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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Bereft of Words

What do you say when you don't know what to say? When I can't imagine how you are feeling, because I haven't been there yet? When things won't get better and your loss that I am sorry for is a hole in your soul? And “today's the first day of the rest of your life” is a prison sentence?

I hadn't seen my friend in the two weeks since her husband died. His service was canceled due to the ice storm, which further isolated her in deep country. It made me realize the essential function of funerals – a time to get past that first post bereavement encounter, so later ones will be more natural.

So I phoned once her kids had gone home and she would be quiet – and alone. “How are you doing?” And I wanted to know, understand and offer help. But perhaps she would have preferred a lighter note. I only know that until we had spoken as good friends, the elephant in the room would engulf us.

Later on, she said wearily how no one knows how to be with her. “They ask me how I am doing. How the hell do they think I am doing?”

Guilty alongside her friends. I spent the rest of the day trying to think what one can say. It was ironic because I was actually half way through a post about how cancer patients do and don't like to be treated.

It's a treacherous path, between the need to be normal and the specific anguish of her days. Her life will go on – somehow and she needs to be grounded. She needs help, but each time it's given, she feels less in control. We need to help, hence all the baking. She needs normal and we feel crass.

Mike suggested saying, “It's good to hear your voice.” And perhaps that says everything: the acknowledgement of our humanity, recognition of her special place in my life, and my willingness to listen.

 

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What to Say When….

No one knows what to say. I don't when I meet someone like me. Cancer isn't a convivial topic and my mood is assumed to be depressed. When in fact, I would rather you said, “Oh, shit!” And gave me a hug. Which is why I feel the onus is on me to set the tone – and be normal, funny, interested.

What I don't need is the hushed response, the sympathetic lowered glance. The expectation of suffering that marginalizes me, so that now I am part of a different community and assumed to be absorbed by cancer. It's kindly meant, but why does it make me feel so much worse?

It reminds me of Oscar, the nursing home cat, who made his rounds each day. Most calls were quick, but sometimes he would curl up beside the patient and stay – until they died. He was so accurate that the staff would immediately call the family. Why, with those “oh, so sad” friends, do I feel as if Oscar is calling?

What I need are hugs and humour. Yes, I do appreciate your asking and am happy to update you, but briskly and matter-of-factly as if I had a tiresome sprained ankle. Not soulfully as if I have received a death sentence. Because although there's no cure for my cancer, nor even remission, I am still here, alive, rooted in my life and need to feel part of its flow, engaged and still of value.

In fact, life is just as crazy as before, we laugh a lot and daily say how happy we are. We are absorbed in our children's and friends' lives, with another layer now, the nurses who give me plasmapharesis each week. It takes over an hour, so plenty of time to hear their stories. Sometimes they ask my advice and that is more healing than any procedure.

So when you meet me in many forms, as cancer patient or in pain, please share your life, your jokes, your happiness. Keep me in your world. And let me help you when you are down, which also reaffirms my worth. We are both parts of the equation of life – what nourishes one sustains us all..

 

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Only Connect

On my deathbed, I won't be totting up my bank balance, but my family and friends. For it is our connections that make our lives worth while. In fact, social acceptance is so important that our brains register its loss in the same place as pain. A broken leg and a broken friendship fire the same neurons; both are dangerous to us and both need fixing. Our health is interwoven with our sense of belonging.

This rang a bell with me because pain is not conducive to connection – just when one needs it most. Nor is cancer. So at one blow, one of the most health giving and healing gifts of life is removed. As if someone has unplugged me from the world I knew and joined me instead to a theatre of illness and loss. Yes, one sees people: “Are you OK to walk to this chair, dear?” And is helped – with wheelchairs and offers of soft drinks from eager volunteers.

But what we need is inclusion – as a healthy functioning human being. A friend blogged, “I wish my mother saw me as me, not her crippled daughter.” Oh, yes! I don't want to be “poor Jane” Which is why my instinctive top priority through both the years of pain and now cancer has been morale. To be in the best place psychologically that I can be.

