Peter and I visited Vision Australia and we were able to purchase some aids to help and my favourite was the water buzzer. Making coffee in my stainless steel plunger was dangerous as I couldn’t see the water filling the plunger and would put my face really close. This was a little bit dangerous and only a matter of time before I would splash myself with boiling water. The buzzer sits inside and buzzes when the water level is right. I loved it. We found lots of ideas about using contrasting colours in the kitchen and for when I was out and about.

I didn’t have a choice, I had to call in help and that didn’t sit easily with me. I did start calling on friends and neighbours to drive me. They were more than happy to help and we ended up having some great days out. I went to Floriade a couple of times as both the girls were performing in their school bands. I was able to move comfortably around the flowerbeds and to the stage area where the girls were performing. It was a bit disconcerting having lots of people walking around and I walked slowly and kept my eyes on the ground so that I could deal with the changes in the terrain and watch where I was walking. It was difficult in the shop area because it was darker in there. The performances were fabulous and Emily was in the front row on the stage so I knew where she was. Caitlin was at the back of the stage for her performance and I couldn’t see her.

I certainly suffered for my days out. My eyes were very sore after straining to help me see and the result of going out and trying to see meant I suffered headaches for a couple of days afterwards. Then it was off to bed for a couple of days to wallow in self-pity. There weren’t too many of those days but I needed to be aware of the strain my eyes were under.