Living from Above

“It's easier to go down a hill than up, but the view is from the top.”

Arnold Bennett


Blessings sometimes come upside down. Who would have thought that when I learned to live above and beyond pain, it would come in handy for cancer? Not that pain is on the map yet, though I wonder whether my body's being accustomed to pain killers will make things more difficult further down the path.

Enter ACT therapy (Acceptance and Commitment Therapy), which I came across in an article on living in remission. This sounds to the point: I can't change what's happening, so I have to accept. And I can do the second part which is commit to my values, reclaim them from the muddle of emotions that go with waiting (for months) for a diagnosis to be unwound.

It is similar to my efforts with pain: live on a level that is larger than pain – or current sickness. Stop wishing illness away; build a good life with my values in spite of it.

So I try to reclaim that pain-free space, where I can feel the bounty of spirit. In the process it comes clear that we mostly live life's difficulties from below. We are down under, scrabbling and coping with problems that are tossed at us from above, like illness, accidents, job loss, you name it – the rich tapestry of life. Not helped by orthodox religion decreeing these things are sent to try us, for improvement. All this makes us feel impotent and life an endurance test rather than an opportunity.

But supposing we act from above? What if we are coming from a place that is higher and richer than our sickness? How? It is vital to keep connected to our best self, grounded and loving. To remember that what's important is not what is happening to me, but how I handle it. Just thinking this, I can feel the strength of it.

Then I am not being used by life, but life itself is a vehicle I can use well. This changes how I interact with everything. I was reading a calming book to quiet my anxious mind for sleep – acting from below and trying to get a handle. What if I act from above and choose the same book as a treat? Not even a reward; that would imply I am trying to control my mind from a position of impotance. A treat from the strength I already have.

Immediately, my vantage point changes. Instead of fearfully waiting for the results of my CT scan on Wednesday, crouching beneath the inevitable, waiting for the sentence, I am calm and feel the power of choice. Not over the outcome, but over how I accept it. I am no longer a child awaiting a slap from fate, but an adult who chooses dignity – and spares compassion for the oncologist whose day is made up of breaking bad news.

I choose to live from above. The top of the world, not in a cesspit of despair.


Break Free: Acceptance and Commitment Therapy in 3 Steps. A Workbook for Overcoming Self-doubt and Embracing Life by Tanya J. Peterson and Sawn E. Verdin M.A



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The Hand of God


And I said to the man who stood at the gate of the year:

“Give me a light that I may tread safely into the unknown.”

And he replied:

“Go out into the darkness and put your hand into the Hand of God.

That shall be to you better than light and safer than a known way.”

So I went forth, and finding the Hand of God, trod gladly into the night.

And He led me towards the hills and the breaking of day in the lone East.

Learning to live with cancer is not another nuts and bolts problem to solve. No, it is learning to live in the part of me – my soul? – that still has choice, that will have identity way beyond this life. It is relating to life, not through quick texts or irritable dismissal. Nor through a todo list or a traffic jam. These will be gone.

Instead, I try to connect through essence. I listen to music before sleep: simple classical, where each note is liquid beauty. I hear another soul offering his perfection, the one right part of himself, whatever faults he may otherwise have had. The music of eternity.

I can't play or sing, but I can live as well as possible. So that lovingness is my soul music. And everyday I still put forward the prayer: may I be a blessing to someone today? When so often it is answered, I humbly glimpse another's soul.

So I write – perhaps self-centred, but I hope someone following me through this labyrinth may recognize my path and feel comfort.



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Pain-full Life

One of pain's great gifts has been to teach me not to waste energy on rumination, looking over my shoulder or comparing myself with those luckier. Just processing pain takes up brain space and energy; no space left for chewing cud.

Learning to manage my mood has been a great bonus. It is a daily determination, like charting a course when sailing. So pain, oddly, means I live in a kind space, what I call “the beloved.” As my daughter said to me last summer, when my back was pushed to its limits with grandchildren, “You are in a good place, Mum.”

