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Sunday, 27 February 2011
My life is so different now. It has been three years since my final operation. I celebrated each anniversary and took time to feel emotional and thankful for this new era of my life.
My friends are still amazed at how I survived the move and the eye drama and marvel at what I am now doing and how I am embracing this new life. What else could I do? We had to get through it and now I have this second chance I am not going to waste it.
We lead such a different life here and can’t imagine going back to the city. The girls are doing very well at school and haven’t missed out on anything. They lead very busy lives with their groups of friends and both have part-time jobs and a good reputation around town.
Peter still commutes to Canberra but has cut back his hours and works from home one day a week. He is involved with the local church and enjoys just being at home and pottering around – hmm sounds like retirement looming.
As for me – well my life couldn’t be much different. I left Canberra nearly blind, on leave from my job and menopausal and had no idea how I was going to survive this move to the country.
I now can see better than I have in a long time, have a casual job and run a small business and am still menopausal!
This has been an amazing move for me. I have embraced this new chapter of my life and again as I did in Canberra have gone and done things I would not have thought doing previously.
When my vision was restored I went out to find myself a job. I had no idea what I wanted to do but needed to do something. I had a couple of casual jobs and at one time was juggling three at the same time and was dubbed the town casual by friends. I was a bank teller, a checkout chick and a teacher’s assistant. I realised the casual work was not going to be enough and needed to find a job I could do at home. When I started to read again I was surprised by the mistakes I found in the best sellers I was reading, this was a job I could do so a correspondence course was found and the beginning of a new career as a proofreader and copy editor. Another local was doing the course and we met and ended up friends and in business together. My role at school changed and I have had regular work in the office and the library.
My community activities as President of our local VIEW club and Treasurer of the local soccer club have kept me busy and it is through these activities and my various jobs that I now know a lot of people in town – and they know me!
As the time is fast approaching when our girls will head off to university or whatever it is they choose to do, Peter and I know we did the right thing moving here. It was a challenge in the beginning but now we are settled and happy and can’t see ourselves moving for a while.
Ah, life in the country when you can see it!
Sunday, 20 February 2011
I had my independence back but I didn’t really know what to do with it. I was listening to the radio one night and the question being discussed was ‘what have you been unprepared for?’
I was totally unprepared for how I would feel about all that happened in the last few years with my sight. Yes, I was angry the problem wasn’t resolved earlier. The pressure this situation put on Peter made me angry. He had to deal with the whole move, his change of job and he said sometimes he felt like a single parent as he was running the girls around, doing a lot in the house when I couldn’t, all the grocery shopping, cooking and cleaning and of course driving us everywhere. He had to fill in forms for me and show me where to sign, write everything I needed in large print, read to me, and sit back and let me try to exert my independence and watch carefully when I had a knife in my hand! He was very diplomatic and let the line behind me continue to grow while I struggled to get money out of the ATM and not tell me or try to take over. He had to cope with the rollercoaster of my emotions throughout this whole drama. He told me how relieved he was when it was all over. I think that was a bit of an understatement; as he had to deal with a menopausal, nearly blind wife and two teenage daughters who had all just moved to the country and he had started a new job!
The girls also had to make adjustments. They did miss out on some activities because I wasn’t able to drive them when Peter wasn’t here or I wasn’t feeling up to making the effort to organise whatever it was they wanted to do. They also learned a lot about people with disabilities and how to help. They became very good at looking after me when we were out but there were times they forgot to help me cross roads and had to come back to get me. They read menus and letters and recipes and paid bills for me. They had to look after themselves on nights Peter was away and I just could not cope and went to bed. They helped with the shopping, as I could not find items in our new supermarket. They also had to deal with a very emotional and erratic mother at a time when they were feeling a bit insecure. They had to cope with my drama, their dad’s new job and a new life that was very different. We had taken them away from all their friends and what they were familiar with. They started a new school, had to make new friends and find their way in a small country community. It was a totally different life Canberra where they grew up.
