Religion and death

It is at times of death that religion has its greatest potency.

It had been a long time since I had been to mass. As I listened to the liturgy during my sister’s farewell, I could hear the rhythms of the service in a way I had not as a regular attendee. I heard the constant beats – death, hope, death, resurrection, death, death, death. In the midst of life we are in death. In the midst of death we are in life.

I often think about religion and faith – most often when I am driving and my mind has some time to itself. But on Tuesday at my dear sister’s funeral, I thought about religion in a new way. As something you can only really think seriously about at a time like this, when the veil between us and the enormity that humanity is part of is at its thinnest. I thought, This is when I should think about religion. This is what religion is for – to prepare us for death.

Buddhism is quite overt about this. It has specific meditations where you visualise corpses, skeletons, and remind yourself that all is impermanent. For great practitioners, their final days are spent in a meditative spell, attempting to refine the subtle mind to the point that reincarnation is as conscious a choice as possible.

Christians live in the reality of death and the possibility of hope, through Jesus. I heard the words about sin and redemption and it sounded to me just like the kind of faith that would be born from a culture struggling to assert a moral hold on itself. Christianity offers hope in death. Imagine. What a thing.

Hinduism, like Buddhism, celebrates rebirth and enjoins us to merit during our living years. I don’t know enough about Judaism and Islam to speak about their after-death beliefs, but from my reading of theology and history (especially the excellent book, a History of God, by Karen Armstrong), I know that many faiths embrace mystery and remind us of the unknowable.

Islam, Judaism and Christianity each have mystic practices which acknowledge, through rules and symbols, that God is beyond naming.

I have been through the common journey from devout Catholicism to agnosticism in my life. But for years there has been something hopeless about my materialist worldview, something spiritually bereft which I dismissed as hankering after the community of faith rather than a reflection of some hidden truth I was missing.

Upon reading Marilynne Robinson’s novel Gilead, my views changed and crystallised again. She gave me a way to understand faith as an attitude towards life, and acceptance of mystery in the world we know and do not know. Whether this is hopeful, I don’t know, I couldn’t say.

When my sister died, I had no butterfly on the windowsill moments. I did not feel her leaving me peacefully, farewelling me to go to a better place. I had a very strong feeling that she was confused – that perhaps she did not even know that it was over for her. I spoke to my husband about this, and we cried together. I tried to explain what it made me think – how I could explain this sensation in the material terms I thought about the world. Perhaps people’s souls are the electric frequencies, the patterns of us, which are left even when we die. Our bodies cease to work, but the brain frequencies that made us who we were linger in some sort of sub-atomic way, like a code, like an electric version of DNA for the soul, but far more fragmented, and much harder to observe scientifically. Music resounds with certain frequencies in our head, which is why we experience dissonance and consonance the way we do, and the same is true of stories. Why not then, personalities?

In my nascent theory, this then is the soul – a lingering pattern which eventually, perhaps brokenly, perhaps in perfect form, rejoins the life energy of the universe (wince) for want to a better term – I am still working on that. (Please don’t think I am falling into a mind/body dualist position, which is such a moronically gross concept that I don’t want you to think I am going there.)

The soul is as close as we get to experiencing the unknowable.

In those days after my sister left us, I felt that I could sense my sister’s soul’s confusion. In the hours after she left us, I felt strongly the lack of a cultural ritual which would have let me stay with her body through the night and into the next few days, before her final farewell. We should be able to sit with our loved one, and be as involved in preparing them for disintegration as we want to be. But that is a topic for another essay.

This sensation triggered my theorising. I spoke to my Buddhist monk friend about it. He is the closest I could get to an expert on dying.

He said, ‘I don’t know if it [my feeling] is real or not, but it is all so interrelated, and maybe people who are close to the person who has died can feel it more. I don’t know, but it can definitely help to just keep sending them calm, peaceful thoughts that it is OK to go.’

‘And even, um, information?’ I asked, not wanting to sound stupid. ‘I am not sure she knows she is gone.’

‘Yes, that can happen when people pass away with problems or lack of clarity in the mind, or drugs in their system. I have seen it a lot and it is really, really common.’ This was a relief. Even if it was not true, it was something I could do for her. And who knows? No one can definitively prove there is no such thing as a soul lingering, clinging to familiar matter, waiting for the all-clear to go.

