Welcome

I am writing this for anyone who, like me, has been pitched into a life-altering situation.   For me, it has been chronic pain, but the same issues face all of us whose lives have been dramatically changed: how to make sense, find psychic strength and hopefully improve our lot.   But the path has been more than coping – it has been discovery and often joy.  Thank you for walking alongside me.

 

 

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Sweet as a Baby

Information comes in the weirdest ways, which makes me believe in coincidence or at least some greater intelligence.  In “Letters to the Editor” in the UK Telegraph, there was, as always, discussion of the faults of the National Health Servuce.  In particular. Dr. Andy Ashworth wrote about an anti-anxiety technique he teaches in his practice.  It works, he says, but he can’t take it further because of bureaucracy.

So I googled it.  And found a You Tube video.   It looked simple and made sense, though I did get mesmerized by his pink tie.   With cancer, there’s a smorgasbord of worries: my CT scan, how to ask for a dosage change without alienating my doctor, am I handling it OK with my friends?  So I am up for a new idea.   Why not give it a try?

 Very simply, when the amygdala is fired up and stress chemicals fizzing, look up and to the right – or up and to the left.  One will work better for you.  With me it is the left.  Half a minute and a gentle peace flowed through me.  But how and why?

The idea comes from watching babies self-soothe.  Cuddled against you, bathed in oxytocin, your baby looks up left or right at your face – and quietens.   That is how we instinctively try to calm them.   To my surprise, there’s a neurological explanation: the fourth cranial nerve is activated by eye movements upwards; the fifth by eye movements in towards the nose.   So up and to the left activates both nerves

Their control centres are in the automatic brain.  And between them is a calming centre, which activates the parasympathetic nervous system and switches you away from fight and flight mode.

So how I use it, say before sleep, is to imagine a large clock face in front of m, the width of the room.  Look at either 11 or 1 o’clock for about 30 seconds.  Eleven works best for me.  Meanwhile, making sure to breathe deeply and slowly.  Finally, I imagine either blue light or warm honey flowing from my crown throughout my body.
 
More info:
 
 
Baby-Gaze: a Neurobiological Method of Anxiety Relief in Trauma – link
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Steering on Steroids

Steroids actually make me go to sleep to my great surprise – initially. During the day when I want to do things, I am curled up with an audiobook that comes and goes as I drift. It makes for an interesting narrative. “They were looking into each other's eyes and now they are rodding the drains?”

But come night, I am alight. My body is wired and the cat complains. So how to calm down enough to sleep, bearing in mind I gave been prescribed temazepam, which isn't making much difference. Thoughts come in, disconnected and inconsequential: supper tomorrow, lists, appointments, remember …. On and on, they dart in, never finished, never parked. Well, I thought, let's lick this. It may work other times as well. Insomnia is a major complaint and most people say turning off thinking is the problem.

Get rid of the cascade of irrelevant thoughts. Mindfulness has taught me to observe my thoughts, though I don't think they envisioned this frenzy. I retreat into my self, that quiet place that I believe is me. And from that vantage point just watch the thoughts swirl like falling leaves. Gradually, they quiet.

Next my body, which is alert and buzzing. I try a technique learned years ago from Eli Bay*. He allowed me to use it in my stress workshops, so I feel it's OK to share here. Very simply, imagine your body filled with orange light and all your stress as black filings floating around in it. Gather them all together and let them all together with the orange light flow out of your fingers. Refill your whole body with relaxing, calm blue light. Or otherwise imagine all your worries gather in the palms of your hands, feel them get warm – and let them go.

Then I moved on to progressive relaxation, working up from my feet, imagining them heavy and warm, my image is “filled with warm sand.” And finally imagined warm honey flowing through my body. Not sure why as I don't like the taste. But it didn't take long and it did work till I woke at 12.30 and dozed listening to an audiobook the rest of the night.

Today, despite lack of sleep, I am energetic and get a huge amount done, which is really useful as the next two days will be deep bone pain from my Monday chemo injection, which takes a few days to hit.

The steroids aren't as bad as I was warned. According to my chemo primer, I could be burping, farting and hiccuping while bouncing off the walls with mood swings. Mike has been watching expectantly and it has really been rather dull.

 

More info:

*The Relaxation Response – Eli Bay. Courses, tapes etc. – link

 

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Swings and Roundabouts

The science is beginning to confirm what we have intuitively known all along:

we are greater than what we have been told.

We are not just a skin-encapsulated ego, a soul encased in flesh.

We are each other and we are the world.

Charles Eisenstein

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“I breathe in; you breathe out.” The renal unit parking lot in the rain is not ripe for philosophical thought, but as we scrabbled in for plasmapharesis, another couple came out. Probably dialysis, I thought, looking at the time. But the feeling of connection was strong. Your day may be good; mine lousy – or the other way round. That's the swings of life: one up, one down.

