Denial and death: Kay’s battle with Lyme in her partner’s words
A debilitating illness that has been slowly ensnaring the lives of many Australians in its clutches is on a worryingly gradual rise. Yet the Australian healthcare and medical industry are determined to refute the existence of Lyme in Australia.
One of the recent victims of Chronic Lyme disease in Australia was Kay Hicking, a loving mother and wonderful partner. Sadly, Kay endured unimaginable pain and suffering over the past decade, due to the lack of recognition for treatment from the Australian health care system.
This blog post was submitted by Kay’s partner of 21 years – Wayne Hicking.
Kay was a kind, slightly shy person, yet would give you the shirt off her back. She adored the kids very much and spent a mountain of time making sure they had everything that they wished for.
Kay was my magician. She would strive to turn my every little wish into a reality. I recall one such incident. She was a collector of ‘things’. This one time, I wanted to buy myself a better harmonica as I was improving at my skills and showed her a few pieces that looked good but said to her that it would have to wait as it was too expensive. The next thing I knew she’d found one secondhand on eBay and bought it for me at a much-discounted cost. With the kids independent, she saw it as her job to make sure I had everything I wished for.
During the ’90s, before we knew each other, I worked in a travelling profile and Kay would often be home taking care of her three kids, while her then-husband worked in Darwin and was only able to visit her for just a few weeks in a year. To kill loneliness, Kay would chat with people on ICQ and that’s how we found each other and became friends over the years and kept each other company.
But as years passed, I longed to live closer to home and relocated. Somehow during the relocation, my ICQ account had accidentally got deactivated. Meanwhile, Kay’s marriage had become strained and had taken a toll on her and the children and she had decided to get a divorce. It took Kay over 6 months to track me down. But when she finally did, there was no going back from there.
In our three and a half years of friendship, we had never met each other but had developed a close bond of trust and acceptance. After another four months of chatting and getting settled into our new normal lives, we decided to take the relationship forward and decided to go on a date. We met on Valentines Day in the year 2000 and it was like love at first sight like we’d known each other forever.
It was the beginning of an everlasting relationship. Over time as our relationship strengthened, we moved in together and later decided to get married in 2003 and spent 17 beautiful years together.
However, in a few years, Kay developed some serious back problems and had to get surgery. It was a trying time for us because my tech business was facing losses and I was later diagnosed with Bowel cancer. This was a period of extreme stress and uncertainty and I had to close my business. I got better after surgery, but by this time we had sold our house and began renting. That’s when we decided to start a carpentry business together.
Business slowly picked up and things stabilised. She would often come along to keep me company on jobs and would also handle bookkeeping for the business. During one such project in 2014, we were working in a heavily bushy area in the northern beaches of Sydney. Kay was clearing the leaves I had blown off the roof when she complained of a sudden odd feeling above her fringe line. When I approached her, I discovered a large tick on her, which I removed immediately.
A few days later, Kay began to feel strange and would often suffer from pain and started falling ill frequently. The doctors could not identify the root cause of the symptoms. When I mentioned the tick and asked if it might be Lyme disease, the doctor laughed it off and denied the existence of Lyme disease in Australia.
Over the following years, Kay was diagnosed with Peripheral Neuropathy and her condition worsened to a point where she had lost feeling in her hands and legs and would often complain of tingling in her feet and burning in her hands.
The doctors tried dozens of tests to try to get to the bottom of it, but by mid-2019 they were forced to refer her to St George hospital emergency department for more thorough testing than what they had at their disposal. She was admitted and after a range of tests, but there were still no answers.
At this point in time, Kay was only able to move around with the help of a walker, but on a number of occasions had a series of falls that appeared to get worse over time. Meanwhile, she was trying to gain admittance to the NDIS, and eventually got it in November, and I was given a carers pension and supplement to take care of her.
Later, Kay was admitted to St. George hospital again due to a UTI infection, remained there for a handful of days, and continued her course of antibiotics at home. She was again admitted in early January this year, remaining a little longer this time. Unfortunately, she contracted Sepsis whilst in there before she was discharged.
At home, things went downhill fairly badly over the course of the next month, and by mid- March, she was virtually eating nothing. When I called the doctor suggesting she had another UTI, the doctor asked me to start her back on the penicillin I had on hand.
A week later, Kay’s condition worsened, and she asked to speak to her children to say her last goodbyes. At around 3 pm on March 28, 2020, she asked for a hug and a kiss before she slowly slipped into a coma.
The last 24 hours of her life were the only time when she was in no pain. Kay did not wish to be resuscitated, so I had to let her slip away. All the while holding her hand and talking to her, giving her love and support. She passed away peacefully.
I am slowly recovering but fiercely miss her and her beautiful smile every single moment. Her memories are the only thing that gives me the strength to wake up every morning and carry on.
The Lyme Disease Association of Australia (LDAA) would like to thank Wayne for sharing Kay’s battle with Lyme disease and urges the Australian health care industry to consider Lyme disease as a life-threatening illness that could be potentially curbed if caught and treated early.
If you would like to share your story or the story of a loved one, please reach out via the contact us page.
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