I was not prepared for the amount of surgery I would need. I can’t even begin to express how I felt about my team of doctors who worked so hard to restore my sight. I am so grateful they have so much amazing technology to be able to work their magic.
I was not prepared for the excitement of seeing everything again. I thought that I would just come home and life would revert to normal. I didn’t know what normal was anymore; my new life was very different to my life before I lost my sight. The first day I was home alone after I came out of hospital I felt very lost. The girls were at school, Peter had gone away for work and I didn’t know what to do.
I phoned Peter in tears. ‘What shall I do?’
‘Go for a walk,’ was his suggestion and he was right. Madeline and I set off to discover our village. Everything was so clear and bright and beautiful. My new life was here and I had to figure out what I was going to do. I needed to set goals for each day as I recovered from my surgery. I decided not to go back to my job in Canberra. As much as I loved what I did it was time to move forward and try something else.
I sat in coffee shops, reading the newspaper and watching the passing parade of people. The first time I did this I rang Peter in tears (again) to tell him how wonderful it was. I went shopping and could actually read the price tags and see the detail in the material. I have a shirt I bought during the days I could see very little and I was surprised to see it had beautiful embroidery on it, I thought it was a plain white shirt. I put colour back in my life, bright beautiful colour. I walk into unfamiliar places with confidence and I smile at everyone. I don’t know if my cooking has improved but I read recipes again. I have no excuses now about the housework but sometimes it is more important to sit in the sun with a good book. I spent a lot of time sitting outside watching the birds and looking at the stars and the moon. This whole journey had been a rollercoaster ride but we were at the end. We were living in our new home in the country in our new community. I certainly enjoyed looking at the birds, the ducks, the sheep, the cows, the trees, our pets, our house, my children and my husband. Everything was just gorgeous. My girls were over it. Over me carrying on how exciting it was to see everything but they also appreciated what we had been through and were really pleased that it was all over.
My eyes are so precious. They are unusual. The doctors were able see something different as it is very unusual to see a patient who had cataract surgery in the early 1960’s. Cataract patients are usually elderly when they have their cataracts removed, so there are not many people still around who had surgery when I did and the doctors really appreciated being able to see how it was done. The amazing cornea transplants, the tissue donation from that wonderful unknown donor who gave me really great vision seventeen years ago. I will never forget the team who gave me my sight back after the cornea transplants stopped working.
Sunday, 13 February 2011
During the next few weeks I spent a lot of time in tears. I couldn’t believe how clear and bright and beautiful everything was. That was just with one eye. I couldn’t even begin to imagine what it would be like with two. I was able to drive between here and Braidwood – and that gave me back some independence. I didn’t know what to do with myself.
When I went for a post op visit to Dr Con in Bowral, he was very pleased with my progress and he told me my sight was good enough to pass a drivers license test. I told him I had done some driving between home and Braidwood and his comment was, ‘Next time you come and see me I want you to drive.’ And next time I went to Bowral I did drive! One of the locals here said to me that it was so nice to see me zipping around town. He said that he saw my smile before he saw my car. He said it was as if I had taken a blindfold off and that’s what it was like, it was pretty overwhelming.
Both my cornea transplants had gone and new technology was helping me. I could see everything. I didn’t acknowledge how difficult this had been until it was over, until I had my sight back. Peter said that was my way of coping with it. I had downplayed it. My eyesight drama had affected every part of my family’s life.
When the time came to have the second lens implant, I couldn’t believe they were going to do it as day surgery. Peter and I went back to Sydney and the girls went out to Alli and Rusty's. We went up with very high expectations. It was all going to be over. A couple of hours after having my surgery I was out of hospital and we were on the road back to Bowral. We stayed overnight at a lovely B & B in Mittagong. Our host was given a bit of a shock when I got out of the car with a bandaged eye! I was a bit uncomfortable and very tired but we had a lovely evening there. Dr Con was very pleased when he took the bandages off the next morning and sent me on my way to learn to live with my new eyes. And that’s what I did.
