Welcome

I started this blog back in 2011 for anyone who, like me has been pitched into a life-altering situation.   Mine started with 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.

Two years ago, a rare cancer diagnosis turned life upside down, forcing me to question my life and meaning.  Pain was the gift that readied me to cope with cancer.  Cancer has been the gift that has forced me to learn lessons that have deeply enriched my life.

Olympic medalist Clara Hughes, when talking of her depression, said she did it “for the one person.”  So this is written, not for me or the many, but hoping that one person may resonate with one post.  That my path may run alongside yours for part of your journey.

Please feel comfortable to contact me if you wish at pathwaythroughpain@gmail.com

 

 

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Living Above

“You are mourning,” I said softly to my friend.  “You are mourning your life.”  

A cancer diagnosis or  becoming disabled is a shock!   The earth under one’s feet shakes.  What you thought you were or knew doesn’t work.  As my friend Martha said when she got her lung cancer diagnosis, “I feel as if they’ve rearranged the chairs on the Titanic.”  You look around at a grey cell, doors slammed shut and not a window in sight.

I didn’t write much about it when it happened to me.  We are raised not to complain. I didn’t want to become someone my friends didn’t want to run into, carrying a cloud of gloom.  I know people like that and they drag you down – that I have written about.

But this time, it is not me.  It is my dear friend and watching her valiant attempts to acclimatize to her new reality brings back those bad days.   They need acknowledgement.

 Both of us face incurable cancer and disability, so I can extrapolate some general thoughts from our experience.  First, we neither of us have the possibility of coming out the other side, which makes a huge difference. One can put up with chemo if there’s life beyond.  We and many others, from what I read on the blood cancer message boards, have no chance of a good future, just chemical delay.

Second, which hits hard, so many activities we used to use to cheer ourselves up are gone.  Or they were for me. Crochet affects my neck. Reading only on a kindle because of the weight of the book.  Cooking: nothing that requires standing and stirring. Walking, cycling, dancing, swimming, skiing: you must be joking.  Sitting through a movie or shopping with friends? Not a hope.

Which is why I didn’t labour my losses in my posts.  But now I see from the outside, my friend, and also many other friends, crippled with pain, patiently enduring.

Yet, as I assured my granddaughter, I am happy.  There’s a deep valley to cross, but on the other side is a deeper peace than I could have imagined.  And a joy like sunlight on my heart. Hard won, but secure because it is not dependent on outside events.  It is spun from within and therefore priceless.

If anyone had asked me 10 years ago, how to get from darkness there to sunlight here today, I wouldn’t have known where to start.  It seemed impossible and I was so afraid: I just got by because Mike was there for company and to help with the things that were now so difficult.  A lonely and precarious position. I didn’t know what to do, but had to try something, anything.   

So what helped?   It isn’t PC nowadays to have any religious beliefs.  Most of my friends are ardent atheists or just don’t care.  Like so many others, I am a closet believer – but in what? Not any regular faith, but in some undefinable intelligence, a strength and surety.   Every morning, before I get out of bed, I ground myself in its peace. I found a book on meditation – serendipity – that suggested four words: peace, light, love and compassion.  So each day I immerse myself in these qualities: “I am peace, I am filled with peace, I am surrounded by peace – and so on with light, love and compassion. It sets my sails for the day and remains with me as a touchstone.

Then each day, I set something to look forward to, usually the evenings when we watch TV.  Just to say, “Tonight, “The Good Wife”, which is our current series, gives a wriggle of anticipation.  We do NOT watch murders or anything that lowers the spirits. I learned that when Mike was carrier flying: I could cope with the partings and the danger, but not misery-filled books or movies.  

And every day, we frequently tell each other how lucky we are.  Because when you think of it, most of us are lucky in some respects.   We have each other – huge. So many are alone. We have survived to 80!   Back when Mike was a navy pilot, I hardly dared believe he would be alive next year, let alone into old age.   We have kids, after two major surgeries just to get pregnant. And grandkids, six of them, eager with life, even if on different continents.   We can afford food and a roof. And Coronation Street is on tonight.

Yes, we are lucky.   Cancer and pain recede in the face of such blessing, which brings me to the secret of living with pain – living above both it and cancer.  I know I can’t change either, so where my being lives, the ME of me, can’t dwell in my body. That would be a life of fear and pain.  

Where would I have to BE for my pain to be insignificant?   A place so much bigger than I that my pain is dwarfed How wide a view that problems become meaningless?  So that I see not my narrow point of view, but a greater whole. It was very hard at first, like pulling feet out of mud, but like desperation breeds tenacity.  I inched my way to peace.

Now, with years of painful practice, I can easily move from my constricted everyday world, up and away till the world is a bright marble and my pain a small dot.  Oddly, when I reach this plateau, it is familiar. It is the same place I reach through my meditation on peace, light, love and compassion.  