More and more I realize that we are not islands. The best of us is part of a greater whole. Evil is rooted in separation. When we see the world as “other”, it becomes hostile, dangerous. Then we protect ourselves and our small group, we hoard, we buy guns. But when we see “us” not “them”, life is suddenly generous, for we have everyone's good fortune to be grateful for. And that spills over into compassion when one of us is hurt.

That day I had a good session. The woman next to me was down: plasmapharesis five times in a row. “I have had a transplant – this may be rejection.” Another time, I heard myself saying to a surprised patient. “You are lucky!” To have an indolent cancer; mine is more of a sprinter. Yet she can't lift a cup of tea because her hands shake so badly. Up and down. One day joy, one sorrow. I console myself that when I am down, the swing will be up somewhere for someone else. It seems important, not that I am happy, but there is happiness somewhere.

That as I leave life, others come to whom life is hopeful and fresh. Like the spring leaves on city trees, that later become sad and tired. Somewhere, there is always a child and wonder.

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While waiting I answer an email, “Venice sounds a magical trip. Am so glad you enjoyed it.” It is my favourite place and I doubt I will see it again, but each night, the lights go on in St. Mark's Square, the students chatter on the steps and the orchestra plays. Last time I was there, I stood in tears of sorrow and delight to the strains of, oddly, New York, New York. I won't be there, but someone will – and that is enough.

 

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Odd Woman Out

My memory of the royal wedding isn't the dress or the kiss. It is Meghan's mother, seated alone and dignified, watching her daughter leaving her world – with a quiet grace.

England put on its best: guards, horses, the aristocratic and the glitterati. And she sat composed, like a dewdrop in a fireworks display. To me she was the one with class.

Why, though, didn't someone sit with her? I know it is protocol to divide the guests into bride's and groom's sides. Harry's was crammed with “names;” Megan's had only her mother for family. Why didn't they say to hell with the rules and go with compassion, which my mother always taught me was the heart of good manners? Why wasn't she seated with the royals? Perhaps next to Prince Charles, who showed touching kindness to her? Why wasn't someone deputed to look after her? Protocol also decrees that the groom's father arms the bride's mother down the aisle behind the happy couple. But Charles had Camilla on his other arm. Camilla, according to protocol should have walked behind on Meghan's father's arm. As he wasn't present, Prince Andrew could have taken her.

Anyone who has ever been the outsider, who has ever watched the “in” group chattering, while we stood apart, trying to pretend we don't mind, will feel for Doria. The royals are the uber in group. What I want to say is that Doria outclassed the lot.

 

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I will Love the Light for it Shows me the Way

“Can you see the light? Go towards the light!” How else can you send your dying nine-year-old son into the unknown? Claire Madison's son Ben, a hemophiliac, caught AIDS from a contaminated blood donation. How to prepare him? How to relinquish him?

I read her account years ago, and that sentence remained in my heart, “Go towards the light.” I had read about near death experiences (NDEs), but they hadn't resonated, so when I read Sam Parnia's account of one of his patients experience, it gripped me. Here was a doctor, a scientific observer, telling what his patient, Joe Tiralosi, remembered from his 47 minute death, before his heart was restarted. Joe described “encountering a luminous, compassionate being that gave him a loving feeling and warmth.” And this encounter changed him going forward, as it does so many NDE-ers.

So I continued reading Sam's methodical explanations of the physical process of death, shot throughwith these experiences of light and redemption. He did not find a mechanical or neurological explanation; in fact he was able to explain why such theories don't fit. He saw clearly that there is a coherent self that is present even when the brain is no longer firing.

This I find a great comfort. It is disheartening when I read neuroscientist's flat assertions that we are a bundle of chemical reactions, in fact not one but multiple selves (often fighting), spinning on an uncaring planet. I can feel a core “me” which connects with a friend's core “me”. I can feel that you have a different flavour from me and that characteristic signature remains the same. If I meet you again after years apart, we pick up where we left off. I don't find that bustling, busy Brenda has morphed into an obsessive stamp collector.

So our core self goes forward. It can see and reflect and remember if it returns. Several patients reported the life review. Judgment day? Apparently not. It seems that we see our lives from both our experience and that of those we have hurt. But we are the jury. We see the whole without our ego's reframe. The benevolent presence is there, accepting and comforting. So different from the Old Testament God of my fchildhood.

Sam has researched many cases and repeated stories of light, love and acceptance. The only accounts of fear came from resuscitated suicides. As I muddle my way through cancer and a shortened life expectancy, I have prayed, but from below, so to speak. I had to be good enough. I seem to be swatting rather hopelessly for an exam. Now I glimpse a source of warmth and good will, a kindness. Since reading Sam's account, I have tried to be open to and perceive this presence.

I feel less like a dog anxiously placating and more like a cat purring in the sun.

 

Go Towards the Light – TV movie (1988)

Erasing Death: the Science that is Rewriting the Boundaries between Life and Death by Dr. Sam Parnia and Josh Young. Dr. Parnia is the director of the AWARE study on awareness during death and resuscitation.

