After

by Nikki Gemmell

  *

  There is an ideological split that increasingly divides the euthanasia movement. As Dr Nitschke explains, it’s ‘between those who want control (over their death) and see it as paramount, their right; and those who seem happier to leave the decision making to the medical profession. I suspect Elayn was a believer in the former.’

  *

  How dare he, I had thought, in the days after Dr Nitschke’s opportunistic tweet; assuming he was a craven peddler of death, just using my mother’s tragedy to advertise his wares. But I know now that there’s much more to the man than that. He is a humanitarian. He cares, deeply. Put simply, he wants to put people out of their misery in the most humane way possible. Elayn deeply respected that.

  *

  Dr Nitschke is now based in Switzerland and the Netherlands. ‘Life became very difficult in Australia. The whole issue has become depressing. You can get weighed down by the ongoing struggles – there’s a more enlightened environment over here. The debate in these parts is about whether everyone over a certain age should have access to these drugs. It’s easier to work in the area over here. It upsets me a bit that we led the world briefly. In some ways, amazingly, the Northern Territory was a very progressive place, and now we’ve gone back into the dark ages. My own views have evolved. A person’s ability to control their own death is a human right, rather than some conferred medical privilege. It’s the philosophical debate taking place right now. There’s been an evolution in thinking. The laws will pass.’

  I began with him in anger, I end with him in respect.

  *

  The religious lobby is vehemently opposed to euthanasia, to the taking of a life in any way; it is God’s choice and God’s alone. Elayn’s views on religion were final. Elayn didn’t believe in God. When she said she would one day euthanise herself, and I had admonished her for not wanting to see the grandkids grow up, she’d batted her hands as if it was a minor consideration compared to the pain she was facing. There was no light. She surrounded herself with a boundary of no.

  *

  Elayn had several Catholic priests in her family in Western Australia and sent us to Sunday school as children. Yet gradually she withdrew from the churchiness so deeply embedded in her suburban world of the sixties and seventies. We’ll never know why she had the number for the Victims of Child Abuse in her address book, never know if there’s a connection between that, and her Catholicism growing up. A cousin in Perth has no idea either.

  *

  But what happened to me, several decades ago? A veneration of . . . what? Mystery. A veering towards it like an ocean liner subtly altering course in the great ocean of life. Yet the destination was – is – unknown.

  Once God was completely absent from my world. I was a pit-bull atheist, a sneerer. Yet occasionally I’d stumble across a church service and just . . . sit, usually in some foreign place where none of the aberrant behaviour would be reported back. There was something all-calming about these illicit experiences. A leak through the veneer of aspirant coolness; a gentle drip, drip through the restless, anxious, often bleakly alone twenties. I felt ‘righted’ by these assignations, balmed.

  Then London. Life greedy, busy, grasping. Andrew and I in a bedsit on Fleet Street, both on gruelling night shifts. He sensed I needed something else – an anchor. One day he walked me across to St Bride’s (known as ‘the writers’ church’ because of its Fleet Street location). For 2000 years its plot by the Thames has hosted buildings that have been coracles of solace for various peoples, various religions. I found myself regularly slipping into its Sunday Evensong; brought to a stillness by a spiritual enveloping from a service mostly sung. I felt calmed, lit. Those evenings were clean. The shining hours.

  I don’t go to church anymore. At times say no, it’s ridiculous, I’m with that gentle atheist Alain de Botton on this one; tipping a hat to the graces within organised religion but not sucked in by them. But then, but then, sometimes, the heart-tug. At night, standing in a room filled with the sleep of the children, just . . . breathing them in. And a great warmth floods through me – an enormous, glittery, heart-swelling gratitude – and I’m closing my eyes in unstoppable thanks. It’s there again, in the wild places, where the silence hums. Antarctica’s ice desert, central Australia’s sand desert, under a full butter moon. Again, yes. Sometimes, often, I feel silted up by the great rambunctiousness of living; depleted. Need the cleanness of a religious way, a tuning fork back into calm.

  Yet Elayn had none of this. She had nothing to look forward to in the end, just a release into the void. She craved it.

  Living had become that hard.

  22

  I’ve been knocked down so many times I can’t remember the numberplates but now, for the first time, it feels so hard to pick myself up. This is Nervous Breakdown. Retreating from the world. Trying to knead out a new wrinkle in the forehead from scrunching it up and being unable to; even in the middle of the night, in restless sleep. Talking in company then bringing myself up abrupt – they hate me, can’t do this properly anymore, feel a fraud. Cannot exist in a professional space nor a private one; I need to dissolve this state. Is there a fix for grief? No. It’s too private, too singular. A grubby, growly, secret pit I cannot climb out of. Why is it taking so long? Constable B might as well have said, on that day she came to my house, ‘You will never recover.’ ‘You are now stepping into a new existence.’ ‘You will ask questions about this for the rest of your life.’ What is needed: some process of alerting the world around me that I’ve travelled off into a secret land and will remain there for some time. And need everyone’s forgiveness for it.