So over the next few days, I sent my sister calming thoughts and most importantly, the information that she had died: that this next journey was hers. Gradually, the sensations grew less urgent, and when the funeral directors collected her body form the morgue. the sensations stopped all together. I do not know what was real or not. As my monk friend, said, It is all so interrelated.

So this is my theory of the soul, and I am still working on it. I can say that some sort of spiritual practice to prepare for death is necessary for me. I don’t know what form it will take. All advice welcome.

 

 

Grief and Joe Hockey

Grief is like the ocean. It comes in waves – some seem angry, some wash ashore with peace in mind, some seem to be trying to return to the centre of the world as if they could reverse the tide and tug of the moon above.

I miss my sister. It might seem strange to miss someone who could not speak for the last two years of her life. I missed her then too, but now I miss her in the bleak, dreary fashion of knowing I can never sit and hold her hand and feel her kiss on my cheek, or see her questioning glance.

I miss hugging my sister. She was the best hugger in the world, I think, even after her time in the aged care home meant she could no longer raise her arms in response. I miss her smell, of clean clothes and familiarity. I miss her orbit – when I entered it on my short visits to Brisbane, I felt I had come home.

Coming home is an instinctive laying down of burdens, shedding the external skin and putting on a far more comfortable layer. Even if we play roles with our loved ones, they are roles so ingrained we need not think how well we are playing them. This was my peace with Ally.

Not that it was easy to visit her. Every time I left her I felt a tearing sensation, and would cry a little, grieving the relationship we could not have, the life we did not lead. Some of this I blame on bad luck, illness. Some I blame on the system, because that is where the blame squarely rests.

There is a lot of futility in the disability system of Australia. My sister suffered a mini stroke when she was in compulsory transition care which caused or at least significantly sped her demise. Let me explain, because it will seem unreal to those of you with no experience of the system.

Ally kept having falls, and she could not be cared for at home by my mum any more. She could still speak, eat, walk (with a frame or stick). She suffered dementia, but she had periods of lucidity every day and in her own reality, she was mum’s carer, not the other way around – and in many real ways she was, giving my mother purpose and meaning.

Finally the disability system accepted that she really needed external care (after years of trying to get my sister an adult lifestyle package to prevent social deterioration, the system responded to a crisis which, who knows, may not have been so severe if they had acted sooner.) But to go into a care group home, she would have to first stay in transition care for several weeks – for some unknowable reason she could not go straight fro her own home.

When my mother and older sister took her to the transition home, Ally said as clear as a bell, ‘Don’t leave me here.’ My mum tried to tell her it was a holiday.

Ally started getting a rash and the carer gave her Phenergan, which was contra-indicated with Ally’s medication. Let me repeat this: the carer, whose job was to care for Ally and take care of her meds, gave her something which she would not have given her if she had been doing her job with a basic level of duty of care, and THEN (we believe) LIED ABOUT IT. Ally went into a deep sleep from which she never recovered. Days later she awoke, but could no longer eat or talk. We entered into a series of complaints, mostly concerned that this would not happen to others. The carer either deleted or did not enter the Phenergan in the record she was supposed to keep. The complaint unit is a part of the disability department itself. We never stood a chance.

Ally could still walk and move her arms and try to say mum. But time spent in the under-resourced and unsuitable system of aged care soon took care of that. After several months she lost even these abilities.

Finally a year later we got her into a beautiful group home for high care needs, with excellent care workers. Ally revived – she would never regain significant physical functions lost to neglect, ignorance and a broken system. But  she started to sign with her hands, try to help with her care, go on outings, and generally engage in living.

But the lack of movement which resulted from the aged care meant that the fluid gathered on her chest and would not disperse. It was a matter of time before pneumonia would carry my sister away with it.

I hoped for a few more winters. I got just one.

It is natural to feel angry when someone you love dies. I don’t feel particularly angry as I write this. Mostly I feel tired. There are things we can do, things we can fix. What our politicians have forgotten: the reason to keep somone alive and well is not how productive they can be in material terms, but because we love them. Our politicians forget how senselessly unproductive so much of being human is. Grief itself seems a useless by product of attachment to an economic rationalist. Love too, a useful emotion only insofar as it creates a will to breed for the labour force.

But humans are not like that. I think it is time our treasurer Joe Hockey loved someone whom it is absolutely economically irrational to love; someone like my sister Ally. I mention Joe not because I don’t know that disability services are a state matter, but because for me he represents all that is ahistorical, morally bankrupt and dogmatically obtuse about the economic irrationalism of our times.

