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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Howl for Hope

Wolves are butterflies? No one dreamed what happened when 41 wolves were returned to Yellowstone Park, where they had been extinct for 70 years.

They triggered a cascade of events that led to the regeneration of the area – even to the extent of changing the river's course. Watch The Wolves of Yellowstone Park and see! A magnificent butterfly effect!

If 41 wolves can bring flowers, trees, beavers, small animals, if their presence can lead to the river banks shoring up firmly, if they can bring abundant life, what could we do – just a few of us, with our actions? What could our small acts lead to down the road?

Suppose we sponsor a refugee family, or band together to save a park, think what we might be setting in motion. More and more I see that we are all one, interdependent and entwined. The air you breathe out, I breathe in. A simple throwaway act of kindness may be magnified and swell.

Similarly, the current anger and hatred we see nightly on the news is like a chemical spill polluting all downstream. A careless statement from the top can panic markets, lose jobs. A ra-ra rally has the crowd baying hate. Simple acts like cutting off a driver, taking a pile of groceries through the 1-8 item checkout, snapping at a fellow worker can spread like an oil spill of ill will.

If wolves can change a landscape, think what we can do.

 

 

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The Blood Clinic

Back at the Cancer Clinic for the result of my CT scan. The staff are so unrushed and kind. But what a huge difference it would make if they coordinated the blood work clinic with the patients.

The appointment sheet gives a time; no mention of coming early for blood work. Yet last time, when I saw the doctor, he expressed surprise I hadn't gone to get my blood work done first. So this time I am there early – to pandemonium. It's like Grand Central Station. No, I'm not fair. Everyone is sitting in defeated heaps, with no sign of movement.

I am checked in and given a device like a cell phone which will buzz when the doctor is ready for me – one floor up. Meanwhile, I sit holding a paper number and watching an electronic board. My bleeper buzzes, but I uneasily ignore it. For variety, I switch between the board on the wall at right angles to my left shoulder and the one above the door which is diagonally up to the right. Like a tennis match in hell. The old man sitting next to me rearranges his walker, saying his back is agony from radiation.

My beeper buzzes hysterically, but the flashing numbers don't move. I feel at fault. How early should I have come? Finally, my number comes up. My bleeper has shut up, defeated. I wonder what my waiting doctor is saying. The technician looks up my requisition and advances with a syringe. I idly muse out loud – how do they get the results through in time for my appointment, which is already half an hour overdue?

“Good thing you mentioned that.” She rushes back to her computer. She had been about to do last month's tests. No req. for today. She calls Sam, then Cheryl, then Mary. No blood work today. I go guiltily past the old man with his walker, having wasted 10 minutes.

We arrive on the upstairs floor, hand over the beeper. Then before I can go in to see the doctor, I am waylaid by an eager volunteer with a wellbeing survey. Do I gave anxiety, depression etc.? Well, not before the blood clinic.

After the appointment am then sent down to take a number and wait again for blood work. When I eventually get called, the req. has't come through yet. Also I am on the computer twice under two different names. Do we both have the same diagnosis? I am sent outside because I am holding up the queue.

Get called back and parked in a corner. Sam, Cheryl and Mary are called again. The technician tells me about the car accident where she broke her back. We have progressed to her new hip when the req. arrives. I bare my arm.

“Oh, no,” she says. “I have to copy it on to my computer.” They have two state of the art systems, which don't talk to each other. Surely ripe for a transcription error! Further complicated by the fact that the screen she is copying from has a very intense horizontal table, displayed vertically, so she is contorted at 90 degrees to read it at all.

Then the req. says viscosity, but not whether serum or plasma. More calls to Sam, Cheryl and Mary.

How early should I come in next time? Well, for chemo at least two hours. For lesser souls like me with a simple appointment? “I would come the day before.”

As for my results, they have led to further tests. The paperwork is in the system.

 

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Only Connect

 

It is an absolute human certainty that no one can know his own beauty

or perceive a sense of his own worth until it has been reflected back to him

in the mirror of another loving, caring human being.”

John Joseph Powell

 

The night before getting my CT scan result, I hit a low. A refrain was running through my head unproductively: this time tomorrow … ; in …… hours ….. You would think I was going to be executed. Mike was quiet. The silences spoke loudly.

Then, largely the result of reading about Acceptance and Commitment Theory, (see Living from Above) I was able to reboot. It worked so instantly and so well, that I want to share it.

I tunnelled up through the mud of gloom to ask: where's the strong Jane gone? Can I feel her? Can I reclaim her values? What is she like? What makes me know my life is well lived? How do I evaluate my days? Now that I have become a patient, to be talked over, wheeled around and referred to as “she”, who am I?

The answer comes: I am alive when I am connecting at a deep and genuine level. My day is well-lived, not because I have shopped, gossiped, fumed in line or upped my sales record. It is when I look deeply into another person's eyes and see a loving, enduring soul. When I can feel your essence and some part of me validates you – as you do me. Just souls doing our best.

No one, no circumstance can take that away from me. It is my birthright as a human being. It is practiced anywhere – at home, in a line up, in hospital. In fact, especially in hospital, where people are raw and real. When in hospital for emergency spinal surgery, I made two life long friends.

Years ago, I was at the lowest point in my life. I was in hospital for ovarian surgery and had just been told I would be very unlikely ever to have a child. My husband, a navy pilot, was at sea replacing a pilot who had been died in an accident; I had no visitors; and my mother phoned me daily, hysterically beseeching me to have a baby before Mike was killed. I was numb, just waiting for the final blow.

Yet, a young mother who had lost her baby at birth was put in with me “because you are the most cheerful person on the ward.” Was I? It was plumbed from despair. I sat holding her, night after night, reciting what I could remember from my Bible. “Let the little children come unto me and do not try to stop them, for the kingdom of heaven belongs to such as these.” She was a Catholic teenager, terrified her baby would be locked out of heaven because he hadn't been baptized.

Here was proof that I can keep my humanity whatever faces me. In my cancer community, I hear tell daily of the grace and courage of my fellow travellers. So Acceptance (because fighting is the road to misery) and Commitment to what I can do, the small steps that connect one soul at a time. In this lies our essence, eternal and strong.

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Crossing the Divide

When you're well, it seems like forever. You feel invincible, belonging to a favoured group who are not old, sick, disabled or confused. Like the young, you believe “it can't happen to me.” Though tucked away in a corner is the fear that it might.

So when I got a cancer diagnosis, I passed through the portals not only of the cancer clinic (with an astonished “I can't believe this is me” disbelief), I also crossed the rubicon between the world of the well and the strange country of the long term sick.

And what a rich country it is! I am humbled at the courage, kindness and generosity that abounds. Unlike the busy, every day world, we have time, sometimes stretching endlessly – yet precious because it may not be here next year.

The nurses and technicians shed their outside selves and show us warmth and kindness. I have WM (Waldenstrom's Macroglobulinemia) which is indolent, incurable, but treatable. It is also very rare: 5 in a million. It came without warning from a routine blood test. This is my new normal.

What I hadn't expected was the friendship extended by the WM forum. Strangers reached out to help me. Linda, my first time on line, emailed that she would walk the walk with me. And she has, tirelessly. I am learning to take with grace – really difficult when my instinct is to help. It's so much easier to give than receive.

There's an unspoken acknowledgement by the members of this new country – like a Mason's handshake. It's very similar to being an immigrant. You are changed forever, indefinably. You can't go back – and you recognize at a glance someone who is a fellow traveller.

I don't want to be here, but I also know that I am deepened and enriched by the company I am forcibly keeping. And in a strange way, I am blessed.

 

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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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