  *

  I write one of my newspaper columns from deep in bewilderment’s pit, asking whether Elayn’s actions were despair or empowerment. It receives the most responses I’ve ever had to any of my columns. It turns out there are a lot of Elayns out there.

  *

  ‘Your Mum’s final act was bravery, pure bloody bravery on her behalf. Why? Because seven years ago when I was diagnosed with breast cancer I made a pact with myself that if it ever comes back I am not doing “terminal”. No hospice, no wailing family and friends. I will simply pull the plug. I have the plan. It’s a secret to everyone except one. My man knows and understands this and agrees he would do the same. We are both ex nurses. We know what the end entails, whether it be mental or physical problems, or in some cases both. Palliative care is not for me. All I have promised him is that it won’t be him who finds my body.’

  Name withheld

  *

  ‘My mother passed away in palliative care. She was there for seven weeks. She would have elected to go at three. Instead we stared at her for the full seven not wanting to say our goodbyes . . . She was in enormous pain . . . so were we. Soul-destroying stuff. Let’s hope the message gets out there that we are not talking about taking life, we’re talking about releasing it.’

  Sherelle Scott – Noosa QLD

  *

  ‘It was a choice your mother made, when she could. I wade through a sea of wheelchair-bound, demented, voiceless, amputated, broken old women (they are mostly women) as I visit my mother in a nursing home. She’s increasingly less able to make any sense of her surroundings. Me. Her life. And I often arrive at dinner time, to that suffocating pungent smell of old-fashioned institutional cooking. How I loathe it. I rarely see any other visitors, and still wonder why. Perhaps your mother just weighed things up and made a very sensible decision. I can well imagine the lure of that, as I see my own fate over the horizon.’

  Paul Mabarrack – Blackwood SA

  *

  ‘I also suffer from chronic, agonising, never easing, peripheral neuropathy of the sensory nerves of both feet which is seriously affecting my enjoyment of life. I have a good GP and have had all the tests by neurologists, and have tried nearly every recommended medication, but to no avail – the chronic pain persists every second I’m awake. It really gets me down and I’m sure nobody fully understands th
e horrible impact it has on my life. Sometimes I get onto the internet and look up things like peripheral neuropathy and suicide – but that’s not an option for me – I know that for sure. However I fully understand how your dear mother must have felt when she decided to euthanise herself – chronic pain can leave a person feeling absolutely miserable. I spoke to my doctor recently and said the pain is so severe I feel like having both feet amputated but of course that is not realistic, and also phantom pain apparently can be very painful after amputations. One of the main problems I face is that I feel nobody fully understands how much constant pain I am in, and there is no use whinging to people anyway.

  ‘I look for a couch to lie on every five minutes and yet the chronic pain still fully nags at my mind every minute I lie on that couch. I am writing to you because I care that your dear mother finally decided her chronic pain was too unbearable to continue with and her decision was right for her – nobody else would really, fully, understand. I do.’

  Name withheld

  *

  ‘Pain is considered by most medical practitioners as a complication and an irritation to all, rather than a medical entity to understand and manage. The outcome of poor pain management is all too self-evident. We as health professionals MUST do better. Much of our practice lacks evidence-based science, hence doctors continue past practices of inadequate pain management. Those practising in pain medicine utilise patient information, mindfulness, behavioural changes, education and understanding; appropriate physical activity protocols; and medications to attempt to manage a person’s pain. It is somewhat unfortunate that many in health services disciplines still consider pain as somewhat incidental to disease/injury in the community. Many of my colleagues do not take pain (particularly persisting pain) seriously enough to take time with the sufferer to explain the issue and offer options. Public health and private medicine are getting their act together, but funding remains an issue when competing with the glamour clinical disciplines for the ever shrinking budget. And no, surgery is not always the answer . . .’

  Name withheld (an occupational & environmental physician)

  *

  ‘As an occupational therapist who treats people with chronic pain I have heard too many tragic stories like those of your mother. “Going under the knife” to correct a complex pain problem is all too often the first course of action suggested to people. Frequently though, surgery compounds the problem and spreads the pain even further than the original site of damage. The less aggressive options; helping the body realign itself through gentle exercises and movement, education on how to manage the pain better, or simply changing footwear before too many imbalances have occurred is invariably the far wiser and more effective choice. Bravo for the good old Blundstone . . . Chronic pain is called the “Invisible Epidemic” for good reason.’

  Jane Muirhead – Perth WA

  *

  ‘My deepest sympathies, although your story is repeated every day for countless old people with ailments that can’t be fixed. Their bodies have simply worn out and the medical profession flock to them, particularly if they are cashed up. Palliative care specialists love them in a semi-vegetative comatose state in a morphine haze, costing the community thousands per week just to keep these poor souls alive with little or no dignity left. My father who has just died barely avoided this fate, but my mother, who died of Alzheimer’s, didn’t. The last time I saw her, a frail, sad wraith, with no speech at all, few teeth left and no appetite was in the very last stages of wasting away, waiting for God, but the consultant orthodontist at the nursing home asked my permission to make her a full set of dentures, ($1500 in 1992). I refused, returned interstate and she died naturally seven days later. What happened to “duty of care” and “firstly, do no harm”?’

