Sunday 12 December 2010

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.

Monday 6 December 2010

Getting about with low vision



I couldn’t see that light at the end of the tunnel, literally – I couldn’t see very much at all. When I went to the eye specialist and looked at the eye chart, there were days I could make out the top letter of the chart and some days when I could not. When I looked through the pinhole, I could actually see four or five lines on the chart, which was amazing. That meant once Dr Con fixed the corneas my sight should come back. I wasn’t able read any more. I was able to read the headlines in the newspaper and if in good light manage some large print books. Unfortunately, that meant suffering with headaches for a couple of days. I listened to audio books and the radio. Peter and the girls read to me anything they thought would interest me. My family wrote anything I needed in large print, although the large print needed to be very large! I still pretended to do the housework. One of the benefits of not being able to see well was not being able to see the dirt in the house - therefore it did not exist!

When we moved there were new challenges. Going to the supermarket took a long time. I didn’t know where anything was and as it was a small independent supermarket there weren’t a lot of familiar brands on the shelves and of course it was set up very differently to the large Woolworths store I was used to. I had been shopping at the same store for years and knew where everything was so even with my lack of vision I was still able to find the items I needed. Not anymore!

I often walked down to the pub in the village to collect our mail but only on days when it was not windy, because when it was windy I was not able to hear cars coming. I stopped going for a while after the day I saw my first snake. Luckily it was on the side of the road and heard us coming and was disappearing when I saw it. I always walked with Madeline on the lead as a couple of times she had run off to investigate something and I could not see her. Luckily the day we saw the snake she was on the lead, as she was very interested in having a look.

As we got to know people they discovered that my vision was poor and they were surprised they hadn’t noticed. I was pretty good at covering it up. When we were out in public I just said hello to everybody – I had no idea who they were or if I knew them or not but people just assumed that I had seen them. I had the girls or Peter with me most of the time and they would whisper in my ear, ‘that’s so and so’ or tell me who was coming towards me, who was in the group, that sort of thing. One of the locals said to Peter.
'I’ve just heard your wife can’t see, you would never know.’
Everyone was really supportive and helpful and I appreciated it so much. I could stop bluffing which was a relief.

During the first few months after we moved I felt very isolated and did wish I was back in the suburbs of Canberra. Even though by the time we left I had had enough of catching buses at least I could catch one to work or the shops. It was also easier to get the girls to the places they needed to go and they also became very adept at catching buses. If Peter was away we could still get around independently.

I did become a lot more patient as time went on and spent a lot of time waiting in doctor’s surgeries, waiting at the shops for whoever had driven me. I went to appointments in Canberra, Bowral and Sydney. I waited in parks, coffee shops, on street corners, on benches on the street – anywhere I had to because I had amazing people driving me around and if I had to wait for them to finish whatever they were doing that’s what I did. My friends would apologise for asking me to wait but that was just how it was. I remember sitting in the eye specialist’s waiting room one day when things weren’t going well and I spilt coffee on my t-shirt and burst into tears! The little things set me off!

We were lucky when a new bus service between Canberra and the coast started so that if Peter wasn’t around the girls and I could catch the bus to Canberra on weekends and during the holidays. This was a great help and we were able to spend some time with their friends and do some shopping. If I had an eye specialist appointment we could go in to Canberra and by catching buses and taxis we could get around ok. I even did this trip by myself a couple of times and although it was certainly a challenge I did it. I knew where I had to be and organised how I would get there. They were very long days though and I was exhausted after each day out as the strain of trying to see was sometimes too much. I did have a bit of a setback with my left eye on one of these days out and spent the day shopping with the girls while in excruciating pain as a piece of lens remnant in my eye was causing a few problems. It felt like my head was going to explode and I cried all the way home on the bus that night.

The bus also came in very handy one day when a friend in Majors Creek was very ill and needed to be taken to Canberra in an ambulance. Her husband was away and her mother was on her way from Adelaide. I went with her in the ambulance and managed to find my way around the hospital and to the bus stop in the dark to catch the bus home. Peter had phoned the driver and told him I would be there and that I could not see very well and the driver assured him he would make sure I got on the bus!