So it is discouraging when yet another expert declares chronic pain is the result our “thoughts, feelings, and resulting behaviors.” Which feels like blame the patient: if I could crack jokes and be life and soul of the party, then my pain would go away. This is an absurd oversimplification, but so, I think are the studies' conclusions.

Her second remark “You were dealt lousy cards” takes us to another pain expert's statement that risk factors are “childhood physical and sexual abuse, painful losses, and job dissatisfaction.” Apply cognitive behavioural therapy! Am sure it helps: forgiving and letting go helps anyone. It's one of the lessons back pain taught me, though my thinking was not that trauma caused the pain, but that I hadn't the room in my head for both.

No, there's a simple, humane explanation why so many of us had trauma and now have back pain. Stress travels the same pathways up the spine as pain, so does digestive distress. When my digestion, crippled by 25 years of non-diagnosis of celiac disease, plays up, my back is always worse.

Any situation where you live in constant stress and fear sensitizes the stress pathways. By age 18, I felt mine were trigger happy and hypervigilant.

So can we be kinder to those of us with chronic back pain. The implication is that we are weak non-copers. That if we just dumped the detritus of our lives we would emerge, phoenix-like – and climb Everest.

Take the same observations, but draw different conclusions: trauma equals stress. What fires together wires together. Our stress coping pathways are strengthened by constant use – providing swift transit for later pain.The extra “gift” that accompanies trauma is a lifelong physical sensitivity to pain – a system that can't switch off.

But also a bonus: as Carl Jung said, “There's is no birth of consciousness without pain.”


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Weary and Heavy Laden

“Each person deserves a day away in which no problems are confronted, no solutions searched for.”

― Maya Angelou, Wouldn't Take Nothing for My Journey Now


Sometimes you just have to rest on the bottom. Not beat yourself up to be Pollyanna. Just acknowledge you need to stop awhile.

AIDS survivors were found to have one thing in common: they could say NO. So, sometimes we need to say no, not just to work's or friends' requests, but to the pernicious demands of the self-help culture.

We pursue happiness, exhort ourselves to try harder. “You can do whatever you set your mind to,” we are told. “Be whoever you want to be”. “Never give up!”

Well, sometimes, it is healthy to give up, to admit life's hard. One of the most wearing things about cancer, is that if you feel down, or worse, accept your fate, you are demonstrating a “cancer personality” and possibly preventing your “healing.”

The most exhausting thing is being bright and cheerful. Yes, it's better than being glum and what we should be aiming at in the long run. And I don't want to live as a victim – even a triumphant one. I just want to BE, human with my inadequacies, not a new, improved model.

Last week, one of the women at our local supermarket broke down in tears. I scooped her up and took her home, where she apologized through sobs for letting go. As her story emerged, no wonder she had broken down. False cashier's cheer for her job and forced optimism at home for her child while her brain squirrelled round: finding another apartment, caring for her sick mom, keeping her ex away.

“You need,” I said firmly, “to let it out, sit on the bottom; admit it is shit. You'll get your breath back, but for now you need to be able to be overwhelmed and let go.” Half an hour later, we were able gently to make suggestions. She did pick up her load again – as we all do. But that rest of despair gave her the respite needed to go on.

At the moment, with my diagnosis eluding even my hematologist, all the possibilities are tumbling about in our heads. It is like walking on jello; every five minutes everything shifts. We have done being breezy and optimistic. That was weeks ago. Now we are exhausted, my back throbs and aches while we wait for the next test. We need to stop trying and rest on the bottom awhile.







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Lines and Squares

Whenever I walk in a London street,

I'm ever so careful to watch my feet;

And I keep in the squares,

And the masses of bears,

Who wait at the corners all ready to eat

The sillies who tread on the lines of the street

Go back to their lairs,

And I say to them, “Bears,

Just look how I'm walking in all the squares!”