  Richard van der Molen – Melbourne, VIC & Dodges Ferry, TAS

  *

  ‘I’m a Lifeline crisis counsellor. I’ve listened to many struggling with life. I often listen to paralysed people, with not one single moving muscle, locked inside their bodies, with no cognitive impairment, “talking” through mechanical voices. Poor buggers couldn’t take their lives if they wanted to. When I haven’t heard from them for a while, I quietly, guiltlessly hope that they’ve died, only to be disappointed when I get one of them on the phone again. Of the 2500 or so Australians who take their lives p.a. the highest age-specific category is males over eighty-five. These men never ring Lifeline. I can only think that they’re resolute, and comfortable with their decision. And why not? More than likely they’ve lived full and productive lives. Their partner is probably gone, their own health in decline. For this group there are only a few years/months left. Why should they live according to others’ expectations?

  ‘Is it a right to take one’s life? I believe it is/should be. I reckon your mum was empowered. When people have made up their minds they are often light of spirit, and relieved that whatever suffering they are enduring is about to end. I hope she led a wonderful life. And the older you get, the closer to her in deep spirit you might become. What a good thing!’

  Rainer Jozeps – Adelaide SA

  *

  ‘The attitude (of your mother) would be that she must do whatever was “necessary” and it must be her final responsibility. She’d accept things must be done alone; the sort of attitude that, as the saying goes, “every heart knows its own sorrow.” So you couldn’t really enter into her feelings and she wouldn’t altogether want it either; she’d just hope, even expect, you’d understand. There was neither pure selfishness nor pure motherly love in the action, just doing what seemed realistic and practical.’

  Rollan McCleary – Queensland

  *

  ‘While it is hard for you to come to terms with your mum choosing to end her life on her terms and with dignity, I understand the position that she was in. She was in pain and struggled on a daily basis with no end to her suffering. You mention that she did not want to be placed in a nursing home – who does? I plan to make a “graceful exit” when my time comes. I was diagnosed with young-onset Parkinson’s disease ten years ago at the age of forty-three. Before this life-changing diagnosis I was working full time in a job that I loved. I had a wonderful life with my husband and two children, who were thirteen and eighteen at the time. When I was diagnosed, I promised myself that I would go on living my life to the fullest until such time as life became too much of a daily struggle then I would make a “graceful exit”.

  ‘My first “graceful exit” came in 2012 when I had to cease working due to worsening Parkinson’s symptoms. There is a large cohort of people living with young-onset Parkinson’s disease and our biggest fear is rotting away in a nursing home before we are even sixty-five years old. I know of several people from my support group who are now in nursing homes and they are in their fifties. So for many of us euthanasia is the only way out when the daily struggle with Parkinson’s disease becomes too much. My mum and dad had to spend their final years in a nursing home and I witnessed their misery on a daily basis. Mum had a stroke that left her bedridden and force-fed five times/day by PEG feeding (tube inserted into the stomach); and Dad had vascular dementia – which for him was total torture, being locked up like a prisoner. He starved himself to death. Many brave doctors and nurses will call this for what it is – futile care. There is no hope of a cure or a return to quality of life.

  ‘People in chronic pain and with incurable diseases simply want a choice in how to end their life. There are some people who may well choose to go into a nursing home, but for most it’s a living hell. When I can no longer carry out “activities of daily living and personal hygiene” I do not want to be reliant on care-givers and a burden to my children. Your mum made a “graceful exit” on her terms (empowerment) and because she did not want to be a burden (motherly love) – it was her life and her choice. There is a tsunami of people out there who will choose this path, whether it is legal or not.’

  Gaye Hargreaves – Dunsborough, WA

  *

/>   ‘We share so many similarities surrounding our mother’s deaths. My mother, like yours, chose to end her own life, on her own terms. Exit International, the Voluntary Euthanasia Society et al, exist for the strong. My mum was a strong, intelligent woman for whom independence was everything. She developed intractable pain as a result of a fall, and like your mum, a slow and steady decline meant that a return to any level of comfort was highly unlikely. As one who has gone through what you are right now, I know the following to be true: you will feel sometimes like you are seven years old. Vulnerable and small and infinitely empty. But your children will help you to keep busy and not dwell too much on your sadness. There is always a meal to cook, washing to hang out or some domestic task calling your name. And you will reflect on the way she died and ask yourself, “Was she lonely?” “Why didn’t she tell me?” Maternal protectiveness continues no matter how old the mother.’

  Name Withheld

  *

  ‘My fabulous father has expressed similar views about nursing homes, and the “DNR” form, displayed as a solitary pinning on the kitchen fridge, should spur me to . . . what? Our wonderful, proud parents are of a generation who lived with appreciation, and by a sense of duty. I’ve no doubt your dear mother loved fiercely, and would be so proud of you for highlighting, even in grief, a pressing need to investigate legal options for families further.’