Recovery begins

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. 

Sydney here I come!

As my surgery date was getting closer I was terrified something would go wrong and it wouldn’t happen. I had been trying to exercise and eat well and keep healthy. A couple of weeks before my surgery date I had a sore eye and another emergency appointment was arranged with Dr Kate. There was an abrasion on the cornea and she put in a contact bandage to protect the eye and gave me antibiotic drops. I saw her again the week before I was due in Sydney and she wasn’t happy with how the eye was going. She spoke to Dr Con and he advised to leave the contact bandage in until I arrived in Sydney and he would remove it then. At that point, I was totally focused on the next week and then the couple of weeks after that while the eye recovered from the surgery. I knew I would have reduced vision after this procedure and that would make life more interesting! When I last saw Dr Kate I tried to read the eye chart with my left eye and I couldn’t even see the chart. It was like she had turned off the light and there was no chart there.

I was ready for my trip to Sydney. I had been out shopping to buy some more pyjamas. I love pyjamas and during winter I was the flannelette queen. This was the first year in my life I was unable to wear them as my body was a bit warm! I usually go out every year and buy some new ones and the range to date had not been very exciting. Until this year! They were everywhere and gorgeous and I couldn’t buy any of them! I did however manage to buy a couple of pairs of very pretty pj’s in a lighter material and could not wait to lounge around in my hospital bed looking gorgeous.

This was going to be a very different experience as I would be in Sydney and my family would be at home. The girls didn’t want to take time off school and come to Sydney so we arranged for them and Madeline to stay with some friends in the Creek. Peter was going stay a couple of days and then come back to pick me up. My bag was full of clothes, electronic equipment and audio books to keep me amused and of course I had a bag of treats.

Peter and I decided to catch the train to Sydney. It was freezing when we arrived at the train station and there was a bitter wind blowing. While we waited we spent the time walking up and down trying to keep warm. I’m sure we looked a sight as we huddled against the walls and jumped around the station. It didn’t even occur to me that the station would not be open with a friendly stationmaster keeping us company in front of a raging fire. At last the train arrived and off we went. It was lovely and warm and very relaxing and of course the train was about an hour late arriving in Sydney. We eventually arrived at our hotel and the noise of Sydney kept us awake for most of the night, which meant we slept in, and were in a bit of a rush to get to the hospital on time.

It was a very emotional morning as at last something was happening to restore my sight after two and a half years of limited vision. When I was taken to theatre I was very teary. The surgery was done under local anaesthetic. I was having one of my cornea grafts removed and I could hear the doctors saying how well it was going. It was then time to get into hospital routine. The first day went very well and I even slept. Peter was back and forwards during the day and night and bought me coffee from the Lindt Chocolate Cafe. Best coffee I had ever tasted! Mm mm. Where are the chocolates?

I didn’t expect to feel that good. I was feeling quite cocky and this was a breeze – it was going to be very easy. 

Emotional rollercoaster

When we moved it did prove harder to get out and about for a while. I did practice wearing my contact lens and was able to drive for a few weeks.

The girls and I drove into Braidwood a couple of times to go to the local pool. It was important for me to get my independence back and to have the girls meet some local kids who will be at school with them. We joined the library, found out lots of info about what happens in town and met some lovely people. After one visit to the pool, we were caught in a huge thunderstorm on our way home. The thunder was crashing right above the car, the lightning striking and the rain so heavy we could hardly see. We arrived home to find the house surrounded by mud, the alarm was going off for our waste management system and Peter had gone away for work! I thought about panicking, but did as any good country girl would. I donned my gumboots, went out to check on the system, made sure the water was going into the water tank and that the house had not flooded and then opened a bottle of wine.

I was able to drive for about three weeks before problems started again. I put the contact lens in one day and drove to Braidwood. It was the first time I had driven myself anywhere in my car on my own in a long time and it was wonderful. I arrived in town and had a cup of coffee and was doing the grocery shopping when my eye started to hurt. Starting to panic, I thought, ‘How am I going to get home?’ My eye was watering and was very sore. Peter was away at the time so I drove home with a very watery sore eye and when I got there took the contact lens out and was never able to wear it again.

During my visit to Dr Kate a few days later, she said the cornea was in distress again and the contact lens wasn’t going to be an option. I had an appointment to see Dr Con and he said ‘OK, it’s time to organise surgery.’

He changed his mind about doing a cornea transplant. He decided that implanting an intraocular lens would give me a better outcome but that meant going into surgery for four procedures. On each eye they needed to remove the cornea graft and after four or five weeks of recovery, I would go back and they would implant the lens. That procedure to do the implant is done during day surgery and we would need to stay overnight in Sydney and see Dr Con the next day. Once that had healed they would start the whole procedure again on the right eye. When he told me I would need the four procedures I was very distressed. This was going to drag out for at least another six months and probably longer. Peter kept telling me that we were making progress, it would all be over at the end of the year.

