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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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!”

A.A.Milne

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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Spring from the Heart

The one gift of life is choice – or in terms of Genesis – free will. When this thought idled round in my head, my first response was, am I blaming the victim? Am I to blame for my lymphoma or you for your bereavement? Ouch!

Then I sat and thought, because this question is crucial to how I cope with the coming months. Viktor Frankl said that there was one last choice left to him in Auschwitz: how he reacted. So I am sure that how I react will change the quality of my cancer experience. It won't help to see it as punishment or sent by God. Perhaps as a message from my beleaguered body? My choice is to listen, with compassion, without blame.

My kind of lymphoma – very rare – results from my bone marrow making too many particular cells, so my blood will get thick and sludgy, hard for my heart to pump round my body.

I go inside and ask what is this a metaphor for. I see my blood trudging round my body. My heart glumly, gamely, pumping away: “I should do this. I ought to keep going.” A familiar echo: “I must, I should, I ought, I have to.”

“Should” is the opposite of generosity. It tars each gift, belittles every action. I have a choice: to give from a willing heart, to paint the canvas of my remaining life with courage. “I should be brave” is not enough. Life itself deserves a whole-hearted embrace. My blood cells should dance and ripple like a stream over stones. It is my choice.

 

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Walking Tall

Could see right from the start that attitude is a major part of how I go forward. Research shows that “difficult” patients survive longer than “compliant” ones. Even to the extent that UK's poor cancer survival figures are in part attributed to the British being so polite.

So many cancer metaphors are aggressive – fight, beat etc. While I can see the value in this, everything in me doesn't like waging war on my poor beleaguered body. I am a pacifist through and through, but not I hope a patsy. Theresa May described herself as “a bloody difficult woman” and look where that got her.

So, what could be a beneficial state of mind? I finally settled on triumphant. That doesn't mean I consider I have won; this form of lymphoma isn't binary. You don't destroy it; you just manage it. Perhaps I could model myself on the teacher in class, who you know as soon as they enter the room won't stand any nonsense.

NLP (neuro-linguistic programming) taught me the value of understanding and choosing my most resourceful state. That is, how you stand, walk and project when you are at your most together. Not the rainy days where knees are week and feet dragging. It stood me in good stead when my mother was dying. Each morning, before I got out of bed I remembered three times when I had been strong and effective (there had to have been some!). I got right into it: how I felt, breathed, moved. Then when the memory was strong, I anchored it with the word “strong.” Throughout the day, at every new hurdle, I repeated “strong” and back came that positive, “I can cope” feeling.

How to adapt this to deadly illness? Get up each day, looking out with interested, humorous and appreciative eyes, asking myself, “How would I act as a winner?” Walk tall and enthusiastically – how many times have I marched across Home Depot, reciting, “Walk as if you are not in pain.” So move as if whole, feel life energy.

This will sound so trite to anyone on chemo or in severe pain. I know and respect that. This won't be easy. But it is all I can do at this point to position myself psychologically as well as I can. So I will give it a go.

 

More info: British Patients too Polite to ask for Best Treatment – link

PS I looked for images of walking tall and all I got was giraffes.

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Listening to Life

Listen, my heart, to the whispering of the world.

That is how it makes love to you. Tagore.

 

How to pass a day? Mike spent this morning researching my lymphoma with the impossible name. He put together a comprehensive document – which didn't make cheerful reading. After thanking him profusely, I sent him to his drawing board, his best way of getting to his Zen spot.

So how to be in the face of all of this information? I remembered Tagore's words and listened to the whisper. Music. The iPod on shuffle – and it chose well: two tunes from my youth when life was golden, spread out before me like petals on grass. A gift to my body as I gently swayed to “Younger than Springtime.” Then the music I listened to over here in Canada while our eldest granddaughter was being born in England. All memories of hope and joy.

Sun pennies on the pool, the trees flow with the breeze. Life is talking, soothing, comforting – if I let it.

 

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The First Day of the Rest of my Life

Idly scrolling through Facebook. We are both flat and tired today. Then I clicked on the most delightful video of five-year-old Rilee Thorber dancing to raise awareness of dwarfism. She is so joyful, I smile along with her and realize her courage – from a totally different viewpoint. Not that of the compassionate outsider, but deep within I recognize I have been invited into an exclusive circle of those who cope long term and she is one of the members.

The shock has left me very weary, so am left resting with my thoughts. They ring a mantra in my head: I have cancer, over and over – as if trying it on for size. Perhaps a necessary part of acceptance, but I would rather stop. Also, it seems very important that this doesn't become my identity. So, of course, I put great effort into squashing it, diverting myself, reassurance – all the things that don't work.

Serendipity, my old friend, takes over. Picking up my kindle, the top book is Overcoming Unwanted Intrusive Thoughts by Sally Winston. Aha!

It gibes with my own experience: arguing with an unwanted thought doesn't work, instead it validates it as worth attention. Nor does asking for reassurance from a friend; the thought is now worthy of debate. It grows sticky and now it is impossible not to think of the white elephant in my head.

Yet, telling myself to ignore my thoughts, or explaining why they aren't true (which this one unfortunately is) feels virtuous. So does calling on God. Wow! The thought is now huge, blocking everything else and taking all my energy in the virtuous fight.

Don't give it the dignity of attention, says Sally. Accept the feeling of alarm and urgency; it is my amygdala dutifully warning me of possible danger or misstep. My amygdala has a pathetically low IQ, but is extremely diligent. Let the feeling pass. As in meditation, just observe.

“Float above,” says Sally. Of course, this is what I have been doing for pain. I know how to. For the first time, I realize how pain has prepared me for this. Odd gratitude.

Move above and beyond my pathetic self, like one of those videos where the camera zooms away into space, so you become a dot on the ground. And it is so small, when I don't look out of my eyes. When I am not the centre of my universe, but one stitch in a tapestry. With the honour of joining so many who are walking the same path – and those who have gone before.

Thank you, Sally.

 

More info:

Five-year-old girl with dwarfism dancing to shake it off – link

Overcoming Unwanted Intrusive Thoughts by Sally Winston

 

 

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