When I read The Healing Path by Marc Ian Barasch, what jumps out is “the cancer personality”. Blame the patient, I think defensively. And then I read on and I fit right in.

Psychologist Lawrence Le Shan observed that cancer patients often have, rooted in childhood, “a sense that their lives are governed by an uncaring implacable fate.” Bull's-eye!

I learned very early on that bad things happen and they happen to my family. My brother at fifteen months retreated from lively, questioning childhood into an autistic, barren no man's land. At 7 he was institutionalized, his fate decided by God-like figures. No wonder my greatest fear was “is God cruel?”

Growing up was lines and squares: I spent my life avoiding the lines in case … Lines? The rules of a society that I didn't understand. A society that locked up a small child, that dictated that girls were not educated, that being imaginative or “different” was dangerous.

Back then, I learned that grownups are never wrong. “Children need certainty,” proclaimed the text books. But what if parents aren't really certain and what they tell you is wrong?

I had a longing for God, in spite of my fear he was cruel. This was discouraged with tales of aunts with religious mania.

I wrote incessantly, turning out novel after novel. “Creativity is next to madness,” said my mother.

I wanted to go to university. “No point,” said my father. “Educate you to be dissatisfied.” Unspoken were the words “you'll be a housewife.” “You'll be a secretary,” said my mother, “And marry your boss.”

No wonder I felt as if I had been entered in an obstacle race – that no one had asked me if I wanted to run.

But I was strong. I coped – I thought successfully. As a military wife, I handled house moves single-handed, even with a 10 day-old baby. When my digestion broke down with undiagnosed celiac, I cooked family meals from memory, meals I couldn't eat. When my mother died, I was back and forth across the Atlantic like a ping pong ball. So why now?

Just before my diagnosis, I decided I had had it with pain clinics, therapy and medical marijuana. I have pain – so be it. I won't put my body on the rack anymore in the hope of relief. In the hope that WE, not I, have a better life. Oddly enough, my back and digestion responded gratefully. I felt better than in years.

So why now? According to the books, that is textbook. Get on an even keel and the body finally screams its message. What is it telling me?

I download The Journey, written by a cancer survivor who developed a method of reaching into her depths and listening to her soul. Down through the depths of feelings to an abyss – a hole one has circled all one's life.

The process is familiar, though more profound. Very like Focusing, which I have used for years. What came through as the deepest cry? Authenticity. From my reading, an almost universal need today. What of ourselves have we given up to survive, be accepted? Or be loved?

Energy pours through me, waves of emotions previously too dangerous to feel. Down into the void – through into peace. A journey to the soul. I feel my spirit flex and stretch. Feel vast and still, part of a larger consciousness. A greater peace. In my imagination my blood feels no longer the heavy sludge of lymphoma, but dances through my veins.

So, where are the lines? What are the squares? And who are the bears?


Note: I wrote this three weeks ago and put it aside till I got my bone marrow biopsy results. Just curiosity: would there be a change in my blood work after this release? My biopsy came back clear. My hematologist says he has only seen this once before in his entire career. The diagnosis stands because I still have abnormal blood proteins, but because the bone narrow isn't involved, the need for treatment has been pushed down the road.

Now affirming: “my cells are healthy.” Woa! Don't want the abnormal ones to flourish. You can never be sure where prayer leads. Larry Dossey reports an experiment on tomato seedlings that were prayed to grow tall. They outgrew their strength and dropped dead. So “my cells are healthy and in balance.”


More info:

The Healing Path: a Soul Approach to Illness by Marc Ian Barasch

Focusing by Eugene T Gendlin Ph.D

The Journey: a Road Map to the Soul by Brandon Bays



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Life Work


Think of a single word that sums up your values. A recent book asked that. I can't remember the name of the author and it has gone back to the library! However, it is a really useful question.

