From Sun Coast Daily, Australia
“I LOVE my life and wake each day in anticipation of what the day will bring.
“My life is good, so very very good.”
At the age of 46, Noosa woman Jules Hunter was positive she could overcome the constant, debilitating pain which had plagued her life since childhood.
“I’m excited with this decision knowing it’s time for my big sleep, to be free of pain and suffering,” she wrote in her final letter to Exit International, the controversial organisation fighting for the legalisation of voluntary euthanasia.
The former “face” of the Queensland MS Society, Jules joined Exit early this year to learn more about her “end-of-life options”. It was the beginning of the end after years of pain which began when she was a teenager. The keen tennis and netball player couldn’t understand why she was in constant pain and suffered numbness, paralysis, vertigo, fatigue and muscle spasms. After years of tests and expert opinions, in 2004 she was diagnosed with relapsing/remitting multiple sclerosis.
“I celebrated the news, as I could now understand the symptoms that I experienced over many years,” she later wrote on the Queensland MS Society website. Six years after her MS was confirmed, Jules was also diagnosed with Erythromelalgia – a rare disorder that affects the body’s extremities. “My feet, hands, knees and face burn with intense heat and pain,” she wrote. “I was told by my neurologist that the burning was not related to the MS. With MS you may feel hot but physically don’t appear red. For the first time this winter my hands flipped to the opposite – uniphasic Raynauds’s phenomenon. My hands turned blue and were covered in chilblains. Skin was ripped off from the dressings. My nails on the right hand are falling off from all the trauma. I now sleep with the air-conditioner on and need to protect my fingertips, but my palms burn from the EM.”
The pain of the two conditions forced Jules to quit work but didn’t stop her striving to achieve. She said she set about trying to achieve as much as she could. “I became regularly frustrated when unable to achieve my goals. I would push myself more, thinking it would help,” she wrote.
“During my working life the same happened and I was beginning to think I was imagining what was happening with my body. I no longer work as there is uncertainty of how I feel from day to day. However, I live a normal life, and managed to gain my diploma in financial planning five years ago.
“The difficult part of the MS diagnosis was telling family and friends and watching different reactions to my news. I can cope with my positive attitude, independence and love of life. I am able to keep MS symptoms under control with diet, rest, exercise and limiting stress. I cannot control the EM as easily.”
“When I meet people, the common response is ‘Oh, but you look so good, you would never know’. My amazing mum always taught me ‘If you look good, you feel good’. I love my life and wake each day in anticipation of what the day will bring.”
“Simple things like having coffee with my beautiful mum and special friends, walking along the beach and chatting to my neighbours make me so happy. My life would be incomplete without my special mum, dad and close friends. The support I have from mum, dad and close friends encourage me to achieve my goals with this new beautiful life. I remain positive that the causes and a cure are in sight with all the research and awareness of Multiple Sclerosis and Erythromelalgia.”
“My life is good, so very very good.”
By the time she began contemplating euthanasia earlier this year, Jules’ conditions had worsened to the point where she was living in Noosa nursing home. Her final letter to Exit, just a few weeks ago, gave an insight into her trauma.
“To be honest, looking at me you would never know what I go through behind the scenes,” she wrote. “I can’t cry as it hurts physically – as it does to laugh, talk and smile. Every nerve in all my teeth fire off and I clench them so tightly to swallow and because I’m in so much pain. I constantly need to distract my brain from the intense pain, which is exhausting. I never show it when with others, conversing as normal and socialising when I can.”
“I agree that I look perfectly healthy, which is difficult for many to understand my pain and frustration. My deepest fear is leaving my parents behind but my courage is knowing they are strong and will deal with my decision knowing I’m free of pain and a life in a nursing home.”
Initially Jules contacted Exit International because she thought the organisation could help her end her life.
“I need guidance and assistance, knowing it’s the right time to be at peace with no pain any more,” she wrote to the group.
But, short of referring Jules to the Peaceful Pill Handbook, Exit staff were not able to provide more support as assisted suicide in Queensland is punishable by life in prison.
But she managed to find her own way. “I’m excited with this decision knowing it’s time for my big sleep, to be free of pain and suffering,” she signed off.
Her friend Heidi, who knew Jules for 10 years, described her as a “quiet and compassionate” person who kept to herself. “As far as I know, she only had her mum and dad in her life,” she said. “I would come up from the Gold Coast and meet her for coffee and she would tell me what had been happening in her life.
“She hated the fact that she could no longer look after herself in a home.
“She got a room in Ozcare, mixing old people.
“But she wasn’t old, she was young – she dressed trendily and put on a brave face.
“The last couple of months of her life were hard for her as she was losing control of all the things she could do and she was so embarassed about it.
“There was no quality of life in the end.”