Sunday, 6 February 2011
Finally the time came to go back to Sydney and as it was during school holidays, we all went up. We stayed in an apartment in The Rocks and when we arrived went for a walk. It was dreadful. We were out and about just as the five o’clock peak hour was happening and there were so many people rushing around and all the car lights and shop lights were hurting my eyes. I felt so vulnerable and could not wait to get back to the apartment. My emotions were at a peak and I couldn’t believe that in a few days I would be able to see again and I was feeling very emotional about having my second graft removed.
Dr Con told me he planned to implant the lens in the left eye and remove the transplant from the right eye at the same time and I would have both eyes padded up for 24 hours. That was going to be a challenge!
The anticipation was a bit more heightened because at the end of this operation I would have the sight back in one eye. I knew after the surgery I would come out with two eyes bandaged but I woke up and panicked and ripped off the bandages. They had to re-bandage my eyes but they put a shield on the left eye, a clear shield with holes in it so I would be able to see a little bit and that was amazing because even with the shield on and the tape all over it I could see stuff. When Peter and the girls came into see me I could actually see them. It was extraordinary. I didn’t believe I would have the sight so quickly after the surgery. It wasn’t great sight but I could see more than I had in a long time. I spent that day looking out of the holes and seeing what I could see and it was awesome.
Having a close look at my girls and my husband was amazing! I was able to see my doctors and nurses, my room and my roommates. When Peter and the girls left I sat back and took in all that was around me. Mind you my sight was still limited as I had my eye covered with a shield but it was overwhelming.
I spent a lot of time in tears but this time it was good tears. The ladies in my ward were lovely and we spent a lot of time drinking coffee and chatting. I still write to one of the ladies I met and as with the last visit I was so inspired by these women. I was having my sight restored while these ladies had lost theirs.
One of the ladies had a terrible accident and had lost her eye, not just her sight but her eye. She was so positive about it all and I wonder if I would have been as gracious in the same circumstances. On the second night that I was in the ward with the ladies, her doctor had changed her medication and she came out in a rash all over her body. She was very distressed and after talking with the doctor who assured that it would be OK that it would go away she came out of the bathroom and stood by her bed. Her curtains were open a little bit and she was wearing a long white nightgown and put her arms above her head and said, ‘it’s a hellhole!’ The whole thing was so dramatic. She was very distressed and it took us all a while to help her settle. She was 80 years old and had led a very interesting life. Her accident was terrible and occurred at the same time her husband had to go into a nursing home. She was a very flamboyant lady and we all fell in love with her. She told me later that she waited to see what I was wearing each day and was very impressed with my array of nightwear!
The healing process for the right eye was slower than the left and that was frustrating. I cried a lot and was scared that this one wouldn’t go as well as the first one. The doctors assured me that the first graft removal healed in record time. This one was healing at the normal pace and I ended up staying in hospital for seven days.
It was pretty amazing because I could see again and be more independent in the room. I could do things on my own again. I was able to take myself for walks around the ward, get in the lift and see the buttons, go by myself to the café, buy a coffee and sit in the courtyard and watch the world go by and follow the signs and find my way back to my room.
When I eventually left the hospital the drive home was amazing. It reminded me of the drive home when I had my first cornea transplant. I could see the road signs, car number plates, the faces of the people in the cars, the lines on the road were not double anymore, the trees, the sky. Even more importantly I could see the signs on the toilet doors at the stops we made. When we arrived back in the Creek it was just getting dark. Peter pulled over on the side of the road to look at our community noticeboard. I looked over and written on the board was ‘Welcome Home Kerry’ and I could read it! The girls had written on the noticeboard and Rusty had drawn an eye chart as well. More tears and then it was home to our new house, which I had not really seen in detail. The carpet had a pattern on it, the paint was so bright and clear, the tiles were just as I had seen in the magazine, the floorboards, the kitchen bench and my gorgeous family and of course the dog and bunnies. Everything was so clear, not foggy and this was with one eye. Imagine what it would be like with two!