In the words of John McGee: “I’ve trod the high untrespassed sanctity of space, put out my hand and touched the face of God.”

One Minute Meditation on Four Words by Sebastian Dackow

High Flightby John Gillespie Mcgee, Jr

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Round Peg in a Square Hole

How does one develop a sort of resilience to being a misfit and

remember it is a good thing?  Love, love, love… Sigh…”

 

So began Emma’s Facebook post.  Many friends weighed in with support because she is truly an amazing, if idiosyncratic, person.  And I wonder how many more of us are out there – immediately identifying with her, hoping that being a square peg is really OK and how to live with it.

We misfits live as if we are second language speakers, half in the patois of everyday life – and half in an invisible world with different values, hearing different voices.  Aged 22, I heard the song “Stop the World – I want to get off” and immediately resonated. And then worried: does that mean I want to be dead?  

Which I didn’t.  Life was so vivid, I could feel its sap in my veins.  Life was eager, keen and bright; but I was confused because all around people were striving for what seemed empty goals.   Even the religious, who I expected to have their sights set high, seemed often to miss the point.

Norman Vincent Peale wrote of a woman he brought to Christ.  “And now she owns a corset factory.” A Californian minister explains why she thinks it is reasonable to ask God for a getaway cottage.  Am I missing something? Or plain bonkers as I watch the world merrily spinning into climate change.

How many misfits are we, reaching for an oasis we can’t define, blundering, blinkered through Las Vegas while dreaming of the stillness of the soul?  Is it a good thing, as my friend writes, to misfit this life – and if so what can we offer in a world so differently oriented.

I can only answer by looking at what Emma does for the world around her.  She brings an artist’s eye. And, for a moment, with her, I am no longer boxed by hard lines, but see beyond to infinity.  There are few who live by the soul and we are all richer by touching their skirts.

I have a vision (memory?) I yearn for: a shepherd on biblical hills in the hugeness of night, at one and at peace.  Misfit, Emma? No a gift.

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To See or Not to See – That is Gratitude

Some years ago, we visited San Francisco, a longed for trip.  One of those times you stop in wonder: “It is today, not any other day, but today and I am here.”  Time stops. For a moment, life is perfect.   

But my back hurt from the pain of the journey so badly I could hardly think coherently.  I was stumbling and only wanted to lie still, alone.  

“You go out,” I told Mike.  “Take your sketch book.” And I lay, blurred with tears, defeated by pain.  “Help me!” my soul cried. And into my head came the words, “Look for the beauty!”   

Our motel room was chipped and cheap, opening onto a concrete stairwell.  Yet there was a geranium on wall outside, defiant against the grunge, its colour pure and true.  I lay all afternoon, tears drying, looking at that flag of hope.

geraniums-5530.jpg

Today, looking at the sullen snow, I remembered that geranium.  How it was worth being alive just to see that perfection of line, that splash of colour.   

So I collect those moments of perfection, when I can say from my heart that it is worth having been alive to see just that silhouetted tree, or to hear a note of music like a water drop.  And if I weren’t here, that moment of perfection wouldn’t exist.   

I had never thought before that being alive means processing each moment sensuously.  Do you remember lying on grass as a child and feeling life pulsing through you with the urgency of youth?  Or watching clouds?

So now as we drive or as I prepare supper, I take a moment to treasure my sight.  Or really listen to the note of a bird. I couldn’t do this unless I am here, stopped and still, processing this moment.   Just noticing is an act of gratitude.    

Photo by Kaboompics .com from Pexels

 

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Modern Nero: Fiddling while Australia Burns

Scott Harrison, Prime Minister of Australia, took his kids on holiday to Hawaii because he didn’t want to disappoint them.    Meanwhile Australia burned.  

He thought any fairminded parent would understand.  Well, this one doesn’t!    It was a teachable moment – and he missed it.  He could have taught them that the captain stays with his ship, that duty trumps playing in the sand.   He could have modeled leadership, but instead they learned to run away.  Leave behind suffering and loss.   People are losing their homes, their futures.  Don’t stand with them, down not hold the space, fly off and have fun.
What happens when their father is one day old and in need?   Never mind, he’ll be glad we are away having fun.

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The Right Way

“On no account brood over your wrongdoing. Rolling in the muck

is not the best way of getting clean.”   Aldous Huxley

 

 

“I am not wrong!”  Except that, of course, I frequently am – aren’t we all?  In fact, so many friends have confided their private battles against shame, that I can only think “so it’s not just me” and that we need to be kinder to ourselves.

 

By wrong I don’t mean making a mistake; who hasn’t, frequently? No, my friends are talking of a sense of being deeply personally wrong – beyond the pale or redemption.  We are beating up not the action, but the kind of person we must be to have done …..