That said, I could do an impact evaluation for you, showing you the lives Ally touched, the people she inspired and the value this created for the economy. I could really do that. But why? If you have ever loved someone, you know that all the other stuff doesn’t matter.

If the system denudes us of love, derides us for our essential humanity, then it’s time to overthrow the system.

Let my grief come, let it wash over me, salt my skin with the tears of loss, chafe my soul clean. I grieve someone who could not speak, or swallow, who could not walk or  move her arms. I grieve someone who could love, right to the end. When his time comes, will Joe Hockey be able to say the same?

 

 

Farewell to Ally

Eulogy, 28-7-2015

Although I write words for a living, I don’t have the words to describe how I feel about my sister. I’ll try my best. I loved her and she was a part of me, and she always will be.

Ally was there from my very first days, and she decided to be the best big sister ever – and as we all know, Ally stuck to her word.

I learned how to be in this world from my sister Allison. She was upright in her sense of right and wrong, and judged herself by the same high standards that she held for others.

From Ally, I learned how to be good (even if I have not always heeded the lesson). I learned that it is more important to be kind and humble than rich or famous. Ally’s role models were the brave yet humble women of history, the ones who helped behind the scenes – Mother Teresa, Saint Bernadette, Our Lady. My role model was Ally, who served as a kind of summary of all the virtues for me, a shortcut to God.

Debbie and Dave have talked about what an inspiration she has been to everyone who met her, and what a bossy little sister she could be. As we grew up and Ally got sicker, in some ways it seemed that our roles reversed. But on an important emotional level, Ally was (and will always be) my big sister. You see, I knew she was always there, a blanket of goodwill, shielding me from the greater sufferings of the world – with Ally as my big sister, I could take love for granted – what a privilege – I would never know the absence of someone willing to fight in my corner until their last breath.

Indeed it was from Ally that I learned how to love. Love big, love wide, arms open to hug the world.

From Ally, I learned how to dance in shopping centres, how to be silly in hospital wards, how to laugh loud in the wrong parts of movies and not care what people think, and then discovering that they are laughing with you.

Ally, you have left a gaping hole in my life where the rainbow used to be. But I promise to colour my world brightly, a riot of colours, a veritable burst of sunshine on every day no matter how grey.

Whenever I or others visited or called Ally, she would always ask, ‘Have you been behaving?’ Ally, I promise you that the answer will always be a resounding, ‘No.’

Ally-boot, this is our lament, this is our lovesong, this is our leavetaking. On behalf of all of us here today, thank you for spending your time here on Earth with us, helping us to be our better selves, showing us how to delight in the now, reminding us to think of others first, embodying Christ in everything you did, right to the end.

Wherever you go next, I know that you will share your love and radiance; you will pepper the ground with flowers wherever you walk; music will emanate from the air around you; and all will be dancing with you to your songs. You can smile now, if you want. The boat is all set to take you across calm waters now honey. Go with our blessing and our love, Ally.

Blood on Tony Abbott’s hands

Maybe not yet. But calling the tragic events of Sydney yesterday “politically-motivated violence” is like asking people to start racial riots.

This was an act of a crazy guy. A nut job. A sociopath with a criminal history.

Calling this politically-motivated violence is like calling the Cronulla riots an act of patriotism.

Criminals, not terrorists.

But our prime minister’s words will light the keg. There will be racial riots again in this town. MORE PEOPLE WILL BE HURT and it will be our prime minister’s fault.

My question is: where did he get the gun? There seem to have been a lot more guns around in violent crimes in the last two or three years. Could the prime minister perhaps do and say something useful about that, rather than torching the tinder and watching us burn?

 

 

Discrimination

Something pernicious is afoot. It’s not a conspiracy; except that it is.

As many of you will know, I research for a living. I spend many of my waking hours talking to people and then thinking about what they said, what it tells me about their views of themselves and the world, and what that might mean for my clients.

In my early “career,” I worked as a policy adviser in the Office of the Status of Women (another Whitlam legacy, already dismantled). So the term “structural discrimination” is not unknown to me.

So why has it taken me months, possibly years, to remember those two words and apply them to some of the equity issues I see arising in the social research I do?