I looked at Hallmark words like peace or love. Then integrity, always a key one for me. But they were all partial. They lacked vitality. Not one encompassed my take in life. Peace is a wonderful word and one I repeat to myself many times a day. But it has to be balanced by action, otherwise I would be a zombie. St. Paul tells us love is the key, but how does it help when I am buying a car?

So to find a common denominator that would work across the board, I kept on reducing until what was left was life itself. Not a faint breath, but the enormous arc of life. The pulsing intelligence that lies behind creation. The tenacity that pushes a seedling to cling to a rock face and grow. The knowing trust of a newborn calf nuzzling for milk. The thrumming life that a teenager feels beating through their body as they lie on the earth.

Life crashes like thunder or lies like a milky lake at sunset. Life is joy, running into Mike's arms after separation, grief at parting. Life is triumphant. Bigger than I, but knowing I am one note in its song is enough for a lifetime.

The life force carries the wisdom of the universe, but the word has no juice, sounding flaccid – like a still life. Prana would be the better word, catching the force and flow of life itself as it pulses through our veins.

Pausing for moments to savour prana, I realize how punitive my Anglican childhood understanding was. Life was a trudge, hopefully with a passing grade on Judgment Day. Not much fun – in fact, pleasure, like sex, was disapproved of.

So now my question is: does each action grow life or stifle it? And the answer is changing my choices and, hopefully, my survival.


Everything that was, is, or shall be, is nothing but the different modes of expression of the universal force. universal prana is thus the Para-Prakiti (pure Nature), immanent energy or force which is derived from the infinite Spirit, and which permeates and sustains the universe. ~ Yogananda


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Focus Wheel

This really helped about a week after diagnosis when I felt very bleak. And defeated as it became clearer to me that the crucial factor in getting through this is going to be my attitude. How to get there from here?

Serendipity sent an article on the Focus Wheel down my feed that day. And it pulled me out of the trough to where I could DO something. Then the kids came to stay, so I never blogged it. This post is taken from my journal notes at the time.

I did my wheel, not to attract fame or money, but to get from despair to a place where I could see what is good and right in my life. This may not be by the book, but is how I did it. I was lying flat on my back with pain, so I used a mind map program on my iPad to create my wheel.

First step, decide what you don't want. How negative, I thought, but knowing what you don't want clarifies what you DO.

I don't want: a sullen, victimized long illness.

I do want: a well-lived, joyful life.

Next list all the assets, things that lead towards that goal:

Mike, Thea, good kids, good friends, good doctors I trust, enough money, good diet, self-knowledge, what I have learned from pain. OK, but sound flat listed there. No life.

Then turn each into an affirmation, which will be believable because I have already recognized it as valid. Affirmations so often fail because your subconscious looks around for proof, doesn't find it and throws the statement out. Suppose I affirm I am a good skier and my subconscious only finds pictures of me flat on my face, this won't stick. It also helps to anchor each statement with our senses. So:

I have a strong and loving marriage – feel a hug, see his loving gaze.

Thea is warm and affectionate within cat limits – feel her curled against me, purring as we go to sleep.

Good kids – hear the sounds of their voices. “Hi, Mum!”

Good friends – bring my closest to mind, smiling. Again, hugs.

Now we are coming to assets rather than affirmations:

Good doctors I trust – my GP's warm smile, the earnest humanity of my hematologist. I trust their judgment. So different from dealing with back surgeons.

Enough money – we can afford the extras, like help. And we have universal healthcare.

We already eat well. No processed foods, sugar, alcohol, gluten or milk. Lots of vegs. No traumatic diet change and meals are a pleasure.

Self-knowledge – am accustomed to working on issues; I used to teach stress management and counsel. If I have to dig within, I understand the process.

What I have learned from pain – I never thought that would be an advantage! But I am used to managing my mood, avoiding negativity, living outside pain.

As I really FEEL these advantages, I'm aware of my mood expanding. Life feels more hopeful, positive. I have a spring board from which to ACT. And this mood lasted all evening.




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