When I woke up the next morning I came out into the family room and looked out of the window. I called out to Peter, ‘the sheep, oh my god the sheep!’ He came in and wanted to know what was wrong with them. ‘They have legs,’ and I promptly burst into tears. There are about a dozen sheep in the paddock next door. Even when they were close to our house all I could see was white blobs. On this morning they were down the end of the paddock and I could see their legs and heads and ears and it was quite a moment. I spent the day looking out the windows at the birds, the ducks, the sheep and the houses around us. Everything was so clear.
Sunday, 30 January 2011
The next morning was a different story. I woke up in a lot of pain. My eye was very sore. When they took off the bandage to have a look at it, the tears were pouring down my face. The doctor assured me that was a good thing, tears are good, tears are healing. I saw the three doctors, Matt, Dov and Katherine who had assisted Dr Con. They were very pleased with how it looked and I was padded up again. I spent most of the morning with Peter and resting because I felt dreadful. By Thursday night the pain had gone. It was a little bit uncomfortable but that was it. On Friday they took the pad off again and were very pleased with what they saw. They replaced the pad and I had a long day trying to amuse myself listening to my reading book, listening to the TV. The thing I loved about the Sydney Eye Hospital was that we all had TVs above our beds with very small screens! None of us could see which I thought was pretty funny but we could listen.
The women in my ward were truly inspirational. My sight was the best of the four of us and I realised how lucky I was. I was coming back from my visits to the doctors with positive news and these ladies were hearing bad news. One woman in particular I became close to. She had low vision all her life and was having some serious problems with the vision she had left. I spent a lot of time sitting with her and hearing her story. Although she was having a hell of a week her concerns were still with me. We had been discussing how much we loved having a cappuccino but we weren’t able to go downstairs to the café because we couldn’t see very well!
When her husband arrived on Saturday morning he was immediately given the job of taking us both down to the café and we sat out in the sun drinking coffee, in our pj’s with bandages on our eyes. It was bliss! She was an inspiration as even with the little sight she had her life was a very full one.
This had been a very emotional week. I was on the path to having my sight restored and I realised how hard the last few years had been for my family and me but my thoughts were often with my roommates.
When I arrived home my sight was even more diminished. Life was just a bit harder and my family had to do more for me. I was on an emotional rollercoaster. Poor Peter. Not only did he have to deal with the emotions of my eyesight problems he had to deal with my hormones. While I was in hospital the night sweats certainly kicked in. The beds were awful but they also had plastic covers over the mattresses, which are just perfect for a hot body to lie on. Luckily I had all my lovely pj’s so that after a night of sweating in bed I could change into fresh ones.
The next procedure was due to happen six weeks later and it was during this waiting time my emotions were very erratic. I had one of my cornea grafts removed and was about to have the other one taken off too. I was feeling very guilty. I felt that I was letting my donor down because my grafts had not lasted. I felt I was letting their family down because they had made this amazing decision that had changed my life and now the tissue would just be thrown away because my eyes didn’t want it anymore. I was grieving for the loss of my grafts.
Before I had my transplants I was very shy. I had worn my ‘coke bottle’ glasses most of my life and had hidden behind them. I had met Peter just before my first transplant and we were married before the second. I became more confident and have gone on to do things I would never have dreamed of doing. My fear was that if I lost my grafts I would lose the person I had become and revert back to the shy girl I once was. I was scared that I would lose Peter as well. He had been in my life the same amount of time as my cornea grafts and in my head, because they were going he would too. When I told him this he was very surprised I would even think that. He wasn’t going anywhere. We would get through all the surgery and take one step at a time. These were the thoughts I was having as I was stuck at home and feeling even more depressed and isolated as I waited for the next operation.