I really tried to keep a positive spin on this. We were sitting down to dinner one night and having a chat with the girls. It was the usual rules and regulations and guidelines chat we have every now and then where everyone gets to have their say.

Caitlin said to me, ‘You’re always whingeing about how you can’t see and how you can’t do things.’ I was quite taken aback by that.

‘Am I being very negative?’ I didn’t think I had been. There were days when I didn’t feel any positive energy at all but most of the time I did get up and get on with my life.

Recording my thoughts was important. When I listened back to the tape for the first time I was surprised at how I had forgotten some of the stuff that had happened, and it was important to hear my voice at some of the points when I was feeling very down.

While I waited for the surgery I certainly had some days where I was very depressed. Restoring my sight was going to be a long process. I had to have four procedures and there was going to be a gap of possibly six weeks between each one, which meant the rest of the year would be taken up with trips to Sydney and surgical procedures. We had to think about Peter’s job as he travelled a couple of days each week, what we would do with the girls as they were in a new school and I didn’t really want to pull them out for each of these trips we had to make to Sydney. We also had our dog and the bunnies to think about. I generally faced this whole episode in a very positive way, I didn’t have a terminal or chronic illness, I had a very supportive family around me and my problem would be fixed but sometimes I didn’t believe it would ever be over.

Inspiration

My days out didn’t always lead to suffering and negative thoughts! Some led to positive feelings and actions. Teresa drove me to one of my appointments with Dr Kate and the appointment was a positive one. We had coffee afterwards and there was a bookshop next to the café where we browsed the shelves. Well, Teresa did and she spent the visit reading snippets of books to me and we laughed a lot. A book caught my eye because it had a nice bright cover. It was Under the Tuscan Sun. A few weeks before I lost the vision in the second eye the movie had been on TV. I had loved it and after seeing the movie felt it was time for me to take stock and decide what I was going to do with my life. I had started thinking about what I wanted to do once we moved. Writing a book has always been a dream and maybe this was my time.

That day an email arrived from one of my favourite authors, Monica McInerney. We had met at a Books Alive function the previous month and had a lovely chat. I sent her a letter telling her how much I enjoyed her new book and related the story of reading her book in the waiting room at the Eye Hospital with the book right up close so I could see the words and how I was laughing out loud and had the attention of the other patients. Unfortunately we were all there because we couldn’t see very well and I’m not sure how many patients could actually see the name of the book I was reading. She wrote back a lovely email thanking me for my letter and said she enjoyed my story. She was very supportive and encouraging and inspired me to get on and write something.

The day after the trip to the bookshop and receiving Monica’s email I sat out in the sun with a marker pen, lots of paper and a glass of wine. I was always hearing, write what you know and love. I sat in the sun, had more wine and wrote a story about a little girl going to school with her new glasses. I thought it was a very cute story and the girls typed it up for me.

During the next few weeks I did some work on it, the girls did the editing on the computer and sent it off to a children’s magazine. I learned that, even with this drama happening there was still stuff I could do.

I did have an article I had written published. In the early days of losing the vision in my left eye, I started thinking about my cornea transplants. As my eyesight had been going well I didn’t think about my transplants but when I started having problems I thought a lot about my transplants, the donor, the donor family and remembered all that had happened when I was having the grafts done and the recovery time and how wonderful my sight was.

It was organ donor awareness week and all the publicity was on the heart, lungs and kidneys and I was a bit annoyed that they didn’t mention corneas which are really important. They are not a life saving and dramatic operation as the other organs but they change lives. I started writing a story of my eyesight loss and what my cornea transplants meant to me. There was an article in the ACT Writers’ Centre Newsletter asking for transplant stories for an anthology that was being put together. The date for closure had passed but I emailed the editor and asked if she would be interested in my story? She said yes and we sent it off.

Eighteen months later I received an email letting me know that the book was at the printers and my story had been accepted. I was very, very excited. Someone had liked my story and was prepared to put it in a book. A lot had changed for me in the eighteen months since I wrote the story.

A couple of weeks after I received the email I was having a day where I found it very hard to get out of bed and get myself going. I eventually decided I should get out of bed and take Madeline for a walk down to the pub to collect the mail. There was a parcel for me. In it was the book called ‘Gifts of Life’ and in that book was my story. It was such a thrill and certainly made my day.

I was published. Maybe, just maybe I could make a go of this writing business. I had seen the movie ‘Miss Potter’ and I remembered one of the phrases Beatrix Potter used. ‘We must not stay home alone; we must present ourselves to the world!’ My first story had been ‘presented’ and it was time for me to present other work I had written! I had not heard back from the publisher of the children’s magazine but at least I had not received the rejection letter either.