Naturally my ageing brain should take most of the blame: those two words have probably been thoroughly buried under mounds of appointments I have missed and kindy costume days I have failed to remember (luckily, my daughter dresses as if every day is a dress up day).

But you know, for fun, I like to read about the history of neoliberalism (I don’t get out a great deal). I enjoy big words. I like abstractions. Give me a pithy phrase to explain why it is so hard for minorities or women to take advantage of opportunities, and I will use it ten times in the next ten minutes.

So why did it take me so long to remember that unintentional barriers to government services, employment, and justice are not just oversights by well-meaning people; they are actual, real instances of “structural discrimination”?

Here is my theory.

I could not remember those two words, “structural discrimination,” because we don’t talk about discrimination at all any more. On the rare occasion that one of the Human Rights Commissioners is on the evening news, just seeing the word “Discrimination” in their job title makes me sub-consciously cringe.

Implying that one social group could dominate another, is to contradict the fundamental rhetoric of neoliberalism: that everyone can make it on their own merits, and if they don’t it is their own fault. Structural discrimination does not happen; people simply fail to sort themselves out.

The word discrimination, like feminism, has fallen out of common usage as the neoliberal agenda has gained ground. (An interesting aside about neoliberalism: despite the rhetoric that greater labour market flexibility will lead to greater prosperity, in no single country has this been found to be true for the common man or woman. By contrast, corporate wealth has most definitely increased. See? I did read the first few chapters of Piketty).

People don’t want to feel like victims, which is fair enough. But it denies a simple truth: sometimes, we are.

Of course, you can turn yourself from a victim into a fighter pretty bloody fast. But that does not change the fact that bad shit happens to good people. Sometimes it is unavoidable: a car crash, a cyclone. When it is the result of discrimination, it is totally avoidable: a government service offered only in English; a continuously renewed contract which runs out just before you (publicly) announce you are pregnant.

But you can’t avoid it if you don’t name it.

“It” is discrimination. “It” is accepting that you cannot always win on your own merits. Sometimes the cards are stacked against you, and you need someone to change the deck.

It helps to name things for what they are. That way organisations, politicians, and well-meaning people who may simply not have thought about it before, are confronted with the consequences of their in/actions.

So come on, friends. Let’s do some naming.

1. The Gang of Breastfeeding Nazis Calling Themselves Community Health Workers

I find it interesting that the last 15 years have seen the decision not to breastfeed equated practically with child abuse. There are some (actually fairly minor) health benefits proven to be associated with breastfeeding (See “Is Breast Best?” for a great summary). But what about the economic, psychological and societal benefits of having women back in the workforce if that is where they want/need to be? Something is going on here. When government-supported services for new mothers push you towards a choice, on slim evidence that it is actually worth stopping your career for, then I think you have to question what is happening. I blame no one. I have not done the research. But I question it. I certainly question it.

2. Career Opportunities Which Require You to be Single and Childless

Never overtly, and often not even intentionally. But if an opportunity has no flexibility about working near or from home, when the work would lend itself to it; if an opportunity means you lose your childcare, or you cannot do the childcare pick up or take care of your ageing relatives for extended periods because you have to be away; then the providers of the opportunity may be structurally discriminating against you. Even if they don’t mean to do it. Even if they would be horrified to hear those words applied to them.

3. A Tertiary Education System With Uncapped Fees

Since Whitlam’s passing, we have all been keenly mourning Australian society as we knew it. Good-bye, meritocracy; hello uncapped fees. This will structurally discriminate against poor people and retain power in the hands of a few.

4. A Petrol Excise That Disproportionately Discriminates Against Poor People

That was a classic, wasn’t it? Joe Hockey trying to explain that rich people would be more affected by a petrol tax, because they had more cars; as if he had never heard the concept of proportion. The Treasurer of the country.

5. Negative Gearing

Housing prices and rental prices will always be too high for many because of a tax system structured to discriminate in favour of the middle class and against those trying to get in.

I could go on. But over to you. Name it.

The role of art in a post-religious world

The first time I tried, and failed, to remove myself from God, I was 10 years old. I lay on the carpet, playing with the dust motes in a shaft of light which came in through a sneaky gap I had made between the heavy, dark pink drapes my mother kept closed all year around. i wondered if they were atoms; if I was seeing the smallest building blocks of matter. I dared myself. There is no God. You don’t believe in God! The world tipped sideways (I rolled on to my back and pushed myself up). It was the scariest thing I had ever thought, and I had not left the living room.

