The Observatory

Facing the challenges of vision loss

Amanda Clayson

The alarm bells started ringing in 2002. My sister and I were living in London and quite suddenly Mum's ‘newsy’ letters and cards professing undying maternal love could no longer be found slotted through our front door. Too proud to tell us herself, we discovered she had lost her job. We came back to Australia to visit and Mum’s struggle was clearly evident, the diabetes had taken its toll on her eyesight. We went back to London and packed up our lives to be closer; she was our world and she needed us. My sister was working for Qantas and would continue to do so in Melbourne, I wanted to complete my degree and got into university in Perth where I could ‘keep an eye’ on Mum. It was decided the best course of action to maximise the vision in her ‘good’ eye was to remove the cataract after some intensive laser therapy. My sister flew to Western Australia and we held her hand.

Amanda with her mum and sister at a wedding

What should have been a routine procedure went horribly wrong, very quickly. She was in acute pain and her ‘good’ eye was clearly turning very bad. The only way I can describe it was like watching a candle flame flicker out. We took her to the emergency department in Perth; I had rung ahead so there was no waiting, and we were told she’d need a miracle to save her eye. Lab results would show she had contracted Neisseria Mucosa, in her case a pathogen of the gonorrhea family. You’d had to of known my Mum’s stoic and very British sense of humour to appreciate the fact she thought it was so funny that she had contracted a Sexually Transmissible Infection. In her sixties. In her eye!

Her humour was unfailing and this was why we ended up becoming firm friends with her specialist ophthalmologist at the Lions Eye Institute. During the weeks she spent in hospital, very ill from the infection, it became an inevitability her eye couldn’t be saved, it wasn’t just blind, it was dying and it was making her ill. She was very lucky to be the recipient of a coral eye implant. The occularists, that hand crafted the prosthetic ‘eye’ that sat over the coral ball, would also become firm friends. They had a ‘Cyclops Club’ and had annual events like a Pirate BBQ! And Mum met people in like circumstances.

My Mum grieved the loss of her eye and her sight deeply. She had lost her first husband very young to a tragic accident–a man whose memory my sister and I grew up with although he wasn’t our Father–and I had never seen her so utterly devastated, even on the visits we made to his grave. This was a woman who LOVED life in an all-encompassing manner. Her friends and family were her world, being social was what defined her. She had represented her country in athletics, which had afforded her a top-notch education, and the small pleasure of reading was integral to her feeding her enquiring mind. She felt like everything had been ripped away from her. The eye she was left with had 20 per cent vision at best and even then only in flood lit conditions. She had to learn to accept her new limitations, learn how to use a cane, how to cross a road, how to catch a bus, pour a cup of tea. She had to discard her cherished collection of high heels and farewell her books. Our strong and fiercely independent single Mum was no longer.

Amanda's mum living it up with friends

My sister returned to her job in Melbourne. I continued studying and I had become my Mum’s carer. This meant she could still throw her dinner parties and entertain the masses and the food would magically appear and the dishes magically disappear. I was also the chief hygienist of the prosthetic eye! She used to wolf whistle me when she needed help and nick named me ‘Matron Sloane’! In helping her to transition to the changes in her life I began to realise I had to grab my own aspirations with both hands at the same time–I also needed help. The guilt was overwhelming, she had already been through so much upheaval, but I knew my sister and I would be at her beck and call for the rest of her life. I couldn’t settle in Perth, not after living in London for so long. And at the time I wanted to steer my university degree in a direction that wasn’t catered for in WA. So I packed up our house and put it on a train across the Nullabor to Melbourne. I don’t regret it, Mum loved the year she spent in Victoria and Vision Australia gave her the biggest welcoming hug of all. The opportunities available to both her and my sister and I, as her carers, were absolutely amazing.

Amanda with her mum and sister on a boat

Sadly she only got to spend a year in Melbourne. A year of treatment and hospital visits–but a year she faced with that infamous stoic humour of hers. A niggling cough that had been dismissed as ‘age onset asthma’ turned out to be lung cancer. By the time it was properly investigated and diagnosed it was in both her lungs, down her spine and in her hips. She was a non-smoker. The light went out in her ‘crap’ eye on 17 February 2008 and I can honestly tell you her biggest irk during the fight for her life was that she couldn’t pick up a book or magazine to pass the time. Facing cancer is a battle in itself, but facing it in darkness is an entirely different battleground. It was an honour and a privilege to have cared for my Mum and likewise to have been involved with Vision Australia. 

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About the Author

Amanda Clayson

Amanda Clayson

Amanda is a mature age student, currently at Victoria University in Melbourne. She grew up in Perth and previously attended Murdoch University. She is studying communications specialising in Public Relations. Amanda’s area of particular interest is cultural studies. First and foremost she is dedicated to her family and her biggest achievement and most important role is being a Mum to her only daughter, Katie. She is currently working on getting her personal blog ‘live’ on line. Read more by this author →

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