 

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That is the Question

Happy we live in Canada. We have assisted dying, not usually on one's to do list! There's a big argument going on in England at the moment, where Noel Conway, an ALS sufferer, is legally challenging the ban on physician assisted “suicide.” Note the emotive switch of “suicide” for “dying.”

One argument put forward states that allowing the sufferer to decide when they have had enough “tacitly or even overtly tells that person that we do not value their life. It is a line we should not cross.” I read it directly opposite: it is because we value each person's individual life and it's quality, that we should allow them the dignity of their own judgement.

The origen of the current law is a religious belief that life is god-given and not mine to cast aside. Suicides were not allowed burial in consecrated ground. I do personally believe in God, but not in an orthodox setting. My God is a strength and comfort but not connected to a specific orthodoxy. And I don't think for one minute would want me to suffer an unbearable death, but would welcome me home. However, my beliefs are not the point. They are mine alone and can't be extrapolated to you or anyone else. They certainly don't justify keeping an unwilling atheist in agony.

Ironically, in my home town here in Ontario, although we have assisted dying, it is not available to you from palliative care, which is run by a Roman Catholic hospice. You have to be taken to hospital – a fun last trip.

Of course, we need protections built in for the vulnerable. No one would deny that. As George and Shirkey Brickenden found when they asked to die together, safeguards were sturdily in place. After 73 years of happy marriage, they were both within months of death, hanging on desperately so as not to leave the other alone. The law was merciful to them and they died together, holding hands.

The handicapped see assisted death as a threat to their value as individuals. Ing Wong-Ward speaks of her terror of a “death date.” Oddly enough, I feel we err in the other direction too often, doing too much for too long.

Assisted dying is a choice, not a sentence. We should allow it precisely because we value each individual's life journey and contribution. Because we trust their judgement and values we should honour them in the deepest manner: allow them to decide their final moment. I pray for Noel Conway to be allowed that choice.

 

More info:

Listen to this, from the CBC Radio show The Current:

'A compromised life is worth living': Why Ing Wong-Ward is living with dignity, for her daughter

Ing Wong-Ward, the disability rights advocate, was diagnosed with colon cancer over a year ago. Now in palliative care, she is fighting to make her remaining time meaningful — and to help others to do the same.

'There was no hesitation': Why a couple married 73 years chose doctor-assisted death together

 

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Locked into Life

“Jane, your life isn't worth living.” It was not a comment but a statement by my cousin. It was Boxing Day and the family were gathered at my aunt's in England. My back was particularly bad after the flight and I sat back in a zero-gravity garden chair we lugged everywhere with us. Since my back surgery, I can't sit upright long. Everyone was eating my aunt's goodies – except me because I am gluten and casein intolerant. I had brought supper in a plastic box. My immediate response, “Oh, Ann, but it is.” And it came from my heart. This was before incurable cancer was added to the mix, but my answer would be the same today.

So when I read about Shirley Parsons who has for fourteen years been locked inside her paralysed body, moving only her eyes, her words struck deep. In reply to the question how happy is she compared with her life before as a wife and lawyer, she says “… rather bizarrely I think that I am happier. Before the stroke my life was noisy and hectic but now most of the time it’s quiet, peaceful and calm. Over the years I’ve grown accustomed and become content with my life.”

Yes! Of course, I can't claim or imagine limitations like hers. But I am also at peace, content and actively warmly happy. I can't join in many group things like book club or volunteer. My opportunities for meeting people are limited. But that also means I have shed what a friend calls “the shitty friends”, those who gossip, complain and pull one down. Anyone who makes the extra effort to be my friend has a loving heart and an active mind.

When the glitz and crush of modern life is out of bounds, then there is space for beauty and peace, time for good chats. On the days my back is on fire and I lie on heat, I call my girl friends and we really talk about what matters, what hurts and what interests us. I have made some amazing friends through cancer. The good thing is that we don't have to put on a show – rather like not needing makeup. We understand deeply how the other is – and we gave reached into our depths to find courage and raison d'être.

A boy with cerebral palsy once said, “The good thing about my CP is I only see the kind side of people. That is proved to me every day. Locked-in people report a good quality of life. Those who suffer catastrophic events return to their happiness set point within three months. Suffering brings its own blessings. I hear this so often from my friends. Every hard thing that has happened in my life has widened my understanding of what it is to be human – and given me tools to reach out to others.

This morning, a neighbour ran out in her nighty to ask Mike how I am doing. Yesterday, we bumped into a neighbour who was working on his house. He paused, dusty and sweaty and asked anxiously how I was doing. I was touched; I didn't know he and his wife knew. “Really all right?” His eyes checked my face. “You're one tough lady.” I hugged him, dirt and all, and felt him kiss my cheek. When we got home, there was a pot of daffodils hanging in a bright bag on the door. That's what makes life worth while.

 

More info on Locked In Syndrome

Daily Telegraph article The Happiness of Locked-in Syndrome

 

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