My next crisis of faith was when a documentary came out about the Dead Sea Scrolls. I was 11, just shy of my Confirmation, which is a Catholic event where you, as an adult, confirm the faith that was first confirmed on your behalf when you were a baby, your godparents speaking for you.

At your Confirmation, the bishop asks you, “Do you reject Satan?” And you say, “I do.” They really ask you that, in front of the parish. You stand up in your white dress with a red sash across your chest, representing the Holy Spirit, and you say that you reject Satan and turn faithfully to the gospel. You will have no gods but God. You believe in Jesus Christ our saviour. “I do.” “I do.” “I do.”

On the day of my Confirmation, I first encountered the dilemma of hedging your bets. I wasn’t sure about God, ever since that documentary (it had been on Channel Seven, which should have been enough to discredit it, as we only watched the Channel Nine News). My parents sent me to bed before I could see it, but I had seen the ads, I had heard the introductory statements. “Was the face of Christ really imprinted on the Shroud of Turin? (Yes, that is a real thing, not something from a Tolkien novel. Where do you think fantasy authors get their ideas?) “Jesus spoke Aramaic.” “These Scrolls reveal the shocking truth, buried for hundreds of years, about the man we know as Jesus.”

None of this should be especially confronting. Yes, Jesus was a Jew, and he spoke the local dialect. But – hidden scrolls! A secret language! What did they reveal?

I knew what they revealed. Jesus was not God. Jesus was just a man. I went to bed, scared.

On my Confirmation, I could feel the lie on my tongue, a physical presence. If there is no God, I reasoned with myself, then I am not going to go to hell for this. I did not want to disappoint my family (Allison), and I did not want to be embarrassed by refusing the bishop’s blessing. Things were a bit muddled – I saw myself, just like a Christian hero, refusing to proclaim my faith, prepared to be ashamed publicly for it. i wasn’t an idiot. I knew I had it the wrong way around – you can’t be a Christian hero if you don’t believe in Christ.

But this is what it is like, when you become post-religious. You still have all the trappings; the inner quest, the need, the longing for closeness to the divine love, the love which encompasses and frees.

Frankly, I had never felt that love. I was 12 years old. I had no idea what love like that would feel like. I tried to imagine it, there on my knees, eyes shut tight. I felt it as a warmth, a smile in my direction from a consciousness as all-enveloping as night time.

I lay in bed in the room I shared with Allison. I thought about eternity. It made no sense, unless it was actually about right here, right now in this very moment, that eternity was possible. And eternity would be like ecstatic fusion with Jesus. It could happen at any moment, that was the main thing. And hell? If God is love, I surmised, then hell would be spending eternity – a forever, timeless moment – feeling how you had isolated yourself from love.

You can work things out for yourself, even when you are 12 years old. I am pretty sure I figured out the meaning of life one night, as I lay in half sleep. But I was too comfortable to write it down and by morning, it was gone.

Later, in my teens, I returned to God with a vengeance which I wreaked upon myself as punishment for all of that disbelief. While other ninth graders wrote Led Zeppelin and Metallica in heavy black Nikko on their canvas backpacks, I wrote “Life is God” on the outside flap, where everyone could see it, and “Individuality” on the inside, so long I had to squish the “ity” together at the very end. I was a missionary, just like the boys smuggling bibles into communist China: Springwood High was my China.

One day, as I waited outside the library with my friends, three twelfth grade boys found my bag and saw the slogan. They pulled it down and kicked it around on the ground, laughing. I looked straight ahead. My friends, nervously grinning, looked at me. After the boys left, we did not talk about it. Even now, when I do not believe in God, when I have developed a certain fondness for my young, evangelical self, I have never forgiven myself this sin.

Art in a post-religious world. Art in my post-religious world. Art is all I have left. It is the last remaining passage into mystery; the only breath left uncounted. When I hear a piece of music which touches me, I go beyond my emotions and my personal pathos, and I head out into the love that god was meant to be; that all-encompassing pain of knowing you are everyone’s mother, that every single bogan and arsehole in the world is just like you.

As I have said before on this blog, the art I am most familiar with is creative writing. When I read a book that I feel grateful for, it is because the writer has connected me through themselves to the world, but without creating a physical presence in my life, a presence which would demand and require. Instead, the writer lets me be. It is always a surprise, which adds to the gratitude. If you expected it, you would be disappointed.