Back before my back surgery when I was in a wheelchair, I learned that as long as I behaved like a whole, cheerful person, people would respond to me and not the chair. Which is probably why now I determinedly greet doctors and nurses as myself and not as a patient. There's already the imbalance of a doctor half my age calling me by my first name while I respectfully call her doctor. If I am Jane, then I will be Jane who greets them cheerfully, knows about their kids, makes a flip remark, who is purposeful, cooperative but also taking responsibility for my care.

It is why answering an email, I always talk first about them, later about me. Why I am determinedly engaged with life: my currency is current affairs and ideas, not backache and blood tests. And it works both ways: initially, I had to make myself be enthusiastic about a friend's holiday or grandchildren, when, in fact, it was rubbing my nose in what I have lost.

And one of the greatest losses is the ability to change mood with activity. What do you do when you are feeling down? I could guess that you turn out a cupboard, weed and plant a garden, go for a long walk or take a dance class. I can't do any of those, nor can my friend whose neuropathy prevents her from even making a cup of tea. She grieves her garden, her best therapy. It's like running (or hobbling) a maze. Each pathway is a dead end. Each small anticipation, no longer a flash of joy, but a small bereavement.

Needs must. I found that I could change how I feel from within. I don't need distraction, though it certainly helps. Making the best of it has genuinely made life better. I am pleased about my friends' vacations, grandchilden and meals out. I know their pleasure and remember mine. It is more about someone being happy or excited, pleasure that joy exists, rather than that it is my joy. My efforts to relate as whole not broken are helping me to heal.

 

More info: Social: Why our Brains are Wired to Connect by Matthew D. Lieberman.

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Why me?

“Why me?” A question I have never asked before – I always thought “Why not?” But this time I did. When we went under a tractor trailer last month.

We were driving from Kingston to Toronto for a second opinion at the Princess Margaret Cancer Centre otherwise we wouldn't have been out on such a rough day. Suddenly a tractor trailer in front of us jackknifed, crossing all lanes. Another truck on the inside lane blocked our escape to the shoulder. Mike, pilot's training to the fore and memories of skid school twenty years ago, braked as much as he safely could and when a crash was inevitable, swung the car to the left to avoid a head on collision. The right was blocked by the truck.

So I took the blow. The passenger right corner hit, breaking the windscreen, passenger window, roof and door. The blow was seismic – a surge of energy burst up my spine. We were under the trailer bed. Then the truck alongside us hit the trailer as well. Another seismic surge. The air bags didn't go off – apparently we hit the trailer at the wrong angle.

Mike was able to back the car out and stepped out unhurt. I was trapped with my already chronically damaged, fused back. There were cars backed up for miles. And I was the only one hurt. So, yes, why me? Why now, when I am on chemo and really don't need my chronic pain upped as well. It is being a very slow recovery.

So, last night, I lay unable to sleep, buzzing with steroids and my back on fire, listening to the plaintive voice in my head. And decided I didn't like it. I could hear its tone, whining, unable to pull itself together. I don't want to be that person. So what to do? Gloom was like a thick blanket, trapping me in inaction and despair. So I need somehow to separate my real self from the voice: isolate it and name it – Patty (for pity party). Just the simple act of naming disconnected me from my engulfing misery, which now became its own glum cloud.

Then tell it I don't want to listen. I could hear the despairing conversation, but was now outside with a choice. “Shut up, Patty. I am not listening. I will not listen.” Where's my normal, cheerful voice? Drowned out! I chose to dig it out and hear it. It was well hidden, dowsed by Patty, but a shadowy presence. Just a vestige of my normal present self. “Who do I want to be?” I asked, like a drowning person clutching a fractured straw. And the feeling slowly grew; Patty shrivelled – and I slept.

 

 

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