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 discover 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.