When else do we get a sense of connection so deep that it transcends our individual selves? Churches are peaceful places. But they only create a sense of un-belonging for me now; a quaint reminder of something I will never have again. In short, they hurt to be inside.

Art (not all art, but some art, the stuff which you recognise as a gift) on the other hand, is not there for me, it is there for everyone. It is where the individual and the group meet, the ultimate fusion of the human condition.

I think that God is the result of society’s need for cohesion in the face of bigger enemies. She has an actual place in our brains, which scientists sweetly call the God-spot, an evolutionary result of needing to balance the survival of the group with the survival of the self. Humans’ two greatest assets, the key to our dominance – our reasonably well-timed selfishness and selflessness. The group and the individual, always in tension with each other.

Now, as religions fade and politics is a sham of self-interested groups, as public spaces become advertising arenas, art unbounded is so very, very necessary. The things we need to pull the pendulum back to the group: community gardens, where we can play out our natural animosity and find our collaborative pecking order. Libraries, where we can feel glad we pay our taxes. Parks, where we can sit with strangers and not feel the need to kill each other. And the excess; the unnecessary; the stuff that makes us laugh and delight. Art. Places where we are safe from the self (our own or other people’s) are shrinking. We need to breathe air into our souls that we didn’t pay for. We need the gift of art to be preserved.

 

 

 

 

 

 

 

Sleeping alone

I sleep alone. I am beautifully, deeply, very married to a man who doesn’t take it personally. I tell people that it is because he is a snorer and I am a light sleeper, both of which is true. But as we all know, there can be more than one truth which relates to an event, either causally or by correlation.

(I never lie. I prefer to call it “summarising.”)

There was one time I remember when I slept with another person. It was 20 years ago and it lasted more than one hour, less than three. It was so completely unexpected – that is not the sort of thing I do. I was the person who could not casually allow a girl or boy friend to crash on the other side of my double bed when I was at uni and everyone sought to be as casual as possible about everything, even big things. (I lacked perspective). I would let them in to my bed, determined to be relaxed, then lie, stiff, alert; for what? A move towards intimacy if it was a boy friend; a call on my duties as hostess if it was a girl.

I don’t remember falling asleep, of course. I remember waking up. I looked up at the ceiling of Frankfurt airport. My friend sat peacefully, my head on her lap, looking around, not in any particular hurry. Multiple miracles: that she was still here, when I had tearfully farewelled her only hours ago, she for the US, me for Australia, our year of desperation (student exchange) over. The things I felt: total and deep peace. I was so completely and surprisingly safe. Wonder: I was completely and surprisingly safe, asleep in the most vulnerable position I could imagine – asleep, in a public place, at the end of happiness, at the beginning of 48 hours flying “home.”

I thought I would curse myself for wasting my last hours with my friend asleep. But I have never regretted it. This miracle. This gift. So many things have faded, but this has not. The sheer, pure wonder and the feeling of waking up, unharmed against all expectation.

I wonder at people who can sleep next to the person they love, every night. I wonder if they wake feeling such deep nourishment every day. I wonder about what I am missing.

I think I should perhaps try again. But I tell myself, and it is true, causally, correlatively, there is never a good time in our busy lives to conduct an experiment which involves losing nights of sleep.

My husband now has a snoring machine, and I have tailor made ear plugs from a cheery audiologist who wished me good luck. Last time we travelled, I slept in the same room and it was ok. It was OK. There was an alertness, but still.

I try not to think about this in terms of progress. And I try not to think about what buried bones make me so alert in my sleep. Maybe nothing. Maybe something. I try not to think.

It was so unexpected: waking, seeing the ceiling, then realising what I had just done. Wonder at myself. Love for her. I only saw her once again in my life. I googled her, but there is no trace. I do not think I will ever see her again.

It was the result of a strange combination of utter exhaustion and bonus time. A gift. Extra, spent in a miracle. Sleep like that is pure luxury: in broad daylight, in public, with someone you may never see again and love desperately because of it. There is nothing of need or functionality about it. It is pure excess, which is why it stays with me, year after year, as close as I have to an experience of mystery, of total surrender, of encompassing peace. Of god.

 

 

 

 

 

 

The Gift

Gift.