 

So what happens when we approach interactions neutrally?   If instead of defending our wrongness, we relax?

 

“Of course, you were upset …..  it was thoughtless of me.” Yes, I did something that inconvenienced or hurt you. There was no malice in my act.  Generously understanding where it leaves YOU oddly puts me in a place of equality, not hopelessly wrong. I am still a decent, if overwrought or thoughtless, person.  

 

All the emotion has gone out of it.  Yes, we are thoughtless, inefficient, inconsiderate at times, but not deeply BAD or fatally flawed.  Bad is spiteful, lying, cheating, manipulating or hating. Most of us muddle through, doing our best, failing at times, yet picking ourselves up again.

 

And YOU are due my recognition of your value, your feelings and your hurt.  Freely, openly, generously. 

 

Just starting from the assumption that we are basically good immediately deactivates our defence mechanism, which then makes it so much easier to see the other’s point of view.   Allows us also to see you are also good. Makes an apology an acknowledgment of our imperfections and also our goodwill. A small healing of both you and me.

 

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Purpose – Full

I purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, 

to have it make some difference that you have lived and lived well.” 

― Ralph Waldo Emerson



Sick, sick to my stomach and exhausted with a bone deep fatigue.  Day after day. I know I am not the first to have radiation and that others have done it with greater grace.  But now it is just me and rolling nausea and not enough strength to imagine it passing.


The one good thing about this cancer is it forces me to find a deep reason for going on.  You can’t drift through cancer therapy. You plod and if you have enough spirit left, you use the dregs as a spur.  “Get on with it, girl! Put on a good face.”


But that isn’t enough.  I need a gut deep faith.  No good sitting this out like a rainy day.  I have to assert, deep within, a belief that life is worth it even if it rains every day.  Even when there’s no spark of energy left inside to ginger up my spirits.   


Standing (or lying) here, post chemo, post radiation, where do I go, not treatment wise, but psychologically and spiritually?   My oncologist shrugs his shoulders, “I can give you no prognosis. I have no idea what will happen.” My cancer is so rare, no one knows.  Just that I am at the end of the treatment line.  H


This is partly choice: they suggested chemo for life.  I refused. The rest of life through a chemo brain fog?  All wit and interest removed? Simply, if I don’t have my intelligence, questioning, human connection to others, then I don’t have life as I value it.   So that avenue is shut. I can’t have more radiation. So it’s the lap of the gods.  


That is why it is vital to have a belief in something greater than I.  Is it passing on the spark of life to children and grandchildren? Because Life itself is precious and we hand it on like an Olympic torch.  Or is it my belief in a greater goodness, built from individual acts of grace and courage. And I am privileged to contribute – if I choose.


All I know is we live and die by something larger than ourselves. Our last choice grace.



“It does not matter how long you are spending on the earth, how much money you have gathered 

or how much attention you have received. 

It is the amount of positive vibration you have radiated in life that matters,” 



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They Also Serve

They. also serve who only stand and wait.”

John Milton


Thanks to those who have held the space for me. This is my effort to give back what was so generously given to me when I needed it.  

And to acknowledge how hard it is for those watching.



What do you do when you can’t do anything?  When the person you love is far away?

Normally we gather, hug, bake.  What do you do when you can’t sit together or touch?   When you know they are overwhelmed and need fragile space just to keep going?  When you know even the weight of your caring will be too much?

When it was my turn, the family was so kind – call after call.  I felt loved but exhausted; please I can’t talk about it again. I will sink below the weight of repetition.  The onus of, in turn, cheering them.

So what is really best to do?  The kindest? All I know is I need to keep together.  Not add my grief to the universe’s load. Nor unload onto friends and drag them down.    It’s not my journey and I need to hold my ship steady, ready to serve.

Prayer seems intrusive.  All I can do is hold space and that is hard as by nature I am a solver, a doer, a hugger.   Rain drips; we sit beyond words, each trying to keep afloat.

My cortex is silenced.  Affirmations, reasoning or exhorting to “cheer up” go nowhere.  This sadness Is beyond logical engagement. It is deep and limbic, the old, old brain.  How to comfort this ancient brain? Thinking won’t reach it, but what about the senses?

I go to hang out laundry and it comes to me.  Find one speck of goodness and offer gratitude for that.   Not cerebral goodness, not blessing counting, but concrete, tactile, visual goodness.   The tiles are smooth under my feet. Calm and stabilizing. I remember a lifetime of hanging clothes in sunlight or under the stars.   It is earthy and grounding.

One step at a time.  The cat purring on my knee.  Not big gratitudes; they feel too immense, unreal, because how can I believe life is good, when there is such  suffering across the water.

One step of gratitude, moment by moment, building a bridge from despair to life.  Because all I can do is create my calm and hold space for when I am needed.

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