I keep hearing the words of gift. Gratitude; generosity, giving, receiving. Love.

There is another layer to the language of the gift. Reciprocity, exchange. Hospitality. Hosting. Obligation and the eternal return.

I think, perhaps, that people know about the rules of the exchange instinctively. In the business world, even men (even men!) understand the implicit rules of the helping hand. You have to be careful what gifts you accept. And how you decline. Best to not be in the line of receiving some gifts at all.

But what about the rules of the gift, sans exchange? The gift, where no one is obliged? Does this exist?

Here is my hypothesis. Yes, they kind of exist. (I wonder if I can say this in my dissertation?)

By which I mean: you can never have a gift without a return. It’s not how we work as humans. See, gifts operate at a primal level, at the basis of evolutionary snake-brain society. Society itself only exists because of the rules of exchange, give-and-take. We all know that when these rules break down – when you cannot trust someone to let you in on the road merge – the skies darken a bit. You start thinking of those other words, the opposite of gift words – social exclusion; isolation; a merciless society.

But humans like the idea of transcendence. We like the feeling of, momentarily, finally, flying.

Enter the gift of art. Art is a gift which is made to yourself at the same time as it is made to others. Art is a “giving-and-receiving,” in the words of sociologists Andrew Metcalfe and Ann Game.

When you make a work of art, you do not demand a direct return. You make your offering and you put it out in the world. You might make money from your art, but this is relevant only to your survival, not to the nature of the work.

I am speaking here about the art which with I am most familiar – creative writing. When you write creatively, you give yourself a gift. Time, permission, space for the unexpected. Something else too. Some sort of essence, a connection with the feel and flow of time and timelessness. And some sort of dispersal of essence; a letting go of the necessary; an unbounded feeling; a recklessness which allows you to fly freely.

The marketplace is there. You pay for books.

But there is the thing which you do not pay for, because it is a human to human thing on the level of the spiritual. It is outside the mechanics of a money transaction, the myth of an objective, measurable reality which can be superimposed onto the sticky, fluctuating relationships between people.

I am talking about the essence of the thing, the thing that you feel grateful for because you did not pay for it. The thing that transcends and surprises you into feeling something you did not expect. The thing which Lewis Hyde, in his book on the gift, describes as that which “revives and refreshes.” Which “has nothing to do with the ticket price.”

When you publish your writing, you can only put out your humble offering and look away. When you read, and you have the experience of seeing something, knowing something, of being powerfully and present to something which you did not expect, then you can only say thank you. Your gratitude overflows, because you cannot repay this gift. And you are not required to repay this gift directly. There is no meanness to it. You have to give it on, by which I mean, now, share it – with yourself, giving yourself the respite to read and perhaps dabble in something of your own, your own gift creation. With others, by offering them this book, or perhaps some other subtler moment of recognition, a smile in the direction of community, palpable or otherwise.

To make a leap (because I can hear my daughter waking up), this is why art and books are crucial to society. This is why we cannot over do the transactional experience of the arts. There must always be preserved the gift. In how we support art creation, distribution and experience. This is why the work of Luke Jarman is so beautifully received. A “gift from the gods,” one member of the public called it in Melbourne when they saw his street pianos appear over night. This is what it feels like to be seen and thanked for seeing.

Art as gift has never been so important before. As religion and other oases from consumption shrink, the importance of spaces where we can simply relate as people has never become so necessary. Libraries, galleries, public festivals; books.

 

 

 

 

 

The black dog

I have always wanted a pet. Ever since my sister brought home Fitzy, the yappy little mongrel, I thought, yes. Finally, we are going to be normal.

But Fitzy was only ever on loan. We were looking after him while my sister arranged to buy a dog which would be an investment. It was called a Shitsu, and she got two of them. I blame the boyfriend.

I remember my dad, throwing Fitzy a tennis ball, and Allison standing back while I circled around the bouncing little bleeder, saying, Here Fitzy! Here! because that is what you say to dogs. Dad was smiling. Mum was inside the house. Things like that don’t last forever.

My depression is not a black dog. Winston Churchill used to call his that. Mine is more of a shadow, an unpleasant odour, something that clogs the pores and the nostrils.

My depression is like this: a weight on my chest, which would move, damn it, if only I had the energy to get up.

It is a vapour, that circles my body and my mind; the hint that life is bleak, that there is no point, that it would be better to just, lie down.

The reason for these gas and fluid analogies: my depression has never been a solid thing, no panting, doleful mutt. It has always been like this: a Geist, a trickster, uncannily able to get into every crack and crevice without saying a goddamn word or opening a goddamn door.

My depression makes me tired.

Here are the things that lift the cloud. I have friends who love me. I have a husband and a daughter who keep me in this world, tethered, so I can’t sink. I have intelligence, and work, and I can exercise and release the good chemicals.

I don’t want to overstate it. But I don’t want to understate it, either.

We can’t have a dog because of allergies. I don’t think it would solve the problem entirely, anyway.

But when I turn my eyes directly on him, my shadowman, he flickers, a wisp shimmering in the headlights. I name him, Ged-like, and he flees for the corners of my ceiling. There he hovers, and lurks, while I get on with living. I can do this, and he says nothing. I can do reality. Watch me burn.

 

 

 

 

Allison

My sister Allison is dying. She is dying at the age of 40 in an aged care home, because the Queensland Government’s disability system is broken.

I always thought that we lived in a country where, no matter what went wrong – if I lost my health, house or job – there would always be a basic level of support; a net to catch me if I fell. I assumed that the systems we have in place, such as health care and disability services, were amongst the greatest successes of a modern democracy.

I was wrong.

My sister Allison is dying, and there is nothing I can do about it but write this letter.

Allison is disabled. She is 40 years old, and she has lived in an aged care home for the last two years. In that time, her neurologist has reported a deterioration in her condition which has nothing to do with the brain damage she suffered as a child. He says that it is at least in part because of the lack of stimulation in her environment.

I have watched my sister gradually lose the ability to move her hands, lift her head, stand and walk to the bathroom.

We have made noise. Youngcare, the national organisation working to get young people out of nursing homes, has advocated with us to the Queensland department of disability services. Our friends and family have written letters to the Minister. Madonna King wrote an editorial about Allison in the Courier Mail, which received over 200 email responses from people around the state, voicing their support and sharing their own stories of loved ones in situations like Allison’s.

My mother cared for Allison as long as she could. She is a war widow; my father was a veteran of the Vietnam and Malaysia conflicts who died of heart disease related to his service more than ten years ago. My family works in public service – teaching, nursing, caring professions. If we could look after Allison, then we would. But her needs require professional support.

So, naively, ignorantly, we looked to the system, the safety net, the social services which we have faithfully paid our taxes towards, the great success of modern democracy.

The system failed. There were literally no places for Allison in disability care. She went into aged care as they waited for someone to die in a disability home and free up a space.

Three months ago we heard that there might be an opening for Allison in a disability home equipped to care for her. But she is still in her aged care home because there are not enough carers at the centre to look after her.

Whilst we have waited, winter has approached, and Allison has contracted pneumonia twice in two weeks because she is so immobile – and that is because she is left in bed or in her chair, with no stimulation.

It is not the aged care workers’ fault. They do their best. But my sister needs to be in a disability home, where there are activities, stimulation. She needs to be somewhere where the focus is on life, and not the other thing.

I am afraid now that, even if the department does find the funding for the carers to help Allison live in a disability home, it will be too late.

What makes a life worth saving? Some might think that it is time to let her die. I feel certain that this is what the government is waiting for. I really don’t think they have KPIs for keeping young people alive in aged care. In fact, one fewer is one fewer in aged care.

I have thought about this for a long time and here is my answer. Allison is loved. We can see her in her eyes, and when she tries to talk and say “mum.” We read poetry and stories to her, some of which she wrote herself many years ago. She runs her fingers across the pages and we know she is reading the words with us.

What makes a life worth saving? Love. It is more than many able-bodies people could claim – that they are loved and loved well.

Please, Premier Newman. Don’t let my sister live, or die, like this.

Since I wrote this, I have had lovely people ask how they might help. There are a few things I can think of:

  • write to the Minister for Disability Services in Qld, Tracy Davis MP, ccsds@ministerial.qld.gov.au
  • write to the Qld Premier, Campbell Newman, thepremier@premiers.qld.gov.au
  • write to your own local member or state Minister, deploring the fact that there are more than 7,000 young people in aged care homes around Australia
  • consider supporting Youngcare Australia, which is a not-for-profit organisation committed to helping get young people out of aged care homes and into age-appropriate disability care

Thank you :-).